Mouth Spasms Still a Problem Sometimes

I have had a couple of days since the great improvement that have not been as pleasant as most have been, and yesterday was one of them. It starts out innocently enough, with a little mouth movement in the mornings. But as the day progresses the twitches get harder and harder.

I have tried relaxation techniques, getting busy and trying to ignore it, and chewing gum, but once the twitch starts I don't seem to be able to get it stopped. By the end of the day my whole face aches from the constant muscle spasms. The same thing happened late July 4th Holiday and all day Saturday, which I attributed to just being tired from all the family celebration and noise. But yesterday has no explanation.

When I tried to go to sleep I became aware of small muscle tensions and aches here and there all over my body, and I had one of the worst foot cramp episodes I have had in some time. Not only the toes, but also the arch went into full spasm, and it took pushing with a lot of pressure to get it stopped. I had to get back up and stand on my tiptoes as best I could to get rid of it.

Luckily I am sleeping well now, so once I was asleep it went away. Our bodies are naturally paralyzed in our sleep, so it gives some relief from the spasms. My mouth is behaving itself this morning, thank goodness. I can only hope that it continues to stay calm.

I am beginning to use an exercise/relaxation tape every other day now. I do pretty well with the upright exercises, but I am just pitiful on the floor. It's all I can do to get down there and back up, let alone do the stretches. But I try. Then when I do get back up it takes me a good bit of moving around to stop the cramps in the tendons at the upper thigh. My whole body is clamped down tighter than a drum, and it's going to take some doing to get any flexibility back. One day at a time, being a little more active each day and increasing my range of motion slowly, is the only way I know how to do it.

Even though the mouth problem and the foot cramps are very painful and aggravating, I am still so much better than I was that there is no comparison. I continue to be so thankful for my vast improvement and remain optimistic.

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!

3T MRI Today

I had the high powered MRI today. Up until a few years ago it was only used in research facilities, but now it is being used for clinical diagnoses. It uses a much stronger magnet than a regular MRI, which means it gets a much finer image of the brain. That's the good part.

The bad part is that it is horribly loud. Even with the headset on to muffle it, I found the high pitched sounds at the beginning and somewhere near the middle to be excruciating. I took a whole Clonazepam pill before having it done, hoping it would diminish my tics somewhat, so they could get clear pictures. They also put extra padding on each side of the helmet like halo to further stabilize my head. They had a good cushion to put under my knees, so I did not have to try to keep my legs bent to deal with the back problems. That was a blessing.

We had to walk through about 4 blocks of hospital buildings (all the buildings have crosswalks over the streets)to get to the MRI section, because the Parking Deck we were supposed to use was Full. There was no way I was going to be able to walk back after the test, as I was way too wobbly, so we waited for transport to take me in a wheelchair.

We have two weeks now to wait for our next appointment with Dr. Watt's team to find out the results of all the tests. so, I'd appreciate it if you would keep us in your thoughts and prayers. There's still a part of me that cannot let go of the thought that all that has been going on with me for the last two years is psychosomatic. I may not be crazy, but I can't shake the thought that this is all my fault - that I have brought all these symptoms on myself as a stress reaction to the last ten years plus of difficult care giving. I desperately need to KNOW what is going on. I need strength to survive the wait.

Unexpected Aftermath of EEG Test - Still on Clonazapam

I had an EEG back when my own Neuro was trying to decide what was wrong with me, so I knew what to expect. Well, I thought I knew what to expect. My "good" left foot has been extremely painful and difficult to walk on for the last few days. At first I blamed it on all the walking we did at the cemetery in my Sketchers, which I now use as Sunday shoes. But I don't think that was the culprit.

I was on the exam table for about 45 minutes, jerking and shaking the whole time. I can't lay down flat like that without setting off back spasms, so I put my good knee up and had my bare foot pressed against the thin pad of the exam table. I must have been pushing down on my foot a lot harder than I realized, in an effort to bear the discomfort of all the jerking. It is gradually improving, but I noticed yesterday that my thigh is also aching. My foot was hurting so badly that I had not even noticed the leg. So, I've decided that's what is wrong with my foot, rather than my shoes. Those are the only unclunky looking shoes I have been able to wear, so I am glad that they probably did not cause my good leg to give me so much trouble.

You are supposed to go up with the good and down with the bad leg, so it was comical yesterday at church trying to figure out which foot to lead with. One hurt, and the other shook! LOL I decided it was safer to lead with the painful one, rather than the jerky one. At least I was less likely to fall.

Speaking of shaking, the Clonazapam may be helping some, particularly with my mouth, but I am staying in a stupor, sleeping through my morning pill alarm, and just generally fuzzed out. He says it will go away --- I sure hope so. Otherwise, I won't be able to take this med.

I can't see any improvement in my foot or my shoulder jerks, though. I'm waiting now to hear about my MRI appointment. I am going to call them today, since we still have not heard from them.

Patience ... still haven't learned it.

It's Been Awhile

Well, the income tax forms appear to be ready, and I have turned over the administration of my TopList to a really great Villager, aka CyberCelt, so those two weighty items aren't bearing down quite as much these days. We can't mail the tax forms yet, because now we have to figure out the forms for the Estate. That scares me just thinking about it. As for BLOG VILLAGE, I'm still finding various links and services that need to be moved to CyberCelt. But I don't mind that, as it is one time thing.

Hubby has recognized that I've been more stressed than usual, but he has said several things that make it obvious he doesn't understand why I'm more stressed than usual. Doing taxes has always been my responsibility, so I feel the pressure more than he does, even though he worked on this year's with me part of the time. And the appointment with Dr. Watts grows closer, too, which increases my nervousness. I've come to terms with the idea that I do not have the disease I thought I did, but the unknown still scares me. It's not that I think it's something worse like a brain tumor. I just don't like the uncertainty. God is trying to teach me to enlarge my Faith Muscle.

I'm not getting any relief from the Lidoderm patches, which is disappointing. But the Physiatrist and I both agreed that he should try the least amount of meds first, because of the April appointment. I am still using them each day, but I can't tell they are doing any good at all. Of course, if I didn't have it on, I might be feeling worse than I am.

My foot continues to jerk uncontrollably any time I relax my leg, such as when I put my feet up in the recliner. I still walk with an awkward gait, but I'm doing OK. The mouth tics haven't been so bad lately, though, which is a blessing. Maybe the Novacaine from the Lidoderm patch is helping my mouth, as I put the patch high on my shoulder as close to the neck on that side as I can get it.

I'm sleeping just fine. Evidently all I really needed was to train myself to not mouth breathe, or it might be that the PD meds were aggravating the apnea. Who knows.

I'm still having trouble setting priorities and finishing tasks. Right now I'm still spending a good bit of time tying up the loose ends of BLOG VILLAGE, plus the Search Service is getting so much traffic that I can't possibly keep up with it. I need to figure out some way to get a partner on that blog, but I'm not sure how I could do that. Our Plush Toys business is doing quite well, which is very satisfying. It's fun to help people find toys they have been looking for, and I know I don't want to stop that. I just need to figure out ways to be more efficient.

I have started a new blog. I know - that sounds crazy, doesn't it. But I needed to help get the Catalog of our toys online so we could sell them quicker than I can on eBay, and that means increasing the traffic. Blogs are a good way of doing that. And starting a blog is not really that hard. I won't be making many posts to it, but it will give our Catalog more links in, which Google loves.

I guess that brings things up to date, and now I'll get off the computer for the night and watch some TV.

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.

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.

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.

First Physical Therapy Session

I went back to the same PT I have used before, and I was fortunate enough to get the same therapist. She asked lots of questions about what brought on the stiff and painful neck. She manipulated my head, and we chatted a bit about how my diagnosis got undiagnosed. I gave her the link to Patients Like Me, and I hope she takes me up on the invitation to join.

She seems to think that the electrical stimulation (TENS) and ultrasound will help these muscles relax, and she expects to do some stretching exercises on Friday. Bless her heart, but she remembered that Friday was our Date Day, and apologized for messing it up. But DH will be fine with that, as this is only for a few weeks.

We did something this afternoon we have never done before. I made a smoothie! Hubby bought me a blender for Christmas, because I had said something about wanting to try some. I mixed a banana, raw spinach, a little parsley, some soy milk, and a touch of honey, and we both tried it. It wasn't half bad, and we both drank it all. Not bad at all for my first attempt.

It always makes me feel better when I feel like I am taking control of a situation, and getting the PT started and learning a way to improve our nutrition is a good start for one day. Yippeeee!

Less Computer Time = Getting other things done!

Well, I have pretty much stuck to my intention to stay away from places where PWP are describing their symptoms. I have visited the PLM site a few times, and even made a few comments, but I have been cautious about the type of posts I opened, to avoid reading about anything tremor related. I have not done any research on PD, either, other than to try to find a correlation between heavy steroid use with Parkinson's. This was not for my benefit, but for one of my readers, who asked some interesting questions.

My neck continues to be very stiff and painful, but I can put up with it, knowing I will be getting help next week when I start Physical Therapy.

I am pretty much caught up with posting requests for help on the Plush Memories Lost Toys Search Service, and we are over the Christmas rush on eBay. I still need to put a new post on our Yesterday's Memories blog, and there is always work to do on the BLOG VILLAGE TopList that I run.

So, I have been getting some much needed house clutter cleaning done, but there is plenty more that needs to be done. I would like to have the house straight for the New Year. At least it can start that way LOL.

We did have a great Christmas, seeing all of our family all at once, and enjoying being with our grandchildren. It looks like we actually managed to buy them some things they will enjoy, and that's not easy to do when they hit those preteen and teen years. They all have birthdays right after Christmas, so we will be seeing them again real soon, too.

Hubby gave me a blender for Christmas, so now I can learn how to make Raw Foods Smoothies, something I have been wanting to try for some time now. Jackie, from The Vegan Diet, clued me into The Raw Food Coach, and since we eat a lot of raw foods, anyway, I have been learning as much as I can about what foods are the best for me. I have been doing a lot of research on the high anti-oxidant Super Foods, and we are gradually changing our diet to include lots of them daily.

We have had a lot of fun at our house of late with trying to get our very spoiled (neurotic) inside cat to accept our two outside cats as occasional inside visitors. They are too young to leave outside all night when it is freezing, so we bought a pet cage for them. They don't mind being in it at all, which surprised us, but it sure makes going out of town easier. We keep our inside cat in the hall bathroom when we are gone, and now we can keep the outside cats protected, too. Our only problem is that Miss Queen Fluffy doesn't like having them inside. There have been quite a few fights between Fluffy and Mr. Salt. Miss Pepper stays out of the rough stuff, as she has some kind of nerve damage to one of her hind legs. She is the main reason we decided to bring them in on cold nights and when we are out of town. Fluffy surprised us last night and behaved the whole time they were in the house. Maybe she's finally adjusting to them, I hope.

One of my anonymous readers has given me a clue as to what my diagnosis might be, if it's not Parkinson's. So, I have started doing some research on Dystonia. Also, there was a new post today on PLM discussing Ataxia, and that sounds familiar, too. I already feel better, knowing that there are other conditions that my symptoms seem to fit. It makes me feel less like this is all going to turn out to be psychosomatic. I can't bear the thought that my body has been going through all this due to an emotional problem. With other possibilities in sight, I am in a much better frame of mind than I was yesterday, thank goodness. So, Marion, the glass is looking more and more like it's half full, again.

As always, I appreciate your prayers and concern, and love to hear from you, even if it's just to say HI!

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.

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!!!!

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!!

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!!

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.

Starting Requip Again - Stopped Physical Therapy

Yesterday was my last time for Physical Therapy on my knee for now. I called my insurance company, and they only allow 15 PT visits a year, unless THEY approve the extra ones, and I've used 7 of them already. So, I figured I'd better leave myself with some, in case I have other problems before the end of the year.

I asked her about using the mini trampoline we have, and also a little stepper and an exercise ball. Her concerns had to do with balance, but other than that, she thought they would be fine. She said the stepper was a particularly good one for a PWP, because of the repetitive alternating motion. Of course she cautioned me to go slow about adding minutes to it, and to rest every other day or every two days. She's very emphatic about reminding me that the Parkinson's means I have to rest my muscles more than other people would need to. But she emphasized that I need to be on a regular exercise program the rest of my life.

I did start on the Requip again yesterday. Even though I've been doing all this exercise and my legs are definitely stronger, I'm still walking very slowly. It's called Bradykinesia, and it's always been my main Parkinson's symptom. Requip has some pretty uncomfortable side effects, as most of the PD meds do, it seems, so I really tried to do without it. But I just don't think the Zelepar is enough on its own. Dr. S. told me to use my own judgment on starting it back, so I've decided it's time.

I did get nauseated before lunch yesterday and I had a headache last night. Plus, this morning, I got light headed while I was taking pictures for our eBay listings. I stood still too long, I guess. Anyway, I had to stop and sit down, as I broke out in a cold sweat and could feel myself getting woozy. The worst side effect for Requip, though, is compulsive behavior - if that starts up again I won't be able to use it, for sure.

The PT worked me pretty hard yesterday, knowing it was my last visit, and I was very uncomfortable last night. I ended up taking 2 Lortab to stop the pain in my legs. At least that meant I got a good night's sleep! They don't seem to be as sore today, so that's good.

I'm having the MRI today at a different place, called a Stand Up MRI. That will be a new experience. It makes me wonder if that was chosen to get a different view of my knee, as there is a regular tunnel MRI place in the same building with my doctor.

I just realized that I forgot to call the Orthopedist's office yesterday to make the follow up appointment. I'm really having a hard time remembering to do everything that needs to be done nowadays. Hubby tries to help me keep it all straight, and I make lists like crazy. I've even started using the task reminders on my Outlook program to try to help. Of course I have to remember to put the reminders in the program LOL!

I got an email from the other PT patient who has Neuropathy last night, and of all things, we live in the same town!!! I'll be doing some research on her particular type of Neuropathy and adding links to it, if I can find anything specific for her. I wonder if she lives anywhere near the EPA toxic site, the way we do????? She's in far worse shape than I am, and the doctors don't know what's causing her problems, either. And she's young. I've added her to my prayers, and I hope she and I can continue to correspond.

It was a day of changes yesterday, but hopefully they will be good changes. Only time will tell.

Wonderful Weekend!

We used our Date Day Friday to work our way up toward Huntsville, where our younger DD's family lives. We haven't been to see them at their home since last Summer, thanks to all that's been going on with me and with my Daddy. So, we had a wonderful time getting to visit. We even got to watch our twin granddaughters play in their Softball game.

My knee behaved itself, although I was careful to use the cane up and down her steps and at the ball park. When we got home, I have a message to schedule the MRI, as insurance has already approved it. Our older DD has a couple of job interviews lined up, the Will stuff is moving along nicely, and our eBay sales have picked up, now that I'm listing new items almost every day.

We even had rain today, which was so badly needed around here.

Speaking of weather, however, reminds me to say a prayer for all those poor people who have lost everything - even their town - in the Midwest, from tornado damage. May God's hand be felt close to them. He's always there, but sometimes we just don't realize it. I pray that they will feel His strength and comfort in this horrible time they are all going through.

I'm sorry I've not been able to get back to reading everyone's blogs yet. It just seems like my list of things to do gets longer, instead of shorter! LOL And I do appreciate you checking on me, particularly since I'm not reciprocating.

I'll be calling my insurance company tomorrow to find out where I stand on the number of PT visits I'm allowed, but I do have a PT appointment for tomorrow, anyway.

I'm looking forward to a great week, and I hope you have one, too!

Getting Back to Normal?

I've gotten a lot done in the last few days. We've had the appraiser out to the house, the taxes are ready to sign and mail, and I'm almost finished with the tax bookwork for our paid caregiver. I finally gave up and went to the Orthopedist about my knee and shoulder, too. The X-rays showed the degenerated cervical disk I already knew about, and arthritis in my knee, which wasn't surprising. Dr. J is guessing that I have a torn miniscus, but it will take an MRI to determine that. From what I've been able to read on the Internet, that seems like a reasonable diagnosis to me, particularly since it was injured when I was shifting Daddy up in the bed.

I'll have to go to Physical Therapy and stay on Extra Strength Tylenol 3 times a day before my insurance will agree to the MRI. That's fine with me, as far as the therapy goes, as I'm sure it will be helpful. The Tylenol doesn't even faze the pain, but I'm following his directions and taking it regularly.

We're still walking at the track early in the mornings, but it's been way too cold the last few days. Alabama is having record cold weather right now. So, we've been doing exercises from videos. DH is REALLY following the tape, and I'm bouncing on one of those little trampolines and doing as much of the arm movements as my shoulder will let me.

I'm still just taking the Zelepar, hoping that the exercise and whatever the doctor does for my knee will be enough. I just don't want to try the Requip, if I can possibly help it.

We had our usual Date Day Friday and enjoyed looking at lots of Estate Sales. We've never been able to be an Early Bird before! It was strange to get there before most of the stuff was gone. And we did manage to pick up a few good buys, I think.

It's been ages now since I've taken pictures and put anything on eBay, but I'm going to try to get back to that this week. We have an almost overwhelming amount of "stuff" we've bought in the last few years, and I haven't been able to work seriously on our online sales for almost 2 years. With so much of the Estate business started now, I'm ready to get back to NORMAL.

Still about the Same

I've called Hospice back out here twice, because he was in pain that I couldn't resolve with the Morphine, or his breathing was worse. They're good to come, but it takes over an hour for them to make the drive. His heart is still strong, although the body is all but shut down.

I managed to get a little sleep last night, but mostly it's my arm keeping me awake. It's still very swollen above the elbow and painful all the way down to my finger tips. It's hard to say if I pulled a muscle, irritated a tendon, or if this is from the Parkinson's. Whatever it is, I'm not helping to change Daddy now. We have the nurses and aides coming, so Fred helps them do it. Daddy's bottom looks horrible now, but it's to be expected, since we have quit trying to turn him. He's just in too much pain when we have to, to put in a suppository for pain, or to change him. He's resting peacefully almost all the time, if we just leave him alone. So I've opted for bed sores, rather than upsetting him every 2 hours.

Frances is here today, so I've left her with Daddy, and I've moved up to the living room to try to get some sleep. Just thought I'd jot off how things are right now, before I try to get some rest.

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.

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!!!!

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.

A Clinical Trial of One??

In a real Clinical Trial, doctors use a very large number of people, usually, but not always, divided into two groups. One group gets the medicine being tested, and the other group gets fake medicine, called a placebo. At the end of the trial, if the people getting the real medicine have improved considerably more than the group getting the placebo, the medicine is assumed to be the cause of the improvement. That's a good thing!

They use such large numbers of people to conduct these trials, because there are always going to be unforeseen situations that influence the effectiveness of the medicine for some people. Maybe a few of the subjects have an undiagnosed disease that makes even the best of medicines not work. Or maybe some of them are under a lot of stress that ruins their results.

When you see a new medicine being talked about with glowing praise of its effectiveness, you have to be very cautious about getting all excited about it. I have seen reports like that where the trial only had 16 people in it. That only gives doctors a hint that a certain medicine might be helpful. It's just not enough people to tell you much.

That's the problem with trying to find the right medicine for me, or any other PWP. We are, in a very real sense, our own Clinical Trial. The last time I was on Requip, I was terribly bloated, with horrible stomach cramps and gas. So, the Neurologist took me off of it, and he put me on Zelepar. That medicine dissolved under the tongue, so it doesn't bother the digestive system. My stomach improved tremendously. The question is, was that because of the Zelepar, or was it because, that same week, my Gastroenterologist changed the prescriptions I was taking for my stomach? Also, my symptoms were not alleviated as well when I was on the Zelepar --- BUT I had strep throat most of the time I was trying it, without knowing I was that sick.

There's no way to be sure, is there, with more than one medicine being changed at the same time, and with me being sick, too? I talked with my Neurologist yesterday about this, and the fact that I had gone back to 1 Requip pill a day for several days, because I ran out of the Zelepar samples before my appointment. Even though I had been on the Requip for several days, my stomach was doing just fine.

So, Dr. S. has prescribed another month of Zelepar, to give it a fair trial at helping my PD symptoms. If I am still not getting as good a results with it as I was the Requip, I am to add the old dosage of 3 times a day of Requip to the Zelepar, which I take 2 times a day. I don't see Dr. S. for 6 more weeks, to try to give me a chance to tell what is going to work best for me.

Parkinson's Disease is different from many diseases, where there is some MRI or blood test that will tell the doctor what is helping, and what is not. With PD, it really is up to me. I have to be the judge for myself if the Neurologist has prescribed the right medicine and the right dosage. Then he bases my prescriptions on his vast experience with many other PWP he has treated.

But it still boils down to a Clinical Trial of one - ME!

Miralax Effectiveness Evaluation Week 1

Miralax is a white crystalline powder that is mixed with a liquid and taken each day, one or more times, depending on the doctor's directions. Its purpose is to soften the bowel movement. It is also supposed to improve the effectiveness of Zelnorm, a medicine which helps to improve the rhythmic muscle action of the digestive system. I had read that it was supposed to be tasteless, but I frankly found that a little hard to believe!

I have been on Zelnorm for some time now, but my Gastroenterologist just added the generic form of Miralax to my prescriptions Friday. I tried dissolving the crystals in water the first time, and, at least for me, I will agree that it is tasteless. It does give the water a slightly thick feel, and I could tell it was going to turn me off of drinking water - a purely mental aversion, but one I needed to heed, as water is extremely important! So, I tried it in apple juice, and that worked for me. Then I got the bright idea to just sprinkle it on my morning bran cereal, since it really does dissolve completely. With a little stirring, it disappeared completely, and I couldn't even tell it was there. So that's the way I took it yesterday and today.

I didn't see any results at all from using it until the third day, and even then it was of minimal help. So, today I went back to using the glycerin suppositories after breakfast, and the combination was very successful. (I had stopped using the suppositories Friday, not knowing how my system was going to react to the Miralax.) The bloating has definitely gone down, as my pants are looser. I'm still belching as soon as I put anything in my stomach - even water - but it isn't as bad as it was.

Today was the first day in a long time that I didn't end up with the hot pad on my tummy, trying to ease the pain, so I can see the beginning of some improvement!

I'm sure everyone's experience with the effectiveness of Miralax will be different, depending partly on why they need to use it. But I can say that someone with Parkinson's, with a long term constipation problem, should certainly give it a try, anyway. The generic version is not very expensive, it seems to be gentle on the system and suitable for long term use, and it seems to do what they say it will do - all while being as close to unnoticeable as a medicine you have to drink is likely to ever get.

You will find a large number of testimonials about people's experiences with Miralax at the AskthePatient.com site.

Same-o Same-o

I did go to church Sunday morning, which was a pleasantly normal thing to do, but my stomach acted up, as usual, so I really didn't get to enjoy the afternoon. I did get a good bit of rest, though, which I certainly needed, but I'm still not getting more than a few hours sleep at night. The Ambien just isn't working for me.

Today has been pretty much a repeat of many others, with the accompanying stomach bloating and cramps. I'm being just as careful as I can with what I eat, and I'm not having any bathroom problems, so I have to conclude that this is due to the Parkinson's itself. Just like my legs were moving so slowly before I was on medicine, evidently my digestive system muscles are also moving very slowly. The regular Parkinson's meds don't work on these involuntary muscles. That's what the Zelnorm is supposed to be helping, but I don't really think it is. And, thanks to how lousy I'm feeling, I'm losing a good bit of weight.

So it looks like I'll be moving my Gastroenterologist and Neurologist appointments up sooner, if possible, as I've had about as much of this stomach trouble as I want to put up with.

Another Day Goes By

Thank goodness the headache was gone yesterday. I can't say the same for the cramping tummy, though. I started out OK enough, but Daddy had a bathroom accident, and cleaning him up really unsettled my stomach. I managed pretty well while the cleaning was being done, holding my breath a time or two, but once everything should have been through with, then I started feeling nauseated. I spent the rest of the day with the hot pad on my stomach and abdomen, trying to ease the cramping.

I've checked my blood pressure, too, thinking that might have something to do with how bad I've been feeling. Sometimes it's been too high, like 144 over 80, but most of the time it's been just fine. I keep getting these fleeting feelings of lightheadedness or dizziness, which could just be due to tiredness, since the BP is usually OK.

At least I did accomplish something yesterday afternoon. DH wanted me to go to the house for a couple of hours, just to get away, but I really didn't feel good enough to want to move. So I told him to just pretend I wasn't here, and I'd rest where I was. So, while he took care of Daddy, I did the research and wrote the descriptions for 5 baby toys to put on eBay just as soon as I can get the photographs taken.

I'm looking forward to Francis coming this morning to give me some more time away from Daddy. That should help. If my tummy seems OK after breakfast, I'll go to church. If I'm still uncomfortable, I'll probably just stay home and rest. Whatever I do, being at home or at church and away from the care giving responsibility momentarily will do me good.

Hopefully, I'll feel good enough to get the photos of the toys done, so we'll have some items on auction this week. This should have been our busy time online, but under the circumstances, there was just no way to make that a priority. After all, it's only a hobby, but it's a hobby that gives me a lot of pleasure, and I need that release right now, too. So I have to balance my time and energy to keep myself as calm and relaxed as possible and still be helpful with Daddy. It's not fair to DH for him to end up doing everything, particularly since Daddy is such a pain to deal with most of the time.

If anybody's BP is high, it would be my DH's, who finds himself constantly stifling the urge to come back with an equally sharp remark, after Daddy has said something particularly insensitive or controlling. He's always been that way, although I know he loves me, and for the most part I can let it go in one ear and out the other. But DH is overprotective of me, and Daddy makes him mad now.

Is My Tummy Ever Going to Be Normal Again?

I started this blog to keep track of everything that was going on with what turned out to be a diagnosis of Peripheral Neuropathy and Parkinson's Disease. Once the PD diagnosis was made, the Neurologist seemed to basically ignore the PN diagnosis. Since I can't really tell that I'm not feeling things as well on my right side, that's OK with me, as long as I can walk normally. And I can say, that as long as I'm faithful to take my PD meds, I am walking normally enough to appear to be symptom free to the uneducated eye.

So, what's the problem? It has been, and continues to be, my digestive system. As I sit here writing this, my stomach feels like I have some kind of heavy weight in it, and there's the feeling of a lump all the way up to my throat. I've had good days, usually several in a row, but I've had more bad days than good since I started taking the PD meds. Since I do have good days, I keep trying to find a pattern, something I'm doing right, or wrong, that will give me some clues as to how to avoid this bloated uncomfortable feeling. But I can't find a pattern at all. It's very frustrating to go to the doctor, and they start asking all of their neat little questions, and you can't give them any neat little answers!

OK, I've whined long enough. This is turning into a major problem for me, as I'm losing weight rather rapidly, simply because I don't feel like eating. I have a Gastroenterologist appointment on the 20th, and hopefully by then I'll have something to tell him besides it feels like a weight and a lump!

One More Thing I Can't Eat Any More :(

I really like well made pork and beans, and we had some good ones for Thanksgiving. I wasn't able to enjoy them on Thanksgiving Day, because my stomach was really giving me a hard time, with lots of cramping and pain. But I've tried several times since, while eating the left-overs, to take just a small amount of the beans, after being careful to take a BEANO tablet first. It didn't do any good. Almost as soon as the beans hit my stomach, the cramping would start. Since I enjoy eating them so much, I've tried it again today, but the results were the same. So, that's one more thing I can't eat.

It wouldn't surprise you that I'm losing weight, would it? After all, most of the things I really enjoy eating are now off limits, not because somebody just told me to quit eating them (which would never work), but because they make me sick. That's a pretty good incentive to do without some of my all time favorites, like milkshakes and chocolate ... sigh. These were always my comfort foods, and now I can't eat them at all. Bummer.

Of course, I really do need to lose the weight, so I shouldn't be upset. But I really would love to have a thick chocolate shake about now. I can dream about one, anyway, right?

If we lived near Birmingham, I'd try some Soy chocolate ice cream, but we don't, so that's not an option. The next time we go to the doctor I'm definitely getting some, though. That's a promise to me!

Feeling Good Today, But Giving Up on Blogger for Now

I felt much better today, waking up without a headache, neckache, or sore shoulders. I even managed to get through the day with only a little bit of nausea. I was able to make a brisk walk up to Daddy's and back this morning, without getting too tired, and I've practiced the Tai Chi form once today, too.

I spent most of today trying to get this blog template to suit me, but I've decided that I'm going to give in and call it quits. I was hoping I could learn enough XHTML to be able to make the changes I wanted to make, but it's just taking too much of my time, what with Thanksgiving so close. Maybe I'll play with it some more later on, after the Holidays are over.

Blog Move Is Finished, More or Less

I've been a very busy lady, working to turn the plain black and white template into what looks as much like what I had before as I possibly can. There's bound to be something I've forgotten to do, but I'm sure I'll realize it sooner or later ;).

I've been sitting very still at the computer pretty much all day for the last few days, as that's the only way I can keep the nausea under control. I've had a bad headache, too, for the last few days. My neck and shoulder muscles have been so tight that I think that's where the headache is coming from. I'm thinking the Requip dose may not be quite strong enough, but my stomach is not handling the dose I'm on now as well as I'd hoped.

I've sent off a description of my situation and my meds to ASK THE DOCTOR - National Parkinson Foundation to see what that doctor thinks would be the best course of action.

So I seem to go from a few good days to weeks of feeling not so good. I don't know which doctor to call again, and that's why I've written to the Ask the Doctor site, hoping they could give me some guidance.

PS. I just checked the blog with IE, and I see that it only has one column! I played around with the column width just for a moment, with no change at all. So that chore will have to wait for another day. Just bear with me, folks.

Went to the Doctor's Yesterday, Keeping Fingers Crossed

I ended up calling both the Gastroenterologist and the Neurologist yesterday morning, as I really couldn't decide which one to call. Both answered my message in a timely manner. The Neurologist said to take Mylicom for the gas, but the Gastroenterologist wanted to see me that afternoon. I couldn't see my regular doctor, as he was out of town, but I was just glad to get the appointment.

Dr. M poked around on my stomach and abdomen and it was extremely painful. He asked a lot of questions, as you might expect, and, since I've been keeping a journal ever since I was diagnosed with Parkinson's, I was able to give him some pretty accurate answers as to onset, etc. He agreed that it is more than likely the Parkinson's meds that are causing the problem.

He gave me some samples of Zelnorm to try, plus a prescription if it seemed to be helping. He feels like that will help my digestive system work better and perhaps solve my problem. I surely hope so.