Parkinson's Disease Support Group

I did 6 years with Amantadine. Underused drug.

It seems it best, perhaps, if one waits for Sinemet? I have alot of fluctuations, dose failures, and dyskinesias. So, to move or not to move this is the question, but not over-move. I'm wondering what the least possible dose is.

I know I was diagnosed 2 years ago and was already in Stage 2 of PD and now in hindsight know that I had symptoms for at least 4 years and maybe 8 before being diagnosed. I just saw a transcript of a conversation with MJ Fox I think it was on the NPF site and he was asked what would happen if he didn't take the medicine and he said that in time he just wouldn't be able to move because the muscles become so rigid. I know that the WebMD Dr. says that people who take PD meds have a better quality of life and that the death rate of PWP has gone down since they development and use Sinemet for control of the symptoms of the disease. My personal opinion is the decrease in death rate has to do with how Sinemet helps with the swallowing, lung capacity and aspiration pneumonia. Also a lot of PWP die because of injuries to the head when they fall. My Administrator's mother who had PD died a couple of years ago from a head injury when she lost her balance and fell. When I told my Administrator that I had to watch my intake of protein because it affected my PD meds - she said she had no idea of that problem and that her mother always took her meds when she ate.


I know I had great pain from the rigidity and would not be able to work if it wasn't for my meds. Also I couldn't deal with the anxiety and depression which stopped with the meds.

The point I was trying to make is that many of us have had pd for a long time without the benefit of sinemet and the result is - it just gets worse. Sorry, as always, I always make a short story - long.

Deb. Sinemet DOES NOT protect a PWP from aspiration pneumonia! I've had asp/pneu three times in the last two years, while taking carb/levo, 25/100 8 times per 24 hour period. I stopped all intake of carb/levo (titrated off I should say) three weeks ago with nothing more than a slight resting tremor in my left hand.

Now, there are, no doubt, those who would probably disagree with me, but the carb/levo does work for me. By the way, You do remember that I've also had bilateral DBS/STN surgery. I am happy to report that they were both turned OFF, by me,about the same time I stopped the carb/levo. The only time I've had them on, was for a three day period, just recently, when we had a "sleep-over" at our house with three of our grandkids. Too stressful for mee with a 10 yo and a set of twin 7 yo's! I had to turn them on while the kids were here! They were joyfully returned to their parents yesterday! I turned both stims off again this morning. As long as I have no stress I seem to be managing just fine without the carb/levo AND the DBS brain stimulators!

I recognize, also, the fact that I just may be in some sort of "honeymoon" period that I hope continues for a while! It's just like post-op DBS surgery "honeymoon period when a PWP has no PD symptoms due to the implantation of the leads in the brain. Once the post-op swekking in the brain subsides, the symptoms returned with a vengeance!

There's definitely something going on in my brain. On a speculative note, which I'm really afraid to investigate: Last Feb/. I was dx'd with a real bad MRSA infection in my lungs, due to end stage emphysema. My "stinkin' thinkin' is that the MRSA is now in my brain, using the leads as a "home base, and are causing my brain to swell once again, causing the honeymoon effect I'm now experiencing! Believe me, there's no way my PD is gonw ... that would take a miracle!

Jim

BTW Deb: I had been taking Sinemet - carb/levo, since Nov. 14, 2001 to answer your question. Jim

Sorry Deb, it was jasprn who asked the Sinemet question.

Anyway, jasprn, I was able to hold off on ALL PD meds until 2001 when PD gained an upper hand and forced me to retire at a young age. That's 25 years after the onset of my symptoms!

As far as I'm concerned, Sinemet, or its' generic counterpart carbidopa/levodopa, is the only med to truly manage PD symptoms as long as you are cared for by a knowlegible and caring Movement Disorder Specialist MDS. a specially trained neurologist. A word of caution jasprn, STAY AWAY from either of the agonist drugs Requip or Mirapex. There are far too many mind/brain altering side eeffects with either of them! If your diagnosing physician offers them to you, I suggest running from his/her office and look for another doc! JIM

Hi Jim did u say u stop sinemet all at once with out any problem. NO witthdrawal symptoms. Zlatica

My neurologist told me I could skip a few times if I didn't feel like taking them. That they don't build up in your system. I have missed a dose or two, sometime feel bad sometimes I don't notice it. But I wouldn't go a long time without them. Brian

Hi JIm, sorry must have said it wrong - Sinemet doesn't stop aspiration pneumonia but does help with the symptoms that cause the pneumonia which is our inability to swallow correctly.

BC - I have only been taking sinemet since Sept. 2011 and I am amazed that when I am involved in active projects both at home and work and I am late taking my dose or like yesterday forgot a does it does not bother me. But if I am "at rest" not involved and just forget to take a dose I am consumed by the symptoms. This disease is a crazy disease.

I've shared before when my hands first started tremoring about 2 and 1/2 years ago - if I looked at my left hand as it tremored it stopped - if I looked away it started tremoring again - I could do this over and over again - that is truly crazy - like my hand had a mind of its own.