Thread: guinea pig
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Old 04-11-2008, 10:37 PM
lurkingforacure lurkingforacure is offline
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Join Date: Feb 2008
Posts: 1,485
15 yr Member
lurkingforacure lurkingforacure is offline
Senior Member
 
Join Date: Feb 2008
Posts: 1,485
15 yr Member
Default Fatigue

My heart goes out to you feeling as you do right now. We have two small children and I have a hard time imagining how my husband would cope if he had to teach a classroom full of small people like them for his occupation! As difficult as PD is for everyone involved, I am profoundly grateful that it is not something else that would be worse.

My pwp finds that his fatigue from PD is greatly exacerbated by Mirapex, so that could be the cause of some of your tiredness, especially if you have recently doubled the dosage you take. We are going to try Requip in the coming weeks and titrate off of Mirapex, to see if we can get rid of the brain fog and sleepiness that Mirapex causes my husband, we'll see. He has been taking Mirapex from the beginning, over two years, and currently takes .50mg 3 x a day (we were taking more, but he could not stand the fatigue and fog he felt, so we reduced it).

We also delayed going on sinemet for as long as possible, like most, but everyone reaches that point at which the pain/fatigue/fill-in-the-blank with how you feel, simply becomes too much to bear. Meds are there to help, whether we like it or not, so we use them carefully to live as well as we can. We also do supplements, many of which you may have read about on this forum, and are trying plain organic mucuna. You may want to read up on mucuna and see if it might help you out. There are a lot of posts here about mucuna, both the Zandopa brand and the plain old ground up stuff that turns everything it touches black as coal. I wish we'd used the mucuna before we got started on sinemet. Mucuna does not seem to make my husband sleepy, thankfully.

One thing you may want to do if you are not doing it already is to keep a journal of what you take and when, and how you feel. We actually use a spreadsheet with symptoms and a scoring system so we can, as much as possible, see what helps, in what way, and how much. It's very hard to quantify sometimes but you just do the best you can. We haven't kept it 100% of the time but what we have in writing is more than we would ever be able to remember! It's also really helpful to either review or actually take with you to your neuro appointments because we forget how we felt last week or the week before that, or exactly when we reduced this drug to begin taking another, and if you've written it down, with whatever notes you were able to make at the time, it really helps.

I'd also suggest doing stuff that makes you laugh as much as possible, even, and especially, when you feel lousy. Stupid movies (and I mean DUMB, like Blades of Glory, Tommy Boy, So I Married an Ax Murderer, you get the idea) or the comedy channels on the radio (unfortunately, the uncensored ones are the funniest, so you can't listen with kids in the car). Those help my husband and he almost always ends up in a better mood after watching/listening than before.

I do a news search regularly and they are learning, and doing, so much. There are many things out there right now, albeit some are in trial stages. Things like DBS, spheramine, gene therapy (google Ceregene and you will find out about this, in phase II trials right now!!), prosavin in Europe, Cogane in England I believe, if you look these up I think you will feel a lot more positive than you did when writing your post. And that's not including the whole research arm of stem cells, be they your own cells, cells grown in a lab, someone else's cells, some animal's cells, what have you, there is a lot of work going on in those areas, at MIT just this week. If you have a neuro who doesn't keep up with the latest research unless it's presented at a seminar in Hawaii, like we seem to have, doing your own research will help keep you informed and in charge of your health as much as possible.

Take care, and keep the faith. Faith in yourself to overcome PD, faith in our fellow man to find a cure, and faith in whatever supreme being you believe in to give you strength along the way.
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