The one message that rang louder and clearer than any during the July meeting of a Parkinson’s support group in Meaford was this: There is no shame in having Parkinson’s Disease. Moreover, the more open one is about it, the more one is willing to accept the support of others, the more bearable the disease can be.
Whether the support comes from a caregiver, from family and friends, healthcare professionals, community volunteers, persons with Parkinson’s like oneself, or members of a support groups such as those organized by the Parkinson’s Society of Southwestern Ontario (PSSO), persons with Parkinson’s need not feel alone. It is estimated that more than 100,000 Canadians have Parkinson’s. It is the fastest growing neurological disorder in the world. The disease has in the past been associated with persons aged 60-plus, however, more people are now being diagnosed at a younger age.
More than one member of the support group described their initial diagnosis as a default diagnosis. If the tremors that they were experiencing were not in fact an essential tremor (ET) and if Parkinson’s medication helped to ease early symptoms, then the diagnosis was likely Parkinson’s. Symptoms of Parkinson’s can include both motor symptoms such as tremors, rigidity, slow movement, and balance issues, as well as non-motor symptoms such as sleep disorders, problems with body functions, soft speech, fatigue, pain, and changes in mind, mood, and memory. Add to the mix the anxiety stemming from an uncertain future, the impact on people around you particularly those who find themselves in a new role as caregivers, and changes in living arrangements, no doubt the initial diagnosis can be shattering.
A group of five persons with Parkinson’s and two caregivers met with the Parkinson’s Society Southwestern Ontario CEO Shelley Rivard for the July support group meeting. For some, their diagnosis was as recent as two years ago; for others, three to four years; and for one, 15 years. They talked about recent hurdles they have been dealing with, upcoming treatments, and some of the difficult changes they have had to make. Three members talked about their resolve to keep moving, to stick with the exercise regime that they have worked out for themselves, and to continue to review and alter their expectations of themselves and to ask for help when needed.
PSSO offers resources, services, and support to individuals living with Parkinson’s and to their caregivers through counselling programs; support groups and exercise groups; therapy programs such as the music choir and speech programs; online library articles, videos, and educational materials; workshops and conferences; and liaison with researchers, healthcare agencies and government agencies to disseminate up-to-date information.
PSSO has a wealth of information to share, according to Jessica Halls, Manager, Marketing & Communications.
“To access these resources and opportunities, visit www.psso.ca, email us at info@psso.ca or call us at 1-888-851-7376 and we can connect you,” she said. “We also have a number of print resources that we try to also make available online at https://psso.ca/resources/. Otherwise, if people contact our office we’d be happy to send them an information package and any other resources they may be interested in. We offer both a spring and fall conference. These usually take place in larger communities to be able to remain available to surrounding communities. Our fall conference is set for October 28 in London and more information is available at https://psso.ca/events/fall-regional-parkinsons-conference/. Our largest fundraiser of the year is our Walk for Parkinson’s. It’s a fantastic time to bring the community together. We are actually looking for volunteers to help us plan the walk in Owen Sound. The walk information and volunteer information is available at www.walkforpd.ca.”
The Parkinson’s support group meets each third Tuesday of the month at the Meaford United Church, 1:30 – 3 p.m. For more information on the Parkinson’s support group meetings in Meaford and the area, go to psso.ca.
