Half Pill More of Primidone is Working Just Fine

I hesitated to start taking more of the Primidone for the very first time on our Date Day, just in case it left me loopy, but I decided to take a chance. It was just this sort of extra exercise that made the Primidone wear off faster in the afternoon. I had no problem with it at all. Our very first Estate Sale involved a long walk up a steep driveway to get to the house, and yet I was still steady yesterday evening. So that appears to be the correct dose for me right now. As I gradually increase my activity level, I may have to adjust it again. but for now - it's great!!

I'm still bubbling over such great news and wonderful relief from the jerks, shakes, and twitches. Hubby has been teasing me about how much I'm talking now. He drawls, "It sure was quiet around here," and sounds just like my Daddy - always finding some way to say something negative. He is teasing, and we both laugh every time he says it. It's a shame my Daddy never learned to look on the bright side of things, but I learned my lesson well from him and don't want to ever be that way.

And now I really do have something positive to shout from the rooftops!!! God has blessed me with a wonderful new lease on life, and I can't give Him praises enough!

GREAT NEWS!!! - My New Diagnosis Is ESSENTIAL MYOCLONUS!!

I finally got to talk to a nurse on Dr. Watt's staff today, and I now have an official diagnosis that I can take to insurance companies. I do not have Parkinson's, nor anything in the Parkinson's Family. I have what is called Essential Myoclonus. It is not a progressive disease, which is the best news of all.

They do not know what causes it, but the Primidone is doing a remarkable job of controlling my movements. So I look forward to continued improvement and taking my life back! I asked if it would be OK to add an extra half tablet in the mornings, because the dose wears off in the afternoons, particularly if I am more physically active or stressed. She gave me the usual precautions about not using it if I became overly drowsy, be careful about driving, etc., but they are leaving the timing and use of the half tablet up to me. I am to start it in the mornings and then move closer to lunch if I want to try it there after a week or so.

I have been telling everyone about how wonderful I have been feeling since I went on the Primidone and how truly blessed by God I feel. I have strong emotional ties to lots of online Parkie friends, and I would only wish that they could have such good news from their doctors very soon. I guess I'm going to have to add another section for research about Myoclonus to my sidebar now, and come up with a better name for this blog. I have been very active in the Parkinson's PatientLikeMe forum, but I imagine I will be spending more time in the Essential Myoclonus section of WeMove.com now.

I lived in their world for almost three years, so I have a perspective into what it is like to have Parkinson's that most people can never have, unless they actually have the disease or are very close to someone with it. That is a valuable perspective that I do not want to squander. I'm not sure how God can use me in regards to this, but I'm sure in His good time it will become apparent.

I have tried to chronicle my journey from the very first days of the initial diagnosis of Parkinson's, through all the struggles I had with my digestive system fighting against the PD meds, to modifying my lifestyle to keep me safe, to the onset of tremors that soon turned into horrible shaking. I've tried to present an accurate picture of what was happening to me emotionally, as well as physically.

I am proud of this blog and hope that it will continue to be helpful to those who read it. May God use me and this blog to good purpose.

Praise GOD from Whom All BLESSINGS Flow!!!

I really am doing great, and it's wonderful to be able to say that. Some days I don't have any abnormal movements at all, and on others I have only tolerable ones. I have been on cloud nine now for a couple of weeks, and it looks like I'm here to stay.

I have noticed that as I become more active and expend more muscle effort that the medicine wears off sooner in the evenings. The Movement Disorder doctor said to call him back in two weeks, and he would discuss raising the daytime dose maybe a half pill at that time. Sounds good to me. He just doesn't want me to zombie out on the Primidone, and I don't want that, either. He mentioned physical therapy to help with the slow walking, but that just does not seem necessary to me. I know how to be safe, and as I feel better I am naturally increasing my physical activity. I'm so used to listening to what my body is telling me that I can judge pretty well when it's time to quit.

My house certainly appreciates the extra attention I have been able to give it lately! There's plenty more to do, though. I have about two years of clutter to wade through. When you feel as bad as I have and as unsteady as I have it's just easier and safer to ignore a lot. Hubby has kept us in good meals and clean clothes, but the "stuff" has piled up.

We celebrated our 44th Wedding Anniversary yesterday. I wrote a long post about it on our Yesterday's Memories blog, so I won't repeat that here. The fantastic thing is that even though I was exhausted at night from all we did during the day the last two days, I feel fine today. My muscles are definitely adjusting to more activity.

So I leave this post with a positive outlook and a heart full of thanksgiving!! Whooopppieeeeeeeeee!!!

Mouth Twitches, But That's All

I got up earlier than usual this morning, as I normally do on Fridays, so I can map out a route for us to use to go on our Estate Sale, garage sale, thrift store hunt. Even though it was 4:30AM, my mouth was already twitching slightly. The rest of me was still, though, so it's not really that I am complaining - just documenting.

We did make some good purchases, and we always enjoy each other's company, but it was awfully hot, and we ended up coming home a little earlier than usual. The mouth twitch continued to increase as the day went on, although it is nowhere near as bad as it is without the Primidone.

A very nice lady who was having a yard sale saw me using the cane to help myself get down her driveway, and asked me if I was recovering from leg surgery. After the slightest of pauses, which I am sure no one else would have noticed, the words came out of my mouth for the very first time. I told her I had a Movement Disorder. She went on to tell me how she had had two hip surgeries and had used a walker, and now used a cane. It was a very friendly, normal sounding conversation, but those words coming out of my mouth were momentous for me.

My hand and foot did not shake, my shoulder did not jerk, and I was reasonably stable, particularly when I used the cane. I am selective in when I use it, but I'm careful. After all, we have seen first hand what happens when an older person falls.

If I know a restaurant is going to be easy to maneuver, I leave it in the car. Hubby gives me a reassuring hand to go up and down curbs. But if we go to a sale, I always use it. You never know what the inside of a house will be like, and yards can be uneven or steep. We've stopped at some of the same gas stations and restaurants often enough to know which ones have handicap accessible bathrooms, and which ones don't, so I usually know if I need to take the cane with me to help in the bathroom.

We do have the Handicap Placard, but I try not to use blue spaces unless I am having a bad day. I have used them a lot in the last six months, but not since I went on the Primidone. I look forward to many more days of using regular parking spaces!!

Primidone is HELPING!!

I've been trying to get to this post for several days now, and other things just kept getting in the way. Also, it looks like I have good news, and I didn't want to celebrate too soon.

I finally got in touch with Dr. Watts' UAB Neurology team, and he sent in a prescription for Primidone on Friday a week ago. I took my first dose Friday night, and was pretty well looped all day Saturday, and almost as drugged feeling all day Sunday. But I was NOT jerking, and my hand was still! My walking was very odd, like I was on a boat or a dock. When I stood still I kind of wobbled, instead of shaking, as if it were slowing the speed of the movements down and increasing the amplitude, if that makes any sense. That lasted for several days, but then by about Wednesday I was only noticing the good effects. As long as the dose was in me, I did not shake, wobble, or tremor at all. Ignoring the slow walking, I was back to NORMAL! Even my handwriting improved. I was not depressed, but trying not to celebrate too soon, because the next step was to add a morning dose, and I wasn't sure what was going to happen then.

I started taking a second dose in the morning as well on Monday. I do get a little woozy feeling for just a little while about an hour or two after I take it, but other than that, it seems to be helping a lot. I have a slight mouth twitch today, the third day I have had two doses, which I did not have Monday or Tuesday. But that is the only symptom other than the slow walking that I have! I do have to be more careful with steps - it's like I can't tell where my feet are.

I am not depressed at all with the Primidone, the way I was with the Clonazepam, and I am very hopeful that this medicine will work for me. I am still doing research on this medicine, but its brand name is Mysoline, and its primary use is in controlling seizures. They assured me that there were no signs of seizures from my tests, so this is what they call an off label use of the drug.

This medicine has a very long half life, and that means there is still plenty of the drug in my system when it is time to take the next dose. Actually, when I was taking just the one pill, I took it at 7:00PM and it did not completely wear off until four or five o'clock the next afternoon. I am also on the lowest dose, so there is room to go if I get used to the medicine and need to up the dosage.

Did you see me doing the happy dance????

I am so thankful to God for his tender mercies!!!!!!!!!!

On Days - Off Days

I am definitely less depressed since gradually cutting the dose and frequency of the Clonazepam, but it has not been very predictable. Thursday I went until sometime after 5:00PM without any facial tics at all, and then spent the whole evening jerking like crazy. when I'm like that, my face contorts, my left shoulder jerks forward, and my foot dances a jig uncontrollably. I was on a half pill only at night then. Friday I jerked and twitched all day long, also on the half pill dose. I also had a huge startle reflex while we were out on our Date Day, something I haven't done to that extent in some time. Now today, Saturday, my mouth is all quiet and well behaved so far. I did not take even the half pill of the Clonazepam last night.

I had called twice to UAB, trying to get them to go on and send in the prescription for an alternative to the Clonazepam, because our drugstore would be closed from Friday evening until Tuesday. They did not get it called in, nor did I get a callback from a member of Dr. Watt's team. The receptionist did tell me on my second call that Dr. D was sick. He is the member of the team who apparently is the one I will be seeing the most. So, I have to assume that is why nothing was taken care of.

I have found that I can at least mask what my mouth is doing in public by chewing sugar free gum. I've always been a gum smacker, so I am trying to get out of that habit, and reach a point were I can slowly chew and control the horrible twisting, twitching, and jerks my mouth does so much.

The right foot continues to do its own little dance, which makes me feel unstable as I stand still or walk. Going up and down steps is harder when there is no way of knowing what my foot is going to do at the moment. So I am still using the cane everywhere except here in the house and at church. The few steps I have to deal with at church are entrances, and hubby is there with me going in and out, so I can skip the cane and feel a little more inconspicuous.

I should have taken the last dose of the Clonazepam last night, but I thought it would be wiser to see how I would be today, rather than being even more unpredictable than usual for church tomorrow morning. Since I've been OK today, it looks like the decreasing dosing was done slowly enough to not leave any withdrawal symptoms. But there is now way of knowing how I will be in the next minute, let alone tomorrow for church.

I continue to stay busy searching and posting on our Lost Toy blog, and have been able to help quite a few families, thanks to all the folks who read the requests for help and search for them, too. If you have never been to that blog, you ought to go read some of the stories and try to help them. It's a very satisfying feeling to help them. And I continue to add to our online Plush Toy catalog, too, so I stay very busy.

Oh, and I mustn't forget to mention that it looks like our Centipede grass is actually beginning to come up in the composted side yard. I worked for a little while this morning in between the shrubs and the driveway, digging that section up and trying to get as many of the weeds out of that section as I can. We can plant Centipede here until July, so I should have it ready long before then.

Take each moment as it comes, Rosemary - a lesson I am being taught daily.

Misery Loves Doesn't Love Company

I am so counting the days until my appointment next week! The depression level I am feeling is so pervasive that I am not fit to be around right now. Hubby is doing what he can to leave me alone and not trigger another crying spell. Or worse, make me mad. We had an actual verbal fight last week, which is most unusual for us.

I knew when I worked in the basement while he was gone that he would be livid when he found out, but I did it anyway. I just needed to be "normal" for a little while so badly that I didn't care that it would cause a fight. He won't let me go down in the basement, because he is afraid I will fall. We do have a horrible mess down there, that needs cleaning out terribly, and I am much more impatient about it than he is.

I hate depending on someone else to get something done that I should be able to do myself. I hate being sick. I hate shaking. I hate being off balance. I hate being seen in public jerking all over the place. I hate using the cane and looking like each step is going to be my last. I hate looking old. I hate not being able to do any work in the yard long enough to accomplish anything.

But most of all I hate this horrible feeling that they are not going to find anything physically wrong with me, and that I am going to end up on some psychiatrist's couch or on mind altering drugs. This Clonazepam is bad enough. I looked up the side effects, and depression and loss of balance are right there in black and white. I'm taking a med to stop some of the very things it will give me - doesn't make much sense does it. I still have the strong mouth tics when I am the least bit upset, and my face is definitely beginning to contort, with right eyebrow high, left eyelid drooping over the eye, and mouth pulled to the left. It looks like I have had a stroke, and can't control the left side of my face, but it's actually quite the opposite, the muscles on the left pull it that way.

I did finally recuperate from the left leg weakness and pain left over from the EEG test, but my nerves have yet to settle back down from the super loud MRI last week. I'm crying at almost everything right now, and can't stand noise at all. The loud TV commercials are bothering me so badly that hubby has started hitting the mute button when they come on. Last Sunday, for some strange reason, the young fellow who runs our sanctuary sound system had some of "his" kind of religious music piping in the auditorium before church. As far as I know that has never happened before. People were talking louder than usual to be heard over the extra noise. I sat there for a few minutes, and then told hubby we had to leave. I just couldn't take it. So, we were some of the first folks at our favorite Chinese restaurant last Sunday. I went to church that night, and it was fine. But that morning was horrible.

I am not sleeping as well as I was, either. Some nights have been good, but there have been a few of the kind I used to have, where I am up at 3 or 4 in the morning. I am not using the TAP, as I just don't think I can deal with it right now. Somehow I just have to make it through until next Wednesday.

I've completely rearranged one of the bedrooms we keep part of our plush lovies stock in, and I have worked some in the yard, trying to get the area ready to plant grass where I worked on the lasagna compost all winter long. I'm trying very hard to stay busy and focused on something besides me, but it ain't workin'!!

Wow! That was quite a rant, even for me!! But it felt good to put it down on paper and acknowledge it. It's real, and I'm not exaggerating. Hopefully, I will be able to look back on this post soon and be thankful it is all over. I always cling to hope, even in my darkest despairing times. God is good. AMEN!

Had a New EEG Test Yesterday

I had my second EEG test yesterday, but my reactions to it were considerably different from the one I had two years ago. Back then, my Neurologist was trying to decide if I had Parkinson's or not. My only symptom at that time was a very labored, slow walk, that he called Bradykinesia. I did not have any problems with the EEG test at all.

Things have changed a good bit since then. Now I have lots of tremors, jerks, and facial tics, that only get worse if I am in a stressful situation, or cannot get my mind "somewhere else". I have discovered that when I am deeply concentrating on something, such as writing here on the computer, that the movements are quieted down considerably.

But put me in a situation that is the least stressful, or in one where I am just sitting with nothing actively going on, and I turn into the hurky jerky girl. Church is the usual place that happens. The only way to stop it that I have found is to go into a meditative state, finding some minute crack or spot on the wall to give my total attention to. It spaces me out, I don't hear the sermon, but at least I am not bothering all the people who sit behind us.

And now I know that it happens during EEG tests, too. With nothing to occupy my concentration, following her directions to do fast open mouth breathing for 3 minutes to make me hyperventilate, and some very uncomfortable series of strobe lights that made me feel even more stressed, there just wasn't any way to stop the jerks. The harder I tried to be still, as she had asked, the more I moved. She finally gave up and said at least it would let the doctors see what my brain was doing while my body was doing its own thing. She did tell me to open my mouth and stop pressing my lips together, so my mouth trembled and pulled to the left the whole time, too.

It took 45 minutes to complete the test, and I was exhausted the rest of the day.

The funny part was my hair!! They do not use the scull cap method, so each of these electrodes was stuck to my scalp with something like KY jelly. And there were lots of electrodes - maybe in the 20's? When she was through and told me to look in the mirror, I looked like something from a Monty Python movie. I smoothed my hair down as best I could, but would have loved to have walked out just as I was, so hubby could get a kick out of it. If he had been the only one in the waiting room I would have, but it was a very busy place.

We were set to drive some distance to a family funeral after the test, so I had anticipated the hair goo and planned to stop at any franchise hair salon along the way and get my hair washed. So that was easily enough taken care of. I am glad I knew to expect that, as it could have been a real problem if we had been running short on time. I didn't appreciate having to pay $12 just to get it washed and blown dry with no styling, but there wasn't anything else to do. I had also brought a complete change of clothes and shoes, so I would not have to take the test in good clothes.

We did get into a situation of some very expensive parking at UAB, though, that just added to the very expensive day. We parked in the closest parking deck to the Sparks Clinic at UAB, but they would not validate his ticket, since we had not used the "right" deck. Of course, they had not told me that I should park in any particular one when they called to tell me the appointment time. So, instead of costing $4.50 to park, it cost us $15.00!!! We were not at all happy about that!! UAB will be hearing from me about that today!!

When we did get to Cleveland, the little town in north Alabama where the funeral was going to be, we ate at a very nice looking local restaurant. Not surprisingly, considering the way the rest of the day had been, their prices were high. So, we took the lunch special of the day. The vegetables were great, but the meat was lousy. The waitress seemed genuinely shocked when hubby complained about it.

I really was worn out by the time the graveside funeral was over, so we begged off on eating at the church with the family and headed straight home. This was my sister in law's side of the family, so I really didn't know that many people there anyway, and I am not comfortable in unfamiliar social situations. I have always been that way, but it's gotten worse now that I jerk and twitch so much.

So we had a full day, one that I am glad to have over with. I have an appointment with Dr. Watt's team in May, with an MRI to be schedules before then, so I will have to wait that long to find out the results of the EEG. Should be very revealing, since I displayed the full range of all my jerks, tics, smirks, and shakes while the brain's electrical activity was being graphed.

I am optimistic that all these tests are going to show more than they did two years ago, and that they will be able to decide what is wrong with me with more certainty. Of course, I know there is no such thing medically in life as a certainty, but I can rely on God to get me through it all. Patience, Rosemary, Patience.

Re-Testing Peripheral Neuropathy Monday

I see the MDS specialist the first week of April, so it seemed like a good idea to ask for a Neuropathy test before I see him. When I first saw my Neurologist, it was at the suggestion of my Orthopedist, who had concluded that my super labored walking was not caused by lumbar disk pressure.

He sent me to Lakeshore to have the Nerve Conduction Velocity Test, which uses patches like those they stick on the chest to check for heart problems. They pass an electric current and check to see how long it takes the message to register between the patches. It's uncomfortable at the time, but not really too bad. The other test is called Electromyography. That's the one where they poke electrodes the size of needles in your muscles, and it is supposed to show how well the muscles respond when the nerve is stimulated. That test is not at all comfortable. I actually had little pin prick size blood spots all over my legs when that one was over.

Anyway, the results showed definite Axonal Peripheral Neuropathy, mostly in my right leg. Because I was having trouble walking, and the test order came as a result of my Ortho dealing with my back and legs, he did not order the test to be done on my arms as well.

My Neuro was not at all happy that he did not have results for my arms as well as my legs, but he proceeded with the info he had, as my insurance would not likely have paid for a repeat test so soon.

So, I talked to his nurse a couple of days ago, and I'm scheduled to have the complete PN test battery Monday, at my "suggestion" - translate that as strong urging. This test is very uncomfortable, but it seems to me I need to get any tests done now, not wait and "waste" the visit with this very hard to see Head of Neurology at UAB.

I'm still experimenting with any variables I can think of. so, for the last four days I have not used the TAP dental device, which is to control my mild Sleep Apnea. The mouth tics started about the same time I started using the TAP, and I'm trying to be sure that this off and on again mouth twitching I've been doing is not being aggravated by the mouthpiece. Surprisingly, I'm still sleeping 7 or 8 hours a night, even without it. I think it did break me of the mouth breathing habit, which may be the cause of the relaxed jaw that was allowing my throat to close up during sleep.

I have noticed a definite correlation between the mouth twitches or tics and how stressed or tired I am. So they get worse as the day goes on. If I stop to think about them, I can stop them momentarily, but it's as if my mouth is determined to move, no matter what I do, and it soon starts back up again.

I figure I'll make sure Monday that there aren't any other tests I should have done, or repeat, before seeing Dr. Watts at UAB. I have to call his office to change my insurance information to show that Medicare is my Primary insurance now, as this is the month I turn 65. So I will talk to his nurse and see if they suggest any other tests. I have learned to be proactive in such situations. It amazes me that doctor's offices don't initiate this kind of pre-visit planning, but they don't.

By way of contrast, when we made an appointment with a financial counselor to help us with investing my inheritance, we received a huge packet of papers to fill out and a long list of documents to bring with us for our first meeting. That's the way it should be with doctors, in my opinion.

So, I will do what I can to document everything and have everything ready for this crucial visit. I can't even talk to someone about Long Term Care insurance, or anything insurance related, until I have a diagnosis. No insurance company in their right mind would take me on as a customer right now.

Tax Time is looming, and that's one thing I am dreading doing, but I can't put it off much longer. Oh, did you know that people who file an extension will NOT receive this stimulus package $300 thingy they all keep talking about? I have always filed on time, but I know some people habitually delay it, and might need to know that.

I continue to work to get our inventory of plush lovies online, and we have managed to help several families get replacements for lost toys lately, which is extremely satisfying. I'm also helping to beta test a new Mood community on Patients Like Me, and finding the charting of my own moods to be interesting.

I may be twitching, but I am in a good mood today, and that's a great way to end this post.

Twitching Along ....

We went on our usual Date Day today and visited three Estate Sales. Two were complete duds, but the last one was fun. It was an old country house chock full of a lifetime of collecting all kinds of odds and ends. We both enjoyed ourselves there, and then we stopped by our usual Thrift Store haunts in that area and found enough plush lovies to more than make the day break even. It's fun having a hobby that pays for itself, plus helps other people, too.

We had our second meeting yesterday with our new Financial Adviser, in the process of deciding how to best protect our future and be sure there is money in place to take care of our needs. Our daughters know that we do not want to go to a Nursing Home, but realistically we can't assume they will be in a position to keep one or both of us at home, the way we did our parents. That's way too much a burden to blithely assume someone else will tackle. That means considering Long Term Care Insurance and putting money aside to pay for in home care if at all possible. We've paid out enough over the last ten years to know what is involved, and it's certainly not cheap.

He went over several different options with us, and I was having a really hard time following the differences, pros, cons, etc. So was hubby. We asked lots of questions, some several times, and he patiently went over each concern. We left with several brochures, still not sure of what we need to do. We'll see him again next week, after he's had time to pursue the options we were most interested in. There will be a Long Term Care expert at our next meeting, too.

We won't be able to settle some arrangements until I have a diagnosis. After all, what new insurance company would insure me for anything when my own doctor can't say what is wrong with me! So, for now I am stuck with the insurance I already have, and we can only do the research for more appropriate kinds.

Did I say stress makes my twitches and tremors worse? Yep, you guessed it. By the time we left I was grimacing and shaking like I was keeping time to some peppy music. Hubby even asked me if I was doing my hand on purpose, because it really did look like I was in tempo with the CD. But no, it was my body doing its own little dance duet. I "cured" the nerves the way I always do ...CHOCOLATE!!! Hubby knows what to do, so we stopped and I gorged on brownies. Better than any tranquilizer I have ever used, as there is no spaced out feeling afterwards. ;)

Still Doing Without Parkinson's Meds

I've been off all PD meds now since Jan. 25, and not doing a whole lot differently now than I was when I was on the meds. That has several possible meanings, so it really doesn't tell me much.

It could mean that I don't have PD.
It could mean that I have PD, and I'm one of the people who is not helped by the usual or any meds.
It could mean that these symptoms are related to lumbar and cervical disk problems I have.
It could mean that it's all in my head - that it's psychosomatic.
It could mean I do have some kind of neurological problem that has not been determined at this point.
It could be that these symptoms are from the Peripheral Neuropathy that I definitely have.

Whatever it means, I'm certainly not able to decide, so I continue to count the days until I see the MDS in April.

I have had several "spells" lately when I felt particularly stressed emotionally. Trying to get our taxes done, and dealing with my insurance company about the TAP claim both increased my symptoms.

But the worst was last Sunday during Sunday School. Our teacher was not there, but had left an outline of what she wanted us to discuss. We've done this before, as we are quite capable of carrying on a discussion on our own. For some reason, though, we weren't getting anywhere with the discussion, so they asked me to lead it. These are people I'm used to being around, I taught Sunday School for a long time before I had to stay home with parents, and I taught school for 29 years. Leading it meant moving from the back row I normally sit on, and sitting in front of everyone, instead. Trying to lead the discussion up front brought on the facial tics big time, and I was shaking much more than usual. The worse it got, the more self conscious I became of them seeing me jerk and shake, and that made it just that much worse. I finally just told them I needed to stop, because it was making me too nervous. Time was almost up, anyway, so that was the end of class.

It took me a long time to relax after that, and just thinking about it now is bringing back some of the stress.

I really don't think my symptoms are psychosomatic, but there's no doubt that stress makes them worse. That's why I'm usually at my worst at the Neurologist's office.

I've just bought a new laptop computer, and this one has the built in camera. I took a notion the other day to video myself while I worked at the computer. It was a very revealing look at my facial tics, even when I am busy and not particularly aware of them. Maybe I should save some videos and take my computer with me to the MDS appointment. Well, probably not, but I may keep some for myself, anyway.

Hubby and I talked about how I've been doing lately, and he is in agreement that I really don't seem much different off of the meds than I was when I was on them.

I continue to use the TENS device for my neck pain, as well as the Cervical Collar that I pump up, so it works like traction. I'm also doing the series of neck exercises daily, but we haven't started back to walking yet. Hubby is having a bad flareup with his back, and he's just not up to it right now. So, I piddle with the compost heap a couple of hours a week, and I am still working hard to get all our toys online in our shop catalog. That involves a good bit of shifting and lifting of tubs of toys, so I am getting some exercise each day.

All in all, I'd say my quality of life is better than a few months ago, at least, and for that I am grateful.

Choking Episode

I'm still feeling remarkably well, considering it's been weeks now since I took a PD med. Reading a post on PLM makes me think it's at least in part due to the 6-8 cups of green tea I'm drinking most days. Taking the Turmeric and eating a lot of the Super Foods, mostly raw, probably has a lot to do with it, too.

I'm doing my neck exercises each morning, using the cervical collar daily for about 15 minutes, and using the TENS when I need it, so I'm not hurting much, either.

But I did have another choking episode this morning. It's a little hard to explain. I've done it several times lately with my own saliva, but this morning I had a mouth full of tea when a tiny amount just slipped down the wrong way. I wasn't really swallowing, either. That's what has been happening with saliva, too. I may not know how it's happening, but I sure know the results! I end up coughing and gagging for several minutes each time, and it hurts. I'm going to have to try to figure out exactly what is happening, so I can decide the best way to prevent it.

Other than that, I'm feeling fine. I worked really hard on our collectibles and toy inventory yesterday, and pretty well wore myself out, trying to get it stored in a more logical and organized way. But it was good exercise, and I'm glad I was able to do it. I also added another pile to the lasagna compost. That is slowly building up an area of rich material about 100 square feet or so and over a foot high. I haven't done any walking or Tai Chi for some time, and I do need to get back to it, now that I'm feeling better.

There was a good explanation of voice exercises on PLM, too, so I guess I'll try to add those exercises to my daily routine, too.

And, to finish this post on a positive note, neither one of us have a single doctor's appointment this whole month!!!

Still Doing Pretty Well

I'm still off the PD meds, and I just updated my Profile on PLM. My PDRS score, which is a way of quantifying symptoms, is better than it was a month ago. Of course it's still a very crude way to put a score on something that really can't be scored. If you've ever had to tell a nurse or doctor how you rate your pain on a 1 to 10 scale, then you know what I mean.

Church is still hard on me, as the pews are not comfortable for me now. They should be, as they have a very good cushion, but the space between pews is narrow, and the backs are hard. Turning to look at the preacher while he speaks still aggravates my neck, too.

I've stopped using the TEN's until I can talk to the Physical Therapist. They told me not to put it anywhere near my heart, which makes perfect sense. But there have been several times when I would get what felt like a pulsing muscle pull where my heart is in front, when I have the electrodes near the bottom of my shoulder blade. That would put the electricity near the back side of my heart as near as I can figure. So, I'm doing without it for now.

The cervical collar and the exercises seem to be helping, at least.

I have noticed several times in the last few days that I had had a painful burning sensation at different places on my feet. When I grab the place and rub it out, the place goes numb for a little while. I'm guessing that the PD meds have been blocking some of the Peripheral Neuropathy pain that is common with that problem.

I'm in the process of checking out a new laptop I bought this weekend. It was an open box item, so I only have 14 days to be sure there is nothing wrong with it. Plus, it came from a big chain store who had put all kinds of software on it advertising their company. It even had a user with a password they hadn't bothered to tell me about. I got around that by reinstalling the original disks. But now, I'm still uninstalling all that junk the computer manufacturer lets various software companies fill the computer with.

Most people probably pay the store to get the computer ready to use, but I enjoy the challenge. Fiddling with computers has always been enjoyable to me, but the most pleasure these days comes from the absolutely wonderful feeling hubby and I both get when we can help one of the families who have told their story on our Plush Memories Lost Toy Search Service blog find a lost lovey. And, to do that, I have to have a computer. So, to get the best thing - helping people - I get to do the next best thing - working on my computer.

So, I continue to watch how my body is behaving, and working on the computer, too.

Week One of my Experiment

OK folks, I've been off of all my Parkinson's meds for exactly a week now. I am definitely having more facial tics, but not enough to be the sole reason that I would go back on the meds. Walking is perhaps a little slower and more labored, but nothing like it was back when I was originally diagnosed. So, it remains to be seen just how much this changes this next week. My hand and legs tremors are more pronounced, but again not to a point that I feel compelled to go back on the meds.

And why, you may ask, am I doing this to myself? I am a scientist by nature, with a lifetime of dealing with challenges by using the scientific method. That means isolating the cause and effect relationship by changing only one thing at a time, and using a control as a comparison point. Obviously I can't do this experiment with all the steps in place, but I can try.

It would be so much easier if I had some way to accurately quantify the amount of Bradykinesia (slow movement), tics (involuntary facial muscle twitches), and tremors I have, with their locations, but this is all, by its very nature, subjective.

I'll continue with my experiment on me for a while longer, but I will try to live each day to the fullest, too, and not make this diagnosis all I am about.

So today we went on our Date Day as usual, and I had a wonderful time with my hubby. We just enjoy being in each other's company. I know we are in the house together for days at a time, but he's doing his thing and I'm doing mine. On Fridays, we spend the day together - really together.

Pinched Nerve in Neck is the Culprit

I went back to the Orthopedist yesterday for the follow up on the Physical Therapy I've been getting. He says I have a pinched nerved on the left side from a bulging disk. It's all part of the Degenerative Disk Disease problem I have with several different cervical and lumbar vertebrae. Anyway, since I cannot have epidurals, he is making arrangements for me to see a Physiatrist at the Lakeshore Rehab Facility. This place is a Paralympics training facility and very highly thought of. It will take several weeks before I even get the appointment, as the doctor evaluates all the info my Ortho sends him, before he decides IF he will see me or not! Talk about a busy doctor!!! So, it's hard to say who I will see first, the Physiatrist, or the MDS at UAB. Either way, I'll be getting help from some extremely well thought of doctors, and for that I am very grateful.

In the meantime, he gave me a prescription for the Home TEN's, which my PT facility can fill tomorrow. And he also sent me home with an inflatable cervical collar that provides traction. It's not at all comfortable, as I have a very short neck. Even the small size seems too big to me. I'm to take it to PT tomorrow, so they can help me learn how to use it correctly. Then maybe it won't be so uncomfortable. The directions say to inflate it for 10 or 15 seconds, deflate, then inflate again, for the first week, leaving it on for no more than about 15 minutes. Then I gradually work up to a steady 15 minute session with it.

The PT also told me the other day to make the neck exercises a consistent part of my daily routine, whether they seemed to be helping or not. He said it could be months before I really saw improvement, but to continue indefinitely with the routine they gave me. They're easy enough to do, so it's just getting it to be part of my day's routine that remains to be accomplished.

So, another piece of the puzzle has been explained, and now I wait to see the Physiatrist for an evaluation, as well as the MDS at UAB. Looks like this is going to be an interesting year, and I choose to believe it will be a year where I get help with my pain, stiffness, and walking problems. Who knows, maybe I'll even stop shaking!

Getting Back to "Normal" and Doing Some Soul Searching

I didn't have any lasting bad effects from the Physical Therapy last week, and my neck continues to improve. The pain is essentially gone, although I do still have some stiffness, and certain activities still hurt. At least I am not hurting when I'm doing nothing!

I continue to limit my reading about Parkinson's, but it sure is hard to intentionally stay away from Parkie friends I value so much. I had intended to stay away until I had the appointment with the Movement Disorder Specialist (MDS) in April, but I just couldn't do it. They are too much a part of my life now. If I am diagnosed with something besides PD, I plan to keep up with them anyway. I did stay active in the Alzheimer's caregiver forum I belonged to for quite awhile after our parents died, but I did finally quit visiting. Life moves on eventually.

I had another choking episode with a pill a couple of days ago that was really bad. That particular pill burns in the mouth, for some reason, if it doesn't go down right away, and it burned in my throat when it got stuck. I ended up with a very sore throat that lasted until the next day. So, again, I've gone back to doing what my Gastroenterologist told me to do. Taking the pills in apple sauce instead of water makes all the difference. I'm just being lazy, and dealing with a heavy dose of apathy right now. That's the only way to explain that it's easier to get a glass of water than to open the fridge and get out the apple sauce and a spoon. I have gradually stopped doing several things he told me to do, and I need to get back to the straight and narrow, for my own sake, and my hubby's. He worries about me so, often without good reason, other than he loves me. I must try to do all I can to keep from getting myself into situations like this that scare him so.

There was a post on Patients Like Me today that has me doing some heavy thinking. Basically, it was about how many Parkies avoid being around those PWP who are farther along in their stage of the disease, because they do not want to be confronted with their own possible future. I know I fit in that category, as I have intentionally not even tried to find a support group, and I have turned down some invitations to meet some online Parkie friends who live in Alabama, too. It's one thing to read how they are doing, but quite another to see it for myself. I know that's the way I would react, because I freaked out when I first looked at a free DVD I ordered that had real Parkinson's people doing exercises. I haven't watched it again. It does help, knowing that other PWP feel this way, too, but it's not fair for those who are farther along, who are missing the support they need. It's a reaction I'm going to have to work on, but not until after I see the MDS.

As it always seems to be, I get better in one area and regress in another. I guess that's normal for everybody, right?

Tummy's Back to Normal - PT Continues

It took a couple of days of very careful, limited eating, to get my tummy back to a normal situation, but I'm much better now. I've gone back to using the glycerin suppositories, and that's helping the most, other than to avoid some questionable foods.

I talked to my PT Monday, and told her my neck was much better, and that I was surprised they had not had me doing any exercises. She said they wanted to get my muscles calmed down first. So, she is going to add some tomorrow. I told her I wanted to be stingy with my visits, in case I needed to come for something else later on in the year, so she has me on Monday and Thursday now, instead of 3 days a week. Of course, that frees up our Date Day, and that suits me just fine.

I've been extremely busy trying to help all the families who have been asking for help find lost lovies, ever since the msnbc.com article came out about our Plush Memories Lost Toy Search Service. We had well over a thousand hits that first day, and our traffic is still about double what it was before the article.

I'm fighting the poison ivy again, and I'm not sure which one of us is winning right now. I have found that I can take one Benadryl at night, and that stops the itching until in the afternoon. Then I take a non drowsy type that the pharmacist said I could use. It doesn't work all that well, and by early evening I'm in misery. It gets in my blood stream or something, because I end up with rash and blisters in places that it should not be. Very delicate skin itches ten times more than arm or leg skin, I guarantee it!!!

I see the Dermatologist in another couple of weeks, so I will certainly ask him about anything I can do to dry it up quickly.

I think I know where the poison ivy is coming from. We've been bringing our outside cats in at night when the weather is below freezing. I am pretty sure I'm catching it from them. We had the brother and sister kitties neutered last week, and the little girl is somewhat frail, so we did not want to take any chances with the cold. The only other possibility is that the wood chips I'm using for the compost have the vines ground up in with it. Our back yard is just full of poison ivy, so that's certainly possible.

I'm continuing to limit my reading of anything Parkinson's related, but nothing has changed as far as my foot tremors and facial tics go. Oh, and I still haven't started back using the TAP. I decided to get my neck calmed down, plus see if the mouth tic was related to maybe my tongue moving around on the inside of the mouthpiece in my sleep, and it getting to be a habit. Well, the neck is calming down nicely, but the mouth tic is still there. So I think I can stop blaming the TAP for that.

Since I've been taking the Benadryl at night, I'm sleeping quite well, even without the TAP. Funny, the Benadryl is working much better than all the fancy sleep meds ever did, and I've tried almost every prescription they make at one time or another.

Physical Therapy Continues

I've been to a couple of PT sessions now, but all they have done so far is do the ultrasound and the TENS. My neck still gets very painful, if I have to sit for any length of time unsupported, such as at meals and at church, but already it is more flexible than it was. I see them today, Wednesday, and Friday. We went out last Friday for our Date Day after I finished the session, so I guess that's the way we will do it for awhile.

I goofed on my medicines last week and put the Sinemet and Lodosyn in the boxes, as usual. That's what my Neurologist told me to stop taking, and I forgot! No harm, really. But I made a big time bad mistake when I filled them this time. I put 4 diuretic pills in, where it should have been the colon relaxer pills!! I didn't catch it until that night, when I take the last Bentyl by itself. That's when I realized it was the wrong color pill. Makes me so mad at myself when I mess up like that. I'm just thankful I didn't get into trouble with all that diuretic in me!!!

I started this post on Monday, but the interview I did last week about our Plush Memories Lost Toy Search Service was included in an msnbc.com article that published yesterday. So, I spent most of the day reading requests from families who are looking for lost lovies, and writing everyone to tell them about being featured in the article. I was on cloud nine all day long. We were able to connect two of our searchers with families who had the toy they needed, and were willing to give or sell it to them.

I got mixed up on the timing for my meds again, but not too badly this time. It's just aggravating that it happens at all. I think it's a Freud thing going on - I'm just sick and tired of all these meds, no matter how much I know I need them.

I'm tired today, too, because I stopped using the TAP for a few days, thinking that would help my neck to settle down. Of course that also means I'm not sleeping as many hours. I figure do without it one week, and if that is going to help, that would be long enough to see a difference. I will use the TAP again this weekend, or maybe next Monday, one way or the other.

The excitement of yesterday has calmed down now, but I am trying to stay upbeat, hurting neck or not.

Back on the PD Meds

I considered not going back on the meds, but we will be out of town for Christmas, and it didn't seem prudent to have even a slight possibility of ending up in a strange ER. So I stuck with the original plan, and went back on the full PD regimin yesterday afternoon.

It was very interesting to see what my right foot did last night when I got ready to go to sleep in my recliner. It must mean something, and I wish I had a video of it to show my doctors.

The toes and ball of my foot cramp sometimes very painfully, and no amount of pressure will make it stop. Hubby will get up and stand in front of my recliner, and I will push my foot into his thigh, which normally stops the cramp pretty well. But last night, each time he released the pressure, the cramp started again. At one point, when I thought it had quit, I moved my leg away from the pressure, and my foot went into this exaggerated flopping back and forth, up and down, and sideways. I had no control over it at all. It didn't hurt, and it looked so funny that I started laughing. Hubby thought I was doing it on purpose, and was surprised when I told him I wasn't. You should have seen the look on his face. Then, in an attempt to stop it, I pressed my foot into the recliner. At that point, my knee started bobbing up and down, as if to say, "You can't stop ME!" It was so funny that both of us ended up having a great big laugh out of it all. And then, just as suddenly as it had started - it stopped all on its own.

So again, I ask myself - if not Parkinson's - then what in the world could make my body act like that????? The only explanation that makes any sense to me is that this is all psychosomatic, and there is nothing really wrong with me at all. No, I don't think I am going crazy, but the mind can play terrible tricks on the body. Just think about the Stigmata - that someone's palms could bleed. I know there is such a thing as hysterical paralysis, so I don't put anything past what my mind could be doing to control my body. Yes, I spent the last 10 years or so under great stress, taking care of parents and our older daughter. And, our daughter was hospitalized with, of all things, Peripheral Neuropathy! Not that my symptoms look like she did, but it does seem odd that I would be diagnosed with a neurological disorder not too many months after taking care of her.

I've had this conversation with myself before, about this whole thing possibly being psychosomatic, way back in August of 2006. And here I am, a year and a half later, still wondering.

Went Off PD Meds Temporarily

I had my last PD medicine around 3:00PM Friday, so I have been without now for about 48 hours. I don't know how much of those meds are still in my system, but I suspect there's not much left.

So, how am I doing? Well, my right foot particularly, and the left to some extent, are shaking some, particularly when I stand in one place for more than just a few seconds. The wobbling foot and knee make my whole body rock rhythmically. It's nowhere near as bad as it looked in Dr. S's office Wednesday, but I was very nervous then, so the exaggerated gait was not overly surprising.

My right hand takes a notion to tremble off and on all day long, but I can usually stop it temporarily by thinking about it. Usually, I just start to jerk somewhere else, when I get one tremor stopped by relaxing and concentrating on just that one area. The facial and tongue tics seem to be worse, too, with me off the PD meds. Generally, I see an increase in jerkiness that moves from place to place as I consciously try to stop it elsewhere.

We haven't told anyone in the family about this possible change in diagnosis, and don't intend to, until it has been confirmed, and hopefully, we have a name for what is wrong with me.

I am going back on my Zelepar and Requip at 3:00PM today, and will stay one them at least until all the holidays are over with, and I am dismissed from PT. I probably will try going without again in February, just to see how I am doing then.

I wrote once before that having a neurological disease is like being in a clinical trial of ONE. It becomes very difficult to manage all the possible variables, and come to any kind of conclusion about the level of disability and what improves or aggravates the symptoms.

Doing Without PD Meds Today

I just have to answer this one for myself, before I drive myself crazy. I didn't take my last PD med last night, and I haven't had any this morning. It will take awhile for the meds to flush out of my system, but I need to know what I look like without them. It's just like most of the meds you see advertised on TV. Take this pill to stop twitching, but oh, by the way, this pill can cause twitching!!! So, if I didn't need them, they would give me the same symptoms as someone who did need them. Like I said, my brain is going around in circles over this, so I may not be making good sense right now.

I'm going to be in the house all day today, and I wanted to settle my mind on this before it was Christmas. It wouldn't do me any good to try to wait until after the New Year to experiment, because I start physical therapy for my neck on Jan. 2, and I sure wouldn't want to be playing around with my dosages then.

Of course I am still on all the other meds I take, for my digestive system, allergies, and bone density, plus the vitamins and herbs for general health and anti-oxidant benefits. Who knows, maybe that's all I need to be on, anyway. I hope to find out with this little experiment.

We will be spending time with our older daughter and son-in-law here in town Christmas Eve, and then we'll drive to our younger daughter's home to spend with our grandchildren and her hubby. Then, a few days later, we'll be driving back for our grandson's birthday.

I don't want this nagging doubt hanging over me. I want to enjoy this family time, and the celebration of the birth of Jesus, without obsessing over this, the way I have the last few days. So, it's do without today, and maybe tomorrow, too, or wait until February or so. And I just emotionally can't wait that long. Did I say that patience is not one of my virtues?

Two Ruptured Cervical Disks - No Wonder I'm Hurting!

I talked with my Orthopedist's PA the other day, and she confirmed what I already knew. The disks are bulging on the two cervical vertebrae that are degenerating, and that's what is causing the pain and stiffness. She doesn't want to make an anesthesiologist appointment to get an epidural there until I have a chance to talk to my Neurologist. I see him Wednesday. I did ask that she talk to my Neuro's nurse, rather than expect me to relay messages. It seems that the ER did not send any information to him about my time in the ER in September, when I had the horrible drug interaction with a steroid shot. So his nurse was completely surprised to hear I had a bad reaction.

So, we'll be going to the hospital to sign the release form to get the records to take to my Neuro.

I continue to be concerned and in prayer for several Parkie buddies on the PatientsLikeMe site, who have been diagnosed with skin cancers. One has Melanoma, and the other has Squamous Cell Cancer. Both were caught early, with every reason to believe they will be just fine. We are all praying for their recovery.

There is another woman on there who's brother also has PD, who had unrelated surgery, and to quote her - "his brain is mush." She said he has already tried to leave the hospital. When I thought I was going to have to have surgery back a few months ago, I learned all kinds of scary things about how difficult it is for PWP to have any kind of anesthesia without serious side effects. Also, it is very difficult to get hospitals to keep the PD meds coming on time. And that can mean the difference between being mobile and thinking normally, and not.

I wore my new "Sunday" shoes today, and I really like them. They help with my balance, they feel good on, and they are unobtrusive. I doubt if anyone has even noticed that I'm not wearing dress shoes. I don't feel the least bit self conscious in them, so if someone has noticed them - I don't care.

I am having one problem, though, that came unexpectedly. Last night I noticed a red itchy place on my wrist where the back of the Timex watch is against my skin. I had noticed that the skin was getting slick and shiny there a couple of weeks ago, so I started taking it off at night to go to sleep. Evidently I didn't heed the warning in time, as I now have a nice round ringworm there. It's been holding too much moisture against my skin, as it is fairly tight. It's a big man size watch, and not particularly comfortable, but I was willing to tolerate it, because it is so helpful. I may end up taking the band off, and just keeping it in my pocket.

I have not been able to do much exercising for the last month, partly because of my neck, but mostly because my DH over did it and his Sciatica is acting up again. I've been so busy working on the requests on our Plush Memories blog that I have been sitting still more than I probably should be. I've not been doing the Tai Chi, either. I know I really need to get back with a scheduled exercise program, the way I was before.

So, some things improve, while other new aggravations begin. Not so different than what happens to everyone, right?

Sitting MRI and a Full Night's Sleep

Well, I had my Standing MRI on my neck yesterday. I was having some strong tremors when I got there, so the technician changed it to a Sitting MRI! LOL!! He also put a lightly restraining halo on my head, and I managed to stay still through the whole 30 minutes. He said I did just fine.

Of course I won't find out anything until next week probably. I'm guessing that he will prescribe Physical Therapy again, particularly since I had such a terrible reaction to the Celestone steroid shot for my poison ivy. It depends on just how much damage he sees, I guess.

I have my Neurologist appointment next week, so I will be talking to him about how I should proceed. He may have me stop taking the Zelepar, as that seems to be the med that gives me the most interaction warnings. It does not play well with others!

I have an appointment with my Sleep Apnea Specialist next week, too. He should be dismissing me, hopefully. I am sleeping a full 8 hours almost every night now. And it has made a miraculous difference in my daytime sleeping. Actually, I'm not having ANY daytime sleeping problems, now. I can ride in the car for hours now, and still carry on a conversation with my DH. It's been years since I could do that. No more jerking awake at the computer from a few seconds of sound sleep out of nowhere. And, I am still on the Requip that gets blamed for this side effect. It wasn't the medicine after all for me. I was just sleep deprived!

It's so gratifying to see improvement even in one area of my health. And I have high hopes that Dr. J will fix the pain and stiffness in my neck.

Standing MRI Tomorrow / Praying for Friends

Hubby went off yesterday morning to his stint on Jury Duty, only to be sent back home. All the cases for this week had been handled through plea bargains, and there were no cases!! He had to call back last night to see if anything had changed, and they dismissed all the jurors!!

So, I got busy making arrangements to have my MRI done, and it is scheduled for tomorrow. I'm going to call my Neurologist's office today and see if they have any suggestions, because it dawned on me that with this standing MRI, I would need to be still for quite awhile. That was not a problem with the knee MRI I had done at this same place. I was not having foot and leg tremors then, but I am now.

It just seems like this PD manages to worm its way into every single thing I try to do.

I shouldn't be whining, though, as I am so much better off than some of my Parkie friends are. It grieves me, for their sakes, to read of all the pain and problems that PD is causing some wonderful people that I care deeply about on the PLM forum and on the PD blogs I keep up with. I keep them in the forefront of my prayers daily.

Hubby and I are also extremely concerned about a young teen aged, very gifted and sweet boy from our church, who is seriously ill. He went to the doctor Friday, but the doctor ran all kinds of tests and could not find anything to explain how sick he felt, and sent him back home.

Saturday he was in the hospital with pneumonia. Monday, he was put in ICU, and yesterday he was airlifted to the ICU at Children's Hospital in Birmingham.

This single mom has a Downs Syndrome child, as well, so attending to the needs of both of them must be putting all kinds of extra strain on her during this scary time. Thankfully, she has family living nearby who can help her out. We spent a few minutes with him in the ICU yesterday, only to come home and find out about the airlift. I talked to her for just a moment or two in the ICU waiting room at Children's last night, and she sounded OK, but I imagine she is faking a lot of that calm.

So, I feel very small and insignificant at times like this, with my petty little problems. All we can do is keep them in our prayers, and offer to help in any way we can.

Neck Pain and Tremors Causing Problems

I'm having two main problems from the Parkinson's right now - my very stiff and painful neck, and the much increased tremors, particularly in my right foot.

I'm sleeping with a very soft neck pillow, the kind that look like a C, and I keep it behind my neck while I sit at the computer, too. That helps me get to sleep and cuts down on the pain of just holding my head up. As the day goes on, the pain is getting worse and worse.

I am waiting to hear from my Orthopedist now about a standing MRI appointment. Hubby has Jury Duty next week, so that means I will have to wait longer to get it done. Can't be helped, but it's frustrating. He had to ask for a deferral back when we were taking care of Daddy, so he can't very well ask for another one because he is taking care of me. There is absolutely no way I could drive myself to the big city, as long as it's been since I've driven at all, even though I am no longer having the sudden sleep attacks. Maybe, if he is lucky, he won't have to serve for long, and I can get it done toward the end of this week. I sure hope so. The Methacarbamol and Mobic aren't helping enough to warrant taking the pills, so I quit taking them.

I've tried to continue with as much exercise as possible, but DH hurt his back again several weeks ago, and his sciatic nerve is acting up. He hasn't felt like going to the track, so I haven't been getting enough exercise lately. I am still working out in the yard the best I can, but it makes my neck hurt worse.

I'm also having considerably more problems due to tremors. For the first year of PD I didn't have any tremors at all. I was beginning to have small ones on Sundays mostly, while we were listening to the sermon. I finally decided that it was the uncomfortable pews, being too still too long, and being cold, all working together to stress my muscles. But that was a very mild nuisance tremor.

Since I had the steroid interaction that sent me to the ER, however, the tremor in my right leg and foot have been so strong that it makes walking and standing much more difficult. It still comes and goes, but when I get the least bit tired, as I do when I walk very much, that leg starts dancing a jig all on its own. I am having more problems with balance because of it, and I am beginning to experience what is called freezing. When I stand up, I have to kind of wait before I can get that pesky right foot to make up its mind to move where I want it to, it's so busy moving where it wants to.

One thing's for sure, I look like I have Parkinson's now, where I didn't until recently. Even my lips, tongue, and eyebrows are beginning to quiver. We had our portraits made the other day to give to our children for Christmas, and it was all I could do to hold the poses long enough to get a good picture. My face behaved, but not my leg. It took every bit of will power I had to make my leg be still. If I hold my breath and really concentrate, I can stop the tremors momentarily, thank goodness. I had to do that to get the X-rays on my neck done a couple of weeks ago, too.

So, things have been a little difficult lately, but I am still managing OK. I've been listing a lot on eBay, and we have had some good sales there. I've also been concentrating on trying to help as many people as I can on my Plush Memories blog. I've managed to find several lost lovies for people, and some of my blog readers there have found a few more. And, there have been a few times that we had the lovey they were looking for in stock, so I've made a few sales, and made some folks very happy all at the same time. That's what makes selling the plush toys so much fun.

We are still going to Estate Sales, but this time of year there usually aren't as many on a given Friday. That's OK, because I really can't manage more than a few anyway, as I tire out and hurt too much to go to very many. So, we have been doing a little bit of Estate Sale hunting and a little bit of Christmas shopping on Fridays. The only thing we absolutely have to go to stores for is all the Stocking Stuffer odds and ends that we give our children and grandchildren every year. And this year, we have been buying things for their stockings all year long, which is a blessing.

Thank goodness for Internet shopping! I've been buying most of our gifts online for years, but this year it has been a blessing. The black pair of Skechers came the other day, and I wore them to get our portraits made. They feel wonderful, and they do improve may stability much more than the Sunday shoes I have been wearing. Our daughters wear the same size shoes I do, so looks like they will be getting some hand me down shoes.

So, I keep going, making changes as I must.

I've Been Busy, Busy, Busy!!!

I've been so busy I hadn't even realized how long it had been since I posted here. This is our busy time of year for selling on eBay, so I've been spending a lot of time taking pictures, writing descriptions, and packing items to ship. Hubby helps a lot with the packing, and he goes to the PO with them, but the photography and anything computer related is up to me.

I also have been very busy on the Plush Memories blog, because so many people have written wanting help finding their child's lost lovey. It feels so good to actually help someone, and I have had some successes lately. But right now, I have something like 70 or so requests that I haven't posted yet. Every time I open my email, there are a few more requests. It's almost like being Santa, getting all the letters. But I'm not magic, and there are only so many hours in the day that I can give to it.

I am still sleeping a good 7 to 8 hours a night now. My alarm watch is waking me up at 5:00AM most mornings now. That's made a huge difference in how much energy I have, and I'm not even dropping off to sleep in the car like I had been. I haven't had the nerve to drive again, though. I have mentioned it to hubby, but he just doesn't answer me. Not so sure he thinks it's a good idea.

The elimination problems have improved slowly, and the Bentyl, prune juice, extra Metamucil, and the Glycolax are working. I bought a couple of books about IBS, and I'm trying to change some more of my eating habits, too. I had already made some huge changes over the last few years, thanks to the GERD. But now, my diet is even more restricted than ever. I eat the forbidden foods from time to time, like pizza, but I do it knowing that I can expect to have consequences. And I give in to the chocolate craving every once in awhile, as it's the best cure for being upset that I have ever found. Yes, I am addicted to chocolate!!

Wearing the Skechers shoes helped last Sunday, and I was not anywhere near as unstable in them as I have been in my regular Sunday shoes. They're not the kind of shoes anyone would normally wear with dress up clothes, but they are unobtrusive.

I'm to have a stand up MRI soon for my neck, as the pain and stiffness have not gone away at all. I'm waiting right now for my insurance to approve the test. The muscle relaxer and anti-inflammatory have not made a dent in my neck situation. The X-rays show the degenerated disks, and my Orthopedist knows about the problem I had with the Celestone. He said I may have to go off the Zelepar long enough to have the epidural in my cervical vertebrae. He said I would need to talk to the Anesthetist and work that out with him. Sounds fine to me!!!! If the epidural doesn't work, the only thing left would be some form of surgery, and that I will avoid as long as possible.

Hubby's sciatic nerve problem has flared up again, so he doesn't feel like going to the track to walk. So I've been getting most of my exercise by working in the yard. The Lasagna Compost is still growing, one pile of wood chips, fertilizer, kitchen scraps, and dirt at a time. It sure is tempting to turn the pile to see if it's working, but I have resisted the urge so far. I work in the yard several days a week for over an hour, so that's good.

So, I think I have more positives going on than negatives, and that means today is a good day!!!!

Sunday Shoes Are a Problem

I've been casually looking for some type of decent looking flat shoe that would give me more support than the ones I've been wearing on Sundays. Yesterday convinced me that I must make this a top priority this week. My best pair of decent looking shoes is a Dr. Scholl's pair that have a Velcro closure across the top. They fit quite snug to begin with, but the longer I wear them, the suede leather begins to relax, and I get less and less support from them. For just church, I can barely manage, but yesterday, due to a funeral home visitation that we attended (that means lots of standing around talking to people), I was in them a good part of the day. By the time we got home, I was so wobbly that I could barely take a step safely, even with the cane. As soon as I got in the house, I changed into my athletic shoes, and you would have thought I was a different person. My gait was immediately more normal.

So, this week I will be buying some kind of walking shoe that I can tolerate for "dress" shoes. I'm thinking a black pair won't call too much attention to my feet, hopefully. I do wear pant suits to church, so it won't look quite as bad as it would have with a dress or skirt. I started wearing pants to church when the short short skirt length came in style, and I just never went back to skirts. Too comfy, I guess, or me being lazy?

I tried on some Vegan Earth Shoes last week, thinking that might be a way to get a comfortable shoe that would support me, and not have the hard leather to bother my toes. But that's not going to work for me. Earth Shoes have what's called a negative heel. The heel is lower than the toes. Sounds odd, but it's perfect for PWP, as we tend to lean forward as we walk, and these negative heels counteract that. My problem is that I had to have most of the toe nail root on my big toes killed off with Laser some years ago, due to chronic fungus and ingrown toe nail problems. That means my big toes are basically unprotected. The slant of the Earth Shoes makes the big toes push up against the toe box, and I can't take that.

I ran into the same problem when I bought my athletic shoes. There are only a few brands that make a big enough toe box for my toes to be comfortable in them. So now, I've got to find a dark color walking shoe among the few brands that I can wear comfortably. Just what I wanted to be doing during Christmas Shopping crowds. Hopefully, my fingers can do the walking. I'll call the athletic shoe stores today that I have bought Asics and Ryka from before, to see if they have dark shoes in my size.

If I'm lucky enough for them to have something I can wear, we'll go to town today. While we're out, we'll probably try to do some of our Stocking Stuffer buying. This is the most fun part of Christmas gift giving for us. Our children get money, and now the grandkids are old enough to want money more than presents, so it's the stockings that get all of the attention on Christmas. We buy odds and ends all year round, as we see something that fits each one's personality and tastes. But filling up those big socks takes some creative off the wall stuff, to keep from duplicating what we have bought them in the past. Even our grown children and their spouses would be disappointed if they didn't have that lumpy stocking to reach into, pulling out one thing at a time, never knowing what sort of gag gift or useful doodad might be at hand.

I will think positively today, and look forward to finding some suitable shoes, plus enjoy shopping for the Stocking Stuffers.

My Thanksgiving Prayer

This Thanksgiving will be our first without any of our parents with us. It's the first Thanksgiving where our older daughter and her hubby take over the reins of being hosts, passed down from my Grandmother, to Mama, then to me, and now her. It's a reminder that as things change, they really stay the same. It's a reminder of how very important family is. And how important friends are.

It's also a reminder that I am no longer the caregiver, a role I held for much of my married life. But now, I am "the sick one" in the family. Parkinson's Disease does not have any cure in sight yet, but only ways to manage the symptoms, with varying degrees of success and often horrible side effects. It is progressively debilitating, which I'm daily reminded of, as I talk to so many PWP who are so much worse off than I am. I see it in the difference in what I can do now, compared to last Thanksgiving. But, I am so very thankful that I am still able to walk, talk normally, write fairly legibly, use the computer without problems, that my digestive problems are calming down somewhat, that I am sleeping better, and that I am mentally still ME. I pray that I can still say that next year.

You dear cyber friends, who have been a listening ear as I chronicled this journey, you will never know how much you have helped me deal with all that has been going on this last year. You have helped me give voice to my reactions to this disease. I can't thank you all enough.

I pray that you will all have as wonderful a Thanksgiving as I will, surrounded by family, wrapped in love.

Amen

Insurance Has APPROVED My Dental Appliance!!

I knew I was having a good day yesterday! When we came home from our Date Day, I had a lovely letter waiting for me, stating that the TAP Dental Appliance has been approved by my insurance for the treatment of my Sleep Apnea. I immediately called them to find out how to get my money back, as I had to pay my dentist for it up front. They are sending me the forms to take care of this. Whooopiieeeee!! I had anticipated some trouble with them agreeing that it was eligible, so that's something else I can cross off my list.

My neck is still very uncomfortable, but I made myself work on the compost heap this morning. I can't afford to give in to it, or I'll find myself able to do less and less.

I actually slept until my first medicine alarm went off this morning at 5:00AM! EIGHT HOURS OF SLEEP!!! That's the first time that has happened. I'm still waking up quite a bit in the night, but unlike before, I am able to drift back to sleep, even after I've been up to use the bathroom.

We ate at on of our favorite Mexican restaurants yesterday for lunch, but I was a good girl and got the Huevos Rancheros, which is nothing but sunny side up eggs with sauce on top. I scrape the sauce over to the side, eat the Spanish rice and the eggs, and just taste the refried beans. I did get a side order of the guacamole, which I really enjoy and finished off a bunch of the tostados they bring. I did NOT have the woozy feeling after lunch. So I'm pretty sure it's not protein that sets it off. It may be fat, though. I've basically been avoiding eating beef or pork for lunch. Most of the week we had the fake crab meat in a spinach and cabbage salad, and that does not cause the funny feeling, either.

I'm still having real problems with tremors and walking is not as easy, as I have this constant feeling of walking on Jello, because my legs are shaking the whole time I am walking. I'm using the cane just about any time we leave the house now, except for church. I'm trying to hold off using it there, because I get asked too many questions about how I'm doing. It makes me self conscious. I have started taking a lap robe to church, though, as I have come to realize that I have the hard tremors in church because I'm cold! I'll be making an appointment with the Neurologist next week, now that I've been on the new meds for awhile and the apnea and tummy are well under control.

Our older daughter and her hubby are going to do the honors for Thanksgiving Dinner this year. They both love to cook, which I never did, and this is their first holiday in their new home. I've always been the one to have the Thanksgiving meal, but I'm very happy to pass this tradition along to her, and just help out with the expense. Hopefully our younger daughter and her family will be able to come, too. With me not having to do anything for dinner, I can really enjoy the day.

So, things continue to come to good conclusions, and I remain optimistic. May we all have a great day today!!

Looks Like I Can Cross Sleep Apnea OFF My List!!

I have slept longer and waked more refreshed almost every night now for over a week with the dental appliance set to a very comfortable amount of lower jaw extension. I'm not having as much trouble with daytime sleepiness, except for the odd woozy feeling I get after lunch. So, unless something unforeseen happens, I am going to cross Sleep Apnea off my list of problems! That feels so good, to have one less thing going wrong with me.

My neck continues to spasm, so I guess in a way I have traded one problem for another. But I know that will either work itself out, or I can go to my Orthopedist and he will deal with it. If it has not relaxed by Monday, I will make an appointment. I suspect he will give me a prescription for some Physical Therapy. That's why I stopped going earlier this year when my knee was so painful. I wanted to be sure I had some PT time left, as my insurance only covers 15 trips a year, I think it was. Anyway, I know I have some sessions left, and that will be enough to get this painfully stiff neck relaxed, I'm sure.

I am in an optimistic mood, and have been for some time now. It feels glorious!! Even my elimination seems to be getting back to normal. The combination of Bentyl, the antispasmodic and mild antidepressant, the extra Metamucil capsule, and the Acidophilus, have done the trick. I still have gas problems, as I try to figure out which foods I will have to delete from my diet, but that is so minor a problem compared to what I was dealing with.

So, this is going to be a great day! I just feel it!!

First Impressions of Last Night's Sleep Study

I spent the night at the Sleep Study's Research Center last night. The room was luxurious, and since I cannot sleep on a flat bed, I specifically requested the one room they have that has a Tempurpedic type mattress on an adjustable bed. I have been interested in this type of bed for several years, thinking I might be able to get back into the bedroom with hubby, if we had one of those King size adjustable beds with the split. That way I could set my side for a recliner like position, while hubby could sleep flat. It's been years since we have slept together, and I would love to be able to have that closeness again.

Well, to say the least, I was disappointed with the bed. I tossed and turned all night, trying to find a position that would not make my back spasm. I ended up sleeping in this hole where my bottom was. I had just as much trouble with back spasms all night long as I do on a flat bed or the hospital bed I slept on for the first Sleep Study. I am glad I had the opportunity to try out this type of mattress and bed, as they cost up in the 3 to 5 thousand dollar range. It would have been terrible to have spent all that money and not be able to sleep comfortably.

As for the Sleep Study itself, I used the TAP dental appliance set to the easy setting I've been using ever since my neck muscles started spasms. I was hopeful that this smaller amount of forward movement of my jaw would be sufficient to stop the apnea. From his preliminary review of last night's data, my Sleep Disorder Specialist was very encouraged that the TAP is working just fine for me. He also agreed with me that my daytime sleepiness is from the PD meds, not from any underlying medical issue. This is the best possible news for me. He also said he would be glad to help with the documentation to help me to get Blue Cross/Blue Shield to reimburse us for 80% of the $1000 we spent up front on the TAP.

So, with my sore back and scalp full of gooey glue, I am happy. I fought the good fight to get used to the CPAP masks, and failed. I kept adjusting the lower jaw advancement on the TAM, until I put my whole neck muscles into painful spasms. Then, because of the pain, I backed off by several turns of the key. And it paid off, as I have evidently been able to get the apnea controlled at a comfortable setting.

Today is a GOOD day!!

7+ Hours Sleep Again!

I was able to stay in the recliner for over 7 hours last night! I'm still getting up several times to go the bathroom, but at least now I'm able to get back to sleep. I figure I'll try turning the screw to advance my lower jaw maybe one or two more nights, and that should be enough. I'm making the Sleep Study appointment today to see if it's controlling the Sleep Apnea properly. If it's not, I can always advance it some more while they monitor it, until I find the right spot.

I will get an appointment for the flu shot today, too.

I'm also going to make an appointment with a Dermatologist today. I don't want to ignore the fact that Parkies have a higher rate of Melanoma than the general population. Particularly since I've inherited a tendency to have lots of moles, some quite large, from both of my parents.

I've never been to a Dermatologist before, but I've learned my lesson and intend to get one who uses the hospital I like. There is a lady Dermatologist associated with my preferred hospital, and I think I would be more comfortable having every square inch of me examined by her, rather than by a man.

My inability to control my emotions is still a very aggravating problem. I started looking for some important insurance paper work this morning, and couldn't find it. I've kept up with that stack of papers for several years now, but when I started to make a phone call referring to it, it was nowhere to be found. After searching everywhere I might have filed it, then looking in places I should not have filed it, I fell apart. Blubbering like a baby and getting DH all upset trying to console me. This awareness of my mental abilities deteriorating right before my eyes is extremely disconcerting.

I finally did find the insurance papers I needed, stuffed in the file folder with the information about Pop's monument that I had worked on the same day I had been working on the insurance. This is some paperwork left over from when DH's Pop died, as we were the executor of his estate, too. Not long after he died my dear hubby had colon cancer surgery, so some of the less urgent parts of settling Pop's estate just got pushed to the background. Now I'm trying to finish all of it up, and get my Daddy's all finished, too.

So, all in all, it's been a productive day, as I was able to get done what needed to be done toward cashing the insurance policy, and I'm going to call and make the appointments just as soon as the doctors' offices get back from lunch.

Once this insurance policy is dealt with, the only things left to take care of are the monuments. Pop's should have already been engraved, so when I talked to the cemetery people, they were extremely apologetic that it had not already been done. And I haven't even started on getting Daddy's information added to the headstone.

I'll be glad to have all this paperwork finished! Daddy's estate will get out of probate at the end of November, and I need to be through with everything by then, so I can quit stressing over it.

YIPPEEEEE! 2 Nights in a Row!!

I slept for 7 hours last night and the night before, and I'm ecstatic about it! I hope that means I have found the right amount of gap on the TAP to take care of the Sleep Apnea. I haven't moved the bottom jaw in front of my upper teeth by much, but it may be enough for me, since it took quite a bit to get my bottom teeth lined up with the top ones to begin with, thanks to my natural overbite.

This appliance is fairly easy to get used to, far more so than any of the CPAP masks I tried. I can turn on my side without a problem, and I don't feel the least bit claustrophobic with it in place. It does require some rather vigorous jaw exercises each morning, to be sure the bottom teeth move back into their normal position. That leaves my right jaw a little sore for awhile, but it's not bad and it goes away by the time I eat breakfast.

Catching Up

My Gastroenterologist finally found an antispasmodic that I can take with all my Parkinson's meds! I've been on it for several days now, and things have improved somewhat. Of course, I've also added the Enteric coated Peppermint Gel Caps, Turmeric, and Acidophilus.

Well, I went to see Dr. S Friday, and he said pretty much what I expected him to. Since I was taking 4 prescriptions that had just been added in the last two weeks, in addition to the OTC meds that I have added, he wouldn't even discuss dosing or changing meds. He wants me to come back in about 2 months, after I have had the Sleep Study with the TAP dental appliance in place.

I had printed out a nice neat list of all my meds, with the times I take them, and I asked him to take a look and see if he thought I had spread the meds appropriately. He didn't see anything wrong with it, which made me feel good. It took quite a bit of time to figure out how I could keep certain meds away from each other, and take into account such things as having to be on an empty stomach.

I asked for the form to get a handicap parking placard, too. It's time. On good days I won't need it, but the way I've been lately, I will definitely have to have it available. It is sad to see that check mark in the Permanent Disability box, though. We have dentist appointments tomorrow, so we'll take care of it then.

I have been using the trekking poles for the last week or so, since I've been so wobbly. They make all the difference in the world. I'm wobbly when I try to walk unassisted, but I can stride along at a good clip when I use the poles. I walked a mile this morning, with the poles, even though I'm holding onto furniture and walls to navigate in the house. We bought one adjustable pair some time ago, figuring we could get another pair later, if we thought they were doing any good. We'll buy another set tomorrow while we're out, too.

I've made 2 quarter turns on the TAP device now, but I couldn't feel the change when I turned the key. Each quarter turn pulls my lower jaw out about the distance of half the width of a dime. I'm still getting about 5 hours a night, but I am not sleepy when I get up around 2 or 3AM. Of course I go to bed around 9:00PM. I still get miserably sleepy in the afternoon, but I don't take a nap. I'm afraid if I get in that habit that I won't ever sleep any longer at knife.

I could feel a huge weight lift from me when I got the call the other day from my Gastro to tell me to order Bentyl, also called Dicyclomine. If I had been there in his office, I would have given him a huge hug!!

So, I continue to stay busy, trying this and trying that, hoping to get the best results possible toward the goal of living as "normal" a life as possible.

Tummy in Rebellion

Warning: This post is not for the weak stomached!

Today did not go well at all. I followed my list of med times, trying to spread out all the doses as much as possible. I was careful to take the ones that needed to be with food, and the one that needed to be without food at appropriate times.

Before I could finish sipping my hot tea this morning after breakfast, I moved to get up from the sofa to go to the bathroom, and all the liquids I had taken in over the last hour - juice, water, and tea - all came up explosively all over me and the sofa, propelled by all this gas I have. It's as if my stomach is stopped up at the bottom and couldn't hold it all. That is called Gastroparesis, which means slowing of the emptying of the stomach, and is quite likely part of my problem. Really, every part of my digestive tract shows signs of weakening, so I shouldn't be surprised when something like this happens. That didn't make it any less upsetting, though, as DH had to quickly do a wash before all that acid ruined my clothes, while I took a bath, and we had to try to get our sofa cleaned up, too. And, I've stayed nauseated most of the day, just as I did when I tried to take Sinemet last year.

From what I've read from other PWP, many people get over the nausea fairly quickly when they start Sinemet, so I sure hope I will be able to tolerate it this time. I was much sicker with the GERD last year when I tried to take it than I am now, so there is reason to be optimistic, which is what I choose to be.

I see my Gastroenterologist tomorrow, and I have an appointment with my Neurologist next Friday, so maybe I will know what needs to be done soon to get the benefit, and not the side effects, of my meds.

Day One with Sinemet

Yesterday was the first full day of taking Sinemet again, as well as the Requip and Zelepar I was already on. I also had the Lodosyn and Sucralfate I requested from the ER doc, so that the Sinemet had a better chance of not making me so nauseated, the way it did last year. I started the morning hardly able to feed myself or walk, but ended the day almost back to my normal state. That was a huge relief, to say the least!!!

I also talked to my Gastroenterologist last night, but without any real conclusion to my gas and belching problem, or my elimination difficulties. He basically just asked me a lot of questions, most of which I could not give him any clear cut answer to, and told me to go on and make an appointment with him. I told him about the ER trip, and how I had been delaying my Neuro appointment, waiting for a diagnosis. He said to go on and make the Neurologist appointment, so I'll do that today. The fact that he has taken so long going over all the diary I gave him, plus his obvious quandary as to what is going on, leads me to think that a serious diagnosis is not jumping out at him as likely. That is what I'm going to assume, anyway.

The comical part of all this was trying to figure out a schedule to add in three more meds, taking into account all the restrictions on timing and eating and nearness to other meds that each one has. I finally wrote out today's schedule, and I'm taking one or more medicines today at 5AM, 6, 7:30, 9, 11, 12, 1:15, 3, 5, 6:30, and 8PM! And that doesn't count the Myralax that goes on my cereal or the glycerin suppositories I use! You should see the size of my pill boxes!! Oops, my timer just went off.... time to go take medicine LOL!

Well, I'm back. I just took the Sucralfate, a hog pill that I had trouble swallowing yesterday. Last night we cut it in half, but I still choked on it, because it's so dry going down. So, this morning I soaked the two halves in a tablespoon of water, and swallowed that. That was much easier, although I can still feel the dry scratchiness down my throat. That's one of my new stomach protector meds, so I have to take it, uncomfortable or not.

Each day is a new adventure with this PD, with some days being hopeful and others being miserable. Thank goodness I don't often get as down as I was Sunday night. I thank God for that!! And, I thank you for caring enough to say an encouraging word, too, as I surely need it.

Walking on Jello

The saga of drug interactions continues, evidently. I had a Celestone shot on Thursday to get the poison ivy under control, as a steroid shot always does the trick for me. My regular doctor has given these to me several times in the last few years, so I was not surprised when I woke up very nervous Friday. That's pretty much par for the course, plus they make it hard for me to sleep, too. So, I tolerated the shakiness Friday, and we continued with our Estate Sale hunting and went to see our younger DD for an overnight stay.

By Saturday morning I was even shakier, but we had a long way to drive home. I kept the way I was feeling to myself, figuring it would go away, and I did feel better after we ate a big breakfast. But, this morning, I was in really bad shape. I was shaking all over and holding on to furniture and the walls to get around. When my hubby got up several hours after me, I was worse. So, I called the Neurologist's answering service and the doctor on call promptly called me back. After listening to all this, he told me to go to the ER. He said he was concerned it was an infection (I didn't think so, but?) and they would be able to give me something to stop the tremors. So, we were off for the hour long drive to get to the ER, with DH trying his best not to show just how worried he was about me, and me trying my best to be still.

They took me right away, but it still took quite awhile to get the results from all the blood work they did. They did not find signs of any infection, and concluded, just as I had, that the steroid shot had precipitated this acceleration of my symptoms. So, armed with four prescriptions and orders to see my Neurologist this week, they sent me home.

So, at least for now, I'm back on Sinemet, which is the "Gold Standard" drug for Parkinson's. Since I was so nauseated with it when I took it for the Sinemet Challenge that confirmed my Parkinson's diagnosis, I had asked the ER doctor to also give me a prescription for Lodosyn, Carafate, and Phenergan. This is where my journal of everything that has happened since my diagnosis came in handy. I was able to show him in my journal that this is what my own Neurologist had put me on way back in September of 2006, when I got so nauseated with the Sinemet.

So, I'm typing this with a fairly steady hand, with all these extra meds in my system. I have an appointment tomorrow with my Gastroenterologist to find out what he thinks is going on with my digestive tract, and as soon as I know what is going on in that area, I will make an appointment to see my Neurologist.

This whole experience has been very upsetting to say the least, not only for me, but for DH as well. I hate it that he's having to take care of me the way he's had to. I hate it that I couldn't stop myself from shaking. I hate it that the ER guard came immediately, being so very solicitous, wanting to get me a wheelchair, as I was obviously so feeble looking, wobbly cane and all. I hate being this way. Today I got a glimpse of what the future holds. I hate it.

Impressions are Made

I went on a feverish research marathon on the internet night before last, and printed out a bunch of pages of different dental appliances for sleep apnea. I also found several pages explaining exactly how to talk to my Blue Cross insurance people in order to have a fighting chance of getting this thing covered by my medical insurance. This sort of appliance does not fall under dental, as it really has nothing at all to do with the teeth. I printed a list of possible side effects, too, just in case I had any problems. Troubles are always easier to cope with for me, if I know I'm not the only one having them.

So, armed with all my paperwork, I went to my own dentist yesterday and had a long talk with him. I really like him, and have been going to him for many years. In fact, he has crowned almost every tooth in my head! LOL That's just as well, too, as this appliance would not work if my teeth were not strong and in good condition. But, I digress. I was pleased with what he told me about how he did this process, but even more pleased when he brought my very own hygienist in to talk to me. It seems that she uses the very appliance that he was recommending! She explained that she could move her mouth around with it on, and that was something I was particularly concerned about.

She also told me about the exercises you have to do each morning when you take it out. If you don't do that, you will pull your bite all out of alignment, not to mention have a lot of jaw pain. That's not a problem, as I have to "exercise" my face muscles every day anyway, as part of my Parkinson's exercises. These are designed to forestall the mask look of PWP. We lose the ability to use the fine muscles that control facial expression, and these exercises are supposed to prevent that. I don't know if they will, but I intend to try, anyway. So, adding in some jaw and mouth exercises will be easy enough.

So, I did it. I had the impressions made and paid out 1,000 big bucks right there on the spot. That's not cheap, by any means, and it certainly means I'd better be right about this one!! If you thought I was stubborn about trying to get used to the CPAP, just wait and see how stubborn I can be with that much of my own money invested in it! LOL I really feel like this is something I need to solve the insomnia and resultant brain fog I deal with every day now.

Of course, I will do everything I can to get reimbursed by my insurance company, but I had already decided I would do it, covered or not. I did call the insurance company yesterday to find out what forms I needed to get this approved, and then my Sleep Disorder doctor's office to ask them to get Dr. A to fill them out. So I've started the ball rolling, anyway. I made sure I got the medical code for this appliance from the dentist's office, too, so I could use that in my argument for coverage, if needed. I would not have known to do any of this if it hadn't been for a dentist somewhere in California, of all places, who had a whole page explaining exactly what to do to get this appliance covered. Ain't the internet great?

While I'm waiting the three weeks it will take to get this in, I'll work to get the skin around my mouth back in good shape. Those masks have really done a number on my Acne Rosacea, with dry irritated patches all along my mouth on both sides down to my chin and across. My skin usually takes awhile to heal, once I get this irritated. I quit wearing makeup years ago, because everything broke me out, and I have to be very careful about any soaps or medicines I use on my face. That alone made me a poor candidate for cpap. Adding in the degenerated disks, which required that I be able to move around in my sleep, and I hope I can make a good case that using this "custom fabricated device" is a "medical necessity," as the insurance company requires. Both of those conditions are documented in my medical records, so I think they have a fight on their hands if they try to deny this claim. I'm loaded for bear, and ready to take them on, but, hopefully, they will agree and I won't need to fight them. I really don't need that extra stress. But, what will be, will be.

Getting rid of the cpap frustration and looking forward to getting the dental appliance has improved my mood considerably, so I remain positive that everything will work out for the best. I do covet your prayers and good thoughts that I will find adjusting to the mouth piece to be an easy transition.

The device I'm getting is called a TAP, which stands for Thornton Adjustable Positioner, and you can read all about it here and here, if you're interested.

CPAP Goes Bye Bye

We turned the Cpap machine back in to the Durable Equipment Company yesterday. I struggled for 6 weeks, trying to adjust to different masks, but I never could find anything that worked properly on my face, with my Acne Rosacea skin problems, and giving me the ability to sleep on my side comfortably.

So, I saw the Sleep Disorder doctor yesterday, and he agreed that I was just not a good candidate for the Cpap option for controlling my mild Apnea. He agreed that I probably needed to control the apnea I have, even though it's mild, because I still have insomnia, and it's affecting my thinking skills and leaving me exhausted every day. If it weren't for the Parkinson's, I don't think he would have ever put me on a machine to begin with, as I have an apnea score of 10. That's probably as low as it goes, from what I understand. That means 10 episodes of apnea an hour. But if I were to get a full night's sleep, that means as many as 80 times a night I would momentarily stop breathing. My brain can't afford that amount of disruption, as part of it is already working on 20% efficiency - the part that makes dopamine.

So, we've moved on to another possibility, and that's to get an oral dental appliance. I've been doing the research online, and this looks like a good alternative for me. I won't have deal with skin irritation, as there is no headgear, and since it doesn't depend on any kind of forced air, there won't be any leaks. It still means getting used to something foreign, in this case a mouthpiece specially molded to my teeth by the dentist. This contraption is designed to pull my bottom jaw forward as I sleep, much like the way a medic does when they give CPR. That opens the airway, and should prevent the apnea. The tension on the jaw is done gradually, so the body has time to adjust, at least that's the way it's supposed to work.

I have an appointment today with my own dentist, to see if he could do the work or not. His office said he could, but I'm not so sure about that. This sounds awfully specialized to me. But I trust him to tell me if he can or can't do it. If he can't, the Sleep Disorder doctor will send me to an oral surgeon to get one. I will need to have another sleep study after I've been on the appliance long enough to pull my jaw forward, but that's no big deal.

The other area of concern is that this is probably not going to be covered by my insurance, the way the cpap was. I will be talking to them today, to see if that can be worked out. I did find a very detailed explanation of what needed to be done to get an insurance company to accept the procedure as insurable. I'll be using what I learned there to help me fight for coverage, if necessary.

I am very thankful that we are financially able to consider something like this, insured or not. I read what had to be done to get Medicare to pay for an oral dental appliance, and it involved paying for before and after sleep studies, plus paying for the mouthpiece itself, and then trying to get Medicare to reimburse. That's an awfully expensive proposition. At least my insurance will pay for the Sleep Studies, if nothing else.

The biggest drawback, at this point in time, is that there is no guarantee that I can adjust to the feel of this thing in my mouth, any better than I did the cpap mask on my face. And this can't be turned back in for a refund, the way the cpap machine could. We did get stuck with the mask part, though. We're stuck with the expense of the dental appliance, like it or not. It's not like you could turn THAT back in for a refund! LOL

DH and I feel like it's a reasonable use of our money, though, so that's not going to stop me from trying this procedure. I'm not a quitter, and I intend to keep trying, until we find some way to improve the quality of my life.

Cpap Adventure Continues

I've been on the new full face mask for a week now, with one extremely good night's sleep, night before last. I've been awake since 12:30AM today, though. I woke up with air just jetting out from under the bottom of the mask, where the silicon soft part had come out of the plastic part of the mask. By the time I woke up enough to realize what the problem was, and then fixed it, I was wide awake. I'm also continuing to have problems with my skin. I'm ready to try the all over the face kind. That's not supposed to irritate skin, as it fits at the hairline and all around the face completely. This is the last style there is, basically, so I'm about to run out of options, other than not use it at all. That 8 hours of sleep on Sunday night gave me such high hopes, too.

I continue to struggle with terrible gas, and I'll be calling my Gastro's nurse today to report in. Stopping the Amitiza just didn't help any. Nothing has really changed as far as feeling like something is wrong with my elimination process, either.

We walked at the track again yesterday morning, after several days off. This time it was due to DH having some pains, as I think he over did it when we started back walking the other day. Hopefully, he'll be OK this morning, and we can get our walk in. I also worked in the yard early yesterday morning, putting another pile in the Lasagna Compost area and digging around the foundation of our new garage. We need to get a drainage ditch around the front edge, so I'm hoeing just a little bit each day. I'm also trying to sweep off the driveway every day or so, as that is good exercise for my shoulders. It sure does feel funny, though, trying to sweep left handed. But I need to exercise both shoulders, so I do it, funny feeling or not. And boy, am I right sided. I'm pitiful trying to sweep "backwards". LOL

I've been doing more research, trying to see if there is anything I've missed about CPAP. I did find that I'm supposed to have the machine below head level, a fact that escaped me somehow. I didn't keep it on long enough last night to know if that would stop the "rain out", as it is called. That's when the humidifier in the machine causes condensation in the tubing, because the air in the room is cooler. I can't do without the moistened air, so I will need to deal with the condensation. It got so bad one night that it sounded like the thing was gargling!

I was also trying to find out of the machine is aggravating the gas I'm having, and yes, CPAP does often cause that, as many people swallow the air. It's supposed to be something you grow out of, and can be lessened by using the Ramp Up switch, which starts the pressure lower so you can go to sleep easier. I hadn't been using it, since going to sleep has never been my problem. But I did use it last night, and will from now on.

For all that I'm discouraged this morning, after so little sleep last night, I am still hopeful that I will adjust to the CPAP. I'm not so optimistic about my digestive system problem, though, and I am still wanting the colonoscopy. My legs and hands continue to be swollen with fluid, too. We'll see what the doctor has to say today.

Trying a Different C-PAP Mask

This makes the fourth different style of mask I've tried, if you include the nasal pillow they put on me in the Sleep Study that I almost went hysterical over. And, this is the last one they have for me to try. So, it's get used to this one, or I'm just not going to be able to do it. The only other chin strap they had was just not what I had in mind, and I could tell it wouldn't work. And, I would have to have paid for a change on that, unlike the mask itself. I have 30 days to decide if I can tolerate this mask.

I had initially categorically turned down even trying on the full mask, which is what I am trying now. At that time, I was still adjusting to the whole idea of it, and the thought of having nose and mouth covered up was just too claustrophobic sounding to me. Now, as I have gotten used to having this claw on my face, it seemed like it was worth trying, as a last resort. It does solve the mouth breathing problem, without having to wear anything extra. And that's a big plus. It leaks though, as I have no chin, and a pug nose, with nothing for it to hold onto. I did sleep longer last night than most nights, so that's a positive sign in the right direction. When I woke up at 2:30 to go to the bathroom, though, I couldn't get it to stop leaking cold air down my neck. By the time I readjusted it somewhat, I was wide awake. I made myself stay there until almost 3:30, though, figuring it would help me adjust to it, even if I were not asleep.

This whole frustrating experience has really been a test of my patience and commitment to see this thing through. Things have always come pretty easy for me, if I really wanted to learn how to do something. I'm not used to having to work so hard to adjust to something new, so this has been a real challenge. DH says when I get mad at the straps I look like I'm about to have a conniption, flailing at my face and yanking the straps off. ROTFL But it's no laughing matter at the time. I have a new appreciation for students of mine over the years who would get so frustrated when they didn't understand the math I was trying to help them with. A pity that I hadn't had an experience like that then, so I could have been more empathetic.

My Sleep Apnea is only mild, according to the doctor, so it's not like I'm going to die in the night if I don't use the machine. But, he wants me to use it, because he feels it will help with my PD symptoms, particularly the brain fog and fatigue. I would love to get out of this haze and have more energy, so I'm trying, really trying to make this work.

I would appreciate your prayers and good thoughts to help me be comfortable with it, as I continue to pray for this each day.

Bits of This and That

I've been a good girl, and I've tried to use the C-Pap machine every night. I can only say try, because I'm still not using it all night long. I did manage to keep it on for 6 hours on Saturday night, and I thought I had it licked. Then last night I couldn't stand it past 1:30AM.

I'm pretty much used to the nose canula now, but the chin strap contraption is quite another matter. I'm going to call the tech again this morning for another appointment, since I only have another week before I'm stuck with whatever equipment I have after 30 days. I have Acne Rosacea, which normally is not a problem for me, as I quit wearing makeup, except for lipstick, many years ago. The reason I bring that up is that all these straps and bands is irritating my face. I'm starting to get red patches around my mouth where the chin strap is rubbing as I turn in the night. There are several other types of chin straps available, so I'm hoping she can find something else that I can use.

We're in the middle of a cold wave right now, with high temperatures in the 90's! So, DH got up this morning in the mood to go walking. We were out at the track at 5:15AM, and there were already people out there walking. It's really the only time of day that it's safe to be doing it right now. I did 3/4 mile, plus my knee and shoulder exercises, and the Tai Chi, while he did 2 miles. Not bad for the first time we've been there in several weeks. Of course, I've been walking around at home and working a little bit in the yard each morning, so I was not out of shape too badly. Maybe tomorrow I'll walk a mile, but I won't push it if I'm not ready. I learned that lesson really well.

The gas is still just as much a problem as it has been, and I'm supposed to call my Gastro this week to let him know how I'm doing. I'll wait a few more days, just in case DH's explanation is right. He thinks I need to give myself a few days for the colon to adjust after the GoLYTELY, and he's probably right.

I also noticed that the tremor in my hands is becoming more noticeable, and showing up more often. I've not had tremors up until recently. Balance wasn't so good yesterday, either. But I'm not in walking shoes on Sunday morning, and that could be it. I am wearing flats, with as much support as I could find, but I never feel as secure when I wear them. I'm not sure what I could wear that didn't look like athletic shoes, but I'm going to have to find something. Part of the problem right now is that I have more tissue swelling than I have been having. I've been on a diuretic for a long time, even before I was diagnosed with PD. But now, my fingers are so swollen that I can't completely close my fists. My ankles are badly swollen, too, and my weight is up, which I'm assuming is fluid.

So, I'm still dealing with lots of little problems, none of which, hopefully, are serious, but all are things that lesson my quality of life. I am thankful that I am in as good a shape as I am. Reading about all the problems that other PWP have makes me feel very blessed that I have a wonderful hubby to help me when I need it, and sympathize with me when I need that, too. I feel for those Parkies friends whose symptoms are so much more debilitating than mine are, and pray that they have a good day today.

Whoever Named It GoLYTELY Had a Cruel Sense of Humor!!!

I said I was going to quit talking about my elimination problems. Well, no such luck, so skip this post, if you're as tired of reading about it as I am of struggling with it. Anyway, I called my Gastro the other day to tell him that, even though I had gone a week on his full strength Bowel Retraining program, that I still felt blocked, and he called back yesterday. I'm in the process of drinking down 4 liters of GoLYTELY, by the hardest. I've had surgery and colonoscopy preps before, but I used Fleet. At this point, I'd say I'd rather drink a small amount of horrible tasting Fleet than a gallon or so of relatively bland tasting GoLytely! I think I'd be nauseated if I had to drink that many glasses of just plain water every 10 minutes, let alone this stuff.

OK, I've griped. I still want my doctor to do a colonoscopy, though, because I don't think I'm going to have any peace of mind until he does. I've tried not to worry, but I really do have the sensation that there's some kind of tissue blockage. So, I'll have this to go through again sometime or another soon. Gee, what fun.

Now, I'm praying this does the trick and clears out whatever the problem has been. I'm also praying that I will have peace of mind with what my Gastroenterologist tells me, but that I continue to press for a resolution if I'm not. I have learned that I am the best judge of what my body is doing, not the doctors! And I think God expects me to continue to be my own best patient advocate.

Trying a Different C-Pap Mask

I took the c-pap stuff back to the supplier yesterday, and they have changed me to a very soft nasal "plug" that doesn't have nearly as much strapping all over my face as the nasal mask did. I slept 6 straight hours, without getting up at all. I can't remember how long it's been since I did that. It's not perfect, as my nostrils were sore this morning, and I can still feel the thing, even hours after it has been out. I've always had this odd thing where I could "feel" a hat long after I had taken it off, and this canula is doing the same thing.

I have hope now that I will adjust. The frustration I was feeling with the other face mask was really wearing me out. It's a good thing I don't cuss! LOL

I'm calling the Gastroenterologist today, as I want the colonoscopy for my peace of mind. I'm still not satisfied with my elimination situation. We took our kittens to the vet this morning, and I got light headed and had to sit down quickly, because we were standing, waiting for the vet to come in our treatment room. I blame that on my tummy, as I felt better after I excused myself and used their facilities.

I've started going out in our yard and working just as soon as it's daylight, as it's just too hot later on in the morning. So, my exercise routine is back on track, with walking and Tai Chi every day, plus working for a little while in the yard. By the time I come in around 7:00AM I'm drenched in sweat.

I'm definitely going to have to get my Neurologist to prescribe something to stop this excessive crying I'm doing. I broke out in blubbering at the c-pap office, trying to tell the tech how frustrated I was trying to adjust to the mask. I have learned that this is called emotional lability, and it is a PD side effect. He doesn't want to change my meds until I get the cpap and elimination situations settled, and that makes sense.

So, some things seem to be getting better, and others aren't.

In Wait and See Mode

The CPAP machine is getting a little bit easier to stand now, but I still haven't slept past 3:00AM with it on. That represents as much as 6 hours of sleep on a few nights, which is definitely better than before. I am having trouble keeping the chin strap on, as it is a soft band of stretchy material, with Velcro on the end. I need it because I am a mouth breather. Without it, I wake up with a sore throat and a dry mouth, as the forced air is being forced right down my throat.

So, I called the people that the CPAP machine came from, and we will take all the stuff into their office on Monday, and they'll see what they can do to help me.

So far, I'm not satisfied with the results of the Bowel Retraining routine the Gastroenterologist has me on, as I still have difficulty getting my muscles to work effectively. I'm to call him this next week to set up the colonoscopy, if I'm not satisfied with the results, so it looks like I may be scheduling that sometime soon.

So for the time being I'm in a state of limbo, just waiting for the right time to take care of things differently.

I have tried to get more exercise the last few days, but it has to be done at the crack of dawn, literally. I was outside walking around in the front, where the street light shines, at 5:30 this morning. It was already hot, but certainly bearable. I worked in the yard a bit, swept the driveway and sidewalks (a good exercise for my shoulder), and worked up a good sweat. DH and I have both noticed that I'm slowing down again. This symptom of Parkinson's is called Bradykinesia, and it's my main problem, both with my legs, hands, and my digestive tract.

No Surgery After All!! WHEW!!

I made the rounds of my doctors again yesterday, and the specialist my Gastroenterologist sent me to does not believe that my situation warrants surgery at this time. He would rather I continue to use all of Dr. B's arsenal of Bowel Retraining routines - glycerin suppositories daily, Milk of Magnesia every couple of days, bran cereal and prune juice daily, Miralax, and Amitiza. He also went over the list of what I can't eat again, and it seems to get longer each time I see him.

I'm not allowed to have

soft drinks of any kind
chocolate
nuts, particularly peanuts
any dairy products at all
cruciferous vegetables, such as broccoli or cabbage
beans
tomatoes
coffee
caffeine of any kind

And no telling what else that I can't think of right now.

It's hard to believe it takes all that to keep my system from bloating, but it does. Zelnorm was much better than Amitiza at producing a stronger muscle contraction through the digestive tract, but I'll just have to make do with the Amitiza, and hope they find a way to modify the Zelnorm and get it back on the market.

There's now an agreement among the doctors that my elimination problem is due by and large to the weakness of the digestive tract muscles, caused by the Parkinson's, rather than the anatomical problem that was recently discovered.

I liked this new doctor. He explained things very well, and took a lot of time with me. He explained why he thought surgery would be unlikely to have much of a chance of improving things at this time, and he also gave me some idea of what to watch out for, in case the problem worsened. I will see him again in 6 months, assuming all goes well.

I saw Dr. B, my Gastroenterologist, too, and he wants me to use the full complement of Bowel Retraining strategies for a week. If I am still bloated and having problems with gas and elimination, he will do another colonoscopy. I had one a year ago, with no polyps or other problems, so he really doesn't expect to find anything. But he knows I'm concerned, and the colonoscopy will ease my mind.

So, with no surgery in the near future, I can stop spending so much time on the computer, reading everything I could find about this problem. I really was beginning to obsess over it, but I learned a lot. I was extremely pleased that the surgeon pulled out his huge PDR and looked up the interaction between Zelepar and Demerol as soon as I mentioned I had read about it. He agreed that I could not have the Demerol if I had the surgery. I will DEFINITELY have to get something in my wallet TODAY to that effect. If I somehow ended up in an emergency room, needing immediate surgery, my own meds could possibly kill me!! So, doing the research was worth it, if only for learning that one piece of information.

Hopefully this is the last time for a long time that I need to discuss my bowel habits LOL!! I'm sure anyone taking the time to read my posts is tired of hearing about it, as I'm tired of having to deal with it, too.

CPAP Saga Continues

I recently read that something like 80% of all people with Parkinson's Disease have some kind of Sleep Disorder, so I'm in good company, eh? There's even a study in progress to see if using a CPAP machine will improve the cognitive abilities of PWP, particularly memory. That's something I'd love to see as a side effect of putting up with this thing!

Well, I haven't given up yet, but I also haven't gotten through a whole night with the CPAP machine on, either. I've been getting to sleep with it pretty well. But then my old insomnia habits take over, and I'm wide awake several hours later. I am finding it easier to get back to sleep the first time, but not when I wake up around 1:30 or 2:00AM. That's when I've been taking it off on most nights.

I've also had a vague nausea and a horrible bout of stomach bloating, particularly this weekend. Since this is already a problem related to the elimination difficulties I have, I treated it with that in mind, with no success. Then, just on a lark, I Googled for bloating and Cpap. To my surprise, I found that this is a common problem, as some people get air forced in their stomachs. The suggestion was given to use Gas-X, and after I did that I felt much better! It's a shame I didn't think to check that sooner, as I didn't go to Church this Sunday, as I just felt entirely too yucky.

Another thing I discovered quite on my own yesterday made a considerable comfort difference for me last night. There are Velcro adjustments at the forehead and around the back of the neck and under the ears for the attachment of the mask. I've been loosening and pulling on them for days, trying to get comfortable. I happened to notice, while the mask was off, that the harness was all twisted out of shape, with one side pulled tighter than the other. So, I undid them all and started from scratch, carefully tightening them up in a symmetrical way, until I thought I had the right size. Then, I tried it on with the CPAP blowing air at its top volume and carefully adjusted it again. Now it is much more comfortable to wear!

I've been up since 1:30AM, so the CPAP hasn't helped me break the insomnia cycle yet. But I did sleep until something like 5:30AM Sunday morning, although most of that was without the CPAP. It's just going to take time, I know, but I WANT IT NOW. Patience was never one of my virtues.

First Night at Home with a C-PAP

My DH got in the expected jibes about how beautiful I looked in my CPAP getup, and warned me not to try to give him a kiss during the night. It does look pretty intimidating and terribly ugly. Our DD who used one for awhile called it Octopus Face.

My face was still sore from the pressure of the mask they had used at the Sleep Study, and nothing I did by way of adjustments made it comfortable. I was very tired, so I did manage to get to sleep with the harness on, but I woke up, as usual, a couple of hours later, wide awake. This is my normal insomnia pattern. Try as I might, I just couldn't stand the thing. I yanked it off several times, crying again out of sheer frustration. I can't even count how many times I pulled it off and put it back on. I even took a Lunesta, thinking surely it would help me get to sleep with it on. No such luck, as I lay there fighting the stupid thing, wide awake. I finally gave up and turned it off.

It didn't take me long then to get back to sleep, but I did wake up at 2:00AM, which is also normal for me when I'm in insomnia mode. I could tell the sleeping pill had me pretty relaxed, so, I thought I'd try it again. This time it worked, or at least it partly worked. I did cheat and leave the chin strap off, so maybe I just breathed through my mouth the rest of the night. I don't know, and I don't really care. I slept until 7:00AM, and I can't remember the last time I slept that late - years probably. And I did sleep all that time with the mask on, properly strapped into position, with the air blasting away.

This equipment wasn't cheap, even with very good insurance, so I don't want to waste the money. More importantly, I want to be able to sleep through a night peacefully, something I can barely remember doing.

The problems of getting used to a CPAP machine are twofold in my view of it. One thing is that the stuff on your face is uncomfortable, no matter how soft they pad it. It has to be tight enough to prevent the air from leaking out around it. If it's not tight enough, you end up with a stream of air blasting your eyes!! Not exactly conducive to sleep, eh?

The other problem is that the air is being forced into your lungs under pressure. Well, that's the good part, because that's what stops the Apnea. The bad part comes when you try to breathe OUT. You have to breathe out AGAINST the pressure that is pushing the air IN! It's a suffocating feeling that I am struggling to handle at all.

The manufacturer of my machine, and I suspect all the other brands, too, realizes this is a problem, and has what they call a RAMP UP button. The idea is to start the machine with less pressure, which gradually builds up to the pressure prescribed by the doctor. You're supposed to be asleep by the time it gets powerful. That's why I was able to get to sleep at first, while I was so tired. I was off in la la land before the pressure increased to full amount. But after I had slept a couple of hours and woke up, I didn't have that luxury, as I was still awake while it was ramping up big time. I pushed the RAMP UP button several times in a row, to no avail.

Will I be able to get used to this contraption? I'd love to say that I will do whatever it takes to adjust, but I'd be lying if I did. I certainly intend to try, and keep trying, but it's such an unpleasant feeling that I'd be a fool to make promises to myself on this one. It took some fervent prayers to get me to sleep that first night at the Sleep Study, and I think I'm going to be doing a LOT of praying to help me adjust to all this. That's all I can do - Try my very best and ask for God's help to get used to this thing.

Things Not as They Should Be

Well, I was right. Something is wrong with my elimination anatomy. I saw the Gastroenterologist Tuesday, and he sent me to another doctor, who found the problem. This doctor is not giving us a high percentage of likelihood of being able to fix it, though. He's sending his findings back to my Gastroenterologist, Dr. B, and I have another appointment with Dr. B next Tuesday. I really don't see much choice but to have the surgery that may repair the problem, even with less than best odds. Not exactly the news we wanted to hear.

Dr. B did give me some samples of Amitiza, the prescription that is replacing the Zelnorm I was taking for the problems with my digestive muscles not working properly, until it was taken off the market. From what I've read it nauseates some people horribly, but I've been lucky. So far, no problems taking it. I can't tell yet if it is going to be helpful, though.

Now, this evening, I found a tick on the side of my knee, and the bite area has a red ring around it. According to what I've been able to find, that means I'm headed to the doctor tomorrow, possibly to start a round of antibiotics, as this apparently is a symptom of Lyme Disease.

What's the expression? When it rains??????

Startle Reflex Does Me IN!!

Have you ever seen a small baby startle? Their whole body is involved, with arms and legs flailing wildly, looking like they can almost jump straight up off the table. Well, yesterday, I looked like that, and it was a very upsetting episode.

I've always been easily startled, so up until recently, I had not made the connection with my increased jumpiness and my PD. I've been attributing it to my insomnia. After reading about other PWP on the ParkinsonLikeMe site, I've come to realize that this phenomena is a fairly common PD symptom.

We were just finishing up eating at our favorite Mexican restaurant, when the people behind us must have been celebrating someone's birthday. Without any warning to me, because I had my back to them, the waiters had gathered at their booth and started singing loudly in Spanish. I jumped out of my skin. My heart was racing, and it was all I could do to hold the tears long enough to get out of there. Poor hubby was so angry that he all but threw the money for our meal at them, and he vowed we would never come in there again.

I was so upset, partly from still feeling the effects of such a powerful reaction, but also with myself, because I had reacted that way at all. I couldn't stop the tears, and remained very depressed the rest of the day. It completely spoiled our day out, and that's a shame. I can feel the tears welling up, even now as I write about it. Such a simple thing, but it really drove home just how much I have changed.

I read other's stories, like Dan's that I posted about today, and I'm ashamed of myself for being depressed over my little problems. But that only makes the depression worse. I can only pray for strength and make myself get up and do ... do something ... do anything... and not wallow.

A PD Plus Story You Should Read!

I want to thank Dan, of PdPlusMe, for writing a detailed post on his early symptoms and struggles with what was eventually diagnosed as PD Plus. If you, or anyone you know, has Parkinson symptoms which are not helped with Sinemet or other traditional PD meds, please get them to read his blog!!

pd plus me: Looking for those with Parkinson's Plus and PD

PatientsLikeMe Site Is AWESOME

I've spent a lot of time today exploring all the neat pages on the PatientsLikeMe site. I received an invitation to join, and now, I'd like to extend that invitation to all of you. It does involve putting in a lot of medical information about yourself, but I've already done that here, so I decided that shouldn't stop me from joining. I'm so glad I did, as I've already read some posts on the forum that made me feel less strange and alone. I can see that the aggregation of data they are trying to achieve will be a fantastic tool for research and personal information.

So, here's the link:

http://www.patientslikeme.com/

and here's the personal profile I've been working on today.

http://www.patientslikeme.com/members/view/Dirty+Butter

They have it fixed so you can find all members who have the same symptoms, use the same meds, etc. as you.

Going Through a Depression Phase

I have really tried to stay positive about all that's been happening to me over the last year or so, but I'm not succeeding very well right now. When I went to my Neurologist last time we made a point of telling him that I was crying extremely easily over just about everything. He had a name for it, but it was a mile long, and I forgot what it was. Since he said he didn't want to change any medicines until after I've had the sleep study, there didn't seem to be any point in pursuing it, as long as we've told him about it.

We've been waiting to get the garage we're having built finished. We waited an extra month for the siding and roofing to be special ordered to match the house. Neither one of them is a match - right color, but wrong shapes. And we're stuck with them. That set me into quite a blue funk for the last few days, but I'm getting over that. It's just a garage. Sometimes it's hard to keep perspective about things like that.

We're still dealing with estate business, so that doesn't help with my state of mind right now, either.

I started back on the glycerin suppositories today, as I have gradually had more and more trouble with bowels again. Just as before, there's nothing that would make me consider myself to be constipated, but my muscles just don't push hard enough. They took the Zelnorm off the market that dealt with that problem for me before. So I'm planning on going back on the Bowel Retraining regimen.

So, with the insomnia continuing, the bowel situation flaring up again, and just generally too much going on, I've had better days.

Losing It

We closed on the house last Thursday, so now one daughter owns Daddy's house, and the other is getting a nice inheritance. It was a very nerve racking event, because the mortgage lady has from day one done a very sloppy job. She has waited until the last minute to tell us about all kinds of things we had to rush around and get done. She's 7 months pregnant, and our DD is afraid if we complain to her boss she will have problems with the baby. If it weren't for DD being so worried about that, we'd be trying to get some of her commission returned to us, as she had to be the worst business person we've ever had to deal with.

Anyway, we went to the bank today and took care of more of the estate business, and I realized after we got there that I had forgotten to bring the mortgage payment check. In fact, I hadn't even thought about bringing it, and I couldn't remember what I had done with it after we got home late Thursday night. I remember telling my DH where I put it when we got home, but he couldn't remember, either. When we came home from the bank, we spent a very hectic afternoon tearing the house apart, looking for it. I was a complete blank, with no idea what the check even looked like. Have you ever tried looking for something when you didn't even know if it was in an envelope or not?? I cried a lot, prayed a lot, and finally gave up.

I figured if I started cleaning up, I might find it, and I finally did, thanks to God's help. It wasn't in a logical place at all. For some reason I had moved it from where I was just sure I had put it to begin with. This whole episode was very scary, and I've told DH that as far as I'm concerned his Power of Attorney just started. I've always been the one to deal with all business matters, but I can't trust myself any more.

Mama had the Alzheimer's type of Parkinson's, and I'm seeing more and more of it in myself. It's very depressing to watch yourself go blank. I can only hope that it will turn out to be the result of my insomnia, not Senile Parkinson's Disease.

43rd Wedding Anniversary!

How about that! Yesterday we celebrated our 43rd wedding anniversary. We've actually been seriously in love since 1960, but we waited for me to graduate from college before we got married. I wouldn't recommend that long an engagement to anyone, but getting my education was important, and it's helped our family financially all these years.

We went to a movie and ate out and generally enjoyed being with each other, as we always do. I would wish that all marriages could last so long with so much love still there after all the years.

It did get me out of the house and away from all these estate issues. We'll go to the bank today and open the ESTATE bank account and change over all the CD's to our name. That will be a couple of more things I can then cross off my task list, which is a very satisfying thing to do.

What with all the stuff we've been cleaning out of Daddy's house, I finally got up the gumption to clean out Pop's closet at our house. My FIL lived with us the last few years of his life, and when he died, I just couldn't bring myself to deal with his clothes. They weren't really in my way, so I put it off. Well, now I need the closet to store some of Mama and Daddy's stuff until we can sell it on eBay, so all of Pop's things are bagged up and ready to give to the Thrift Store. I will have to get the name tag labels out of everything, though, as he was in an Assisted Living home his last year, and everything is marked.

I've finally worked our eBay store back up to 250 items listed, which is about all we can afford at one time. Maybe now some other things on my To Do list can move up the line.

I did sleep longer last night, but it was because I took a Darvocet last night. The movie gave me a headache, plus I was generally achy all over. I think I've been over doing it lately, trying to box a lot of things up. Doing a lot more leaning over and picking things up than I have in a long time, and my muscles are complaining about it. Walking is great, but it doesn't take care of all the muscle groups. I have been doing some simple arm exercises with the 1 lb weights, and I've gone back to doing all the neck and shoulder exercises that the Physical Therapist put me on some years ago for the degenerated disk in my neck. I continue to do the Tai Chi, as well, so I'm really trying to build up my muscle tone. I do have a set of exercise videos that I bought several years ago, but that means getting down on the floor. Getting down isn't the problem .. getting back up is! LOL So, I'm postponing using them for awhile. I figure by the time the weather turns cold I'll be strong enough to get up and down safely.

We're still waiting for them to start work on our new garage, as we special ordered everything to match our house. I'm getting antsy, seeing that beautiful driveway and slab, with no building going on. But it will come, sometime soon. I just need to be patient.

Our older DD and SIL have moved into Daddy's house, in the midst of quite a mess. I'm glad it's them and not us!! But youth puts up with stuff that age can't or won't. We're working as hard as we can to empty the house of all of my parent's things, but it's a slow go.

So, I continue to stay busy, improving little by little each day. Crossing things off my list reduces my stress level, so I rejoice every time I finish one small part of this huge undertaking. Some days I have to hunt for something to feel positive about, but I work hard at staying optimistic. Thanks to all of you dear friends for your encouragement!!!!

Still NO Sleep

Insomnia is turning out to be my biggest problem right now, because it effects my stamina and mental agility as the day wears on. I start out each morning all fresh and energetic, even with only 4 hours sleep. I'm wide awake and rarin' to go! But I fizzle. Not surprising considering it's been over a month since I've had more than 4 hours a night. I doze in the car when we go anywhere, but other than that, there's nothing.

My Neurologist appointment is coming next week, and he had mentioned doing a sleep study. I think it's time, don't you?? I can't imagine what he can do about it, though, as I'm comfortable in the recliner, and if I snore, there's no one nearby to tell me about it LOL. I do hear my DH sawing away in the bedroom, though. Ah! Maybe HE's the culprit!! ROTFL

I'm really proud of how much stronger physically I am right now, and I'm determined to keep up the good work. I'm doing the Tai Chi almost every day, which definitely improves my balance, walking about 6000 steps on average, lifting 1 lb weights to do the arm exercises, and working around the house more than I have in a long time.

We're about to close on Daddy's house, so that will be out of the way. That leaves his car and all the stuff in the house to get rid of, plus some small insurance policies to deal with. UGH!

I continue to stay behind on all my computer work, but the eBay business is picking up, now that I'm listing new items every day. Maybe in the year 2020 I'll have all of the things we have been buying at Estate Sales sold. HA! Maybe ... but we keep on buying, 'cause that's the fun part for us, as we do that together. One step forward and two steps back! All the online part is strictly my doings. Hubby can't stand computers.

I really do miss all of you, but I just can't work it all in. I don't think I think as fast as I used to.

Decided Against It

I do appreciate the feedback you gave me on the decision about joining the St. Vincent's facility, but we finally decided not to do it at this time. Time was, after all, the deciding factor. It was going to eat up about 3 hours each day I went, and to get any good out of it, I would have to have gone at least 2 days a week, if not 3. I think I can accomplish just about as much with home exercise equipment and our time at the walking track, which is about 5 minutes from home. Of course, in this day and time, we have to take gas prices into account too, and we do live a long way from any of these kinds of sports facilities, with some really bad traffic to contend with both ways.

I continue to accomplish more and more when I exercise in the mornings, but I'm paying for it each night with a lot of sore muscles. DH fusses at me for over doing it, but it doesn't ever seem like I am at the time. It's only later in the day that I realize I've over taxed my muscles. I think some of this pain I experience is coming from the Peripheral Neuropathy, particularly since I went off the Cymbalta. My Neurologist wasn't the least concerned about me taking it in conjunction with the Zelepar, even though the Pharmacist had warned me about the combination. So, I may yet go back on it. But for now, I'm still adjusting to adding the Requip back to my meds, so I don't want to add 2 new drugs at the same time.

The Requip is beginning to upset my stomach, just the way it did last time. I'm having lots of heartburn and belching a lot. Nothing else has changed, so it has to be the culprit. I'll put up with it if it doesn't get much worse than this, but I'm still planning to ask for the Neupro patch when I go back to Dr. S in June.

Just to document where I stand physically:

I can now sit down and stand up from a straight chair without using my arms, at least in the morning. I can't by the evening, though. Sofas and soft chairs I haven't mastered yet. I can walk over 3000 steps a day on the pedometer most days. I've put the handicap toilet seat away for now, as I can deal with the standard one, as long as I have the sink cabinet to hold onto. I'm still using the cane when we go to yard sales and such, where the terrain is unknown, and I still don't go up and down flights of stairs if I can avoid it. Crouching down to get things in and out of my kitchen cabinets is difficult, so I usually depend on DH to do that for me. I lose my balance too easily, particularly with something in my hands. My core muscles, those of the trunk, are definitely getting stronger as I continue to exercise, as I can now lift my behind when I do what's called the Bridge. It's a simple exercise, really. All you do is lie on your back, feet on the floor, with your knees raised, and try to lift your bottom. Until recently, I couldn't lift more than a half inch or so, but now I'm coming completely off the floor.

I'm doing the Tai Chi short form almost every day now, and I'm getting pretty good at it again. My balance continues to improve.

The biggest problem I am having right now, I suppose, is the insomnia. As soon as I started back on the Requip, it started back again. I haven't been able to sleep past 3:00 AM for some time now. I get a lot done on the computer, but I really need the sleep! I've tried napping later in the day, but that doesn't work unless I'm in the car. Then I can doze off almost instantly ;).

So, I am progressing, but I have lots of room for improvement. Eating healthy foods and exercising are just as much medicines for me as anything that comes in a bottle!

Can't Make Up My Mind

I've been going back and forth since Friday, trying to decide whether or not to join the St. Vincent's Health facility. We toured it Friday afternoon, and the place is really impressive. But when I found out the price, and now that I'm certain that my DH is not going to join, I'm just not sure what to do. If he had joined, I wouldn't be feeling guilty about all the time it's going to take to drive there and back, plus the time I'm there, too.

I can justify the cost, if I choose to go, as just being another expensive medicine. If the doctor were to prescribe something that costs $65 a month, and he really thought it would make a positive impact on my Quality of Life, I'd pay for it, without hesitation. So, even though that is a lot of money, I can't decide not to join just based on cost.

Being dependent on DH to drive me there, wait on me, and then drive home, is very depressing. I'm sure I would join if I could drive myself there, but that's just not going to happen. It would mean driving on Highway 280, the most congested road in Alabama.

When I had said I was going to join, DH let it slip that he really wasn't enjoying going walking in the mornings. He's a night person, so getting up that early is not what he wants to do. He's been keeping that to himself, because he wanted me to get the exercise. I feel bad that I've been hauling him out of bed all this time, when he really didn't want to, but it's just like him to put my interests over his.

So now my dilemma is that I don't want to put him out again, by going so far from home to exercise. I think if it were just exercise equipment, I wouldn't have any trouble saying no. But there are Yoga and Pilates classes, plus Aquatic classes for Arthritis folks, a shallow therapy pool, a large jacuzzi, a sauna, and a steam room. Hmmmm.... those sound so soothing on aching muscles.

I can't count how many times I've changed my mind this weekend LOL!! This whole wishy washy episode has really brought home to me how very upset I am that I have to depend on somebody else to help me do things I used to be able to do by myself. I don't like it one bit!!

Daughter's Gastric Bypass Horror Story Continues

Our older DD had Gastric Bypass surgery over 2 years ago now, and her health problems from it continue to show up. All last year she battled with Peripheral Neuropathy so bad that she was almost not able to walk at all. She was in and out of the hospital something like 50 or 60 days last year, while they tried to bring her nutrition level up to a point that her body could recover. She thought she was over all that, even though it meant she had to gain back a lot of the weight she had lost.

During that same time period, she was having constant problems with crumbling teeth and abscesses. Now, the dentist tells her that the real problem is that the jaw bone is deteriorating, so the roots of the teeth are not stable. He is planning on pulling them all and putting her in dentures.

And, now, on top of that news she received this week, her eye exam showed serious problems, which they thought at the time was weak muscles from the Neuropathy. So, she went to an ophthalmologist, who says she has holes in her retina. She now has an appointment with a retina specialist.

To say the least, she is overwhelmed. We spent a long time on the phone last night with her sobbing away, and understandably so. When she decided to have the bypass surgery, we did all kinds of research, and at the time it seemed like the best way to improve her quality of life. Obviously, that was not the case.

I realize there are people out there who are so morbidly obese that they are existing, not living, in their present condition. DD's health was such that she was in serious danger. But now, it's hard to think that she (we) made the right decision.
If you know anyone who is considering this surgery, please let them know that there are people who have major regrets about it.

No Surgery for Me!!

I went back to the Orthopedist yesterday to find out the results of the MRI on my knee. He says I have arthritis, and not a torn cartilage. There are two kinds of cartilage in the knee, and it's the one that is smoothed over the bone that is becoming thin in my knee. That's whats' causing the pain, as bone scrapes against bone. He said I could come back when I needed another Cortisone shot, and eventually, when I can't stand it any more, he can do arthroscopic surgery to smooth it all back out and decrease the pain.

That was what I was hoping he would say, so we're very relieved. Now I won't be quite so timid with my exercising. I plan on making an appointment with the St. Vincent's Sports Facility for next week, and will more than likely join. I'm not having any success getting my DH to agree to join, though. He'll have to drive me and wait on me, just the way he was doing the physical therapy, so it would be great if he would join. Then he could do his own exercising while I do mine. It's tempting to nag ... but I've been around long enough to know that that will backfire. So, I'll go for me, and maybe he'll change his mind.

I was awfully sore from the waist down yesterday. I can't really tell when I'm overdoing it. I don't feel like I'm doing too much at the time, but my body sure does complain that night. LOL My walking really has improved a lot, though, and I'm still doing the exercises that the PT gave me.

So I'm feeling good about my ability to gradually improve, as long as I don't overdo it.

Ahhhh Sleep!

Well, the Sonata did its job last night, and I actually managed to sleep in one stretch from 10:30 to 4:30 this morning. I feel much more rested for it, too. I'll probably continue taking it for the next few days in an attempt to retrain my system. I've always been the kind who could tell myself when I needed to get up, and I'd wake up on my own. So, it seems like I ought to be able to tell myself to get up later and later, until I'm sleeping a decent number of hours, right?? I wish.

I must have found the correct place to put the step counter on my waist band yesterday, as it showed almost 3000 steps by the end of the day. That's a long way from 10,000, but a place to start. I spend so much time on the computer .... maybe I need to get one of those treadmill setups where you work on the computer while you walk. It's supposed to be an easy way to build up your exercise tolerance. They already have book racks on treadmills ... why not a place for a laptop??

I'm still on the Tylenol for pain relief, and I'm still using the hot pad when I go to sleep, so the pain is quite noticeable. Mind you, this pain is nowhere near as bad as some other times in my life. That's why I don't want to consider any surgery on my knee. If it's arthritis, though, that will make me braver to use it more aggressively, and if it's a torn cartilage - I'll probably end up getting a knee brace. I'm getting anxious to find out. I never did like having to wait for results from tests. I'm like a pouting little kid about that.

Wonderful Cortisone

I went to the Orthopedist yesterday and talked to him about my knee and shoulder. I'm satisfied that the shoulder is responding well to the Physical Therapy, and I can tell that the leg, hip, and thigh muscles have strengthened since I've been going to PT, but my knee still will not straighten all the way out, and getting up and down from a chair still is extremely painful. So, he's put in a request with my insurance for the MRI, so we'll both know what's going on in there.

He did ask me if I wanted a Cortisone shot, and said it might give me relief for anywhere from a few days to a few months. The shot hurt something horrible going in, and the knee was awfully sore yesterday, but it's not hurting now! It's been so long since I could sit down without inwardly, or sometimes outwardly, groaning, that this is quite a pleasant change. I pray that I will be one of the ones to get long term relief with the shot. I've always had good success with epidurals lasting a long time, so I'm optimistic.

I did ask about going back for more PT, and his PA told me I needed to check with my insurance to see how many times they will authorize. She said I might want to keep some therapy sessions available, just in case I do end up having surgery. It's a shame that insurance companies control decisions like this, not the doctors and therapists who know how much I need this. I have good insurance though, so I'll be talking to them Monday to find out where I stand.

I had already decided before I got hurt taking care of Daddy that I would join a fitness "club" run by St. Vincent's hospital in Birmingham after he died, but the knee put that on hold. They have a program where you pay for a complete evaluation of your physical condition and they supervise your exercise program, with quarterly checkups of your progress with a Physical Therapist. They have all kinds of equipment, a pool, and lots of different classes I can take. I've been chatting back and forth with Lynda of Pilates & Reiki in Paradise about possible nearby instructors suitable for a person with Parkinson's, and oddly enough, this is the very Pilates class she suggested. Small world.

So, for the time being at least, I'm pain free, with plans for keeping it that way. We're going on our usual Date Day today, and by the time I've been in and out of the car dozens of times today, I'll know if I'm going to be one of the lucky one for whom Cortisone is a wonder drug. Wish me luck!!

Stiffness

I had trouble yesterday and today with a lot of stiffness when I got up, and it took quite a while for it to go away. I mentioned it to the PT yesterday, and she said I'm probably going to have to try to keep my activity level fairly constant, rather than over-exerting and then taking a few days off, the way most people would. It's just a Parkinson's thing, she says, and not, LOL, my age!

I did get in and out of the car a whole lot last Friday on our Date Day, as we had a lot of Estate Sales available to look at. So, I didn't do much of anything Saturday. Big mistake, evidently. Well, lesson learned. I'll know now that I need to try to keep on with at least my exercises the next day after I get overly tired. One thing's for sure, I have no intention of cutting back on our Estate Sale haunts, as that's an important part of my Quality of Life. We really enjoy each other's company, and I don't want to mess that time up at all, until it becomes absolutely impossible to continue. And I'm hoping that day is a long, long way away!

I'm looking forward to my Orthopedist appointment this Thursday, and I'm hoping he will authorize the MRI of my knee, just so I can know if I have any torn cartilage or not. I have no intention of having arthroscopic surgery on it at this stage of the game, but if it is torn, I'll probably want to find out about a knee brace for times when I might need it. Our basement is one big junk yard, and right now DH is having to do all the cleaning and throwing out by himself, as I don't dare twist anything. The brace would make me braver about squatting, turning, etc., and I'd feel better if I were helping him. After all, it's in that big a mess because I haven't felt like cleaning it out for a long, long time now, long before he retired and took over much of the housework.

So, here's to being even more physically active and feeling more useful!

The Day After PT - and I'm OK

I'm thankful to be able to say that today I have not been all stove up the way I was last week. The Physical Therapist cut back on the severity and number of repetitions this week, so I'm only mildly sore today. I did make a point of asking her if she thought I should be asking the doctor for a blue parking sticker, and she agreed that I should. I won't need it all the time, but for some places, like the Galleria, which is a huge multi-story mall, I'll definitely be taking the walker, and I'll need to be near the door.

We ate at an old Krystal's yesterday, and I guess that's the first time we've been in one in over 20 years! Luckily, I was having a good day, because the bathroom doors were not much over 20 inches wide! The sink was not much bigger than the size of a sheet of paper! It really looked like what I would imagine an airplane bathroom might look like, and definitely reminds me of the bathrooms on trains as I remember them from my childhood. So, when we got home, I found the Krystal website and complained. I had an answer from the Birmingham District Supervisor by this afternoon. It was pretty much a form letter, but it did have his phone number, etc., so I figured I'd call in a month or so and see if anything is going to be done to make those bathrooms handicap accessible.

We've been consciously advocating for better handicap facilities in businesses we go to for years now, never thinking that someday one of us would be needing them. Now, I'm super conscious, and very glad that I've been doing my part to make managers aware of what needed to be done.

Physical Therapy Continues

I am shocked at how weak my right side has become. And a little scared, too, as I can see that I'm going to be in need of care giving a lot sooner than I had imagined, if I cannot regain at least a reasonable amount of my muscle strength. The PT has been very kind this week, and has allowed me to take the time to do the leg exercises on both sides, even though the "prescription" from the doctor only addresses the right knee. Actually, I don't really think the knee is the problem, only the result. The real problem, which is definitely the case on both sides, but more so on the right, is that my hip muscles are extremely compromised. That's causing the unnatural gait and putting the extra strain on the knee. The right one just complained more because of the stress shifting Daddy in the bed caused.

My shoulder is definitely improving, so that's something to be pleased with, anyway. She didn't even work on it yesterday, except for the electrical stimulation and moist heat therapy at the end of the session. I spent two hours there yesterday, just working on my legs and hips. Plus, we walked yesterday morning, and I did 3/4 of a mile, with the cane.

She wants me to cut back on the walking every few days to one or two laps to give my muscles a chance to recuperate, so I'll just sit and watch DH finish his laps on those days. She tells me that the Peripheral Neuropathy causes my muscles to fatigue faster than normal and bounce back more slowly, so I have to be careful to not overdo each set of exercises and rest longer between them than other people would need to.

We chatted while I worked, and it seems that she has another patient right now with idiopathic PN, too. Idiopathic just means the doctors don't know what's causing it, which is true for me, too. Anyway, I gave her the address for this blog to pass along to her, and I hope she does stop by. I know it helps me to chat with people with similar problems, and it's very hard to find much on the Internet about Peripheral Neuropathy that's not caused by diabetes.

My hip sockets and upper thighs ached the rest of the day yesterday, so I ended up taking a Lortab to get to sleep last night. I do feel better this morning, though, and we won't go to the track today, since it's our Date Day. That will help my muscles rest and rebuild. She wants to see me two times next week, again to allow more time for the muscles to rest before the therapy sessions. Of course, I have my list of home exercises to continue, so I'll still be getting therapy.

Oh, another thing I did yesterday was to stop and buy new bottles of my Centrum Silver and vitamin C+D. I found out at the eye doctor's office the other day that not everyone can dissolve the wax that's used to turn medicines into pills. That means some people pass the pills straight through their body without even getting any benefit at all. I had heard that before, that sometimes when septic tanks are cleaned out they are full of pills! So,to get maximum benefit, he told me to change to capsules or gels. Centrum doesn't seem to come that way, so I got the chewable ones instead, and I found the C+D in gells. She also said I was not taking enough of the C for my Osteopenia (loss of bone mass that is not as bad as Osteoporosis), so now I'll be taking those twice a day. She warned me not to try to just take one huge dose, though. She says the body can't absorb more than about 500 units at a time.

Sorry to sound so depressing today, but this has really slammed home to me how much function I've already lost, with no way of knowing if I can regain it. I can only do my best to follow the PT's directions and hope for the best.

102 Years - Quite a Lifetime!!

Those of you who have been so kind to send your hugs and prayers to us while we tend to Daddy might be interested in reading what I've posted on my Yesterday's Memories blog today.

Hurky Jerky Girl

My DH saw me have a full body Parkinson's tremor for the first time today. We've been around each other so little for the last few months that it took him by surprise. We've been taking turns during the day staying with Daddy, and I've been up here every night since Thanksgiving, so we really have been just passing each other. I had described one of these episodes to the Neurologist last time, and DH heard me, but seeing it is quite another thing. I think it scared him, and I'm sorry for that. For several minutes I look like I'm doing a Michael J. Fox imitation!!

It's just that my Parkinson's meds can't keep up with the lack of sleep and the stress level I'm under right now. I don't want to make changes in my PD meds, if I can help it, until this time with Daddy is over. I'd rather put up with these unexpected episodes on an occasional basis than to over medicate myself.

Daddy is very stable right now. He's been asleep for several days now, totally unresponsive, except for some indication of pain when we are moving him to change the Depends. His urine output is low (it's been a week since he's had anything by mouth), so we aren't changing him but twice a day now. The rest of the time, he's sleeping peacefully. He's getting morphine every 4 hours, plus a suppository twice a day with Atavan, Haldol, Benedryl, and Resperidol in it. Talk about Chill Pill!!

It's such a blessing. If I could order up the way I would want to die, this would be it. I hope for his sake, and ours, that he continues this way to the end. DH's Mama and Pop died fairly peacefully, but my Mama had a slow agonizing death. I'm praying that Daddy will continue the way he is now, until the end.

Active Life = Strong Heart

Saying Goodbye

The Hospice nurse told me today that the nurse who stayed Saturday thought he had a heart attack that night. I had been guessing maybe two more weeks at the most, based on Daddy's refusal to let me put anything in his mouth. She told me to be thinking more like days. I've said my goodbye's, tried to finish the sentences he was struggling to get out, and he's ready - well past ready. I didn't have to hear the individual words to know the cadence of his "I wish this would hurry up and get over with," as I've been hearing that for some time now.

Saying goodbye is never easy, but our first Hospice experience taught us that it is important. Even if you don't think the person is aware enough to hear you, the loving words need to be said. And if they can't respond, you need to speak out loud for them, saying what you know they would say to you if they could. Not easy.

Now that I'm Caught Up .... HAPPY BIRTHDAY

My Daddy is 102 years old today! Up until Thanksgiving, he was living by himself in his own home. He has been blessed with a long and mostly healthy life, and I'm thankful that this last stage of dependency has moved rather quickly.

Time I Tried to Catch Up

I've ended up doing the very thing I really didn't want to do, and that's not keep this blog as a daily journal. It's just that so much has been happening lately that I just had to put blogging way down on my priority list.

So.... here goes .........

Since I wrote last, Daddy has been much worse. There was a large bulge in his upper right colon area that no amount of enemas, suppositories, stool softeners, or laxatives seemed to be effecting at all. We are fortunate enough to live in the country, where doctors still treat their patients as individuals. So Friday, a week ago, Daddy's primary care physician came out to the house after work! After feeling around on the area, he really didn't think it was a bowel impaction, but there was no way for him to be sure. He suggested we put Daddy in the hospital for some tests. I spent the weekend deeply upset by that prospect, not knowing what was best for him. Dr. Mc understood that we had no intention of any type of surgery, if they did find anything other than fecal matter. On top of the rest of my misery over making this decision, he would be in the hospital I swore I would never take anyone to ever again.

I finally decided that I would be in worse shape emotionally if I didn't at least give it a try, so I was in the hospital with Daddy for several days this last week. We came home Thursday, after the tests they did showed conclusively that it was not fecal matter. We stopped them from running any more tests, so it was left as a diagnosis of a soft tissue mass. I don't need to know what it is ... only that I can give him pain medicine, because it won't be causing more constipation on a blocked bowel.

We also brought home new pressure sores, because it took lots of complaining to get them to change him and turn him. And, when they did handle him, most of them were not gentle with his skin. Did I say I hate that hospital??

One of the two really caring PCA's gave me four hospital gowns to take home, which is a big help at this point.

Yesterday evening, when DH and I started to turn Daddy to change his Depends, he threw up all over the place. Considering the amount of food and liquid Frances had gotten in him, everything must have been sitting in his stomach all day!! He was obviously in pain, so I called the Hospice nurse, who advised that I not try to give him his night medicines or move him for at least an hour. We cleaned him up the best we could and managed to get towels between his skin and the sheets, etc., that were soaked.

After an hour, we changed everything out to clean, but it was obvious we were really hurting him with every turn. After reporting in to the nurse, she said not to feed him or give him any medicine, but to call again if he didn't go to sleep comfortably on his own.

I called her back at 2:00AM, as things were worse again, and she told me to give him the morphine that absorbs through his mouth. She arrived about an hour later, as we are on the outside reach of this Hospice territory. He was running a temp, and his blood pressure was very high. We managed to get the blood pressure med in him that he had missed at supper time, plus a sublingual tablet for fever. I'm not sure what that was.

She then suggested I try to get some sleep, and she sat up with him for three hours, while I napped!! There's a lot about this hospice I don't like, but she moved them up a few notches in my estimation, in the wee hours of this morning!!!!!

Part of the reason I haven't been blogging is that my right arm and hand have been in considerable pain and swelling since we went to the hospital. Thinking it would be enough, I only took my cane. By the time I had walked all over the place as they took Daddy for tests, I had put too much pressure on my arm, and I paid the price for not remembering to swap to the left hand often. Thank goodness, I had thought to pack my hot pad. So I spent his hospital time doping myself up with as much pain medicine as I dared to, and still staying awake enough to be harassing them to do their job. I just couldn't manage the computer very well at all!! It looks like I'm going to have to learn how to use a mouse left handed ... I'm pitifully uncoordinated as a lefty ... far more so now with the PD.

I'm also fortunate that we had bought a really nice wheel walker with the seat in it some time ago at an Estate Sale. DH was very depressed when we bought it, but it was a blessing when my arm hurt so much.

I can't thank you all enough for your prayers and kind thoughts while all this was going on. I knew you were worried about my sudden disappearance, and appreciate the emails I received. Just know that you have been supporting me, even though you didn't know what was going on.

"I Want to Go Home Now"

The human mind is a fragile thing when age or the onslaught of disease takes its toll. Since we've already been Care Givers for my mother and DH's father, who both had Alzheimer's, we've heard many, many pitiful pleas and angry demands for us to take them "home." My Mama was in the hospital, with me there 24 hours a day for 35 days, recovering from a broken hip and going through rehab. She never could get straight in her head where she was, but I expected things to be better once I got her back into her own home.

I was very disappointed to find that she didn't know she was in her own home, when we did get her back there. Each day involved question after question about when we would be leaving, why wasn't I taking her home, who were these strange people, etc. No amount of reassuring her that she was home, and that the people were her family, would appease her. At one point she was in a panic, because she was worried about her dog being alone at the house, with no one to care for him. What could I say? She was remembering the house I had grown up in, and a dog I had as a little girl. So I had to play along that Cindy was being well taken care of, and for her not to worry.

We moved Pop out of his home, and moved him in with us. So his constant requests to go home at least made sense!

But I was not prepared to have these same conversations with my Daddy! He's old - VERY old - but has been more or less lucid most of the time, even after he fell on Thanksgiving weekend. Well, he's been lucid about everything EXCEPT that he was still in his own home! He's forever asking me for his cap and jacket, so we can head home.

I've come to the conclusion that what they all mean when they ask to go home is to go back to a time when they were in control. A time in their lives when they had privacy. A time when someone else did not pick out the clothes they would wear, or decide what they would have for lunch, or when it was bedtime. A time in their lives when they could still drive, take a walk around the block, or, in Daddy's case, cut the grass.

As Care Givers, we can do our best to keep them safe and comfortable physically, and we can even play along with their delusions at times, but the one thing we cannot do for them is to give them back that control over their own lives that they so long for.

My Daddy will be 102 in less than two weeks. His body becomes noticeably more frail each day, his speech has become all but nonexistent over the last few days, and we can get very little nutrition or fluids down him. It frustrates him to try to talk when he can't get the words out. He can no longer help us when we turn him in the bed. His days and nights are spent for the most part sleeping. Sure he wants to go home. Who wouldn't want to return to a better time??

I both rejoice and am deeply grieved that he soon will be truly HOME. Seeing my dear Mama again. Walking with a full strong stride. Enjoying seeing all the wonderful sights that his blind eyes have been missing for many, many years. Hearing the angelic choir in all its glory. And I betcha he'll be on a riding lawn mower keeping the yard cut!!!

I'm already grieving his loss. Just writing these last words has the tears flowing. But he's lived a long life, with much to be proud of and to enjoy. It's time for him to go home.

Tremors Galore!!

Don't let anyone give you the impression that everyone who has Parkinson's reacts the same way to the loss of dopamine in the brain. I'm one of those whose main symptom is Bradykinesia, which means without medicine I can barely get my legs to move at all. My upper body movements are slower and less coordinated, but my lower body simply has no clue what my brain is telling it to do. This effects my walking, balance, and my digestive system muscles. Something as simple as standing through the verses of a song in church can be very difficult for me to do. I'm also having lots of problems sleeping, no matter how tired I am.

Unlike the stereotypical image of a PWP, I have not had tremors. Well, I can't say that any more. Yesterday evening I noticed a rhythmic series of what felt like shivers to me, but I wasn't cold. I thought it was nerves, as things have been quite stressful around here lately. But when I tried to go to sleep last night, those shivers turned into full blown tremors. Not only my legs, but for awhile there, my whole body was uncontrollably shaking. These are called resting tremors, as they immediately stopped when I raised both legs. As soon as I put my legs back down - they would start up again. Yep, that's Parkinson's tremors, alright. Something else to talk to the Neurologist about next week.

I have decided not to add the Requip to the Zelepar, since the doctor's appointment is so close, but if I do the shake, rattle, roll thing again tonight, I may change my mind. Just as a point of information that I find extremely odd, PWP don't have tremors in their sleep!! Weird, isn't it??

Testing ... Testing ... This Is Only a Test

I thought I'd o a post without any back spacing or spellchcking, just to give you folks an idea of what my typing is like these days. This will also give me a benchmark as to the extent of my mind/finder coordiatniton at this time. so bear with me while you try to read my gobbledytook. LOL

Daddy an di both ahd a good night's sleep slast night!! so I'm much more rested to day that usual. We;re beginning to settle into something of a routine finally, alsthough we're still experimenting with ways to make the lift help us the most effiiently.

I did have to call the night service night efore last, because he was choking on his own spit in the bed about several hours after he went ot sleep. I tried moving the head of the bed up and down and turning him from side to dide, but nothing seemed to help. I think the nurse thought i was describing a death rattle when I first talke to her, but I assured her that I knew that sounded like. She said to wake hime up and see if that would help with stronger coughting. I let the bed flat, turned him onto this side, slapped him on the back the way cystic phibrosis patients done, and this huge glob of thick mucus finally came up. Surprisingly, he went right bakc to sleep, and slept well the rest of the night. I didn't thogh, as I was afraid it would happen again.

I seem to be going from one problem to another, as far as I'm concerned. Now it's my back hurting again. It's not the vertebrae, but the muschles of my upper back. That's from leaning across Daddy, even though we have the hospital bed. This is definitely from the Parkinson's, so I guess it's time to add the Requip to my meds again.

I can tell immediately when I make the se spelling mistakes and typing mistakes. At least I know it's wrong, but I take spellls of not being able to cooridante everything einvolved in acutally typing, And I really wa sa good typist, so it's not because I don't know how LOL!!

Well, of you've srubbled thorugh this you have some idea of the whats' involved in turning out a post the way they usually lool. It's the same with comments.

Did I say that Parkisons' is a terible disease? And I'm ant Stage One!!!!

Sleep? What's That???

I'm tired. I've reached the point that I'm too tired to sleep, even when I could. I have the Ambien CR, but the Neurologist doesn't want me taking it all the time.

Besides, I might not hear Daddy if I'm doped up. He's becoming very unpredictable as to his sleeping patterns. There have been some nights lately where he hallucinated much of the night, even clawing to take off his Depends and trying to climb over the bed rails. Other nights, he talks in his sleep. I've had several lengthy conversations with him in the middle of the night, where he never opens his eyes, and I can tell he's still asleep LOL! Other nights, he barely twitches a muscle, but stays in exactly the same place all night long. That's not good for his skin.

The lift has helped with the lack of strength problem tremendously (Daddy's and mine, too), and Daddy is accepting it without argument, thank goodness. He's also letting us feed him, which surprised me. I thought he'd balk, but I think he's beyond that. He still takes spells of hateful talk, but it doesn't happen too often any more. Frances heard it for the first time yesterday. It really surprised her. We told her that meant she was part of the family now. ;)

We've reached that point in care giving where we pretty much control everything to do with Daddy now. We've bought sweat pants and put his regular zipper pants away. I've put up his watch, wallet, and keys, which he'd always put on first thing each morning. He's no longer wearing athletic undershirts or his favorite flannel shirts. We've bought him some knit Henley long sleeve shirts instead, so we could get them on and off easier that the unstretching flannels. He's in white diabetic ankle socks, instead of his dress socks, and I can't remember the last time he had on both shoes. In fact now we're not even bothering with the slipper socks, as he's not standing or walking. The sores on his bottom and his heel look much better, because we have more control over his skin now that he's not walking and in his own bed. It's no wonder he keeps asking to go home! He certainly doesn't recognize the life he's living now. But he's safe (well, except for his rail climbing times), and he's as comfortable as we can get him.

The Zelepar seems to be sufficient for my physical Parkinson's symptoms, but I'm not sure any medicine could improve the mental deterioration I see, considering all we're doing right now. Thank goodness for backspace and spell check!!

At the rate I'm going it won't be long before it's just too difficult to try to correct all my typing mistakes. I'll just join Joe, and let you see what it's really like for me HA!!

So, I've cut out what I could in the way of other responsibilities. I haven't put a new item on eBay in some time, and I've put up a notice that we are not able to ship promptly right now. I've sent an email to all the BLOG VILLAGE members, asking them to help me with the monthly check on all the voting links and dead blogs. I've even cut down on my own reading and commenting, not because I want to, but because I'm just overwhelmed right now.

As you can see, I'm not very cheery today. I'll feel better once I get some sleep, though - whenever that will be.

My Uplifting Valentine's Presents

This last week has really been a strange one, on several counts. I wouldn't normally go this long without a post, but I tried to get a little too fancy with my Drive Partitioning software, and couldn't get the computer to boot at all! It took me several days to figure out how to fix it, and several more to get everything back the way it belonged. Luckily, I'm good about backing up my data, so I didn't lose any of that.

In between working on the computer, DH and I have had quite a time with Daddy. He's been getting more and more wobbly, and less and less able to follow our transfer directions. So, we've had several episodes of it taking every bit of strength the two of us had to get him from one place to another. The last straw was Monday or Tuesday (I've lost track HA!) when we had the usual bowel problem. Thank goodness I had decided to move the commode into the bedroom, instead of trying to take him in the bathroom. By the time that ordeal was finished, he just about finished all three of us before we got him cleaned up and back in his wheelchair. The Hospice nurse came not long after that, and she could tell how exhausted we all were. This time, when I asked for lifting help, she agreed that it was time.

So, what did I get for Valentine's Day???? A brand spanking new Hoyer Lift!!! Frances, our paid care giver, DH, and I learned how to use it this morning, and we were able to move Daddy from the bed all the way into the living room to his recliner, without any trouble at all. He's more comfortable, and we're MUCH happier. And our backs and nerves appreciate it, too!!

I've been pleased with how well the Zelepar has been helping me deal with all this physical and emotional strain. I did have a bout of hysterical crying this weekend, though, because Daddy's foot looked worse to me, and I felt so guilty that I had let it get that way. My head knew I'd done my best, but my emotions sure didn't. The Podiatrist was here today, and he's very pleased with how it's progressing, so that's a big relief. Hey, that's another Valentine's Day present for me!!

And, today, for the first time in years, the pressure sore on Daddy's bottom is all but healed! Present number THREE!!

I feel like a huge weight has been lifted off my shoulders. For the first time in quite some time, I really think we're going to be able to keep Daddy out of a Nursing Home. The lift, the gel seat cushion, our Estate Sale sheepskin finds, and the rippling mattress have made all the difference in the world in Daddy's quality of life. I thank God for his tender mercies.

Downs and Ups with Daddy

A lot has been going on with Daddy this week that has kept us both pretty busy. I called the Podiatrist's office Monday about his heel, and they said he would come by Wednesday evening. The regular Hospice nurse came and took a look at it and changed the bandages, telling me that the key thing was to keep the blister from breaking open. She promised that we would get the rippling kind of mattress this week, too, which is supposed to help with pressure sores, such as those on his bottom and heel.

Monday night was the worst I've had with Daddy. His usual bedtime is 6:30, but he wasn't sleepy then. That's not too surprising, since he sleeps so much during the day, but part of his night medicine is a Tylenol PM, so I can't let him stay up too late after taking that, or it would be dangerous to try to transfer him into bed. So, I put him to bed a little after 7:00PM. He spent the next 5 hours talking wildly about things like when was he going home, who were all those people, where was his bed, where was I going to sleep, and on and on. He would call me to the back every 15 or 20 minutes, and nothing I told him appeased him. When I told him he was already in bed, he would disagree, telling me he was in the car, and wanted to go home. About midnight he finally went to sleep, but the whole craziness started over again off and on every few hours until it was time to get up.

Not surprisingly, he was wobbly all day Tuesday, and I was worn out, too. So, Tuesday, Wednesday, and Thursday night I gave him 2 Tylenol PM! He slept soundly, and his walking was much better during the day. His appetite has even shown signs of improving a little.

His Podiatrist ended up coming out yesterday evening. He immediately set to cutting the whole top of the blister off!! Mind you, Hospice had told me to do everything I could to keep the blister intact. I was SO glad I had called him! He showed me a dark place in the tissue that was already beginning to develop into a deep decubitus ulcer, and said it would not have healed if it were not fixed so it could drain. He also told me to keep it open to the air as much as I could, instead of keeping it all wrapped up.

I think I've finally gotten my point across to the Hospice people that I expect preventative care as much as possible. So the rippling air mattress came yesterday!! It has many crosswise sections of air filled tubes that slightly inflate and deflate back and forth from the top to the bottom of the bed and back. For getting in and out of the bed, it can also be set to inflate completely for a firm surface. I think this will actually help, and may even keep him from getting any more sore places on his bottom.

He still has times when he doesn't know whose house he's in, but the hallucinations are not as disturbing to him as they were. His strength is returning, and with the improved appetite, he feels more like walking. So, a week that started as the worst yet has prospects of ending as one of the better ones. I'm keeping my fingers crossed!!

We Have BOOTIES!!

Finally, a good two weeks or more after I first asked for them, the nurse brought the sheepskin looking booties today. If I had gotten them when I asked, his heel would not have looked so bad, and may not have even blistered at all. She also brought the seat cushion for his chair. His bottom is also getting worse, so this will help considerably.

We spent the whole morning trying to achieve a bowel movement. I've been giving Daddy 2 stool softeners with each meal, plus a Senna laxative tablet each night. He hadn't been since last Wednesday, so this morning we went all out to get some results. Prune juice for breakfast, plus another laxative tablet. It's quite an involved process to get him in the bathroom now, but DH helped me this morning. Daddy still couldn't go. So, I used a suppository. We waited, but still nothing.

By the time we had him ready to move to his chair in the living room, everything decided to start working. So, we went through the routine to get him back in the bathroom, take care of that, and then put him on the bed, so I could get him really clean and put ointment back on his sores. Then, we got him back up and into his chair. By the time we did all that, the nurse came. His chair is a recliner, which he would not use before. But we had so much trouble keeping him comfortable in his chair or the wheelchair Saturday, that we thought it was worth a try. By propping his calves up with two pillows, we finally got his legs high enough for his heels to hang without touching anything. And he's comfortable. He immediately fell asleep, bless his heart.

He's not the only one who's worn out! DH had to take over and sit with him while we were waiting for him to finish in the bathroom, because my stomach started churning and cramping. I not only had diarrhea, but I came very close to throwing up. I think it was just from my nerves, but this would never have happened before I had Parkinson's. It makes me so very nervous to work with him, because I'm so slow at everything I do. I'm afraid he's going to fall while I'm trying to get his pants down. In fact, I'm afraid he's going to fall every time I do anything with him. Really, I'm just afraid, period. Even though I know exactly what I want to do, I have no confidence that I will be able to actually do it, anymore.

DH and I have eaten lunch, but we've left Daddy sleeping for now, as he's exhausted. DH is asleep sitting on the sofa, and I'm blogging and resting. We're all three worn out from the morning's doings. LOL

This nurse says the other nurse will bring the air mattress when she comes later in the week, which should help his bottom a good bit.

I managed to control my temper while the nurse was here, as I didn't see that anything useful would come from letting her know just how mad at her I was. My DH knew I was mad, but I don't think she ever realized it. I hope not, as we have to work with her.

But if we have another situation develop like this one, I doubt if I will be so restrained.

Daddy Stayed in the Bed All Day

Today was Frances' day to stay with Daddy, so we could go to church. As it turned out, I was just too tired to go, and stayed home and slept until DH returned from church.

Frances called before he left for church, though, to say she wasn't comfortable trying to get Daddy out of the bed. She had tried, and he was just too weak. So, she sat with him in the bedroom, changing his position, feeding him, changing Depends, all day long.

When we took over this afternoon, I had him go through some mild therapy exercises, just to see how stiff he was from being in the bed. He seemed to be moving OK, and said he didn't hurt anywhere. His heels are hanging off a pillow, so they're taken care of. His bottom looks no different than it did, certainly no worse. He even let me feed him oatmeal tonight. That's the first time I've fed my Daddy a meal, since he had his pacemaker surgery over 15 years ago. He surprised me by being willing to let me do it. Since there really wasn't anything for two people to do, once he had fixed the oatmeal, I sent DH home early tonight. No need for him to sit in this hot house if he doesn't need to.

We listened to the Super Bowl on the radio, and Daddy stayed awake until it was over - way past his usual bedtime. He made several remarks about not being able to find his bed, so I went through the whole explanation of which bedroom he was in, and this is his house, the whole thing that gets repeated night after night. By the time the game was over, he seemed content that he knew where he was, and promptly went to sleep.

It's after 10, and I'm beginning to yawn now, so I'll finish up and try to get some more sleep. Hopefully, tomorrow, Daddy will feel like getting up, and will be strong enough to do it.

For the Want of a Nail .....

It's pitiful the domino effect one small problem can have on the well being of an elderly person.

From the start of putting Daddy in the hospital bed, he has been very touchy on his left heel when I'm getting him dressed in the mornings. I had already, some time ago, asked for help keeping his heels in good condition, as I had noticed some splotchy areas there. The nurse said she would order booties. When they didn't bring them, I asked the next nurse I saw about them, and she said she would take care of it. Well, the booties didn't come, and yesterday morning Daddy had a water blister on the bottom of that left heel that is huge.

Even though it was Saturday, I called the after hours Hospice number, telling them about his heel. The nurse had a call to make in the opposite direction from us, but she said she would see him sometime that day. Sure enough, she did come about lunchtime.

When she measured the blister, it was 2" by 3"!! His whole heel has broken down!! No wonder it was hurting. She used an ointment on it, padded it with gauze, wrapped his foot in Coban, and reminded me to hang his heels off a pillow and not let them touch anything. She said I did the right thing calling, and she thought it had been caught soon enough that it would heal quickly. Of course, Daddy is diabetic, so quickly is a relative term.

I'm just sick about that heel. I've been going to his house to fix breakfast and put on his shoes and socks for years now. I always checked his feet and made sure I smoothed out any wrinkles in his socks, before putting on his shoes. Now, too many people are dressing him, and I have no idea how the blister got started.

So, for want of a nail, the battle was lost. Hopefully, our battle is not lost, but it certainly has been put in jeopardy! Because of the huge bandage on his foot, he can't wear his shoes. Because he can't wear shoes, he's not as sure footed when he tries to stand up. Because he's having trouble standing or walking, he had to stay in the wheelchair almost all day long. Because he's in the wheelchair and not walking to the bathroom, he's not getting any exercise, so his legs are even weaker. Because he's sitting almost constantly, with his legs up, the pressure on his bottom is greater, so the sores on his bottom are getting worse!

The nurse was obviously concerned that I had not gotten the booties when I asked for them. She said she would see to it that the medical supply company brought out the seat cushion, booties, and an air mattress as soon as possible. We'll see.

This is exactly why I don't want to put him in a nursing home. If his skin has broken down here, with me asking several times for the equipment that would have prevented it, how much longer would they have waited to deal with his skin, with no one around to remind them??

We spent the day yesterday trying to keep him as comfortable as we could, what with his bottom sore and his foot sore.

This was not the Hospice we had used with Mama and Pop, but the one the doctor's office made arrangements with. I'm seriously considering switching Hospices. That means returning all the equipment and getting another set from the Hospice we liked, but at this rate, it will be worth it!! It all depends on how long it takes them to get this equipment to us this week. If it's delayed, they're fired, no matter how much of a hassle it is!!

What a Difference the Right Equipment Makes!!

This morning was my first chance to take care of Daddy from a hospital bed that worked properly. It made quite a difference, although I still had problems getting him to follow my directions. I was able to change him out of the night Depends, clean him up, and get fresh ones on, put on socks, pants part way, and shoes, before I ever let the bed down for him to sit up. That is a BIG help. He rolled away from me, following my directions perfectly, but when it came time to roll toward me, he kept trying to climb over the rail!! DH heard me struggling to get his legs back in, and came and helped me get him on his side, so I could finish the Depends. Next time, I'll put his trousers on around his ankles first, so it will kind of "hog tie" him. LOL

Having the right equipment does make all the difference in the world when care giving. I've been very concerned about Ruth and Mick, after seeing the terrible bruises he gets from a wheelchair that doesn't fit his needs properly. I wrote The Voltage Gate and A Hearty Life, thinking that they might have some scientist friends who could help her adapt the wheelchair better. If you know anyone who might be able to help her, I sure would appreciate you sending them the link to her post.

Anyway, we continue to take one day at a time, even one hour at a time, with Daddy, just trying to keep him as comfortable and as mobile as we possibly can.

Strange Things Are Hapnin'

I went to my Neurologist last Friday, and I explained to him all that had been going on the whole time I was trying out the Zelepar. He agreed that the medicine had not received a fair chance at working. So, he gave me a prescription for it, with instructions to use if for a month. If I was not pleased with the way it relieved my symptoms, I could then add the Requip I have taken before back to my schedule. Now that my digestive system is behaving, I told him I thought I could handle the Requip just fine.

Of course, being the little town that ours is, our Pharmacy didn't have the Zelepar in stock. He has to order unusual medicines, but they come the next business day, and that works OK, most of the time. Of course this was Friday afternoon, when we dropped off the prescription, so I was without all weekend. I did the only thing I knew to do - I used the Requip I already had. My tummy didn't complain a bit, either.

My throat is still irritated, and I finished the antibiotic today, so I'm thinking I'll see if the nurse will swab my throat again, or just refill the prescription. I'm not convinced that the strep is gone, and I can't afford a relapse. I had rheumatic fever as a baby, so my heart is particularly vulnerable to strep infections.

I'm feeling good about the medicines Dr. S. has me on for the Parkinson's now, and I'm sure my GP will take care of my throat, so things are settling down for me.

It's just as well, because Daddy continues to decline. His arm is much better, thanks to the arm band, but his mind, and his body in general, continue to go down hill. We've had some difficulty all along getting his bowels to move, as one might expect from a 101 year old. I was using the glycerin suppositories I had to help him go, plus he is on Colace as a stool softener. The last time I used the suppository, it didn't help, which I thought was strange. So, I figured, since I use two of them, I'd use two on him. To my surprise, I discovered the first suppository still in place - not melted in the least! His body temp is so low that it didn't dissolve!!

So, even though I had been trying to put it off, I felt I had to call the Hospice Nurse, and request help giving him an enema. The enema was an ordeal for him, but it helped. That was yesterday. Today, his strength is noticeably less, and his confusion is noticeably more. His mind and body just can't cope with any kind of assault now, even if it's for his own good. Going to the Orthopedist sent him downhill, and the enema just pushed him that much further.

I can only pray that I will do well on the Zelepar, or the Zelepar and Requip combination, as I think it's clear that Daddy has taken a definite turn for the worse. In God's good time, this will all work out. I just have to take one step at a time, and leave the end results to Him.

Can I Keep Daddy in His Own Home Any Longer?

It looks like it's time to consider a Nursing Home for Daddy, something I never wanted, and he certainly won't want.

The last couple of weeks have been busy ones, as far as taking care of my Daddy is concerned. He woke up two weeks ago with his right arm in such pain and so stiff that he's been having to eat breakfast left handed. He can't even get the spoon to his mouth with his right hand. The Hospice nurse came and checked him out, but she couldn't find anything in particular going on. She did get a prescription for Ibuprofen, so I've been alternating every four hours with the Motrin and Extra Strength Tylenol. By lunch time his arm has been better, but it starts all over the next day, just as bad as the day before.

With his arm like that, he's having more difficulty getting out of his chair and the bed. Eating has been very frustrating for him, and he's having more trouble using the walker. I've been trying to help him get up and down, to give his arm a chance to heal, whatever has been wrong with it.

Day before yesterday, the nurse looked at it again and was concerned about a good bit of fluid build up around the elbow and upper arm. I knew his hand was swollen, but I hadn't realized the upper arm was larger, too. Anyway, she made an appointment for us to see his GP, Dr. M., in case it was a hairline fracture from the original fall, or something like that.

I didn't realize until yesterday just how much worse Daddy is than he was when he first fell. Trying to move him from the chair to the wheelchair, and then from the wheelchair to the car, was just about impossible. I wore myself out trying to do it. Luckily, Frances, our sitter, was there to help move him into the car, and she was panting by the time he was in. It's so much different than when we took care of Mama and Pop. They were both small people, not weighing more than 100 pounds, and they both cooperated. Daddy is about 160 pounds, and he's a dead weight. To make matters worse, he doesn't trust anybody, so he kept grabbing hold of the car door for dear life, and we had to peel his hands free to get him to hold onto us to maneuver him.

We asked for help at the doctor's office, getting him out and back in, so at least we didn't have to struggle with him there. But then, of course, we had to get him out of the car and back in the wheelchair on our own when we got home. He wasn't any easier to move then than he had been at first.

The whole ordeal was extremely upsetting. The worst part of it was that the doctor no longer has an X-ray machine, so it was more or less a wasted trip. We have to see an Orthopedist next week. That means going through all this again. I did mention to Dr. M. that I had a sore throat, so the nurse swabbed it, and I have strep. So now I'm on antibiotics. At least we accomplished that!

Yesterday's events have forced me to reconsider just how much longer we are going to be able to keep Daddy in his home. I can see that he's fast reaching a point where I won't be strong enough to take care of him. My DH and my Daddy have always had, shall we say, a cool relationship with each other. So DH gets frustrated with him, and Daddy stays mad at DH. My hubby is here for me, and doing a great amount of the work, but he's just not up to the cheek to cheek "dance" it takes to move someone who's not able (or willing) to help. And I've had a lot more practice at it, too. It is a skilled maneuver, but with Daddy, I'm just not strong enough to do it well.

So, I started thinking about Assisted Living homes vs Nursing Homes last night. I really don't think an Assisted Living place would take Daddy, but he's so mentally alert most of the time I hate the idea of a Nursing Home. I don't think I'm going to have a choice, though. We had visited just about every good Nursing Home in this area when we were caring for my mother and father-in-law, so I have a pretty good idea which ones to check for vacancies.

We have an appointment Tuesday with the Orthopedist, and his diagnosis of what's wrong with Daddy's arm will have a lot to do with where we go from there. If he puts Daddy's arm in a sling, we're in a mess. So, we'll get through the next few days as best we can, and go from there.

All this has been happening while I was supposed to be giving the Zelepar a fair trial. Considering how yucky my throat has been the last couple of weeks, and how much more work has been involved in taking care of Daddy, plus the extra stress of seeing him deteriorate, the Zelepar really hasn't gotten a fair trial. I'm not walking as well as I did with the Requip, but my stomach is definitely better. From recent reading I've done, I understand that this is the maximum dose of Zelepar, so that's not likely to improve, unless it's because of the increased stress, or because I had strep, and that effected my walking.

So at the moment, my thoughts are up in the air, with lots of questions, but no clear way to answer them right now.

My Digestive System Is Behaving! Not So Sure about Us??

It looks like the Gastroenterologist has found the right combination to get my digestive system working again in a manageable way. I haven't had any pain or bloating now for several days, and I've been able to eat some things I wouldn't have dreamed of trying just last week. I still don't have an appetite, but I still need to lose weight, too! So I'll count that as a blessing for right now.

We had our Date Day today, instead of yesterday, because our respite care giver couldn't come yesterday. We had an enjoyable day together, not really doing much, but just relaxing. With my balance as wacky as it is right now, there's not much else we could do.

Daddy, DH, and I had our first big flare up of tempers this evening. It was just a matter of time before it happened. We've been trying to stall it by getting out of the house a couple of days each week, but it was inevitable.

Daddy hates the idea of having anybody in his house, doing things he would normally be doing, or changing his routines. He's been independent too long to take easily to having DH and me here, and certainly to having Frances here two days a week. And he hates not being able to take care of himself any more.

We've understood how he felt, so we've been biting our tongues ever since he fell, as his bitterness shows through in almost everything he says to us. Hopefully this show of temper on all our parts will clear the air for a little while, but that remains to be seen.

So my relaxing day had a somewhat dramatic end, but as thick as the tension has been around here, it may well have been for the best in the long run. I can only hope so.

Care Giving Ain't What It Used to Be

It's only been less than 4 years since we were care givers for my FIL, keeping him at home with the help of Hospice, after he had been in the hospital. He was in a very nice Assisted Living Home before then, because he resented us, probably for taking him out of his home, and we couldn't handle his violent outbursts. They never had any problems with him at the Assisted Living. It was an emotionally draining job, but one we have never regretted doing.

Here I am, just 4 years older, and taking care of Daddy has worn me slap out, thanks to PD. My dear hubby has really had to take up the slack and get much more involved in taking care of my Daddy than he would have had to, if I had not developed Parkinson's Disease. As an example, a couple of days ago my legs stayed wobbly all day long, even after I took my PD meds, and I didn't trust myself to help Daddy walk, so DH had to do it.

First off, the emotional stress of finding him Friday started me off "in the hole" so to speak, and my medicines never have been able to catch up.

Also, I've not been able to get a decent night's sleep at Daddy's. The same recliner that I slept in for several years when I stayed with Mama is no longer that comfortable to me, and that's the only place there is for me to sleep. So, I end up going to sleep early, waking up somewhere around midnight, and spending the rest of the night on the computer. Luckily, I've been dozing quite a bit on the computer during the rest of the night hours. But that's still a poor second to a good night's sleep.

So we decided the best thing to do was to try to get Home Health or Hospice here to give us some help. That's why we took Daddy to the doctor's Monday. Well, Dr. M. followed through, just as I expected him to. The Hospice nurse came today to admit Daddy, and I filled out all kinds of paperwork. They will be sending someone twice a week to help him bathe, a nurse will come by once or twice a week, and they will provide all Depends type products and most of his medicines, too. They're sending a wheelchair Friday, so we can take back the one we borrowed.

Daddy understands that I need the help, so he's being very agreeable to all this. She offered to send a hospital bed, but Daddy's not ready for that yet, so she said just let her know when he needed it. It's not a whole lot of help, but any is better than none, and with his age and all, he's bound to need more and more care from now on. This way, all the routines are in place, and he'll be used to the people coming and going and being in and out of the house. It should certainly make things easier for DH and me, knowing that he's being seen by a nurse each week.

Took Daddy to the Doctor

We did take Daddy to the doctor yesterday afternoon. We borrowed a wheelchair from one of our church friends, and we have a very nice ramp left from when Mama needed it, so that made getting him there less of a hassle. The worst part was the long wait at the doctor's office. We had a 2:00 appointment, but didn't see him until after 3:00, and that's normal. If he weren't so conveniently close to the house, we wouldn't put up with it.

Anyway, he started talking about MRI's and tests on carotids, and I told him that we wouldn't be doing any of that, because we wouldn't be following through with any of the results. That took him aback for a second, and then he stopped and thought about who his patient was, and agreed with me. I told him my concern was if Daddy might be developing pneumonia, which could be dealt with, and could he get us some help from Home Health or Hospice. I told him that the stress and extra work of the last few days had exhausted my Parkinson's meds ability to cope with my symptoms, and that my legs were very wobbly. He agreed that Daddy should qualify for some kind of help, and he would get his office lady on it. He gave Daddy an antibiotic shot and a prescription for more antibiotics, and that was it. He agreed with me that it appeared that he had suffered a small stroke, but was reluctant to start him on Cumadin or any other blood thinner, because of his age (he's 101).

So, it was a long day, and a tiring one, as only waiting in a doctor's office can be tiring, but I think we accomplished what I had hoped we would. This doctor will get him on Hospice if it's possible, and that will be the help we need to keep him in his own home. The one thing Daddy dreads is ending up in the hospital or a nursing home, and it's important to me that I help him have the Quality of Life that he wants, even if it shortens it a little. As long as he has lived, I don't think that's a bad thing. With the extra help, and all the help that my DH is giving, we'll make it through this. We've known it was coming, as it was inevitable, but it's still harder to deal with than we had planned, thanks to the Parkinson's leaving me with so little stamina.

Information on Swallowing Problems with PD

One of my dear blogging friends, Marion, asked me in her comment today for help planning a menu for an Advanced Parkinson's guest she was expecting, who has trouble swallowing. After Googling on the subject, this seems to be the best general information I could find.

This is an excerpt from a very well written pdf article titled, Parkinson's and Swallowing.

It is important that you continue eating your regular food until you are no longer able to do so safely. A regular diet with a wide range of tastes and textures is important to keep all of your muscles working, and encourage proper nutrition and hydration. Only if you begin experiencing significant difficulty, you may need to adapt your diet. While each individual will have different problems and therefore different solutions, the following suggestions may help.

SUGGESTED FOOD

• Food that is soft and moist, with a good flavour and smell, tends to be easier to swallow: custards, jelly, pureed fruit, sauces, spices and herbs.

• Avoid foods which are hard, dry, crumbly or stringy.

• Avoid mixed consistencies (e.g. solid plus liquid).

• Be careful with foods which stick to the roof of the mouth or get caught around the mouth: dry mashed potatoes, tomato with skin on, biscuits, bran flakes, hard-boiled eggs.

• Thicker fluids (e.g. nectars, milk shakes) may be easier to control and swallow than thin clear liquids, as they move more slowly.

• Keep food presentation appetising: flavour, smell and appearance of food.

• Relax and enjoy your food. It is good to have a break between mouthfuls and take sips of water during the meal. This will not only help you relax, but also allow you to clear your throat and mouth. You may need to swallow twice to clear each mouthful.

• Eat smaller portions more frequently, especially if time for meals is limited.


POSSIBLE PROBLEM FOODS

• mixed textures, like liquid with bits in (e.g. minestrone soup or watery mince);

• flakey biscuits;

• hard toast or nuts, chocolate, grains, seeds;

• stringy, fibrous vegetables


FOODS THAT MAY BE EASIER TO SWALLOW

• milk

• mousse, custard, yogurt, ice cream

• souffle, omelette

• casseroles

• soup (Creamed would be my suggestion, based on other articles I've read.)

• fruit juice, pureed fruit

• pancakes (with syrup etc.)

• soft boiled rice

• well cooked vegetables

• banana.

Hopefully this information will be of some help to Marion as she plans her menu, and possibly to others as well.

Having My First Bout of Med Side Effects

The nausea started yesterday evening, and it's continued today. I wasn't having any until I changed the Sinemet dose from after meals to before meals. But the more I read, the more it seemed that the way to get maximum benefit from the dose is to take it 30 min to 1 hr before meals. That gives the medicine a chance to get out of the stomach before the food hits it. I am eating a few crackers with it, though, out of necessity. Crackers don't have any protein in them worth counting, so they won't cause absorption problems for the Sinemet in the small intestines.

I really think I just ate too many grapes the last few days, trying to increase my intake of antioxidant foods. Since I have GERD, too, it's hard for my system to handle any citrus fruit. Plus, I've been drinking Powerades to keep my fluid intake high and boost my vitamin K. I'm on a diuretic to keep my feet and ankles from swelling, so I need the fluids and the K, too. I had gotten tired of bananas when I had colitis so long, but I guess they're back in my diet, along with plain water.

I'm eating macaroni and cheese for lunch, and I'll stay on the "white diet," I call it, until my tummy calms down.

Developing Our Plan of Attack

In order to understand my approach to having a chronic illness, you need to know a little about me and my side of the family. My grandmother had and my Daddy has Macular Degeneration. My Daddy has been legally blind now for over 30 years, gradually losing more and more of his sight, but never doing anything to prepare himself for being blind.

I've said for years that if I were ever diagnosed with the beginnings of MD, I'd immediately start learning Braille and take classes on how to take care of myself from a low vision standpoint.

My approach to any illness is to search the Internet for every bit of information I can find. I have a Chemistry major, with a strong background in Biology and Biochemistry, so the technical papers usually make at least some sense to me.

With that said, it shouldn't be so surprising that I've spent almost all this week researching everything I can find about Parkinson's Disease. I've found bits and pieces of information on various sites that I've bookmarked for myself, but the links that have the most information, presented clearly, I'll be listing in the right hand column.

DH and I are working together, bouncing ideas around as we try to understand how to balance the medicine with the foods that interfere with the medicine, but are necessary for good health. I did my first set of the PD exercises today, and DH bought a different cereal for me, based on the nutrition information I found.

By the time I see the Neurologist again, I should have a good idea what I need to ask him about. Of course I'm still assuming the DX is going to be PD, but at least I feel like I'm doing something besides waiting for the next appointment.

Starting Now to Work on Future Quality of Life

We had our Date Day today, spending a pleasant day going from one Estate Sale to another. We found what I think will be a few really good purchases, but we won't really know until we put them up for auction and see what they sell for.

We went to one sale that was right around the corner from the house I grew up in. It felt really odd being back in such a familiar neighborhood, but I'm glad we went. I told the fellow who was having the sale that I trick or treated at that house all through my childhood. We did buy a few things there, too. And we swung by my old home, just to see how it looked. My old street still looks pretty much as it did when I was a child, which is truly amazing, because this area of town has become run down over the years.

We had decided if we could not find an adjustable cane at a sale today, since we've been looking for one for several weeks, we would buy a new one on the way home. So now I have a cane, too! I searched the Internet and found Exercises for the Parkinson's Patient. Until I find out otherwise, I'm assuming my improvement means I do have Parkinson's, and I'm starting now to think about what I eat and what I can do physically to improve my quality of life for as long as possible.