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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