A couple of local women have made it their mission to spread awareness and offer support for those living with Parkinson’s Disease in rural areas.
Pat Evans and Gayle Truman both have Parkinson’s. Pat was diagnosed over 10 years ago in 2006, and Gayle has been living with the disease since 2014. While both women say they are lucky, because their symptoms have remained manageable, they have witnessed gaps in the healthcare system when it comes to the treatment and management of Parkinson’s.
“We are still in the dark ages when it comes to neurological disorders,” Pat says.
While there is no cure for Parkinson’s Disease, it is not fatal. It is a chronic and progressive movement disorder, meaning that the symptoms continue and worsen over time. It is caused by the death of brain cells that produce dopamine, which is the chemical that carries signals between the nerves and the brain. With a lack of dopamine, the person can suffer from a number of different symptoms, including tremors, slowed movement, rigid posture, impaired posture and balance, sleep disturbances, and depression. “Every case is different,” Pat says. “The only thing you can count on is that it will get worse.”
The symptoms of Parkinson’s can be managed with specific drugs and physiotherapy. The problem is that there are not a lot of movement disorder-specific doctors out there. Gayle says her neurologist retired in February and she will have to wait months to get a new one. There are five other people in a support group that she goes to in Perth that are in the same situation. While Gayle’s symptoms are manageable right now, she can’t imagine what it would be like for someone suffering with severe symptoms and unable to see someone for months. “It’s really important to see a specialist,” she says. “For someone who may not be able to move, not having a doctor for that long is not good.”
Pat says there is also a risk that people living in rural areas will become isolated. Help and support are not readily available in the country and people often don’t want to talk about their disease for fear they will be judged, or treated differently. “People should be accommodated,” Pat says. “A lot of people with Parkinson’s are still very capable.”
Pat is convinced that building a sense of community, and talking about the struggles that come with having Parkinson’s, are extremely important when it comes to living a full life with the disease. “People who have Parkinson’s lives are different,” she says. “Hope is very important. You can be successful with hope.”
On September 9, there will be the first ever Parkinson SuperWalk Lanark North Leeds in Perth. Parkinson SuperWalk is the largest fundraising activity for Parkinson Canada and has over 68 communities participating. All money raised goes towards education, providing support services, funding research, and advocating on behalf of people with Parkinson’s and their families. The walk is not only a fundraiser, but also an event to inspire and bring together those who are affected by the disease.
Parkinson Canada also runs two monthly support groups in the area, one in Kemptville and the other in Perth. Pat and Gayle have both found attending a support group extremely helpful and encourage anyone who has been diagnosed with Parkinson’s to give it a try. “People are afraid, but it is important to talk about it,” Pat says.
For more information about the support groups call Margaux Wolfe at 613-722-9238 ext. 3425 or email her at margaux.wolfe@parkinson.ca. To register, or donate to the Parkinson SuperWalk, visit donate.parkinson.ca/Lanarknorthleeds.