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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/ . > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn