Day by Day with Parkinson's and Peripheral Neuropathy

I was diagnosed with Parkinson's Disease and Peripheral Neuropathy in 2006, but my symptoms seemed to take a turn in a different direction in late 2007. The current diagnosis is Essential Myoclonus. You will find record here of a my journey - coping with the testing, the medicines, nutrition, digestion problems, exercise, the emotions, and no telling what else!

Thursday, December 28, 2006

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.

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Tuesday, December 19, 2006

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.

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Saturday, November 04, 2006

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.

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Sunday, October 29, 2006

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.

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