by Deborah Lang
April is Parkinson's Awareness month and Parkinson Society of British Columbia has asked people with Parkinson’s to tell their stories to increase the awareness in the community. Today more than 15,000 British Colombians have been diagnosed with Parkinson’s disease. This disease is more than a tremor, it can impact every function of the human body, i.e. walking, vision, speaking, hearing, digestion, sleeping, and mental functions (anxiety and depression).
Ten years ago, when I was setting my personal retirement goals, I thought that I would be traveling the world, fit as a fiddle, with tons of energy to climb, ski, or bike all those mountains that had been calling my name ever since I can remember. Sports has always been an important part of my life. I met my husband in Smithers, BC where I was a Ski Patrol at Hudson Bay Mountain and downhill skiing has been a big part of our lives ever since.
Seven years ago, Parkinson’s entered my life and now our world is very different. I stayed very active and very FIT until August of 2022 and then COVID-19 hit me and my deterioration has been RAPID ever since. Parkinson's was now impacting the quality of life for me and my husband, and I knew it was time for action.
I am now struggling with dyskinesia (involuntary movements of the body) and off times (times when my medication stops working) which results in anxiety and dystonia (involuntary painful contraction of muscles). Dyskinesia and dystonia are side effects of taking Parkinson's medications.
What does dystonia look like for me - my toes in my left foot curl under and it is very painful and I find it difficult to walk - and my fingers in my left hand curl into a painful claw. This has resulted in challenges for me to do most of my favorite activities when my medication wears off (hiking, swimming, walking).
I must stay physically fit to battle this disease so I need to find activities that I can still do. I was finding walking very challenging but biking and pickleball I managed to do even when I was dyskinetic or when my medication wore off. I also wanted a sport that both my husband and I could do together. I wondered if downhill skiing might work because of the mechanics of the sport - you keep your legs apart and slide down the hill.
In March of 2023 - I joined the Canadian Adaptive Snow-Sports (CADS) and the Baldy Blue Jays Adaptive Snow Program. I reached out to Louise, the administrator of the Baldy Blue Jays Adaptive Snow Program who talked to me about my fears and how the instructor would help me overcome these challenges.
On our way up to the Mount Baldy ski hill for my first lesson I was very anxious and told my husband if it was foggy I was not going! My husband was familiar with dealing with my Parkinson's induced anxiety and so he did not argue with me - he just kept driving.
My husband and I met Ralph, my ski instructor who took me out for a two-hour lesson and was very encouraging and patient. The powder snow was deep and I fell many times. Ralph was right there beside me and patiently waited for me to ask for help.
In my second lesson, I could feel my confidence building. Ralph gave me lots of tips about what to do about my left leg which kept wandering. At the end of the lesson, my husband and I were both very impressed and looked forward to the next lesson.
On my third lesson Nancy, another Baldy Blue Jays Adaptive Snow Program instructor came with us and she was very encouraging. I told Ralph and Nancy how my goal was to ski a black diamond run in my last lesson.
On my fourth lesson, Ralph supported me to ski in snow conditions that were not ideal (windblown and crusty). I told Ralph that the snow conditions were making me a little anxious, and I did not think I would ski a black diamond run.
And on my last two runs, with encouragement from Ralph, I had the confidence to ski down two black diamond runs.
Thank you, Mount Baldy for sponsoring the Baldy Blue Jays Adaptive Snow Program - I hope more people with Parkinson's register. This sport is easier to do than walking!
And thank you, Ralph for your patience, skill, and encouragement - this experience has enriched the quality of my life.
I am very happy that I can do a sport that my husband and I enjoy - regardless of the challenges with my Parkinson's.
Watch Deborah Lang skiing in the Baldy Blue Jays Adaptive Snow Program.