Getting the word out on Parkinson’s Disease

Sally Smith | Aug 07, 2019

She’s well-spoken, knowledgeable and elegant.

Many years ago, in a previous life, while raising her family Susan Mactaggart worked in administration with the Art Gallery of Ontario helping organize some of the smaller exhibitions, and eventually ending up as co-ordinator of the Gallery volunteers.

Today, at 75, her 12-week old Cairn Terrier, Morgan, keeps her busy, as does her volunteer work around Green Bay on Bob’s Lake; she gardens, looks after the old 1928 family homestead, walks, and boxes.

She also has Parkinson’s Disease.

This is not something she hides. “What you see is what you get,” she says with a huge smile and a straight-on look. “Age sneaks up on you. At 70, you start to think about how much track you have left,” she reflects, “and the advent of Parkinson’s has made me think even more.”

So although Parkinson’s is a dominant part of her life, she still does everything she wants — admittedly…a bit slower. She left Toronto 20 years ago, her heart tugging her back to her roots at the country property; eight years ago, when she was diagnosed with Parkinson’s, it dumbfounded her. Within 10 minutes, what she thought might have been a pinched nerve in her left hand, and a slight drag with her left foot, became a Parkinson’s diagnosis. She says matter-of-factly “my brain was telling me what to do and it wasn’t working. That’s about the essence of Parkinson’s.”

Susan takes time now to reflect on her present life and what the future holds. She has a few things to say…

The first is there should be a Parkinson’s 101 course for General Practitioners. “So many people are being diagnosed now…it’s almost an epidemic.“ Susan spent a while going back and forth to her GP before seeing a neurologist who diagnosed her within 10 short minutes.

A second is that living in the country is “probably the best antidote for Parkinson’s — peace, calm, lack of tension. Tension is the worst enemy for Parkinson’s” she adds, describing some of her daily activities like gardening, piling wood, bringing it in. “It’s a healthy lifestyle, not sedentary.”

She, like most other people with Parkinson’s, went back in her life scanning events, circumstances to see if she could find what precipitated the disease. In certain respects she led a stressful life but can’t put her finger on any one thing. Most Parkinson people say the same, and doctors don’t have a definitive cause either.

Susan doesn’t hide her Parkinson’s. “I’ve never kept it a secret.

A third is “it’s a fact of life, not unlike cancer. It’s not catching. When I tell people I have Parkinson’s and they immediately say ‘Oh, my goodness!’, I tell them it’s alright, quite alright.”

And Susan goes on…

For her, tiredness is the main manifestation of Parkinson’s. Always a doer she says she used to do ten times what she does now. So “it’s most important to recognize what you have, and mentally come to terms with it. There’s only so much I can do during the day even though my heart wants to do a lot of other things. That might mean at the end of a very busy day I won’t be able to go out for dinner because I’m just tired right out.”

Susan takes a combination of L-Dopa and Carbidopa, a fairly routine mixture, two pills five times a day. Sometimes, she says, it’s awkward pulling out a pill box, “being the odd (wo)man out.”

And she boxes twice a week. Exercise is becoming a turning point for people with Parkinson’s. It opens up small movements, it helps focus, stability and balance, it works on voice (at boxing they yell), and it grows a community of friends.

Saying that, Susan has another thought. As people with Parkinson’s grow older, they’re going to need help — from the extreme of total care to perhaps just someone to run errands. Here is a place for community service groups, she suggests, a way to jump in and help out.

And keep your friends and family close. “I talk to people every day; I have a wonderful lady who comes in and helps me around the house.”

So those are her thoughts about Parkinson’s disease and how to manage. She’s a local hero. There are lots of them around…we just don’t see, or notice them often.

On September 7, come out for the Parkinson SuperWalk at Conlon Farm in Perth; those with Parkinson’s (and their families) are walking as well as many caregivers, friends and supporters. Funds raised go to Parkinson’s Canada. For information, go to http://donate.parkinson.ca/lanarknorthleeds. Come and join the fight against Parkinson’s and get the word out.

“The more it’s talked about in the community, the less people make of it. There’s nothing to be afraid of. We are going to conquer this.”