It’s your move: Self-managing Parkinson’s

Alice Templin cross-country skiing in the Gatineau Hills
Alice Templin cross-country skiing in the Gatineau Hills

When Alice Templin’s voice became weaker and slightly raspy due to Parkinson’s, two options sprang to her mind. “I could go for speech therapy or perhaps join a choir.” Alice chose the choir, after discussing it with her neurologist. “We thought, why not try the choir first. It would be fun. It’s a non-medical approach. And it might achieve my purposes for the time being.”

Living with a chronic neurological condition like Parkinson’s means having to make many daily decisions about self-care. The choices may change over time, but at the centre of it all is discovering what works best for you.

Alice adopted her proactive approach to Parkinson’s soon after her diagnosis in 2000. She was aware that stress can aggravate symptoms, so she began thinking about ways to manage day-to-day activity. After discussing it with her husband, she decided against returning to full-time work. Following many years working as a physiotherapist, Alice was in the midst of training for a new career as an English as a Second Language (ESL) teacher, and began volunteering while she completed the program.

Twelve years later, Alice still volunteers in ESL and occasionally supply teaches to maintain her certification. She notes, “I controlled my workload yet maintained that sense of contribution and self-worth by being involved in something outside the Parkinson’s community. I didn’t want my whole life to be about Parkinson’s.”

For Alice, self-management in Parkinson’s means that, “as a person with Parkinson’s, you are an active part of the care team, possibly even the team leader, because you are more in tune with your symptoms and the changes that emerge.”

Alice counts her neurologist, the clinic nurse, her family doctor, a physiotherapist and massage therapist, as part of her team.

“Some team members will come and go depending on the situation but they are all there for me when I need to call on them,” she says. “The Parkinson Society is also part of my team, as are my husband, my family and friends.”

Alice believes that a little bit of risk taking can also be helpful. In 2010, she and a friend hiked the 800 kilometre Camino de Santiago in Spain, 20 kilometres a day, for 40 days and raised over $13,000 for Parkinson Society Ottawa programs and services.

“I didn’t think I could do that much walking but I did it and it was wonderful.” She recalls.

Today, her less hectic pace includes regular walks with a friend, attendance at an exercise class for able-bodied people, cross-country skiing and snowshoeing in winter and cycling in summer.

With Parkinson’s as a part of her life, Alice maintains a vital connection to the Parkinson community as a regular volunteer and support group member. She also sits on two of the committees designing the program for World Parkinson Congress 2013 and finds the experience to be “both humbling and exciting.”

On the topic of how self-management makes a difference, Alice says, “It gives me a certain amount of control in what is happening to my life. It gives me a sense that I’m doing the best I can. It also makes me realize that I still have a very good life.”

Alice’s tips for self-managing Parkinson’s

  • Know yourself.
  • Learn about Parkinson’s.
  • Take charge.
  • Build and engage your team.
  • Take risks; stretch yourself.
  • Stay active.
  • Connect with the Parkinson’s community.
  • Keep a balance in life.