An interview with Leslie Davidson on Advocacy on September 20, 2023 by George Ackerman, Ph.D, J.D.
Please tell me a little about your background.
I am a 72-year-old, retired Elementary school teacher. Once upon a time i was both a preacher’s kid and an army brat, raised in the middle of four children. I met my husband, a teacher -librarian, in the fall of 1974 and we taught together for a year, then bought a new VW Westphalia and spent 15 months travelling throughout Europe and North Africa. On our return to Canada, we taught in northern British Columbia, Coke on the west coast, near Vancouver and for 35 years in a small town bisected by two beautiful rivers. We raised two bright, capable daughters outdoors. We all skied downhill and Nordic, spent hours in our red canoe and kayaks, biked, climbed, hiked, and swam.
In 2011 I was diagnosed with Parkinson’s disease and my husband with dementia. When he started hallucinating small animals and children and seeing me as an imposter who looked like Leslie, but wasn’t Leslie, he was determined to have Lewy body dementia. We moved to Revelstoke BC to be near out two daughters, both married now to lovely young men, and each with two children.
Can you tell me more about your advocacy?
My advocacy began with my first piece of writing about Parkinson’s, a spoken word piece called Parkinschtick in 3 minutes. It was a runner-up WPC in Montreal 2013. I wrote for On The Move, an e-magazine written, edited and published entirely by parkies, the brainchild of Dr. Jon Stamford. I also wrote for the BC Retired Teachers’ Association Magazine, three articles for the national newspaper, the Globe and Mail on life with PD? In 2016 a personal essay I wrote for the CBC Canda Writes creative nonfiction competition won first prize and gave me an opportunity to consider writing a book… the end result, three years later was the publication of Dancing in Small spaces: One Couples Journey with Lewy Body Dementia, and Parkinson’s Disease by Brindle and Glass, an imprint of Touchwood Editions.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
Writing is a passion of mine. I write about coping with my DBS, the disease and how it affects mood and movement, and I guess I care very much about others who suffer. I facilitate our very small and casual Parkinson’s support group and regularly speak by phone, FaceTime, messages, and email with 5 women who live elsewhere in BC and are struggling. I feel privileged to be considered a friend and of support. It is my opportunity to pay forward the incredible support I have been given by friends and family since our diagnoses and through the hard, hard leading up to Lincoln’s death and afterward. I am slowly managing.
To take the book to libraries in neighboring communities. On every occasion I meet individuals and couples living with Parkinson’s who express appreciation for having someone articulate what life is now like for them.
What type of goals do individuals with Parkinson’s have when seeing your advocacy?
I am now in my 70’s, living alone, and unable to drive. It takes a lot of time and precious energy to stay focused on my own wellness, and I have interests outside of Parkinson’s. I’m engaged in my grandchildren’s lives. The people I support have found me through word of mouth or through something I have written or by referral from a friend.
I struggle with profound off-episodes and am careful about committing my time when I know I am vulnerable to a crash. I am interviewing tomorrow for a research project at UBC, University of British Columbia and then my sisters are arriving for four days, followed by a good friend. I will have company.
For the next week, and then again for Canadian Thanksgiving. I am so grateful to be socially engaged but often overdo it. I need time for physical exercise time to recover. It is a juggling act. I drop lots of balls. The trick is to pick them up and try again, maybe with deer balls this time.
How can someone reach you?
What advice can you provide for other caregivers?
I was a caregiver and a parkie. Caregiving can take you down faster than Parkinson’s. Most the caregivers are doing the best they can.
What is your future goal for advocacy?
I hope to be able to continue to contribute to helping others deal as positively as possible with their PD. I’d like to do more to rattle the cages in our medical system. I find the access to treatment has declined incredibly since I was first diagnosed in 2011. Once a year for 20 minutes is not adequate for the needs of a patient living with a neurodegenerative disease.
How can others also become advocates for awareness?
Some of us are fundraisers and some of us are not. It’s important that we not decide for each other how best to contribute. I can write and though I do get very nervous, I can stand up in front of a crowd and speak but I hate asking people for money.
In your opinion what is the key to effective advocacy?
I believe that what we think wears grooves in our brains so trying to pay attention to small kindnesses, to beauty in art and nature, and the goodness in people creates grooves that lead to joy.
Also, I give myself permission to feel like garbage, to eat junk, to sit on the sofa and watch hours of Netflix, occasionally. I set a limit… usually just for the day. And I reach out in writing or in words. I find helping someone else helps me. If I can’t honestly count my blessings, then I fake it.
I’m sorry for all of us, especially those without partners or unsupportive partners. It can be lonely, and I think that is the worst.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
Fight the good fight. Reach out. You are not alone. Laughter is amazing medicine.