Snyders bound for the Big Apple

Wednesday, August 16, 2000 - Chillicothe, IL - In about a month, Joan
Snyder will travel to the New York area for the premier of a book she
helped to write, rub shoulders with the likes of Helen Gurley Brown and
others in the New York literary world, and even see a Broadway play written
by Elton John. And, she owes it all to one thing - the fact that she has
Parkinson's Disease.

"God bless Parkinson's Disease. I hate it. But it has given me the
opportunity to do things I never thought I'd be able to accomplish," said
Snyder.

Parkinson's Disease is a progressive disorder of the central nervous system
affecting over one million people in the United States. It is characterized
by a decrease in spontaneous movements, gait difficulty, postural
instability, rigidity and tremor.

Snyder isn't exactly sure when Parkinson's first entered her life. "I only
know that it came quietly, gently; at first barely making its presence
known like a whisper of things to come," she writes on her own home page on
the internet. She noticed a numbness on her left side after the birth of
her daughter, Allison, who will soon turn 13, and her condition worsened as
time went on and she had her second child, son Mitchell, 10.

Since 1996, she has endured two brain surgeries, called pallidotomies, in
which the patient is awake with only a mild sedative to calm them so they
can communicate with the doctor. The patient is fitted with a four-post
metal ring, or "halo," held in place by four screws bored into the outer
table of the skull.

"My second pallidotomy nearly killed me," she said, indicating her doctors
did not give her high odds. "I believe God brought me back for a purpose.
This is why I work so hard, so my kids can grow up and never have to worry
about Parkinson's or any other neurological disease, we're so close to a
cure."

Her condition is treated with medication, but she has found another way to
cope with the disease - sharing the story of those afflicted with
Parkinson's. Every bit as important as the medicine she takes regularly is
the contact with other Parkinson's sufferers she has found, via the internet.

It is online that she has discovered a way to communicate her feelings
about Parkinson's and gain strength from others in the same predicament,
and become a soon-to-be-published author in the bargain.

"The Letting Go: A Parkinson's Story," an art-photography exhibit
chronicling the struggles of Chillicothean Claude Scott, who suffered from
Parkinson's, which was created by his daughter Jane, and area photographer
Marc Esser, was the inspiration for the book, "Voices from the Parking Lot:
Parkinson's Insights and Perceptions."

The idea came in a conversation with Margaret Tuchman, who also has
Parkinson's, whom she got to know through the internet. She is the
executive director of The Parkinson Alliance, a major contributor to
Parkinson's research.

"When I saw the exhibit, I was floored by it," Snyder said. "When I met
Jane I was astonished to find the art show was sitting gathering dust." In
talking with Tuchman, the two agreed what was needed was a book to showcase
the art.

Snyder and her chief book collaborator, fellow Parkinson's sufferer Dennis
Greene, who lives in Australia, began soliciting material from known
writers with Parkinson's. "The response was overwhelming. it began to
evolve and take on a life of its own." The book is described as "a
celebration of life by people who have seen that life through Parkinson's
eyes."

On Sept. 17, Snyder and her husband, Stan, will fly to New Jersey along
with Jane Scott and her mother, Esser and his wife, and Greene and his
wife, to attend a reception and showing of the art exhibit, at the National
Arts Club of Gramercy Park. The event will also be a fundraiser for
Parkinson's research, and the book will also be available for sale. Snyder
will read some of the passages she wrote for the book, and guest celebrity
readers like Gurley-Brown will also recite passages.

Another appearance on behalf of People Living With Parkinson's, Inc. is
scheduled Sept. 23 at The Philadelphia Hotel in New York, and in between,
on Sept. 20, the Snyders will see the Broadway show. A more casual author's
reception is planned in Manhattan, too.

"I'm going to be like Cinderella. I have never been to New York," Snyder
said. Some of her Parkinson's friends bought her a new dress for the occasion.

Snyder estimates she spends 8-10 hours a day on the computer pursuing
Parkinson's information. "Three years ago I had not a clue how to turn on a
computer," she said. "I had to ask by children." Snyder knows her
"Parkinson's Pals" on the internet are not the only ones who help sustain
her as she battles the disease. There is support close to home, too.

"My mother is my heart and my soul, and my husband, too," she said. "They
both give me the time and the space to do what I have to do to feed my
obsession. My husband is so good taking the children everywhere they need
to go."

Snyder says her children have always been around "people who are
different," like her father who had Alzheimer's Disease. "Sometimes they
might get angry that mom can't do stuff like every other mom, but I think
(because of the situation) they are going to grow up to be caring,
wonderful, adult human beings."

Snyder has sponsored two local Parkinson's Awareness Days and a Parkinson's
"Chat-Room Reunion" which brought Parkinson's people from all over the
country to Chillicothe. "Chillicothe is a very tuned-in Parkinson's town."

Through Snyder's efforts (and some matching funds from The Parkinson
Alliance) over $5,000 has been raised in Chillicothe Parkinson's events.

"I sincerely believe I have become a better person because of, not in spite
of, the Parkinson's," said Snyder.


By David Zoeller
Independent Staff
Volume 2 - No. 48
2000 Chillicothe Independent
Created & Content by James Volpe
"http://www.cinewspaper.com/feature.html"

janet paterson
53 now / 44 dx cd / 43 onset cd / 41 dx pd / 37 onset pd
tel: 613 256 8340 url: "http://www.geocities.com/janet313/"
email: [log in to unmask] smail: POBox 171 Almonte Ontario K0A 1A0 Canada