Greetings,

There were some questions raised on when and whether to start drugs
in early PD which I'm sure concern many people who have just been
diagnosed.  Based on starting on drugs with two different
neurologists at two different times a number of years ago, and
whatever I've learned since then, I'd like to add to the discussion.
Also, I'd appreciate comments in return if I've got it all wrong.
And I've forgotten a few items which I hope someone else will be
able to recall.

REINDELJIM wrote:

> I am 58 years old and was diagnosed with early Parkinsons in
> December 95. I turned down an offer to try drugs [probably sinamet]
> as a diagnostic/treatment measure.

I helieve it wouldn't hurt as a diagnostic measure.  In fact,
whether one responds to sinemet is a pretty good way to indicate
whether one has PD.

> My neurologist has not been uncomfortable with my continued
> reluctance to try drugs.  He even implied that since the drugs
> would only work for so many years that perhaps I would have a
> longer lifespan if I waited.

I fail to see how PD drugs or when you start them will lengthen or
shorten one's lifespan, although there was some discussion of this
regarding selegiline a while back.

On the matter of drugs working only so long, P. Jones wrote as well:

> because we understand that any of the medications available now,
> lose there efficacy over time, we decided to stay away from them as
> long as possible.

I've heard from Dr. Thomas Chase at NIH (NINDS) the following reason
why sinemet fails to work after a number of years:  the levodopa in
sinemet is converted to dopamine by dopamine-producing cells, which
become fewer in number as PD progresses.  After a time there are too
few cells to produce enough dopamine even from the added levodopa.  I
would think that you would reach this point at about the same time
regardless of whether you were taking sinemet or not.

REINDELJIM continued:

> . . . Treatments that I have tried or am trying are: I was able to
> retire and thus reduce stress and get more sleep

Stress, even excitement of any kind, causes symptoms to become more
pronounced, and decreasing stress causes symptoms to diminish.  I
used to be able to explain this, and I could look up the reason if
asked.  I recall that it is related to the action of adreneline and
that it does not influence the progression of PD.

> A type of accupuncture which deals with teaching my body to more
> productively respond to allergins and toxins. A herb or vitamin
> called NADH [trade name ENADA] [Seemed to help but am presently not
> taking to see if it was upsetting my stomach] Nutrients prescribed
> by my accupuncturist. Chiropractic Treatments; specifically Towers
> and Atlas Wedge adjustments by a chiropractor trained by
> Dr,Versandalls [retired] Exercise regimin from Parkinsons Internet
> forum Saunas with Niacin for detoxification Vitamin E - 800 to 1600
> I. U. /day

Exercise is good.  If you are stiff from PD, you lose your range of
motion. See April 8 message from Sid Roberts.

Antioxidents that reach the brain may be helpful in retarding the
cell degeneration caused by free radicals.  Vitamin E does not reach
the brain.

Other people on the list are better qualified to comment on the
other items mentioned.

> It is hard to measure but I believe that I am slowly getting worse.
> Are any of the above treatments helping slow the rate of
> degeneraton, how can I tell?

Over a year ago there was posted on the list a long, elaborate
recipe of health food store type items that one person had finally
come up with to provide considerable relief and alleged improvement.
Can anyone recall?  I haven't heard any more about this person.  Is
the concoction still working?  All that stuff must be expensive.

> It is my feeling that I will someday have to have the drugs to make
> life bearable. Until this time comes, I would prefer to avoid the
> hassle and side affects.

I would find all the measures you are taking now to be a hassle. If
the symptoms are a hassle, or even a nuisance, I'd go with a pill or
two in small doses.  There are lots of choices now.  Side effects
can be minimized by not overmedicating.

> Your experiences and comments invited.

Well, you asked for it.  Best wishes,

Phil Tompkins
Hoboken NJ
60/9