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On Fri 15 May, Margaret Mates wrote:
  For those
> of you already on an agonist regimen: 1. Do you think you started
> the drug at the right time?  2. What were the deciding factors in
> starting?  3. Any other thoughts or opinions on this issue?
> Thank you for any and all opinions.     Margaret
>
>
>
Hello Margaret, you are fortunate to be in a position to pick and choose
an agonist; the situation in earlier years was noy so helpful. In my
case I first tried Bromocryptine (Parlodel) and had to drop it because
of a bad psychological reaction (I was becoming paranoid and was lucky
to realise what was going on and stop taking the drug after about six
months. In 2 weeks I was back to my normal self.)

  I managed to cope for a few years more on just Sinemet, and was able to
cope better than most by developing my computer program, which kept me
going quite well until 1994, when Pergolide (Permax) became available.
I was 15 yrs from diagnosis (21 yrs from first symptoms), and was taking
about 800 mg of levodopa, with only a small margin between low dose
tremor, and high dose dyskinesia. At this time, the most significant
characteristic which I remember about those days is that the changes
from off to on and vice versa had a 'harsh' characteristic. Sometimes
not only did I find the typical symptom of one muscle fighting with
another muscle - it felt to me as if different parts of the same muscle
were pulling against each other, giving a sensation of tearing or
ripping. It was not very pleasant.

  Bearing in mind my previous experience with Parlodel, I was not
prepared to start shovelling large quantities of this new and unknown
drug, so I started with 500 micro grammes and sat back to see what
happened. (I continued with the levodopa with no change). The result
was just what I hoped for: It tipped me back over the fence to a place
where I had some positive margin. I am convinced that this is the most
efficient way to prolong our active life: Increase your intake until
you have a small, positive margin, and then STOP. Any more tablets are
I believe, counterproductive, and may contribute to a more rapid rate
of decline.  Since that time, I have gradually increased my dosage of
Permax as my PD continued to decline, which brings me to the present
day: I am taking 3.5 milligrams of Permax, and the same 800 mg dosage
of levodopa. One point about this sort of calculated system - it allows
you to make some predictions, based on previous years. In my case I
will be pushiing the max recommended dosage of Permax in 2 years time.
  I am already looking aroound for what to do next - Any suggestions?

I have (I think) answered your questions in this rather rambling
account, but I will just summarise.
1/ Take the agonist when you feel that you cannot continue with just
levodopa.
2/ Introduce the agonist at as small a dose as you can, but obviously
start with enough to tip you back on the good side of the track.
3/ Then use the agonist to track and match the continuing decline
   which is our burden.

Regards,
--
Brian Collins  <[log in to unmask]>