I know I must sound like a person with an aversion to taking medication. But I take a small handful in the morning and one mid day and an other small handful at night. When I remember to, a take the enormous vitamin and other supplements my Dr. recommended, but I'm doing well to take the prescription stuff, honestly. I believe good food is more well used than supplements and is less expensive in the long run.
So I am here to say that the drug I said I would never take, and the last one on the list of the 5 different classes of drugs that might help Parkinson's, Carbolevadopa, is both wonderful and terrible. It has had a somewhat positive effect on the dystonia, in that my legs are no longer angry red even if they are painful and swollen, and some of the areas that were highly affected seem to have either moved their focus or relaxed. But I do, oh, do I still have dystonia in both feet and especially in and around my right ankle and foot, making it dreadful to even think about taking a walk.
When Sinemet worked so well for me and when I had virtually no side effects on a low dose, we upped it to a more effective dose because I could tell almost the moment it wore off. And it was no problem for about 2 months, but it is now mid May and for the last three weeks I have had nausea and a mild headache each time I've taken the higher dose, and even sometimes when taking the lower dose we reverted to.
I have yet to call the Neurologist to tell her about the continued effects in the low dose, because I want to be sure it's not my imagination. I had to have two different episodes of vomiting to believe myself that it really was the Sinemet before I could tell her. Now I have the same symptoms but not quite as intense on the lower dose. There's a chronic underlying headache, and that queasy feeling that you just can't shake. I have to ask why, when nothing else ever worked so well to control my PD symptoms does this have to happen?
I have hired some household help to assist me in getting the deep cleaning done since clutter and dust make me feel depressed. I want to be done with all the un-used items hanging around my house and have a simple environment to keep clean. I fear reaching the point where I might have no say in what happens to the "stuff" of life all around me. So I am having her box and haul away what needs to be donated and running my shredder to dispose of years of old paperwork that when I was working there was no time to deal with.
I am visiting a forum for people with PD that I find helpful because some of the active members are driven, upbeat fighters who push us all to work at beating this uninvited intrusion into our lives. I am so glad not to have to be the strong one, but to hear someone else say, "FIGHT!" and know I can do it because they have. I always had to be the leader before, it seemed. Now I'm not a follower, but at least a soldier. I hate this disease. It's still better than Ankylosing Spondylitis, though.
