Courage, Tenacity and Love Meet Parkinson's Disease
Caring Partners September 2, 2018
When we married 48 years ago and pledged "for better or for worse", Doug and I were definitely thinking more about the better than the worse. For the most part, better is what we got. We retired in 2003 and 2004 expecting to enjoy another few decades of excellent health. Expectations have a way of flying out the window. Ours did.
For a few years we traveled with our dogs in a little camper van for several months while fly-fishing and visiting old friends. In 2007 I became increasingly aware of my hand shaking as I drove. I sat on it or placed it low on the wheel to hide the tremors. I ignored it. Whenever my arm wasn’t engaged, it shook, at times with alarming frenzy. In Yellowstone as I became more obviously affected, I couldn’t deny the increased tremor, general weakness and sense of confusion I felt. I couldn’t hide my brain under my hamstrings.
In early 2008 I was diagnosed with Parkinson's disease. We thought the better was behind us and prepared for the worse. Quickly we realized we had choices; we made them together. Instead of planning for nursing homes, we decided to plan for life. Instead of redefining ourselves as caregiver and patient, we reaffirmed our relationship as partners, recognizing there would be changes along the way.
Our new plan for life included a redefined and accelerated bucket list. Through Pedaling for Parkinson's (PFP) we realized many of my PD symptoms might be helped by adopting an accelerated cycling routine of 80-90 rpm for three hours each week. With Doug’s support I took to the bike like a crazy woman and nearly eliminated my symptoms, or at least slowed them considerably. With him leading the way, we cycled with the Pedaling for Parkinson's group across Iowa over and over: 2009, 2010 and 2012-2015. When we were asked to join a group of MS and PD patients climbing Mount Kilimanjaro in 2011, Doug defined our training regimen and kept us to it. As we started on the final big climb to the summit on a bitterly cold night, he told me, "I know you can do this". And I did.
Although we had never been mountain climbers, Kilimanjaro whetted our altitude appetites. The next spring we joined a group trekking to Annapurna Base Camp in Nepal, followed in 2013 by hiking the Inca Trail to Machu Picchu in Peru, both at Doug’s suggestion. We floated the Grand Canyon and trekked Mont Blanc.
Caring does not mean pushing ourselves to extremes while we are still able. We realize the difference Pedaling for Parkinson's has made in our lives and are determined to share that opportunity with other Parkinson's patients around the world.
Doug is the volunteer lawyer for PFP. Working with the founder of the program, neuroscientist Dr. Jay Alberts of the Cleveland Clinic, Doug created a License Agreement that is being used in YMCAs and other PFP locations. The License Agreement outlines the program protocols and ensures the safety of people who are participating in the pedaling program. Although the Agreement is free, it is a legally binding document. The name Pedaling For Parkinson’s and logo are trademarked.
The cycling class instructors already know how to teach cycling classes but they need to know about Parkinson’s, so we arrange for them to be trained by the people with Parkinson’s. Everyone has ownership for the program, which keeps the costs very low and the personal investments high. Although people call me for advice on pedaling and dealing with Parkinson's, I always turn to Doug for his wisdom and encouragement as we take step after step along this unexpected path. He recognizes that my efforts with PFP and other Parkinson’s patients have become part of my therapy.
Other opportunities continually present themselves and he never steps aside. He is part of the control group for the Michael J Fox PPMI research project, which means that over the course of the research he endures seven spinal taps and endless repetitive cognitive questionnaires. He came with me when I attended meetings in New York for the People with Parkinson's Advisory Council of the Parkinson's Disease Foundation. He joined me for the World Parkinson's Congresses in Montréal and Portland, immersing himself in the science of Parkinson's disease, asking insightful questions and drawing thoughtful conclusions. Doug never just comes along. He participates fully.
Little, quiet things matter. I come down in the morning and the coffee pot is cleaned and ready to go. He vacuums the house. He's becoming a better cook than I. The cupboard is always full. He plays with the grandchildren, especially when I am too tired and need a nap. He listens but is not interested in hearing me wallow. I am a fortunate woman.
The worse we expected with this diagnosis has in many ways made our lives better. Without Doug’s support and his high expectations, I would not have had the courage or tenacity to participate in these adventures, nor would I have had the confidence to reach out to other Parkinson's patients to share my experiences. His love makes all the difference.