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 (PD). We thought the better was behind us and prepared for the worse. Gradually we realized we had choices. We made them together. Instead of planning for nursing homes, we decided to plan adventures and challenges. Instead of redefining ourselves as caregiver and patient, we reaffirmed our relationship as partners, recognizing there would be changes along the way.
This soon led to a redefined and accelerated bucket list. Through Pedaling for Parkinson's (PFP) we realized many of my PD symptoms might be helped by an accelerated cycling routine of 80-90 rpm for three hours each week. I took to the bike like a crazy woman and greatly suppressed my PD 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 decided 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 in 2017 and trekked the Mont Blanc region in 2018.
We realize the difference that the Pedaling for Parkinson's program has made in our lives and are determined to spread that opportunity to other Parkinson's patients. Doug and his law firm are pro bono lawyers for PFP. Working with the founder of the program, neuroscientist Dr. Jay Alberts of the Cleveland Clinic, Doug created a License Agreement to enable YMCAs and other sports facilities with stationary bikes to run PFP programs. The facility licenses the use of the Pedaling For Parkinson’s trademark and name and agrees to follow the PFP program protocols and meet participant safety requirements. PFP does not charge any fee for the License Agreement. As of mid-2018, there are more than 100 PFP programs licensed around the United States offering PFP cycling programs to people with PD.
Successful PFP cycling programs are teaching partnerships frequently started by someone who champions the program at a facility. The cycling instructors teach safe cycling and encourage the people with Parkinson’s to achieve the PFP cycling goals. The people with Parkinson’s teach the instructors about living with this disease. In addition to receiving the physical and cognitive benefits of cycling, the PFP group becomes a support group on wheels as the participants and staff realize not only the benefits of the PFP cycling regimen but also of being in a social group that shares time and effort together. All class members become “owners” of each local PFP program. In addition, the cost of joining the program stays low, which encourages the medical community to prescribe exercise as a type of active therapy.
Although people call me for advice on pedaling and dealing with Parkinson's, I 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 two research projects hoping to find biomarkers for PD, which so far has entailed 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 pitches in on household chores. He's becoming a better cook than I. 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 or the confidence to reach out to other Parkinson's patients to share our experiences. His love makes all the difference.