Retirement is an ideal time to explore volunteering. For survivors like me, this search often starts with a wish to help other survivors. Then it evolves into finding places that let us reinterpret our own harsh experiences with life after stroke. If we’re lucky, we find volunteer work that helps us realize we have developed new areas of expertise and purpose — often without realizing it.
So when I retired four years ago and began looking at volunteer options in the stroke community, I took a cautious approach. Friends much farther along the retirement path had advised: “Plan to make lots of mistakes. The search is really hard, and you won’t find a good fit quickly. Try something, learn from it, then adjust your search and try something else.”
Ruling out volunteer work I knew I’d dislike was easy. With a deep sigh of self-acceptance, I knew retirement wouldn’t change me much, so I could narrow my search. Thinking over past experiences, I quickly dismissed large chunks of the stroke volunteer universe that I realized weren’t a match. Translation: I’m fundamentally an introverted research nerd who would rather Google the latest advances in robotic physical therapy than network at a conference! That meant that as valuable and perfect for others as peer mentoring and serving on boards can be, they simply weren’t right for me.
So I started scouting for chances to volunteer to be a subject in stroke-related clinical studies in all the usual places. Newsletters from my stroke support group and county stroke association had recruitment ads from local universities. From there I found online recruitment platforms like clinicalconnection.com and researchmatch.org. Some local research centers and universities kept coming up on those sites, so I contacted them directly through their own websites.
Soon I was learning about the process of volunteering for stroke-related studies. If my medical history and demographics matched the eligibility criteria, more was shared with me about the study requirements. Then I was asked if I was willing to complete the testing process, regardless of whether a roll of the dice assigned me to a control or experimental group. I was on my way.
First, I committed to some treadmill studies at the Ataxia Research Lab at Kennedy Krieger Institute in Baltimore.
We were asked to walk for an hour or two (in 15 minute blocks) on a “split treadmill.” The split meant the treadmill was programmed so that my legs walked at two different speeds. An apron covered my view of my legs while I was told to alter my pace on one leg until I sensed both legs were walking at the same speed.
In other versions of these studies, the investigator delivered small jolts of direct current through my skull to the stroke-injured part of my brain to learn whether this stimulation improved my gait.
These volunteering projects not only provided tall tales at the water cooler (“Guess what I did this morning?”); I also enjoyed how I could complete them in just three or four two-hour trips to a nearby lab.
Other volunteer gigs weren’t that fast or high-tech. At the Veterans Administration, I enrolled in a six-month test of a new exercise program for stroke survivors.
Each week, a group of eight or 10 of us worked on our motor skills and balance in 90-minute sessions. Using dumbbells, exercise balls and bands, we took classes with instructors who charted our performance, heart rate and blood pressure at each class. Physical therapists and researchers also gave us comprehensive research-related exams before, during and at the end of the six-month program.
The social benefits of getting to know other survivors in our own ZIP code were obvious to the patients long before formal questionnaires asked whether we had enjoyed the group experience.
I learned a lot by immersing myself in the experience of volunteering to be a clinical research subject. I didn’t realize how much I had learned until after the fact. I thought about the patient’s point of view throughout the process of being recruited for a stroke study. I saw the added burden on caregivers for survivors who could not drive to test sessions as I could.
As each study ended, I wondered: “Now that I’ve finished my part in this study, do I feel I’ve contributed to improving future survivors’ treatment options? Would I volunteer for another study like this again or recommend it to another survivor?” Sometimes I would; sometimes I wouldn’t.
Learning to think this way prepared me for my next and latest volunteer opportunity — “patient reviewer” of grant applications submitted to the Patient Centered Outcomes Research Institute (PCORI).
PCORI is a new grant-making agency created as part of the Affordable Care Act. As a major healthcare research funder, PCORI wants to elevate patient volunteers from the role as subjects to be studied, to full research partners who help guide research decisions throughout the process of funding, implementing and reporting on the results of patient-centered studies.
Applying on PCORI’s website was convenient and easy. Within two months, I was working with doctors, researchers and industry stakeholders reviewing applications for grants that addressed patients’ concerns. We were looking for those most likely to produce findings patients could use in discussing treatment plans with their healthcare providers.
My two-year term as a PCORI patient reviewer is coming to a close, but I would encourage other survivors to look into this volunteer opportunity. Non-patient PCORI reviewers are remarkably welcoming and receptive to learning more about the patient’s point of view.
Having been so spoiled by this unexpected promotion of patients from research subjects to advisors, I’ll be looking for more opportunities of this kind. And I hope to encounter more survivors speaking up for our community at research review panel meetings across the country.
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