I know that you have heard all about Parkinson's Disease from Michael
J. Fox, Muhamud Ali, Janet Reno and Joel Haveman. These are all
prominent people that suffer from this insiduious, stinkin', robber
disease and we are quite grateful to them for bringing the spotlight of
awareness to our condition. Would you please take the time to listen to
someone who isn't prominant...someone who is just a wife and mother and
51 years old and lives in Chillicothe, IL?

That someone is me-i'm married to a great guy and the mother of two
quite active teens. They don't remember their mom as anything else but a
"parkie. Their lives have always been circumvented by my own; out of
necessity. I have been diagnosed for almost 13 years now and if you have
a moment, I will tell you a story.

In 1987, after the birth of my darling baby girl, I was thrilled to be
able to nurse her. She would fall asleep in my arms, nursing; we would
fall asleep in chairs, in bed, and she nursed! I remember jokingly
telling my La Leche League friends that my "tingly" left arm was caused
by excessive nursing. Some days, my arm wouldn't move, but life was
"wonder-full" - watching my baby grow and flourish - and then the news
that I was pregnant again! I knew that I was truly blessed!

Life was proceeding according to my time-table. I was too busy to pay
any attention to the whispers of my body - I could only hear what it was
shouting at me as I carried my ten-pound-three-ounce "kick-boxing" son
to term! He was born on Valentine's Day, 1990.

Now, we began to hear another kind of whisper - murmurings at first, and
then stories of a madman in Iraq. My husband, Stan, was in the Navy
Reserves - a Seabee - and my brother, Jeff, was in the Army Reserves
Transportation Unit. But surely this crazy man would not cross the line
that the USA had drawn in the sand?! In September 1990 (just after Ali
turned 3) my brother was activated and sent to Saudi Arabia. Stan was
activated in November and sent to Okinawa, Japan. He would go on to
Saudi as soon as the ground war began.

Meanwhile I was left at home with two babies, trying to make ends meet
on a military paycheck. I had no choice but to return part-time to the
work that I loved - bartending at the Country Club. Now I really had no
time to listen to the ever-more-demanding whispers from my body.

But I knew that something was wrong; that I was having serious problems
counting back change, carrying drinks, and lifting and hauling heavy bar
supplies. Someone said that it was probably just a pinched nerve. I
promised myself that when things got back to normal ...

In February 1991, we celebrated Mitch's first birthday - complete with a
cake decorated with yellow ribbons. My girlfriend made a video tape to
send to Dad and later remarked about how strange I looked with my left
arm immobile and hanging limp at my side.

One day soon after, I was horrified to notice that I was limping - my
left leg wouldn't work! I went straight to my doctor, who immediately
ordered an MRI of my head. The results came back normal so I continued
to fool myself - to hush those noisy old whispers. I had too much else
going on in my life...

In April 1991 Stan came home; his mother was dying of cancer. The
doctors gave her two months - she lasted 3 weeks. My brother came home
right after the funeral.

At last, spring was a reality: my family was together again, none the
worse for wear! And then that Sunday, we were having a family stroll
through the mall and Stan stopped me, looked me in the eyes and asked
when I was going to deal with my health problems.

Believe me, I was back at the doctor's office the next day! He
recommended a neurologist whom I was able to see later that week. Dr.
Lee immediately put me in the hospital to run tests. As he ruled out
disease after disease, I began to wonder just what the hell was going on
inside of me.

He concluded that I had all the symptoms of PD, but said that I was "too
young". He started me on the main PD medication, Sinemet (generic
levodopa/carbidopa). I realize now that he was reluctant to diagnose me
to a life sentence, so I had to be content with "letting the symptoms
more fully manifest themselves".

We decieded that we needed a name for this enemy; for this dirty fighter
so we went to Mayo Clinic in Rochester, MN and heard what I had expected
to hear: "You have Parkinson's Disease."  Maybe it was a good thing that
I was so stupid about pd. Maybe it was a classic case of "ignorance is
bliss."
Because if I had a good idea of what was in store for me...things might
have turned out very differently.

For the first three or four years after my diagnosis, I was in what is
called "the honeymoon" span of my disease. My symptoms were very much
controlled by my medicine and I remember thinking that if this was the
worst PD had to throw me-it was gonna be a cakewalk. WRONG!

I mentioned before that this disease is a robber disease. I say that
because as I look back, I can see the little inroads that it made on my
life, my personality, my family and my very being. There is not one spot
that you could point to where a big chunck of myself fell by the
wayside, but there it all is-spread out behind me-the crumbeling pieces
of my life.

In 1995, I became aware of just how powerful an opponent I was facing.
It had the abiltiy to change my life virtually overnight. One day, I
woke up and my meds quit working-they just stopped-no warning, no by
your leave-nada. I coud not get out of my bed. I could not walk, or eat
or go to mother's club; I felt weak and very betrayed. By the time that
I called my neuro-thinking that I was loosing my mind, he told me that
this was the first of my medicine adjustments-something that we would
have to feel our way through because each person responds to treatments
and drugs in different ways. This was called the snowflake disease for a
reason! For the rest of the year, I was tried on every drug that came
down the highway. One made me throw up, one didn't do anything at all,
another kept me awake all night, another made me fall asleep. For days
on end, I couldn't get off of the couch and I began to think of the
unthinkable.

The news on the TV told about a marvelous new procedure being done
called a pallidotomy. In this operation, a metal halo was screwed to
your skull and you needed to be awake for the 8-10 hour surgery while a
doctor poked and prodded around inside your brain. It seemed like Star
Wars to me.
Like a oyster that gets a piece of dirt in it's shell, the idea slowly
turned in my head, taking form and becoming smooth like a pearl. After
about 6 months of polishing and finishing, it  became clear that it was
by far more acceptable to me to face the pallidotomy than to continue
life as it had become.

I found a man who was my age and had the operation. He and I became
friends and with my husband, we decieded to go for it. My friend called
the neurosurgeon that had changed his life and he agreed to see me
immediately. We decieded that I would have just one side done-the
surgeon would go in on the right side of my brain to try to undo the
damage that the symptoms had done to my left side: my left hand was
frozen into a claw, I suffered from tremors and rigidity on both sides
but predominatly on my left side. I had the classic look of a parkie-no
animation in my face-the pd mask. I prepared for my surgery the way I do
everything in my life: I prayed and sought the strength and courage that
I would need through my faith, my family and my friends. Not once did my
determination falter. And the surgery was an unbelievable success!!

My strength had returned, I was so much improved that I looked forward
to each day again...and I got greedy. I had to continue to medicate my
right side which meant that I was overmedicating my left side. I felt
great but a bit lopsided-kind of like Dolly Parton with half a boob
job...and I thought to myself, if once worked so well, what would it be
like to have both sides done. Then came the rumours that Medicare would
quit paying for the procedure and insurance companies would follow suit
by the next year. We made a leap of faith and scheduled another
operation just 5 months after the first.

I should have listened to my inner voice that told me to get out of the
car at the light on the way to the hospital. I should have figured that
this wasn't my day when they lost me in pre-op for an hour and a half
without meds. I should have thought twice when the nurses had a spat
over which came first-the halo or the mri. I told them that the halo
comes first and then the mri. The second operation seemed to go on
forever, I couldn't remember the pain during the first one but this time
it was almost unbearable. I was hurting and had all that I could take
when mercifully, the surgeon said: "Would you like something to put you
to sleep? We've done as far as we can go for this time."
I whispered yes.

When I finally woke up, much later, it was with a deep sense of dread
and foreboding. I didn't feel right and not only did I have a wicked
headache, my head seemed to be so thick and full of padding. I feel back
asleep crying without knowing why.

We learned the next morning when I was given an mri that the intern who
was to close my head up had inadvertantly touched a blood vessel in my
globus pallidus causing a bleed. I will never know how close I came to
stroking on the table. All that I knew was that my husband carried home
a shell of a person-that I was unable to feed myself or bathe myself or
talk or even to think entire thoughts.
I was totally dependant on others to care for me. As I sat on the back
porch with my dad (who had alzheimer's), watching the birds fly to the
feeder in the back yard, I retreated into myself.

Somewhere, somehow, deep inside I found the strength to fight my way out
of the oblivion that had overtaken my mind and my soul and i came to
take back my life. My neurosurgeon said that he was glad that he was not
a betting man because he wouldn't have given me 1 chance in 50 that I
could make my way back. I will never be the same physically...that part
I have accepted, but I am still Joan and I am an activist for
parkinson's awareness.

Since that scarey time in my life, I have come to understand myself and
my fellow Parkies in a way that has taken me through some of the
thorniest paths of my life. I am a Catholic and I have spent hours going
round and round about the issue of embryonic stem cells. I have met and
become friends with hundreds of people with parkinson's, and I feel that
I have a ministry on line to help others face their disease. I have had
opportunities that I would never have thought possible. I have been to
New York twice, I have co-authored, co-edited a book with my best friend
Dennis Greene from Perth,Australia. The book is called "VOICES FROM THE
PARKING LOT-parkinson's insights and perspectives." And it is a
beautiful book-written by over 30 PWP's or their caregivers with an
introduction by Helen Gurley Brown.  I am the Creative Communications
Director for the Parkinson Alliance which raises and distributes money
for research. I am on the Board of Directors for PLWP.org (People Living
With Parkinson's) an on-line support group that deals with the day to
day problems of getting meds, finding housing and paying bills. With my
friend and fellow PWP, Holly Angus, I have a shop called Jitterbug,
which is in donated space and is stocked with things made by pwp's and
the people who love them and the money goes to PLWP. This last year, I
had a walk that raised $15,000 for the Alliance, with a portion of it
going to help fund a researcher at the University of Illinois College of
Medicine who has a patent on a procedure to use a patient's own blood to
grow dopamine-producing cells. I also had a fund-raiser for Democratic
Representative Lane Evans, a fellow parkie and all around great guy-he's
the first politician that I have trusted since Senator Paul Simon. And I
just finished a fundraiser that was held for us by Preston Jackson-a
well-known area artist and jazz player.

Please, please, Mr. Donahue, if you are still with me, please think
about doing a show about the stories that I could tell you...about pain
and suffering and the indominable human spirit and joy and anguish over
each new medical breakthrough; of a life filled with seemingly
insurmountable trials and overwhelming successes. Let me tell you about
the hundreds of people who aren't famous but who have inspiring stories
to share with the world. Please give us an opportunity.

LINKS:
http://www.pwnkle.com/jes/jes_web/index.htm

--
Joan E. Blessington Snyder       50/11
http://www.pwnkle.com/jes/jes_web/index.htm
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"Hang tough...........no way through it but to do it."
Chris-in-the-Morning   (Northern Exposure)

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