Margie, Marling and Phil
Margie, you asked whether neuros have detected that young onset PWP's have a
slower progression than old onset ones.
It was said so to me in the same words in 1984, when I was first diagnosed.
The neuro said, with young onset the start was usualy more abrupt, which was
caused by their being more able to compensate for their loss of cells.
So in young onset patients the disease is more advanced at the moment it is
diagnosed.
The progression however is slower. I myself was an example of that. After the
diagnosis, when I could hardly walk and was weelchair bound, my condition
ameliorated for the next two years. It was difficult to find the right mixture
of med's, but having found it the disease stabilized.
I had a period in which I could ride my bicycle but could not walk.
However after a period the weelchair could be expatriated to the attic.
It was never easy for me to tolerate sinemet. I used halfs of the 65 ones.
Then during many years nothing essential changed.
My impression, seeing other patients, was not only the course for young
onset ones is different, but the syndrome too. Now I am thinking about that, I
realize the importance of visual cues for detecting such things. Seeing another
PWP can sometimes give the immediate impression of: that is one who has the
same variant I have or that is one who has another variant.
Ida Kamphuis, 53/12+ , Holland
Aan 16-7-97 6:47, in bericht
<[log in to unmask]>, Dick
Swindler <[log in to unmask]> schreef:
Marling and Phil -
I think we all agree that there are great differences among individuals
inthe speed with which PD progresses. I have just a general observation,
andthat is - it seems to me that people who are diagnosed at a younger age
progress more slowly than people who are diagnosed in their later years.
I know that's not true in every case, but I wonder if any of our neuros
havenoticed this as a general trend.
Also, Phil - Dick's dystonia seems entirely related to the amount of
Sinemete takes. We have thought it was a sign of being "overmedicated." He's
now at the point, though, at 52/15, that he has to tolerate some dystonia in
order to get enough dopamine to keep moving. It's a tricky balancing
act.
Margie Swindler [log in to unmask]
