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.

6 Responses to “It’s your move: Self-managing Parkinson’s”

  1. 1 Merv J. Cormier February 21, 2013 at 5:30 pm

    Like in my situation you have slow progressing Parkinson’s you have been diagnosed earlier than I was and like you I exercise a lot, being a retired Physical Education teacher, I know the value of exercise. I would enjoy corresponding with you and talking about other exercises or anything to improve our chances of improving our overall health. after nine years of living with Parkinson’s I find myself worrying about when my sitution might get worse not having anyone to compare my case with, but then we are all individual cases progressing at our own pace. My # 1 hobby these days is birdwatching but mostly in the spring and fall, It certainly helps my mood when migration starts and brings many sounds and colors into my nature excursions.

  2. 2 Parkinson Society Canada February 22, 2013 at 11:11 am

    Hi Merv, thank you for your comment. Yes, there is tremendous value to exercise. We will forward your request to Alice Templin and get back to you.

  3. 3 Casey Huisman February 22, 2013 at 9:12 pm

    I also have slow progressing (or is that regressing?) Parkinson’s, having been diagnosed about 6 1/2 years ago at age 55. At the suggestion of my unbelievably supportive wife I obtained a few laying hens which provide us with some eggs but more importantly they force me outside at least once daily, no matter what the weather. Once I’m outside I enjoy being there; I often walk for 30 minutes or so. In the winter it feels good to feel the fresh wind and cold on my face as well as the occasional sunray. It’s all good. I try not to worry a lot about what might come down the pike, I think just being busy and active slows the process down.

  4. 4 Paul Mazerolle February 23, 2013 at 12:27 pm

    You are a very positive and inspiring person. I was diagnosed in 2001 and was able to continue working until 2008.
    I was quite active before and after I stopped working but the Parkinson kept on progressing . My main defense is medication. That is quite a challenge. Getting the right pills and then finding the best time to take them and trying to determine why they sometimes don`t kick in. It is a full time job just managing the medication in order to maximize the benefits of taking them.
    I agree fully with everything you mention on self managing your Parkinson`s. You have to take charge because even with a team working together to help you maintain a quality of life only you feel what you feel, be it positive or negative. No one can feel what you feel or how you feel. in the end we are all in this together yet we are alone. In our mind, thoughts and spirituality we are beyond a slow moving, stiff and awkward body.

  5. 5 Parkinson Society Canada February 25, 2013 at 12:52 pm

    Thanks for sharing, Casey. What a novel way to keep active!

  6. 6 Parkinson Society Canada February 25, 2013 at 12:59 pm

    Hi Paul, Thank you for sharing what you do to manage your Parkinon’s.

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All material related to Parkinson's disease contained in Parkinson Post is solely for the information of the reader. It should not be used for treatment purposes. Specific articles reflect the opinion of the writer and are not necessarily the opinion of PSC.

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