Musings on a life with Parkinson's Disease
October 21, 2017
Lois Leslie (left) and Marg de Grace (right)
Diagnosis: What the ????
I was diagnosed with Parkinson’s in 1993 at the Movement Disorders Clinic at UBC. I was 46, and had two little girls (Megan and Kathleen), a dog (Raven), and my husband (Allan).
First line of defense: shoot the messenger
“There was no Parkinson’s in my family,” I protested. For a long time, I could not accept any part of this diagnosis. There had to be a mistake. Maybe the residents and fellows were reading the wrong file. Maybe the PET was malfunctioning. Could the neurologists be wrong? I went through the research; it was Parkinson’s disease. I accepted the expert’s opinion.
Stress is a fierce opponent
November 1996, our house burned to the ground. Watching it burn, I tried to anchor in my memories, photos, paintings – the record of our lives that was burning to the ground. Our friends and neighbours put a protective circle of care around us, and we are so grateful. We had moments of grieving, but also moments of comfort and laughter. We went through it all – rescue, response, and recovery. To make matters worse, shortly after the fire, Kathleen had a burst appendix. Allan and I took turns sleeping at the hospital. Megan bravely stayed with our friends.
The major other stressors from 1993 to 2009 were work-related. I was an Emergency Planning Coordinator for Vancouver General Hospital.
1996 LA earthquake
2000 Y2K world-wide computer crisis
2001 9/11 terror attack in NYC
2003 SARS epidemic
The Pity City club
Self-pity is not sustainable, although there is plenty to go around. If my tears were unsalted, I could water my garden with them. Many PD symptoms are disturbingly apparent, and are frequently exhausting. I sometimes have rolling shoulders, jerking arms, shaking head, tremor in my hands and arms, restless legs, and freezing. Also, I sometimes feel anxious and depressed, distracted and withdrawn, angry, critical, and bitter.
The bad act
I still feel the need to minimize the effects that PD has on my life. Somehow, I blame myself for my slowly disappearing normalcy. My symptoms are now obvious. I could minimize them for a time - hide my hands under my desk, pretending my tremors were just temporary nerves. Then I had panic attacks, dry mouth, and throat spasms in which I would start to talk, then have to stop and wait for my throat to loosen. At work, these were harder to hide. I often couldn’t finish meetings or visits. Telephone conversations were the least threatening. My friends and colleagues were not deceived for long, though.
Finally, I admitted that I was dropping too many balls at home and work, and took the big step to retirement. With that came a whole lot of moments of self-reckoning.
No Bargaining with PD
I set up a program for myself, to build self-esteem and maintain my muscles and flexibility. The program consisted of:
exercise: body and mind, walking for aerobics
gardening: for self-esteem, and building muscles
pilates: for core strength
recreation: travels, fishing, visits to Stuart Lake
intellectual: reading, movies, theatre, opera, dance
Musings on compassion
It is remarkable how compassionate people can be. I once was finding a seat in a crowded downtown restaurant, and my arm gave a powerful hit in the ribs of the guy beside me. I thought he was going to hit me back. He couldn’t believe how such a little person could hit so hard, and gave me a hug instead.
In airlines, I’ve been bumped up to first class. We are routinely pre-boarded. I am offered seats in movie theatres, the opera, and ballet. I seldom get through a store line-up without an offer to carry my parcels.
One afternoon, I was crossing on the sea bus, and a young man insisted that I take his arm until we got up the escalator, then said “have a lovely afternoon,” and carried on with his own agenda. Friends pick me up for coffee, and to go to reading group. My community care and medical care teams keep my spirits up with the latest research into PD and current practice.
My current life
In the past year, the changes have been coming faster. I can only do a limited set of exercises. My balance is unreliable, and I am more frail than before. The Parkinson’s drugs are still helpful, but I need to take them more frequently. My condition is made more complicated by some other chronic diseases (arthritis and COPD). As a consequence, I am more housebound, and in need of more assistance than before.
I have a lot of support from my family, and from community health services. My daughter says that we have a lot of tears and sorrow, but also tenderness and compassion. I say that we still have fun, despite the PD.
Marg de Grace lived with Parkinson's for 25 years, and passed away on March 20, 2018. She was a dear friend to Lois Leslie and Paul Gully, who completed a bicycle ride from Europe through to New Zealand in support and honour of Marg. Read about their journey here.
Marg's daughter, Kathleen Hepburn, produced the film Never Steady, Never Still, based on her family's experiences through Marg's journey with Parkinson's. The film is available for download on iTunes and Google Play.