Use of Sinemet-david_mary2001

July 27, 2002

My husband, Gordon, has been using sinemet for a long time. We were told

that it would not work as well as time went by and they were right. He has

needed an increasing amount in recent years, but each time we try to cut

back he has many more problems with mobility - freezing,etc. However, with

the increased dosage he has more problems with dyskinesia. We're in the

process of trying (Dr's advice) to cut back some on the sinemet and trying a

protein distribution diet [sounds like a Gov't give-away to me :-)]. The

idea is that you eat practically no protein for breakfast & lunch in order

to be more active during the day and then pack all of your protein into

dinner and eat very late because you will collapse immediately afterward. So

far it does not seem to give Gordon any more daytime energy or make him

collapse after dinner. That's probably just as well-we still do go out some

in the evenings and besides he's getting a bit tired of salads. I guess if

it does start to work I'll have to look for more low protein lunch menus. In

the meantime, we're still trying to find the best sinemet amount to cut the

dyskinesia and still let him function. I have not seen the articles

re:sinemet and protein that you mention. Where did you find them?

By the way- last year we tried practically cutting out all of the

sinemet. When it was once again increased (because he couldn't function) the

absence and then increase did not seem to have hurt anything.

Janet O

July 28, 2002

Ken took Sinemet for over twenty years. As most of you know, his autopsy

showed he did not have SDS but Parkinson's and Diffuse Lewy Body Disease, so

his experiences may not apply to many of you. But his other symptoms,

especially the BP variations resulted in a diagnosis of SDS while he was

alive, and we treated him accordingly. When he first was diagnosed with SDS,

he was taken off all PD medications, and his BP problems did not benefit, but

he became very rigid. So, he was put back on Sinemet and took it for the rest

of his life. We had always been told he should not take Sinemet within two

hours of eating protein. But we never noticed any problem with it until the

last few years of his life. We ended up never giving him Sinemet within one

hour of eating anything and limiting the protein to the evening meal. If he

had to keep alert late in the day, we limited his protein that day or gave it

to him for lunch and saw that he took a good nap after eating. There is a lot

of information about this on the PD Foundation site, especially from

Holden who wrote the dietary book for Parkinson's patients. We also found

that Comtan helped even the Sinemet out. Ken never did develop dyskinesia

even though he took Sinemet for so many years. Dyskinesia is not a symptom of

PD; it is a symptom of too much Sinemet and is more common in Young onset

patients. It is the reason that doctors nowadays try to keep from prescribing

Sinemet too early and use Mirapex instead as long as they can.

Barbara

July 29, 2002

Barbara's report is very similar to what we would report. Peg could not

function without her sinemet. She has shown and continues to show all the

basic symptoms of Shy Drager, most especially the orthostatic hypotension.

To deal with the protein issues (and because Peg does not like to eat) we

give her a CarboFuel drink (about 400 complex calories) for breakfast.

CarboFuel can be found at a GNC store. That way Peg gets some decent

nutrition and at the same time avoids protein in the morning. That seems to

give the sinemet a better chance to kick in.

Several experienced neurologists continue to think Peg has Shy Drager.

However one does think she may have the lewy body disease similar to Ken.

Peg and Jim from Guam

> Date: Sun, 28 Jul 2002 13:18:26 EDT

> From: kmcrae@...

Subject: Re: Use of Sinemet- " david_mary2001 "

>Ken took Sinemet for over twenty years. As most of you know, his autopsy