Went Off PD Meds Temporarily

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

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

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

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

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

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

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.

Tummy in Rebellion

Warning: This post is not for the weak stomached!

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

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

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

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

Day One with Sinemet

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

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

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

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

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

Insomnia Is on the Prowl AGAIN

Looks like the Requip has my bout with insomnia going full force again. I didn't get to sleep until after 11 last night, but I've been wide awake since 2:30 this morning. It's been pretty much like this now ever since I started back on this particular medicine. I do have some sleeping pills, but I've resisted taking them, hoping my system would adjust. But tonight, I will definitely be taking one.

I do get a lot done when I'm in one of these moods, though! ROTFL I'm just about ready to change the listings on all our current eBay items to reflect all the changes the Post Office is making in Rate Classifications and prices. Just a word of warning to all of you .... don't be surprised if it costs considerably more to get something mailed to you from now on. The PO has really raised their prices tremendously, for some package situations as much as 700%!!!!

We bought a pedometer for me the other day, but I'm not convinced that it is counting every step I take. If it is, I'm not moving nearly enough in a day. DH isn't having any trouble at all going over 10,000 steps a day, and I barely went over 1,000!

My exercise program is coming along nicely, though, and my legs continue to gain in strength. I've been trying to understand exactly how to improve my posture and gait, based on the Chi Walking book I mentioned several posts ago. I wish I had someone who could just show me how, instead of trying to figure it out from pictures and words. I really don't have a very good kinesthetic sense .. in other words, it's hard for me to really tell where my body is. But that's nothing new .... I've always been that way, even as a child. I remember struggling to try to learn how to do a summersalt, and giving up finally. The Tai Chi routine does help me to be aware of where my body position is, and I've started doing that when we go to the track. DH walks 2+ miles in the time it takes me to do all my exercises, walk a quarter mile, and do my Tai Chi, with maybe a little time left over to clean out the car of all the junk it seems to accumulate so quickly, or to read a little. It's a great way to start the day off, with a feeling of accomplishment right off the bat.

So far, the only obsessive behavior I've noticed is that my craving for chocolate has gotten out of hand again. I did without any for such a long time, but when Daddy died I went back to eating it every day. I'm not supposed to eat it at all, because of the GERD I have. I'm really very good about avoiding everything else the Gastroenterologist has put on my banned list, but when I'm stressed for depressed, I have to have my chocolate. Nothing else will satisfy that craving. And I've always been that way. I can remember getting into trouble as a child on more than one occasion, because Mama would go to bake a cake, and I had eaten the bitter dark chocolate in the refrigerator. So when I read things about how chocolate contains chemicals that relieve stress, I believe it!

Parkinson's Patch Approved in USA

Neupro, a dopamine agonist delivered in patch form, has been available in Canada and Europe for some time, but now it has been approved in the USA. The Requip I am on is a dopamine agonist, so I should be a good candidate for the patch.

I was disappointed on doing some research to find that nausea is still one of the more common side effects. I was hoping that my tummy would not be involved, since it's not a medicine that is swallowed. There's also a fairly high incidence of irritation at the patch site, and users are not supposed to put the patch in the same place more often than 14 days apart. Most of the other side effects are true of just about all the Parkinson's medicines, from dizziness to low blood pressure on standing. As a dopamine agonist, there is a certain level of risk of obsessive behavior and also of suddenly falling asleep. Driving can be risky. Thank goodness we're both retired, because my not driving has really not been a real problem for us.

So, although I had planned on bugging the Neurologist to change me to the patch as soon as it was approved, now that I know a little more about it, I probably won't be in such a hurry to push for it.

If anyone reads this who has been on Neupro, or is now on it, please leave a comment about your results and/or side effects.

Standing MRI & A New Friend

I had the standing MRI yesterday, and that was quite a bit different from the lying down kind. First of all, it would be much better for anyone who is claustrophobic, as I was not closed in, and they actually had a big screen TV set up so I could watch it.

As far as my procedure was concerned, it was not very comfortable. The whole point was to take the MRI while I was putting weight on the knee, so I had to stand at about a 60 or 70 degree angle, I would guess, and be very still for about 30 minutes. By the time it was over my knee was really complaining, but it was worth every moment of it, if it gets them a better idea of what's going on in there. I still don't expect it to be torn cartilage, but soon I will know. Their brochure showed pictures of regular MRI views vs their stand up kind, with obvious disk problems that didn't show up when the patient was lying down. I may ask for that kind the next time I have to have one on my neck or back, for just that reason. I'll see the Orthopedist next week to get the report on it.

I've added the beginnings of a section on Radial Neuropathy to my side bar, not because I have that, but because I've recently started emailing back and forth to a new friend who has it. She and I live in the same small town, I taught her husband, know her MIL, and we're even members of the same church. And neither one of us knew each other LOL!! It was the Physical Therapist we've been going to, who gave her my blog URL, that got us together. She promises that she'll be posting here, so hopefully she can make contact with others who have problems more similar to hers. My Neuropathy is most noticeable in my legs, although my hands and arms are involved, too. Hers is severe, but I'll leave it to her to explain it.

I noticed the nausea from the Requip about 11:00AM again yesterday, but a few crackers stopped it. I'm still getting sleepy at the wrong time, as I nodded off early last night watching TV, and I've been up since 4:00AM. Actually, I woke up a little after 3:00, but I made myself stay put, thinking I would go back to sleep. No such luck.

I can't tell any difference in my gait yet, but it may take a week or so before I would notice anything, anyway. I don't remember reading anything about how long it takes Requip to take effect, so I'll have to try to do some research on that.

Oh, remember when I was having so much trouble typing? That has definitely improved. It must have been the stress of dealing with Daddy that was making that worse. Parkinson's folks don't handle stress as well as others do. I still make more mistakes than I'd like, but nothing like it was for awhile there.

I've done my morning exercises, but we're still not walking at the track. Hubby's poison ivy is getting worse, not better, and he's so stubborn I can't get him to go to the doctor about it. So he's just slathering on the anti-itch medicines I already had in the house, and he's trying to stay cool.

Speaking of cool, my temperature regulator is all off whack. I'll have hot flashes one minute and be freezing the next. I'm putting my jacket on and pulling it off constantly!! This is a Parkies thing, too, so there's not much else I can do about it.

I'll spend the day today writing descriptions and finishing the pictures I took this morning, so I can put some new items on eBay tonight. DH has gone grocery shopping, a regular Wednesday morning routine of his, and a chance for him to stop and chat with his buddies. I guess that pretty well catches me up for the day. I hope you are having a good day, too.

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.

Lots to Do Settling Daddy's Estate

This is the second time I've been the executor of an estate, but Daddy's is much more involved than Pop's was. Luckily, we have a niece who is a lawyer, so I'll have some help when I'm ready. I've tried researching what I need to do on the Internet, and I've been surprised at how little help I could find. Everything seems to be geared toward Estate Planning, rather than settling an estate.

April 15th is getting closer, too, and I've just not been up to dealing with important numbers. I did get a good start today, though. Starting is half the battle for me, as I find I've become quite the procrastinator in the last few years. I don't know if that's a sign of old age LOL, stress, or Parkinson's!

We walked again this morning, but I was slow as mud. I made it around for a half mile, using the walker. I've been using the walker all this week, but I depended on it more today, as I could feel the tightness in my shoulders when I stopped. That slow as mud feeling is the first Parkinson's symptom I had, so it's looking less and less like I'll be able to continue on just the Zelepar. The Neurologist told me I could go back on the Requip as well, if I felt like I had to. I've resisted, because the Requip gave me stomach troubles last time. Well, I had stomach trouble when I was on the Requip - that doesn't automatically mean the Requip was causing it. It's that uncertainty that has kept me trying to do without it. I'm just not ready to cope with stomach side effects yet. Maybe next week.

I taught 4th and 5th graders for 25 years, but I've seen the "Smarter than a Fifth Grader" TV show a couple of times since I've been back home. It's scary how much my mind goes blank on stuff I know I should know. I hope it's just remnants of caregiver burnout, and not the PD effecting my mental abilities. Stress can really do a number on such tasks, so I'm trying really hard to relax as much as I can. But getting things accomplished is part of what's needed to lower my stress level, too, so it's a matter of finding a balance, I guess.

I continue to be uplifted by all the loving comments. You all really are helping. Just a thought for you, if you need to send a sympathy card to someone. One of our friends included a neatly cut out copy of Daddy's Obituary notice in their card. It was very much appreciated.

Tremors Galore!!

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

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

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

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

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

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

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

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

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

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

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

Strange Things Are Hapnin'

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

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

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

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

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

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

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

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!

Tummy Improvement OR Walking Faster?

I've been on the new Zelepar medicine for several days now, and my digestive system is behaving just fine. I don't seem to be getting quite as much help with my gait as I did with the Requip or Sinemet, however, but I'm still on the samples. When I go back to the Neurologist next Friday, it may be that he will order a prescription for a higher dose or more doses, which might make the difference. Anyway, even if the dose stays where it is now, it seems like a reasonable trade off between stomach problems and balance and walking problems. I'd love to walk better, but I can live with it the way it is now, if I have to. It's nice not to spend part of every day miserable, with a hot pad on my tummy!

I said at first the Zelepar didn't taste bitter, however, I'd better amend that evaluation. Yes, it is bitter, but not enough to bother me, anyway. (The trick is to be sure you place it under, not on, the tongue.) It dissolves under my tongue so quickly that it's just a few seconds, and I can swallow it. You're not allowed to drink or eat anything for at least 5 minutes before or after taking it, but my saliva quickly washes the taste away.

We're still staying with my Daddy, which means I spend most of my days and every night in a hot house. We tried to find a compromise temperature for the thermostat, but at 101, he gets too cold, while we're still sweltering. I have noticed that I'm having more trouble with the heat this week, since I've been on the Zelepar, than I was before I started taking it. I'm getting what feels exactly like hot flashes several times a day, and I've been past that stage for some time now. I have read that Parkinson's can mess with the body's regulation of internal temperature, so I guess that's what's happening to me right now. Or is it because of the Zelepar? I really don't know.

I was on Requip before starting the Zelepar. Requip is a dopamine agonist, but Zelepar is an MAO-inhibitor, so they don't attack the PD symptoms the same way. There's big news in the Birmingham News today that a doctor at UAB is close to getting FDA approval for a patch version of a dopamine agonist. That will be good news for me, as the Requip did a better job of improving my balance and walking than it looks like the MAO-inhibitors are going to. I'm all for any PD med that I don't have to swallow!! So this is something else for me to be hopeful about.

It's great to see that there is good news on the horizon for the large number of people who really suffer with this disease. My own symptoms and discomfort level are so mild compared to people who have had Parkinson's for years. I pray that all this new research may bring them relief in the near future, instead of years from now.

First Dose of Zelepar, My New Parkinson's Medicine!

This is the day I have been waiting for for about two weeks now. I spent that time tapering off of the Requip I had been on, went without any PD medicine yesterday, and this morning I took the first dose of Zelepar.

Zelepar is a quick dissolving tablet form of Selegiline, which dissolves under the tongue. It tasted a little like an orange mint might to me, but it does dissolve extremely fast. There was also a little tingle on the tongue, but nothing uncomfortable. I had read somewhere on the Internet that it tasted bitter, but, for me at least, that was not so. The directions emphasized not to drink any liquids or eat anything at least 5 minutes before or after taking it. I'll be taking it twice a day while I'm on the samples, but I'm to go back to the Neurologist at the end of this two week trial.

I felt my walking begin to smooth out within about 30 minutes. It may be my imagination, but I think it's made me a little hyper, too. (Of course, I've been so slow the last two weeks it may be I'm just normal now.) I'll have to be careful when I take the evening dose, if that's so, or I won't get any sleep tonight. LOL

I've been reading the explanations of what a MAO-inhibitor is, which is the class of drugs that Selegiline falls in, and I think I've got it figured out. Basically, it's some kind of high powered targeted anti-oxidant, that keeps the smaller amount of dopamine that my brain is making from being broken down prematurely. So I'm getting the full benefit of what my brain is naturally producing.

There is also some research that suggests that Selegiline may actually protect the part of the brain that makes dopamine, and possibly slow down the progression of this disease! If you're not really familiar with Parkinson's Disease, that may not sound so significant, but it would be quite a break through. All the other meds treat symptoms only. There is a possibility that Selegiline may effect the cause of Parkinson's!! I'll not go so far as to get my hopes up for that, but you bet I'll be watching to see if that turns out to be true.

Tapering Off Requip

When I went to my Neurologist last Tuesday, we decided I would stop taking the Requip, since it was probably the cause of all my stomach problems, other than the PD itself. Also, it was the likely culprit for my hair loss. So, Dr. S. told me to taper off the Requip before I changed over to the samples of Zelepar he gave me. That meant last week I only had two pills a day, instead of the usual three. Starting Tuesday of this week, I've only been taking one a day.

Dopamine is the brain chemical that controls muscle movement, and that's the one that people with Parkinson's no longer make enough of. Requip tricks the brain into accepting the chemical in it as a substitute for the dopamine, so it's called a dopamine agonist. Now that I'm down to one pill a day, I can really tell it! My balance is terrible, and my walking is stilted and jerky.

As long as DH can take over the care giving tasks I'm not up to, I'll continue to do as much as I can to help Daddy. We've only got to make it until next Wednesday, and then I can start taking the new medicine. Zelepar, a special form of the medicine called Selegiline, is a different type of Parkinson's medicine entirely. It is an MAO-inhibitor. I've read what that means a dozen times now, but I still don't understand it well enough to put it in my own words LOL.

The reason Dr. S. is trying this particular prescription is that it dissolves on the tongue and does not go through my digestive system. It goes straight into the blood stream. With the improvement in stomach comfort that I'm seeing from the Miralax and glycerin suppository combination, I'm hoping this new medicine will be the perfect one for me for the time being.

I do know that at some point I will have to go back to taking Sinemet, which was the first medicine I took. It nauseated me, too, but I'll cross that bridge when I get to it, because there is a patch form of it in drug trials now.

So for the next few days I'll be weaving and lurching around here like I'm drunk, but I can put up with it, knowing there's something new to try just days away. I am ever thankful to God that there are so many researchers working to find new ways of fighting the symptoms of this disease, working on ways to slow its progress down, and ultimately to cure it.

So I'm Stopping the Requip

I went to my Neurologist today, and we discussed my digestive problems, hair loss LOL, and insomnia. His solution was to taper off the Requip until I have quit taking it completely and see what happens to my stomach problems. He also gave me a prescription for a time release version of Ambien. And, of course, if it was the Requip that was causing the hair loss, stopping the Requip will take care of that situation.

I told him about writing to the National Parkinson's Foundation "Ask the Doctor" site, and what that doctor suggested. So he's given me some samples of the medicine the NPF doctor suggested I try. I'm not supposed to use it until I've completely stopped the Requip, if I can possibly stand it. But I explained we were taking care of my Daddy, and I might not be able to put up with my impaired walking that long. He wants me to try, so he can get a fair assessment of how the new medicine works, but he does understand our situation.

He gave me samples of Zelepar, one of the brand names of Selegiline. It dissolves on the tongue, so it does not go through the digestive system at all, but straight into the blood stream. I have high hopes for this medicine. It is also a different type of medicine than I have had before. This one is an MAO inhibitor. I'll have to do some research to fully understand what that means.

I am very thankful that all the research over the last few years means there are a lot more different types of medicines for him to try on me than there used to be for Parkinson's. None of them slow down the disease, or do anything at all to cure it, but they do help with the symptoms. For now, that is a blessing. Hopefully, in my lifetime, they will find ways of at least slowing the disease down. And who knows, maybe they'll even find a cure.

Doctor Recognized My Symptoms

I went to my Gastroenterologist today, and I went into some detail about the stomach and general digestive problems I've been having for some time now. He recognized what I was describing, and even had a worksheet of instructions already printed up with how to deal with my set of symptoms. He definitely said this problem was caused by my Parkinson's medicine, Requip, and not by the Parkinson's Disease, itself.

I was correct in my guess that my digestive system had basically quit moving things along, but apparently wrong as to the reason, as I thought it was the PD causing it.

Anyway, he assures me I will be feeling much better in a few days, and I'm to call his nurse Monday with my progress report. Hopefully, I will have a good report for her.

Daddy woke up this morning barely able to balance well enough to sit on the side of the bed without falling back over. It was much harder than usual to get him dressed, and I was glad when DH got there, so he could help me walk him to the kitchen for breakfast. By then, Frances had gotten there, and we cautioned her that he was very unsteady. When we got back this evening, she said whatever was going on earlier had passed by mid morning, and the rest of the day was normal. I don't know if he had another little stroke in the night or not, but he sure was different for awhile this morning.

I'm very thankful I have someone I can leave Daddy with that I have confidence in. Otherwise, I probably would have postponed my own appointment today, and that would not have done either one of us much good.

Requip and OCD - a Serious Side Effect

One of the side effects of dopamine agonists, the kind of Parkinson's medicine I'm on (Requip), is that they cause excessive gambling. Some people have lost their whole nest eggs before their families realized what was happening.

Well, I don't gamble, as a matter of religious beliefs, so I don't have to worry about that particular problem, but the underlying symptom is something I'm beginning to show signs of. Gambling in and of itself is not the real issue, but compulsive behavior, or OCD. It shows up in some Requip users as compulsive shopping, instead of gambling.

With me, I'm having a harder and harder time pulling myself away from the computer. Those of you who have come to know me online know just how much time I spend here, and would probably agree it's too much, and you don't know the half of it.

Now that I've admitted it out loud, so to speak, I'm going to have to discipline myself and put some limits on my computer time. I'm not sure exactly how to do that yet and still take care of our online business, my blogs, and the BLOG VILLAGE TopList, plus keep up with a few key sites I'm involved in, but I'm going to have to try. I know I check my email way too often, and check the forums too frequently, so that's some place to start.

Have any of you dealt with OCD? Is this something I can do on my own, or do I need to let my doctor know I'm showing compulsive behaviour? I'd be interested in hearing what you have to say about this.

Another Great Day!

We had a wonderful Date Day yesterday, with beautiful Fall weather, and some really nice finds at a handful of garage/moving and Estate sales. Because of the direction we headed, DH didn't have to deal with horrible Friday afternoon traffic when it was time to head home, like he usually does, so that made it even better.

We ate out at a buffet, so I was able to find plenty that I could eat, while he could get what he wanted. I've gotten in the habit of taking a couple of Beano caplets before I eat, anytime I even suspect that I'm going to eat something that might produce gas, and that seems to be helping, too. All and all, I seem to be settling into a pretty good idea of how to eat in such a way as to protect my stomach, as things have been pretty calm for several days now.

I wrote to the Ask the Doctor mailing list on the National Parkinson's Foundation site last week, and my post showed up in the email today. It takes about a week between sending in a question and getting an answer, as these are practicing physicians, who take the time to answer the questions. I had asked the mailing list doctor if he could suggest any meds that I could take in patch form, to bypass my stomach.

The doctor suggested I try the form of Selegiline, called Zelepar, that dissolves under the tongue and bypasses the stomach, and also go back to Sinemet, with a larger dose of Lodocyn. According to him, Requip causes more nausea than Sinemet does. My Dr. S. had said he couldn't promise that the Requip wouldn't make me more nauseated, but that he wanted to give it a try.

So, for now, at least, I'll stick to the Requip, but if the nausea and bloating start up again, I think I'll make an appointment with the Neurologist for as soon as possible, and see what he says about the Parkinsons's Foundation Doctor's suggestion.

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.

All's Well with My World!! Glory to God!!

I went to the Neurologist Thursday morning, and reported to him about the Endoscopy and Monday's visit to the Gastroenterologist. I told him about the Zelnorm, and how it is definitely helping. I also told him about the hair loss, and he said if it continues he'll try to help with it on my next visit. He agreed that it was time to take me off the Sinemet YAY!, and go on just the Requip, which is what I was hoping he would do. So I don't see him again for three whole months! I feel like a free woman!!! Requip is taken with meals, so no more of this hour ahead stuff, and it doesn't have any dietary restrictions, either, so I can eat what I want with it. My gastro doctor has put enough restrictions on my diet as it is, so I'm glad to not have more added to those from the PD meds.

Thursday was my DH's birthday, but I couldn't get him to spend any money on himself at all. I was hoping there would be a movie he wanted to see, but no such luck. Then I tried to get him to buy a book or a CD, but he wouldn't do that, either. So.... I needed to get a pair of walking shoes, fitted by a knowledgeable salesperson, something I had researched on the Internet as being good for Parkinson's patients, so we ended up spending money on ME LOL. He did let me take him out for a nice lunch, though.

I found out in my research that walking shoes don't break on the sole in the same place that running shoes do. Since PD folks have problems picking up the foot and putting it down properly, with the roll that everyone else takes for granted, this is important. I was used to wearing running shoes, and I could tell the difference immediately. It really felt odd, and will take some getting used to. It changed my whole sense of balance at first, I was so used to the old shoes.

So this is a post I've been looking forward to making. I'm feeling good about my medicines, my stomach is improving, and I'm at a point where I feel like I have a handle on the Parkinson's for now. Now I just want to proceed with life as normally as possible for as long as possible, enjoying every minute of it, knowing that the time will come when things will change. I feel so fortunate that this disease is progressing slowly for me. This warning time gives me the opportunity to glory in just being alive, and I thank God for every minute of it.

Feeling Better and Optimistic

The Zelnorm seems to be helping, plus I've made a few minor changes in the way I take some of my other medicines. I'm taking my first Protonix when I first wake up, and then I'm not drinking any water after that for a half hour. I can usually drink at least 8 oz of water, sometimes more, before it's time for my PD medicines, an hour before breakfast. Then, a half an hour before I eat, I take the Zelnorm.

I spread it out again in the evening, taking the other Zelnorm a half hour before a very light supper. The other Protonix is about 8:00 PM, and that's the last water I get for the day. I make every effort to get at least six 8 oz servings of water every day.

The Gastroenterologist doctors have taken me off of all milk products, sodas, chocolate, and gum, plus I can't drink out of a straw or drink anything with my meals. I've finally adjusted to not drinking anything with my meals. I had already stopped the rest on my own back in September, when the GERD acted up, except for cottage cheese. Now I can't have that, either.

The belching is still there, but the yucky feeling is gone, and so are the cramps and bloating. I'm eating cautiously, but much more normally and better quality, too, so my strength is returning.

Tomorrow I see the Neurologist to get the prescription for whatever dose of Requip he thinks will be appropriate for me. And it's also my last day to take the Sinemet, I hope! So it's a day to look forward to!!

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.

Still Puny Today

I wasn't as sick today as I was yesterday evening, I don't think, but I still felt pretty rotten today. I really didn't feel like trying to go to church this morning, and we didn't have the service at our church this evening, because it was the Fifth Sunday Singing. That rotates around among the churches in the area, and I wouldn't have gone to that, anyway.

I've tried to do the research on the Internet today, to decide if it's the Sinemet or the Requip doing it, since I got sick Saturday, after I had upped the dose of Requip on Friday. The dose is pretty good sized now, so it may be the Requip. That makes me think I need to call the Neurologist, rather than the Gastroenterologist, in the morning. I don't think I can wait until my Thursday appointment. I'm losing weight awfully fast, because I'm really eating very little. I just don't feel like putting anything in my stomach right now. It's much too uncomfortable. And I'm getting weak again, too.

I'll be glad when this whole medicine regimen is worked out, and my digestive system settles down!!

Oh, another side effect is definitely showing up. I've suspected it for some time, but now I've let enough time go by to be sure -- I'm beginning to lose my hair. I wear it really short anyway, so it's not going to be long before it's noticeable on top. But this is a vanity issue, and doesn't effect my ability to eat or move or anything important, so I can live with it, even though it would have been nice if this particular side effect had passed me by.

Still Increasing Requip Doses

I'm still increasing the dose size of the Requip very gradually, and this week I'm only taking the half Sinemet and Lodocyn twice a day. I'm not up to a full Requip dose yet, because my walking is not up to normal yet. I can still feel the trembling, particularly on my right side. I can't balance on my right foot, either, and it's still difficult to go down steps without holding on and being very careful. But it's getting there. I see the Neurologist again the first week in November, so he should be able to tell by then just how much more Requip I need. Hopefully, when I get off the Sinemet, my tummy will settle down completely. I sure hope so.

I'm continuing to try to get just as much exercise as I can, and we're eating as healthy as we possibly can, too. I've even started back to putting items on eBay. That's something I just about had quit doing, while I was so sick with the colitis, and when I was having so much trouble walking. I need to get back to a regular routine, though. We can't keep going to the estate sales if I don't start selling some of our purchases, right?

Tai Chi Form Was Good Today - Tummy Wasn't

I've increased the dosage of the Requip, but I haven't yet cut the amount of Sinemet, other than going to the half tablets four times a day. It really showed today when I went for my second Tai Chi lesson. I could tell the difference immediately, as I walked around the mat to warm up. Just walking was much easier. Doing the form was much easier, too, and I only had to stop once for a walking break. I was very pleased with my progress.

I've not been pleased with my stomach, though. Just drinking some water after we left the gym set my abdomen to cramping. After lunch, which was a particularly bland one, the gas got so bad that I had to take some Gas-X. I was really in a lot of pain way up in my chest. After I took my 4:30 meds, my stomach was very tender.

I'll be cutting the Sinemet down to just twice a day on Friday, so hopefully my tummy will begin to get better then. If it doesn't, I'll have to call the Gastroenterologist again.

Results of Endoscopy and Ultrasound

Yesterday I had the Endoscopy and Ultrasound to try to determine why I'm having such a terrible time with the acid reflux. I've been diagnosed with GERD now for several years, so I generally know what I can and cannot eat. I really thought it was the Sinemet that set off the reflux, but my Gastroenterologist wanted to be sure it wasn't a lingering infection from the severe colitis I had been plagued with for so long.

Anyway, the tests showed nothing but irritation, not infection, and no sign of gall stones or anything like that, so it was the medicine after all. My own doctor had been called away, and one of his associates, who is not familiar with my case, did the endoscopy. His orders were to take the Parkinson's meds with meals, which, of course, I'm not supposed to do. He also prescribed Carafate and a week's worth of probiotics, and to continue the twice a day on Protonix. All this is designed to settle down my tummy and soothe my esophagus.

As for taking the PD meds with meals, I'm not going to do that, but I do eat crackers with them each time, to try to protect my stomach. Hopefully, by the time I'm weaned off the Sinemet and fully titrated onto the Requip, I won't have the conflict with the meds, anyway.

If I still have problems then, I'll have to try to get the Neurologist and the Gastroenterologist to talk to each other and decide what's best for me. I don't like being the go-between for doctors. They need to discuss this with each other!

I had read that Parkinson's meds and Parkinson's itself could cause a person to react differently to anesthesia. Well, there may be some truth to that. I slept until 6:30 PM yesterday evening after we got home from the endoscopy, and then I went back to sleep about 10:00 and slept all night until around 6:30 this morning!! I just about lost yesterday!! I'm fine today, with no ill effects at all.

My Prayers Have Been Answered!!

I've been going to doctors for years with strange symptoms that came and went, that they never could explain. Most of them were attributed to stress, which made sense, but I was never satisfied with the diagnosis. Today, the Neurologist officially gave us the diagnosis of Parkinson's Disease, and even though that can mean years of debilitating illness, it doesn't have to be that way. Every PD patient is different. I'm just so relieved to have an explanation for what's been happening to me, particularly for the last year, that I have been celebrating all day long. Now I have an enemy I can fight!!!

Doctor S has given me the directions today for weaning off of the Sinemet and changing over to Requip, which is a dopamine agonist. There's no way of knowing if I will be able to use it instead, without trying it, so the next 4 weeks will be another trial. Sinemet is the gold standard of PD meds, but it only works for a limited number of years, before the side effects cause as much trouble as the PD does. So they try to delay starting "younger" patients like me on it, if they can help it. (I don't call 63 younger LOL)

We also asked about exercise, and he said for me to walk for 30 minutes a day for 4 days a week. From my reading I've found that Tai Chi is good for Parkinson's patients, and I've already had some training. I went to the gym on the way home today and talked to the Sensei about giving me some private lessons two days a week for 30 minutes to help me build my balance and stamina again. And Dr. S said I need to do some weight bearing exercise, too, so I'll be getting back on the mini trampoline, too.

Today is a new beginning for me in a very real sense, and I thank God that I have been diagnosed early, so I have time to improve my health as much as I possibly can. I thank you all for your prayers.