Hi! Paul:
Thanks for sharing your history of medicine and your regimen. T his si
gthe kind of info we newbies need. I am one of those who has been dxed in
2000 with PD and have a prescription for sinemet. Have been trying to avoid
sinemet and attempting other things. For example, I am taking
phosphatidylserine, gluathione, Vit E, C, B6, 12, CoQ10, alpha-lipoic acid,
and Folate.
I would appreciate if you share with us the other non-PD anti-aging
stuff you take, if you don't mind.
This is also my working hypothesis: Since PD affects usually old age
people, anti-aging factors should help ameliarate or even retard the
progression of PD, if by luck we can reverse the process of aging even by a
small fraction. I always believe in Dr. Lieberman's motto "Shaking up
Parkinsons. Thinking like a tiger and thinking like a fox".
Goold luck.
And thanks.
Raj
[log in to unmask]
----- Original Message -----
From: "Paul Lauer" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Thursday, June 13, 2002 10:02 PM
Subject: perhaps neuroprotection, perhaps luck
> Hi All: It's been awhile since I put my oar in the LISTSERV water but
there
> seem to be a number of somewhat new readers and writers to whom my stuff
> won't be repetitive or boring. Everyone else please grit your teeth.
>
> I was dx in February 1999 so I am only three+ years into the disease. I
> started with tremor and micrographia and have since added stiffness (not
> constant) in my tremor arm and a slight shuffling, basically when I'm not
> paying attention. Either I am lucky with a slow progression (knock wood)
or
> the proactive steps I have taken are helping. Neither I nor either of my
two
> Neuros know, but I'll settle for it, whatever the reason.
>
> What do I mean by proactive? Early on I joined a Ganglioside GM! study in
> Philadelphia (3 hours drive each way). I was in it for more than I year
when
> I (foolishly) dropped out trying to find the cause of lower leg edema
which
> had developed over time. It is a study of a possible neuroprotective
compound
> and again, unless I just am lucky enough to have natural slow progression,
I
> believe it was working. Unfortunately, having dropped out, I can't rejoin.
> Sometime in 2000 I read of the Coenzyme Q10 study recruitment so I called
one
> of the study centers and found out I was ineligible because I was on meds
> (Sinemet) but had a long chat with the coordinator who was good enough to
> tell me that no one thus far had developed any adverse reactions to the
large
> doses in the study. So after checking with my main Neuro, Dr. Stanley Fahn
> and finding he had no objections I began taking 900 mg of COQ10 and was
> therefore a year and a half or so ahead of the curve although the
theoretical
> therapeutic amount is 1200 mg/day which I have now stepped up to taking.
>
> About a half year into dx, information I read here and elsewhere convinced
me
> that I didn't want to be taking Sinemet if I didn't absolutely need it. I
> suggested this to both Neuros and wound up coming off Sinemet and onto
> Requip, eventually reaching 3.75 mg/tid before needing to titrate down off
of
> it to see if it was causing my edema. I stayed off it for 4 months,
> reluctantly substituting Sinemet CR 25/100 bid and the edema didn't abate
so
> I am almost back up to my therapeutic dose again with one of the two
Sinemet
> eliminated and the other to be eliminated in two weeks when my dose is
where
> I want it to be. Point of this last bit of prolix is that by luck, I
started
> Requip early, and it has now been shown to have some neuroprotective
value.
> But these are only the beginning of proactive. On Dr. Fahn's advice, I
take
> 3000 mg of vitamin C and 3200 I.U. of vitamin E daily. On the advice of my
> other Neuro, I take one Beta Carotene (25,000 units of vitamin A) and
> something called a stresstab which is a CVS (retail pharmacy in the
Northeast
> U.S.) version of mainly a vitamin B cocktail. To these I have added 200 mg
of
> Selenium, another strong antioxidant and I won't bore you with the non-pd
> other stuff I take to try to be younger than my approaching 65th birthday.
> the important point here is that with the cognizance of my Neuros I take
> massive doses of antioxidant daily.
>
> So, one neuroprotective clinical trial, one neuroprotective supplement,
one
> neuroprotective medication, massive doses of antioxidant, and perhaps a
large
> dose of luck enable me to keep working (I build houses), keep at my hobby
(I
> collect Wedgwood), read three newspapers a day, be the picture framer in
my
> wife's art gallery (which will end soon after 16 years) and generally live
my
> life as it was pre dx discounting a little tremor, stiffness here and
there
> and inability to sign my own check legibly from time to time. As a not
> inconsequential aside, but perhaps fodder for another thread is that all
the
> fine motor skills required in the frame shop are unaffected whenever I'm
> framing.
>
> If this message says anything, it says be proactive. Don't put yourself
fully
> in their hands. Make suggestions. Try stuff.
>
> Regards,
>
>
> Paul H. Lauer
>
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to:
mailto:[log in to unmask]
> In the body of the message put: signoff parkinsn
>
>
----------------------------------------------------------------------
To sign-off Parkinsn send a message to: mailto:[log in to unmask]
In the body of the message put: signoff parkinsn
