Hi folks,
I just joined the list, so I thought I'd introduce myself.  Actually, for
anyone with an incredible memory and a strong compulsive streak, yes, I signed
on last June or  July and then dropped out when I had shoulder surgery on July
7--more on that later.  I'm 52 years old and I've had PD since 1986, a full
year before it was diagnosed.  I think that I've tried practically every PD
drug in existence, in various combinations, at one time, or another,  And my
condition got worse and worse--although I have never (yet) suffered from
"freezing, per se, I'd become so stiff and weak in my "off" periods. that it
often felt like my body was frozen in place   There would be no way that I
could get comfortable  and I didn' t have the strength to hold a book or the
manual dexterity to turn the pages.  My job as a psychologist/director of a
treatment program--more later-- called for a lot of talking to people, both in
person and on the phone--which, fortunately, I could do although talking the
telephone was often problematic--thank heaven for the speller phone.  The
other major component of my  job was paper pushing and I was definitely
hampered by my PD n this regard.  My office desk was a prime example of what
they call organized chaos, and in my off periods finding myself in the
frustrating predicament of knowing where a needed or document was in the piles
of papers on my desk but being physically unable to retrieve it.  In my on
stages, I  was horribly dyskinetic.  This was because I was taking scandalous
amounts of sinemet.  I won;t bore you with the details---suffice it to say
that I was 30 pounds underweight despite the fact that I regularly ate like a
horse (all my friends envied me)--because I was in constant motion during my
on periods.  So, I had successive bilateral pallidolotomies in 1996 and things
have improved tremendously since then--that is say, in terms of the major
symptoms of my PD.  I now have practically no dyskinesia to speak of. My off's
are much more mild and less disabling, and my ons last much longer--as a
result of which I take considerably less medicine.  I went back to work 1 week
after my first pallidotomy and I worked right on up to the second one 9 months
later.   This time, it took me 6 months to get back to work, and then I had to
quit 6 weeks later--and 2 months after that, I had to resign my position.
Now, I am officially permanently disabled.  WHY?!   You may ask.at this point,
in view of the terrific results of the pallidotomies.  One answer  is that I
had really been pushing myself to the limit for the last few years in trying
to carry on a "normal" life despite my PD and more and more, it felt like I
was just barely hanging on.  My job exhausted me and left me with little
energy for anthing else.   The point of all of this is that whenI I got s
taste of what it felyt like to not  push myself  to the limit and to take
better care of myself,   I.liked  it.  But there were other, more tangible
reasons   Two of these reasons are side effects that are frequently associated
with pallidotomy, especially when done bilaterally  which is done relatively
infrequently for these and other reasons whicvh make it a mopre risky
procedure.    The side effects are excessive drooling and voice/speech
problems--in my case, poor speech volume and a tendency to slur.  My surgeon
kept reassuring me that these symptoms were probably temporary and that they
would eventually resolve themselves, whjich they eventually did but it took
quite a long time and I could not return to work in that condition.  And, by
the time I got these problems under control, I was having other ptoblems,, as
well.  The frst related to my back and started out as periodic shooting pains
in my buttochs and later progressed to constant, disabling pain in both legs.
I tried many treatment interventions--including acupuncture and Feldenkris
massage but it kept gettimg worse; the pain became so severe that I ended up
in a wheelchair.  My doctors told me that i didn't need surgery but finally I
found a neurosurgeon who rexoewmended and did surgery.  In doing so, he
removed a herniated disc and considerable spinal stenosis (roughly, the spinal
eqwuivalent of cholestertol in the blood vessels)   Surgery successfully
eliminated the pain I was having before it, and I actually had about one week
of pain-free living but then I started having pain in my right hip, which
eventually sptread down to my right knee.  I was told by two doctors thaar
this is bursitis but I have not been able tog RFD myself of the pain. I can
walk but only for short distances before it starts to hurt so much that I have
to sit down..  Standng still is agonizing--worse than walking.  The doctors
say that this condition is due to my poor posture, which is largely due to my
PD. Then, there's the matter o\f my shoulder (left).  I have dislocated both
of my shoulders numerous times playing sports  and in various other
activities.  Although I am right-handed, the left shoulder  dislocations were
more severe and so I had it operated on in 1968--and they told me then that I
would suffer  from bursitis in the shoulder when I got older, as a result of
the surgery.  Well, I didn't get bursitis but I developed a severe and painful
case of arthritis in the shoulder which doctors attributed to the outdated
surgical techniques used in 1968.  Again. there was consensus from several
specialists that the shoulder was so consumed with arthritis that the only way
to get relief would be from shoulder replacement.  I was referred to the local
expert in shoulder replacement, my insurance--amazingly agreed to cover the
surgery and I was set..  The surgeon was so thorough that he used a special
prosthesis with me to account for the shaking caused either by tremor or by
dyskinesia in PWP.  II was ecstatic when the few days after surgery, I felt no
pain at all in my shoulder--not some but NONE.  But then,as I got into
rehab'ing the shoulder, it seemed to take forever and I noticed that some of
the old pain seemed to be returning, and was getting worse.  Ii mentioned this
to my neurologist, and the fact that it was especially painful; during my off
periods.  He examined me and told me that I had dystonia in my shoulder--a
condition which consists of muscular cramps and spasms which is sometimes
associated with PD.  This condition existed independently of the arthritis and
had no relation to the surgery, so they said.  Looking back, I'm sure I had
the dystonia before the shoulder surgery, and it may have been the primary
source of my pain.   Hmmmm.  The good news is that dystonia is treatable--by
injections of a very expensive substance known as botoxin which enervates. or
disables the offending muscle  The treatment effects only Lars for 3-4
monthsat which time you havre to get another round of shots.   And you cannot
get rthe shots more frerquently than that--which means that I have got to wait
another 21/2 months for relief from the one
muscle which started to spasm again.

Well, that's far more detail than I ever meant to bore you with.  I got
carried away--I guess I'm wondering if anybody has had a similar experience.
I mean I have battered my body for years through constant athletic activity,
and both the rigidity and ther dyskinesia have no doubt done violence to my
spine.  And my back and my shoulder have bothered me for years but they were
just minor prtoblems; now, all of a sudden, they're both major problems.  I
can't help thinking that the poking arouund in my brain, for all the good it
did me may have upsset some derlicate, even precarious overall balance, or
homeostasis which accounts for this emergence of previoously minor issues to
the forefront.  I welcome any thoughts or sharing of comparable experience.
Marty Polonsky