Dear John,

John, my history is similar to yours in that I was very young when I started
having symptoms (stiffness, writing problems and cogwheel rigidity) when I
returned from a trip from Greece in 1988.  I remember having trouble keeping
balance while bench pressing.  My right arm would lag behind my left, which
was odd because my right side dominant.  Of course at my age, which was 27
that time, I thought I was invincible.  Therefore, it was easy for me to
accept two shoulder surgeries and tons of physical therapy, self-doubt and
miss diagnosis.

Well, the first couple of years we concentrated on the right shoulder pain.
After trying PT for six months we decided to try  arthroscopic right
shoulder surgery.  The Ortho said there were lots of  inflammation but not
any structural problems or any tears that he could find.  So back to the PT
we went.  I must have seen a half-dozen different physical therapists all of
them with different techniques and approaches.  After being questioned by
many, including some of my own friends which looking back on it they were
just trying to help.  After loads more self-doubting, another Ortho
diagnosed impingement of the acromium process.  At this point, I would've
tried anything to make my right arm work somewhat normally.  So at the age
29, I went forward with my second surgery in a year and a half.

Rehab again with several more PT's and my right shoulder was worse.  My
second Ortho, who did the acromioplasty said I just wasn't trying hard
enough.  That is when, I said enough is enough.  I asked myself, who truly
since the beginning of the ordeal, has looked beyond my shoulder and at all
the symptoms.  It was my original physical therapist, Sue Dumore, a neural
physical therapist who looked at all the hard work I was doing, and work
with me to try and figure out what was causing my right arm problems.  After
about six weeks my right leg started to drag.  Sue immediately had my
original Ortho watch me walk up and down the hallways.  His diagnosis was
extrapyramidal disease which is another way of saying your too young to have
Parkinson's disease.  But to his credit, he insisted that I see a
neurologist immediately.

The neurologist, Dr. Locuratolo, after an hour of poking, prodding and
pushing plus another hour of talking with my physical therapist she said
"they're going to have to rule out many other possibilities due to your age,
but I firmly believe you have Parkinson's disease."  Having just turned 30,
and this mental picture of a former girlfriend's dimented, wheelchair bound
and shaking grandmother, I didn't hear another word she said.  It truly was
very difficult to accept.  However, reality sets in over time and you start
to adjust.  And, here I am seven years later having had brain surgery still
trying to live as normally as one can with the physical limitations of PD.

Currently, I'm working as a Human Resources Director and have started a
nonprofit for Parkinson's with and for some of my PD friends.  I will not
tell you that I do not feel down at times.  However, one just needs to look
around and look outward at the surroundings and find that silver lining that
is there if we are truly looking for it.

An empathetic friend,
Greg Leeman 37/7

-----Original Message-----
From: Parkinson's Information Exchange
[mailto:[log in to unmask]]On Behalf Of John I Quist
Sent: Friday, April 17, 1998 2:33 AM
To: Multiple recipients of list PARKINSN
Subject: Re: Symptoms prior to formal diagnosis


On Thu, 16 Apr 1998, Barbara Mallut wrote:

> NOW - back to your original question.... I went undiagnosed for seven
years
> before one MD FINALLY listened to me when I told him what my admittedly
vague
> - but nonetheless uncomfortable - symptoms were.  Since I initially began
> experiencing these symptoms at age 32, there was a
> "medical-knee-jerk-reaction" with previous MD's I'd been to (six over
seven
> years) trying to get a diagnosis - THAT was "IF you weren't so young I'd
say
> you have Parkinson's Disease."

Yeah... I have had very vague symptoms since I was ca. 18 years old, but
it was when I was 27 that the symptoms started to be troublesome, the
stiffness in my left arm was joined by tremor. Working with computers,
that's *very* annoying...

Of course, my first neuro told me (after a spinal tap and some bloodwork)
that it was MS. My physiotherapist, tho, said that she could have sworn
that it was PD. God bless that woman. :)
When I told the neuro what my PT had said, the doc hesitated for a
fraction of a second, then just shook her head.

Then, this past autumn, I went to the local university hospital to try to
get on to one of the MS research projects. That neuro, who has done MS
research for ten years, said that I don't have the symptoms of chronic
progressive MS at all. His guess was that I have PD. *bingo!*

But, after doing a lot of other tests, MRI among them, I still don't have
a diagnosis. The MRI showed some very small damages to the brain that
could point to MS, but they are much too small to be the basis of a
certain diagnosis.

Going to a MS support meeting, I found that none of them had the symptoms
I have! They had hypersensitive skin, extreme fatigue, partly paralyzed
limbs etc.
Coming here and being here for a couple of months together with all the
wonderful people in this group, I recognize my own problems. Stiffness in
the mornings, tremor, sometimes problems to initiate movement, even if
that's rare since I started on the Madopark.

If you have something that falls outside the frame, some docs just try to
push you into a frame that fits.
- Never stop believing in yourself! Keep fighting!

(You see! I'm out of the pit of depression again, and this time
I'm ANGRY! I'm going to war with the government authority that gives
financial support to students, but that's another story. If you like, I
can tell you that one too? It's a frustrating story about burocrats...)
How do you spell that, by the way???

Take care of yourselves, my dear list-family.

Yours,
John 29/0
--
[log in to unmask]


PS. I include a couple of jokes about religion, since they are so popular
around here... ;)

~~~~~~~~~~~~~~~~~

        A Priest and a Rabbi found themselves sharing a compartment on a
train.  After a whle, the Priest opened a conversation by saying "I know
that in your religion you're not supposed to eat pork ... Have you actually
ever tasted it?
        The Rabbi said, "I must tell the truth.  Yes, I have, on the odd
occasion."  Then the Rabbi had his turn to interrogate.  He asked, "In your
religion, as a Priest, you're supposed to be celibate, but ...."
        The Priest replied, "Yes, I know what you're going to ask.  And I'm
afraid I, too, have succumbed once or twice."
        There was silence for a while.  Then the Rabbi peeped from around
the newspaper he was reading and said, "Better than pork, isn't it?"

~~~~~~~~~~~~~~~~~

        I was walking across a bridge one day, and I saw a man standing on
the edge, about to jump off.  So I ran over and said "Stop!  Don't do it!"
"Why shouldn't I?" he said.  I said, "Well, there's so much to live for!"
He said, "Like what?"  I said "Well....are you a religious person or an
atheist?"  He said, "Religious."  I said, "Me too!  Are you Christian,
Buddhist, Jew?"  He said, "Christian."  I said, "Me too!  Are you Catholic
or Protestant?"  He said, "Protestant."  I said, "Me too!  Are you Baptist,
Methodist, Episcopalian?"  He said, "Baptist."  I said, "Wow!  Me too!  Are
you Baptist Church of God or Baptist Church of the Lord?"  He said, "Baptist
Church of God!"  I said, "Me too!  Are you original Baptist Church of God,
or are you reformed Baptist Church of God?"  He said, "Reformed Baptist
Church of God!"  I said, "Me too!  Are you reformed Baptist Church of God,
refomation of 1879, or reformed Baptist Church of God, reformation of 1915?"
He said, "Reformed Baptist Church of God, reformation of 1915!"  I said,
"Die, heretic scum", and pushed him off.

~~~~~~~~~~~~~~~~~

Hope you enjoy them as much as I do. :)