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Hi Diana.

Only the medical professionals on our list are qualified to advise you on some 
of your questions.  I'm sure many of the list members, however, would be glad 
to share their personal experiences.  For what it's worth:

1 & 2. We've all heard about the possible neuroprotective qualities of certain 
medications, which is why many neurologists feel the earlier one goes on those 
meds, the better.  As we say so often, though, everyone's different.  My 
wife's symptoms had progressed quite a bit before she began medication, and 
only Sinemet worked for her.  She needed doses of 50/200 to get her 
functional, but being that she is very much against overmedicating, she took 
that on an "as needed" basis.  The drawback with Sinemet, as most PDers will 
tell you, is the fact that it doesn't work well forever.  At first, it's 
amazing how well it does work.  Five years or so later, the patient has to 
choose between which is worse, PD symptoms or side effects of the drug.  At 
least, that's where my wife found herself, and the neurologists all told her 
this was normal.  The motor fluctuations, the dyskinesia, etc., all became 
unbearable side effects of Sinemet.

3. I'm sure you'll get varying responses to this one, too.  My wife took the 
minimum, in terms of meds, to get her by.  Both her neurologists would have 
had her taking higher doses.  Some of our friends, even after DBS, take more 
medication than she *ever* took.  Each neurologist, it seems, has a different 
mindset as far as this goes.  Some are heavy on prescribing meds, others more 
conservative.  My wife's experience was different than yours, for example.  
She started on higher doses and cut herself way back once the side effects set 
in.

4. We tried everything non-pharmaceutical before embarking on drugs.  My wife 
tried herbs (such as those you mentioned, and others), acupuncture, 
myotherapy, homeopathy, organic vegetable extracts, all sorts of alternative 
approaches of diverse descriptions.  Some helped, temporarily, others not at 
all.  Some were inexpense, others very very costly.  Even after starting meds, 
my wife continued searching for "natural" treatments.  If a non-pharmaceutical 
method would have worked for her, she would have clung to it.  In her case, no 
such success.  We met a lot of well-intentioned people, but none had the 
answer.

As a footnote: A year ago, my wife had DBS, and it has changed both our lives 
dramatically, for the better.  Currently she is taking no medication 
whatsoever.  She has not taken any Sinemet whatsoever for 8 or 9 months.  By 
no means is she back to "normal," but she is functioning far better than she 
did five--maybe ten--years ago.

Again, for what it's worth.  Just our experience.   Scott

>===== Original Message From Parkinson's Information Exchange Network  
<[log in to unmask]> =====
>First, thank you again for the invaluable  responses to my query to
>this list last December. It was those responses that urged me to see
>a neurologist who specializes in movement disorders.
>
>I'm 66. I began to develop some pd symptoms 3 or 4 years ago, and was
>provisionally diagnosed with pd 1 1/2 years ago by a neurologist who
>prescribed Mirapex. He said there was no need to begin immediately--I
>could start any time.
>
>I did not start on the Mirapex, because I am conservative regarding
>pharmaceuticals. (Vioxx was prescribed for me and I declined to take
>it.) Six months ago I found Janice Walton-Hadlock's book on
>"pdrecovery" according to the principles of Asian medicine, and I
>followed the prescribed routine till now with inconclusive results. I
>saw the neurologist specializing in movement disorders two weeks ago,
>and he confirmed the diagnosis, saying it looks very much like pd,
>AND he said that it is progressing.
>
>Neurologist 2 (the movement disorder specialist) prescribed Sinemet
>rather than Mirapex AND he pressed me to start taking it right away.
>He said there is some recent evidence that patients who start on meds
>early do better for longer than those who postpone it. He promised to
>supply the citation, and I will call his office in a few days to get
>it.
>
>Here are my questions:
>
>1) What can you tell me about the advantages and disadvantages of
>starting meds sooner rather than later? Do you know what study or
>studies Neurologist 2 may have been referring to?
>
>2) Mirapex or Sinemet or something else? What should I know to help
>with the decision? (Of course I will question both neurologists about
>this.)
>
>3) Neurologist 2  said I should take the Sinemet in increasing doses.
>I can't read his handwriting, but it looks like 100/2? three times a
>day. First week: 1/2 pill 3x day. Second week: 1 pill 3x day. Third
>week: 1 1/2 pills 3x day. If I do start Sinemet, should I look more
>closely at dosage, and consider alternative dosages?
>
>4) Does anyone have any experience with herbs, particularly passion
>flower, evening primrose, gingko, milk thistle, grape seed, or
>pinebark extract, in treating PD?
>
>Thanks in advance.
>
>Diana
>
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Scott E. Antes
Department of Anthropology
Northern Arizona University
Flagstaff, AZ 86011-5200

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