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Subject:        NEW MEMBER INTRODUCTION

It's great to meet other folks who are experiencing the same "trials" =
and may have answers to some of my questions... =20

>From the beginning it has been confusing and embarrassing.  I knew =
something was amiss but no physician could recognize it until we moved =
to Alaska. =20

I had worked as a secretary for a major chemical company in South Texas =
for 20 years; so as soon as we settled in our new location, I started to =
look for work.  I suppose the stress of the move amplified my problems:  =
I could not even pass a simple typing test because I shook so badly.   =
My handwriting got harder to read and in general, I was a mess!   I saw =
a couple of doctors but no help.  Finally, one ordered an MRI & had it =
sent it to a neurologist for analysis.  Again nothing.   The MRI was =
sent to another neurologist.  This time a closer look was taken and on =
6/30/86 I was diagnosed with "a movement disorder".  In our discussion =
we determined that I had had PD symptoms for at least 10 years!  As I =
remember, the doctor did not actually say "PD" until almost a year =
later.  Of course, I could not accept it and  immediately decided to go =
back to Scott White Clinic in Temple, Texas for another evaluation.  =
When I arrived for my appointment (I was on medication by this time) I =
had no symptoms and again I was almost laughed at!  I asked that I come =
back later "unmedicated" for another look.  They reluctantly agreed; and =
when I came back a few days later, they were "elated" with all the =
symptoms I  displayed.  So  I went back to Alaska still not 100% =
convinced of what I had!  I was given Inderal, Desyrel, Sinemet, =
Benadryl, Amitriptyline, Symmetrel, Tranxene, Amantadine, Prozac, =
Chlorazepate, Zoloft and perhaps others I have forgotten.  Not all =
medications were taken together but an alarming number were. (Could so =
much medication so soon have accelerated my disease?)  This continued =
until I had an "anxiety attack" while driving in Anchorage traffic.  I =
felt that  I was addicted and sought another opinion.  This time (April =
1993) I traveled to Virginia Mason Clinic in Seattle.  The diagnosis: =
"She has minimal parkinsonian symptoms, and most of her symptoms seem to =
be related to dopaminergic effect."  I had already stopped taking most =
of the medications and my symptoms were under control -  so well,  in =
fact, that few knew that I had a problem.

When we moved back to Texas in 1994 I postponed finding a neurologist =
until July 1995.  The doctor I chose (from our insurance list) was the =
worst experience of my life!! He inferred that my problems were =
invented.  (One of his comments was "Have you ever seen a =
psychologist?")  I got=20
so upset that I wrote a letter to the next doctor I tried.  I included =
all my previous doctors' notes and explained that I did not want another =
humiliating experience! =20

That about brings me up to the present.  The doctor that I found is in =
Dallas, Texas and is one of the top men in the PD field.  He is very =
busy and I guess, to him my questions are trivial; however, they are =
mighty important to me! =20

I currently take .50 mg Permax and 1 Sinemet CR upon awakening, .50 mg =
Permax 4 hours later, 4 hours later .50 mg Permax and 1 Sinemet CR, etc. =
  I just started this schedule today.  I was also told today by the =
neuro nurse that I was a Stage 3 (where a Stage 5 is completely =
bedfast!) Quite a shock!  I am not ready to accept "his" judgement!  We =
own a Quarter Horse Ranch and I ride and work every day (It is excellent =
therapy!)  Now I need your input!

o  Does anyone know anything about biofeedback? =20
o  What about nutrition and PD?  I was told by my doctor to eat 7 times =
as      many carbohydrates as protein.  (I've lost 20+ lbs but still =
have a good     appetite.) =20
o  What about extra vitamins? =20
o  What about magnets? =20
o  Is there any connection between being an overactive "hyper" child =
(and       grownup) with the development of PD?

Diskensis is my primary problem but I guess that's typical for my =
"stage"!  I feel that the inheritance factor plays a big part in PD.  I =
think my Mother had some of the same symptoms that I do.  My sister had =
polio when she was 12 and now at age 67 has Post-Polio.  Could there be =
any connection there?    =20

I'm sorry to have written so much but I've had almost 12 years to think =
about this "stuff" and no one to talk to... =20

Thanks for listening.

Joyce C. Waldron
55/11
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