After the provision of care, there is the community

Jean-Philippe Giroux

IJL – Réseau.Press – The Nova Scotia Courier

Special report in four articles – fourth part

Parkinson Society Nova Scotia was founded in 2018 to better support people living with Parkinson’s.

Ken Saunders, executive secretary of the society, says he has lived with Parkinson’s for 15 years, and information about the condition was not easily accessible at the time when he was looking for answers.

He and Jack Waller, president of the company, got together with three other couples all in the same situation to accumulate as much information as possible, especially on the Internet, in order to share it with others who live with Parkinson’s.

The information was then synthesized and presented in a simpler and digestible manner. The company also removed the “m-word” from their vocabulary to eliminate the prejudice surrounding Parkinson’s, “since we don’t talk about Alzheimer’s disease, we don’t talk about ALS disease,” according to Mr. Waller.

“Then when Parkinson Canada [à l’époque] closed all its programssays Mr. Saundersits support groups and everything else, we felt the need to expand to support groups and go further than what we were doing, by being satisfied with a simple exchange of information.

“There was a proven need,” continues Mr. Waller. The first support groups were offered at Dartmouth. Subsequently, the company moved to Halifax, Truro and Cape Breton, “gradually spreading our wings.”

Usually, a special guest contributes to the group discussion. Sometimes this is a physiotherapist, a dental hygienist or another specialist, with the aim of making participants aware of the challenges faced by families.

Beyond facilitating information, the members wanted to “allow people not to be alone”, specifies the president. The latter and Mr. Saunders invite people to send them a message by email or by telephone. They listen to comfort them with their concerns and answer their questions.

The company sometimes makes visits to homes and homes to create a better connection with families and people living with Parkinson’s. This is also to ensure that people don’t have to wait once a month, during support groups, to talk to someone.

“The most important thing is support and education,” says Saunders, which builds community and supports others going through the same thing.

Last April, for Parkinson’s Awareness Month, the company organized a marathon at Point Pleasant Park to show solidarity with those affected by Parkinson’s and raise awareness.

Another such marathon is planned this year, for people in the Halifax area. In Cape Breton, we are preparing a “SuperWalk”, a fundraiser taking place across the country, like the Terry Fox Walk, led by Parkinson Canada. It raised a total of $1,359,500 this year.