Chapter 11 Establishing PFP Classes
After RAGBRAI 2009 I continued to enjoy excellent health while riding nearly every day at the high cadence pace of 80-90 rpm, either outdoors or indoors on my trainer. Iowa had put a lot of energy in my storage tank. My hand tremor and all my other Parkinson’s symptoms were seldom apparent. I realized cycling would be a part of the rest of my life. How fortunate to be able to do something I loved to make me and well!
When others heard about my experience, I received a request in December 2009 from a local hospital asking me to help set up a tandem cycling class for Parkinson’s patients based on Jay Alberts’ protocols. I was delighted. People added resources from all quarters: R+E Cycles made four custom tandems at cost, paid for by generous donors who had connections to cycling or Parkinson’s or both; Jay Alberts sent the extras; the American Parkinson Disease Association became the conduit for donations; and a group of wonderful women quickly became the organizing force for the new program. Everyone gained inspiration and energy from the four selected participants who couldn’t wait to begin. I hoped and prayed some of these People with Parkinson’s would have experiences even partly similar to mine.
I had been given a huge gift, a means to be proactive about my disease, which I hoped would be shared by other PwPs.
Doug and I had to leave for RAGBRAI 2010 before the first eight-week-long tandem cycling class for PD patients began, but we kept in close touch with the coordinator while we were gone. My heart was at the opening class even though my body was in Iowa. Fabulous volunteers called “captains” powered the tandems on front, while the four PwPs ranged from those who were farily healthy to a woman who had fout Deep Brain Stimulation (DBS) surgeries (electrodes were implanted in her brain to help her function more normally) and had never ridden a bike Our goal was to have them riding at 80-90 rpm by the end of the second week. All of them were riding at or above the target goal on the first day. Our team leader reported how emotional and joyful the PwPs felt, celebrating that, with this cycling class, they might experience some relief from their PD symptoms.
The hospital eagerly awaited results, hoping to bolster their efforts to find resources to sustain the project. The most important issue from the hospital’s perspective was whether or not Parkinson’s symptoms actually would be alleviated through the cycling, thereby justifying their investment. The next issue was determining how forced-exercise cycling would affect the PwPs’ cognition and emotional health. (“Forced exercise” refers to the cadence, or revolutions per minute, of 80-90 rpm. An average PwP normally cycles at 55-60 rpm.).
Initial reports indicated the class was making a profound difference 1n the lives of the PwPs. Although many questions remained, the PwPs had a great feeling of finally being able to do something proactive about a disease that, prior to this could only be addressed only through medications, and that could be put on o hold only now and then through medications.
Even after the first week, the organizers organizers from the hospital and the volunteers made extensive notes on how to replicate the program in other venues. Getting the class off the ground was one thing, Sustaining the program, and seeing to what extent it worked with patients at all levels of the disease, would be huge questions to address. There was so much to learn before we considered sharing and “how to” with the rest of the world.
However, as word of the success of Jay Alberts’ program spread, people from all over the United States contacted him for help in setting up their own tandem programs. He often referred them to me, so what had begun as a hospital class became a pilot for what might be a national dissemination system for PFP programs.
At that point we had no licensing agreement, and therefore nothing more than goodwill binding people to the main protocols of the program as identified by Dr. Alberts: maintain 80 to 90 rpm (the cadence range), ensure that patients wear heart-rate monitors, and make sure they stay within 60 to 85 percent of their maximum heart rate. I returned from RAGBRAI 2010, eager to see the class in action and experience for myself the many successes I had heard about; unfortunately, the class I saw was not the class I expected. PwPs were not using heart rate monitors, and some captains had their patients spinning at up to 120 rpm. I asked questions and was told to leave. This was far from the homecoming I had expected.
We had nowhere to go but up. That would take a while.