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Brian Collins <[log in to unmask]>

1/  Time since diagnosis - 12 years

2/  Time since first symptoms (with hindsight) see ans. to 4

3/  Age when diagnosed - 44

4/  Early symptoms - I had two impact injuries in '81 to my right arm about a
month or two apart.  It is possible that these were preceded by unnoticed
whiplash about a year earlier.  These injuries, I now know, were aggravated
by RSI (Repetitive Strain Injuries) which can be caused by playing a musical
instrument (I had recently gotton fairly heavily into playing guitar), and
pulling a lever or clicking a mouse (I was playing a lot of pac man).  But it
wasn't dx as RSI or whiplash or nerve damage and the MD augmented the problem
by giving me PT exercises on my r. side which only made things worse.  At one
point my shoulderblade slipped out--OUCH!

Two years later in '83 a neurodoc dx RSD (Reflex Sympathetic Dystrophy).  By
that time my r. arm had little swing and was cold and numb and faintly blue
at times.  My handwriting had deteriorated.   I think my  neck was pulling to
the l. esp. in cars [don't recall if the doc & I discussed this] and I think
I had a bump like a gooseegg on the l. side of neck [also undiscussed}.  This
doc  ordered an ill-fated ganglion block which went up into my head!  So the
pain team then gave me a bier block.  My arm did warm up but I was having
trouble with a small tremor or spasm.

5/  PD Diagnosis - Enters neurodoc two about 9 months later in August 1994.
 He hooked me up to some machines and concluded I had Parkinson's Disease.  I
said thank you, but no thank you.  But then a year later I was sent back to
him for another looksee, he stuck to his guns, and a second neurodoc who
seemed in awe of the first one backed him up.  But no meds were ordered, and
I was told it would cause me "no harm" if I continued w/ water exercise class
and PT.  Well, something in my shoulder snapped and shortly thereafter I
showed up with a VERY sprained neck.  The mechanical and manual traction also
administered by PT kind of got my neck back but it's never been the same
since.

For drugs, I was on 800 mg Iboprofen 4xs day and possibly a muscle relaxant
for awhile.  They tried some 1st line PD drugs, Benadryl and Symmetrel, but I
had reactions.  Finally 25 mg Elavil provided some good relief for about a
year.

6/  Start of Sinemet, etc. - At this point (@1988), I  was eased into some
REAL PD meds, Sinemet 25/100, 6 halves/day with mixed results &  I
impulsively changed neurodocs becuz a parkinson "expert" had come to town but
I now wonder if I may have suffered from the lack of continuity.

 It certainly didn't help my pain.  I was on Eldyprel from Fall of '89
(initially 10 mg, reduced after 7 mos. to 5 mg) to Summer of '92; at first I
noticed good improvement.   By 1991 I was having a lot of neck chorea which
has been a recurring problem ever since.

  Currently, I am struggling along on 4-5 25/100 Sinemets/day and 2-3 2.5 mg
Parlodel/day.  I have wondered all along whether the PD drugs are something
my body got use to and that they are fighting with the effects of the Elavil,
and the Xanax which I also take nowadays.  As I've previously posted, I have
a fairly constant weak right side, neck pain, and these days throat and head
pain.

A week-long Aryuveda massage treatment I had in '93 seemed to help some but
again I thought the drugs may be compounding the problem.  My neck chorea was
quite noticeable.   I had myofacial release treatment in my neck last fall
(based on an x-ray which showed scarring tissue in my neck) and I think in
the long run it may have helped but again I feel some "healing" has been made
more difficult due to the drugs.

If, dear villager, you have read this all, God bless you for your patience.

Barbara Blake-Krebs
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