The Herald-Gazette
Almonte Ontario Canada

Friday, May 4, 2001

Spreading the word about Parkinson's disease

by Brent Dowdall
Staff Writer

Technology has been a lifesaver for Janet Paterson.

It has not been advances in medical technology, however, that has kept her
going so much as the ability to communicate with others who have
Parkinson's disease and those that are trying to cure it.

Paterson was diagnosed with Parkinson's disease (PD) 13 years ago, although
she believes she started to show symptoms for three years prior to her
diagnosis. While it has changed forever the way she conducts her life, the
Almonte resident has turned to using her home computer to spread news and
information about PD.

Since 1995, she has been using email to keep in regular contact with others
who have PD, and in May 1999, she created her own website devoted to the
disease, those that it affects, coping, and cures.

"I discovered I loved writing because of email, and I discovered (the PD)
listserv", said Paterson, 54.

(The PD) listserv is a support group via the internet, where news,
articles, information are posted to the list, and emailed instantly to a
world-wide membership of about 2,000 people.

"(The PD) listserv has been an increased resource for anyone with PD", she
said.

"It was essential for me - when I first found it, it was a miracle. (The
PD) listserv made a huge difference because it dispelled a lot of the
myths, even in the medical community."

Among the myths - that it was an old person's disease, and that those who
have it go into tremors. Paterson was just 37 when she believes it began to
affect her, and she has never has a tremor, although even on her best days
she still 'twitches' (dyskinesia) almost non-stop.

"When medications work well, I'm okay, except for 'twitching'. When my meds
go 'off', the full blown (symptoms of) PD are visible. I can't walk really
- I'm almost paralyzed".

The problems that lead to PD begin with deterioration of cells in the brain
that produce dopamine, a chemical which helps control a person's movements.
Drugs can assist the patient for some time,  but eventually the absence of
the chemical takes its toll.

"It's like being a prisoner stuck in a body that won't respond", said
Paterson.

PD is described as a 'designer disease', meaning no two people have it in
exactly the same way and it affects each person differently.

"The most common symptom is a tremor, and I've never had one", said Paterson.

The major symptoms for those include tremors, muscle rigidity and slowness,
and balance problems.

"If we all lived long enough, we would all have PD, because of the general
degradation of the brain", said Paterson, adding that by the time someone
is diagnosed with PD about 80% of the dopamine-producing cells have already
been lost.

The disease affects a slightly greater number of men than women, and the
cause is generally unknown, but Paterson said she believes her symptoms may
be related to exposure to chemical pesticides while she was living in
(Bermuda).

Nonetheless, Paterson said this is the best time - if there is such a thing
- to have PD, because of the advances being made in treatment and even the
potential for a cure. The disease has also received some high-profile
recently, especially through Canadian-born actor Michael J. Fox, who
retired from his acting career to devote himself to promoting Parkinson's
research.

"The (state of) research is phenomenal, I think they're on the verge of
something big. They're actually using the word 'cure', which they never
would have 13 years ago", said Paterson.

Computer Help

When Paterson began using email and the internet to learn more about
Parkinson's, (the PD) listserv was the only one on the net, but a number of
other sites and lists have 'spun off' since, for the medical community,
patients, and spouses and caregivers. One place to go is Paterson's website
(www.geocities.com/janet313/), which is a stopping point for anyone looking
for stories about those who have the disease and those looking for
inspiration.

"My site is considered a site on its own. I'm really thrilled that people
are finding it useful", said Paterson. "The on-line Parkinson's world is
eight hours out of my day."

The web should be humming this weekend, as a live on-line telethon will
take place May 4-6 at the site www.travelswithparkinsons.org, where an
unprecedented 30-hour telethon will raise money for the cause. The host is
Leonard 'Chy' Casavant, who has his own one-hour weekly talk show broadcast
over the internet, where "the elite of the Parkinson's world have been on"
the Paterson-designed site.

"Who would have thought talk radio would head in this direction!" quipped
Paterson.

Born in Toronto, Paterson was an interior designer and worked in Bermuda
for 16 years. It was there where she was diagnosed with PD, but because a
lack of neurologists on that Caribbean island, she had to travel to
Montreal to be finally diagnosed in 1988.

"I stuggled with things for three years before I got diagnosed", she said.
"The first symptom was my left pinkie hurt when I tried to type".

It got more noticeable when Paterson said she tried to follow a Jane Fonda
workout tape and could not physically do it.

Paterson worked until 1997, when she decided to leave Bermuda and return to
Canada. Until she moved back, she had never met another person with
Parkinson's disease - whom she calls a 'Parkinsonian' or a 'Parky'.

The hardest part, said Paterson, is planning and taking advantage of the
times when the medication makes her capable of doing physical tasks or
chores. She describes her 'on time' as erratic and unpredictable and lasts
only between 90 minutes and two hours, so living with the disease means
adjusting the way she lives her life, and spending plenty of time checking
her watch.

Paterson, who is now on Ontario Disability Income Support, said perhaps the
hardest part is learning to accept help from others. She is in the process
of moving from her Mill Street apartment to subsidized accommodation in the
Town and Country Apartments, and needs volunteer drivers to help make some
of her appointments. And she is in the process of applying for Ontario
Disability Employment Support so she can turn the skills she has learned as
a web-spinner into something of a business.

She said that move will help her in terms of convenience and ease of
getting around - her current location has only stairs, and the apartment
building has elevators.

"The stairs were a mistake, in retrospect", she said.

Paterson, whose sister has lived here for 25 years, moved to Almonte two
years ago.

"I really like Almonte. I couldn't live in a big city anymore - too ugly!",
said Paterson. "I like the small scale. I like the friendliness."


janet paterson, an akinetic rigid subtype, albeit perky, parky
PD: 54/41/37 CD: 54/44/43 TEL: 613 256 8340 EMAIL: [log in to unmask]
"a new voice" home page: http://www.geocities.com/janet313/     .
"new voice news" latest posts: http://groups.yahoo.com/group/nvnNET/     .

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