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!

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.

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.

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.

Been to the Physiatrist and I'm Still Very Busy

I saw the Physiatrist yesterday. He's the doctor who had to review my records before he would agree to even see me. As it turns out, oddly enough, he is the person who did my original EMG and Nerve Velocity Tests.

I was extremely pleased that he did a complete checkup, rather than just asking about my neck. He went through a complete neurological exam, but didn't venture much as to what he thought was wrong, other than to say Dr. Watts was the one who would be able to say what is going on. He did say he was sure I had some kind of Movement Disorder, but he didn't think it was Parkinson's, either.

He went over some options for the neck pain that has persisted since November. We agreed to try the least possible first, particularly since I will see Dr. Watts in less than three weeks. It's hard to imagine that something I've waited so long for is almost here! Anyway, the Physiatrist gave me a prescription for Lidoderm patches that I cut and apply to the trigger points of this pain. They are basically Novacaine that goes through the skin to the muscle. He felt like I would not have any stomach problems by doing it that way.

I put half on the top of my shoulder near the neck and the other half just below the shoulder blade, next to the spine. Those are the spots that really scream if I sit or stand unsupported for very long. Even the time to wash a full sink of dishes or eat a meal at the table is usually enough to set it off, and sitting on the church pews has been very uncomfortable.

I felt a little bit light headed soon after putting the patch on, but that could have been for any number of reasons, as I had not eaten breakfast yet. I am hurting now, but maybe not as bad as usual. Obviously, one day's use can't calm down this spasm, so I will just have to see how I do. The prescription is for 3 months worth, and thank goodness I have Medicare and good insurance, as it was listed at over $500!

I've been going around in circles lately trying to get a whole lot of things accomplished all at once, and not getting much finished at all. We have started on our taxes, but there are some parts that I must work on before the exact number can go in the form. I've been doing them with software for years, but this time my hubby sat down next to me and we went over each part together. That helped me stay calm, plus he needs to know how it's done.

I'm also trying really hard to get as many of our toys in our online catalog as I possibly can, and I have run into several road blocks I had not anticipated. I had to learn how to use a Shopping Cart program, upload and download files to Google and our ISP to make a searchable data base, and I have been driven half crazy trying to get the catalog to show up properly in Google Base. OK, I know if you are not using the programs yourself that was just a bunch of gobbledygook - but they were very confusing to me, too, and I am definitely not learning new things as quickly as I once did.

I've had printer problems and had to buy a new one yesterday, so I couldn't mail out some orders today, because I hadn't figured out how to set up the network part of it. That actually worked pretty well, once I did understand the directions, and it even has an answering machine and fax included in it! I feel like I have my own home office now.

Our Search Service is keeping me extremely busy, too, and we have made a few sales from it, as well as helping several very happy parents find the lovie they needed, whether we made the sale or someone else did. I am pretty much caught up with answering the initial request, but I am miserably behind at getting the ones I could not find turned into blog posts.

I feel bad about that, as some of these parents sound so desperate, but hubby is still computer phobic, and that leaves this part of the business entirely up to me. He's great at scouring the yard sales and thrift stores several times a week when he goes out on his own, and we thoroughly enjoy our Friday Date Day, and he helps a lot with the packing. He takes everything to the Post Office, too, and he has a lot of input about how to do the business side of selling. He just doesn't want anything to do with the computer part.

Well, enough about all that. It just goes to show that I am staying busy with lots of different parts of my life - and our messy house proves it. Something had to give - so.....


Hopefully it won't be so long before I post again.

Tests Are Over for Now, Thank Goodness!

I'm glad to have those tests behind me, as they are anything but comfortable! I had forgotten that the Velocity Test hurt when the electric current went through the sticky pads, but it does. I was right, though, that the discomfort from both tests is basically gone as soon as the test is over. I had some residual crampy feeling, not really pain, in my back, but it's OK now. Since I have back problems anyway, that probably wouldn't happen to most people.

I would like to have had a video of the testing session, so I could show it to the MDS specialist I will be seeing in April. Talk about shaking and jerking, plus a face full of tics and twisted expressions! Between the pain, and the stress, it's no wonder I put on quite a show.

They will add the results to the information they will send to Dr. Watts. I will call his office tomorrow to take care of the change to Medicare as my primary insurance, and I thought I'd talk to his nurse, PA, or assistant - whoever - and see if there are any other tests he would want done in advance of my appointment.

I'm glad to have it over with, looking forward to finding out what it means, and waiting as patiently as I can for the appointment.

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.

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.

Odd Physical Therapy Today

I went to PT this morning, and they did start me on some exercises, all for my arms. The first few were fairly easy, but then she had me pushing down with what seemed like more resistance than the others were set for. I stopped at the first set of ten on that one, instead of doing two sets of ten the way I had done all the others.

Then I moved to the pulley rope, which I've done before with other therapy, and it's always fairly easy, unless you just can't raise your arms. I had no trouble with that at all. Problems came when I stood up from that one, though.

I woke up this morning trembling more than usual, and getting into the cold car this morning just made it worse. And then I did all this new exercising on top of that. I guess everything just worked together to bring major big time tremors in my legs and arms, all at the same time. I was frozen in place, unable to move, because I was just not in control at the moment. The Aide immediately pulled a chair over for me, and I didn't do any more exercises. They hovered over me for awhile, with me assuring them that I was OK, that it would ease off on its own, that there wasn't anything they could do, and I really was OK.

After I convinced them that I was not going to fall, they moved me to the room where they do the ultrasound and heat therapy with the TENS machine, and everything went as usual. About half way through all that, the tremors settled down to just the usual quiver in my right arm and leg.

The only thing I can think of is that using the machine that was apparently set with too much resistance for me to handle just used up the dopamine I had available for a little while. It will be interesting to see if I can find anything to agree or disagree with my hypothesis.

It's been a shaky afternoon, and I just gave in to my chocolate craving - that's my way to deal with stress, as any chocoholic will tell you. And my neck is sore, but not painful, from the exercise. But at least I'm walking around about like usual - maybe a little shakier, but not much.

She told me I have 3 more visits before I have to see the Orthopedist again, so I need to make that appointment. I should have done it today, but I'm in one of those procrastinating moods today, and I just didn't feel like doing it. These moods don't make any sense, but I get into them every once in awhile. Things that happen like this morning seem to bring this apathy on, like everything is just too much trouble. It's stupid, I know, but it's just the way I get at times. I'll snap out of it, just as the shakes finally stopped. Just takes a little time.

Tomorrow is Date Day, and it will be a better day. I'm sure of it!

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.

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.

This is a Hard Post to Write

I saw my Neurologist yesterday, and it turns out I did have good reason to be apprehensive about the appointment.

First of all, he agreed that I did not have any business having the epidurals on my cervical vertebrae. So, I called my Orthopedist to let them know that they could schedule the Physical Therapy, but not the epidurals. They called back later, and have already faxed the prescription to the PT I used last time, which is close to home. So, hopefully, I will be getting some relief from the neck pain and stiffness soon. Holidays, of course, will be in the way of a regular schedule, so who knows when I will actually start the sessions. It could easily be the beginning of next year.

He also took me off of the Levadopa/Carbidopa plus Lodosyn meds that the ER doc had added to my treatment, since it didn't seem to be helping much at all. Taking too much of these meds can cause dyskinesia, which is involuntary movements. That may be why I had such an odd tremor develop of late, plus all the facial and tongue tics I have been experiencing.

But the news from the exam that has me so upset right now is that he is no longer sure I have Parkinson's. He watched me walk, and I was so nervous by then that he got to see me at my worst. Both legs bobbing up and down like I was trying to walk across the floor of one of those carnival blow up bounce machines, and having to hold out my arms to the sides to keep my balance. Turning around and coming back towards him was just as bad. He had me take off my socks and shoes, and he did all the usual hitting with the hammer. He scraped the bottom of each foot, and also suddenly pushed both feet straight up several times, in a slapping kind of motion.

I have had the foot scrape thing done many times before, and I know what that was testing me for - the Babinski effect. That's a test I failed some years ago when I was seeing a different Neurologist for migraine headaches. As far as I know I have not failed it since then. It has to do with the way your toes curl or straighten out when a hard object is scraped from the heel towards the toes. The normal reflex is to curl the toes inward. If the toes spread out, with the big toe stretching upward, it's a sign of a lower extremity nerve problem. I don't know if I passed it this time or not. He didn't say, and I was too upset to ask. I have tried to look up what the sudden slapping of my feet upward meant, as I have never had that done to me before, but I haven't been able to come up with the right search terms yet to find out what that was all about. He did move my arms around, while I kept them relaxed, and said he did not feel any cog wheeling. That's something he would expect to find if I had Parkinson's, and he has said in the past that he did feel it. It has something to do with the tremors, but that's about all I know about cog wheeling.

They have made an appointment for me with the Chair of the Neurology Department at the University of Alabama in Birmingham. He is the Movement Disorder Specialist in this area, and is supposed to be my best chance of finding out what is wrong with me. Parkinson's effects people in so many different ways, it may yet turn out to be the PD that my Neuro had initially diagnosed.

But for now, he has listed my diagnosis as the Peripheral Neuropathy plus Gait Debility. I'm back to that "not knowing" stage, and it is extremely upsetting for me, and for my dear sweet hubby. Of course, as you might expect with the chair of the department, I can't get an appointment until the end of April. That's going to be a long, long wait that is not going to be easy.

I felt such relief when my Neuro put a name to what was happening to me - even if it was that I had Parkinson's. Now I am in limbo again, and I hate it.

Hubby has asked that I stop reading and researching about Parkinson's for awhile, just to be sure that I have not been subconsciously absorbing the symptoms that I was reading about. That's a fair request, so I have said a temporary goodbye to my Parkie friends on PatientsLikeMe, and will not be doing any PD research for awhile. I am going to continue to try to find out more about Peripheral Neuropathy, though, because there is no doubt that I have that. Unlike Parkinson's, there are definitive tests for PN, which I most definitely have.

I don't know how to adequately explain how I am feeling about all this right now. It's almost as if I found out I was adopted, or something like that. It's like my identity has been ripped to shreds, if that makes sense. I have developed some really close friendships with some wonderful PWP over the last year. Now, with one sentence, my Neuro has put the nature of that relationship in limbo.

This NOT KNOWING stage I am in again is very hard to deal with. I am vacillating between being scared of something worse than Parkinson's, and being relieved that it could be something less progressive in nature than PD.

God is forever trying to teach me patience, and reliance on Him, rather than my own abilities. Looks like He is working on that big time right now. We haven't actually said anything out loud, but I think hubby and I are going to keep this turn of events to ourselves for now. I can't see any good reason to add this uncertainty to our children's lives. They have enough to worry about on their own. So, I will pour out my feelings here on my blog, since no one who knows me personally ever reads it.

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 w