Janet,

What a wonderful article and a great place to express our appreciation  for
the
wonderful  help and information forum that you  have  made available to all
of us!

Thank you so much, Rob


----- Original Message -----
From: janet paterson <[log in to unmask]>
To: <[log in to unmask]>
Sent: Saturday, May 05, 2001 2:32 PM
Subject: NEWS: Spreading the word about Parkinson's disease


> 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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