Dear Phil,

I recognise the feeling of unrest you describe very well. I too had those
periods soon after starting sinemet, with what felt as tension in the legs
mostly and the arms less and also as an inner tension. (I never heard the word
akathesia, but its meaning must be something like restlessness.) I could
sometimes only keep myself in a chair holding myself and concentrating upon not
moving. It was easier to walk up and down the room. I had heard and seen
symptoms which resembled those of junkies, needing their next shot and was told
by alcoholics they felt the same after a few hours of sleep after drinking. So
I conceptualised it as an abstinence symptom. Because it was caused by the
leva-dopa I was always very eager to use this in the smallest possible doses.
Using more could be helpfull for one day but caused normal overdosis -
symptoms: dyskinesia not in my legs and arms but in the trunck. I learned that
I could have a good day by using one day half of the usual( a very bad day)
and than the next day a bit more than usual. Taking sinemet at night caused the
same restlessness. I could sleep a few hours but then woke up and could not
stay in bed. After that I learned it was better to take no med's at all in the
night. As the years passed by the tension changed more and more into dyskinesia
at the time the med's were wearing of. I could manage this by keeping myself
stuck sitting on the floor between two unmovable things pressing with my back
the one and with my feet the other wall. About two years ago this dyskinesias
took so much of my time and energy that I started to think about pallidotomy.

I write now more clear about it, than I could at that time because now I
understand better what is happening. This I owe to this list. It was discussed
here extensively about half a year ago.
I am now confering with a neurosurgeon about pallidotomy, which he says is
especially helpfull for these symptoms.
In the meantime however, in a mood of desperation and of feeling :I can't stand
this any longer, I read an article about how to manage difficult Parkinson
syndromes and a med's schedule that is based on another conception than the old
one is recommended. The principle is one takes the med's in overlapping times
so the next one is working before the former is wearing of. Because it is not
possible to persist this,one would become haevily overdosed) in the evening one
does not use any sinemet. That results in a period of dyskinesia, in my case
starting 4 to 5 hours after the last sinemetCR. It is now nearly 3 months ago I
tried this and it has reduced my dyskinesia from about eight hours a day to one
hour at the end of the day. Everyone who sees me again for the first time since
I took this new scheme, can hardly believe his or her eyes. I have more off
time now, but this is an exchange I don't regret.
I have no knowledge about how this works for others and I can't recommend you
to do the same. Your disease is less advanced than mine.
The new med. you talk about is Pramipexole. It is said indeed to be helpfull
against these symptoms. So if your neuro agrees it seems the most sensible to
try this.
However, knowing all this can prevent you to come in the same situation I came
in even if you don't use the same strategies.
It feels safe to know when something doesn't do the trick anymore something
else is waiting to be tried.
I would appreciate to hear from you. If you wish more info, let me know and
i'll send it to your private e-mail

 Ida Kamphuis, 53/12+ , Holland


Occasionally I get restless, ansty sensations, especially in my
> hands and legs. I've read it's a drug side-effect that goes by the
> medical name of akathesia. (Sounds like the name of a character in a
> Sholokhov novel).  When I feel this way I have trouble sitting
> still. I seem to get this effect toward the end of my med doses,
> which are the usual (eldepryl, sinemet CR and permax).  I understand
> there may be another pill you can take for this condition. (And
> for what ever side effects that causes, still another?) Anyone dealt
> with this with any success?
>
> Phil T.
> 59/6
>