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Ilan Levi posted the following:

the results showed that the mean disability score of the three groups (Grp 1
>started L-Dopa 1-3 years after onset, Grp 2 4-6 years after onset, and Grp.3
>7-9 yrs after onset) ..did not differ significantly when duration of the
>disease was matched, even thought the Dopa therapy among the groups varied
>from 1 to 12 years...  these data support the conclusion that the worsening
>over time is the result of progression of PD and not a result of the duration
>of Dopa treatment.  Early treatment improves the beginning years of the
>disease and has no adverse affect on later years."


I can only offer personal experience as a response. I was not diagnosed
until 5 years into PD, so I was obviously unmedicated for this entire
period. I did however establish a discipline of natural supplements, and
through experimentation found even a bit of symptomatic relief, especially
with high quality powerful anti-oxidants. I attribute my very slow decline
to this supplement regime and the grace of God.

Finally diagnosed in 1983, I immediately started Eldypryl and Ropinerole.
Initially I felt like I had been cured (!), which shows that everything is a
function of "compared to what?" When I finally took my first ever dose of
sinemet sometime mid-1994 I felt like a raggedy Ann  doll for a week, and
realized how impaired my movement had been. I understood what the term
"poverty of movement" meant.

So I had PD symptoms for 6+ years before I ever tasted sinemet. I
immediately experienced dyskinesia, and struggle continuously with finding
the "right dose" (HA HA HA) so I can move but not wiggle nonstop. Next came
the cliff my neuro likes to call "end dose failure", which I guess is as
good a description as any. Followed shortly by those mysterious on/off
interludes when I try to remember if I actually took my meds or not, and if
so why can't I move??? I did relieve a lot of the on/off problems by
eliminating meat, dairy, eggs, and PEANUTS, but they still reappear on
occasion just to keep life exciting.

The moral being that I delayed starting sinemet mostly because I was
undiagnosed for a long time, and I never got the honeymoon I've read about.
Granted, I don't have nearly the problems many of us have, but I don't think
that delaying the treatment delayed the adverse effects. I had worse
dyskinesia my first day than some folks ever get. My two cents.

Also, I was interested to note that the high in choline foods are the very
ones that will stop me dead in my tracks, especially PEANUTS. God I miss
them. The only food cited that doesn't seem to adversely affect my meds is
soybeans, and now I'm wondering if that's why I'm having so much more
trouble with on/off, because I use so much soy stuff to replace the meat,
cheese, eggs, etc that I cut out a year ago. I think I may have to live on
spirulina now, and it just doesn't get me that thrilled. I wonder if we can
eat cigarettes and get the rumored benefits of nicotine without the lung cancer?

Kathie Tollifson
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