Trial-&-Error Volunteering



Carol Keegan

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.

Find out more about PCORI volunteer opportunities.

This information is provided as a resource to our readers. The tips, products or resources listed have not been reviewed or endorsed by the American Stroke Association.

Edit ModuleShow Tags


 


 


 

Stroke Connection. Download the free app today.


 

Edit ModuleShow Tags

Stroke Rehabilitation Two-Part Series

Making the Best Decisions at Discharge After Stroke

The type of rehabilitation and support systems a survivor receives at discharge can strongly influence health outcomes and recovery. In this, the first part of a two-part series on stroke rehab, we offer guidance for the decision-making process required when it’s time to leave the hospital.

What to Expect in Stroke Rehab

Following a stroke, about two-thirds of survivors receive some type rehabilitation. In this second of our two-art series, we want to alleviate some of the mystery, fear and anxiety around the inpatient rehab part of the stroke recovery journey.
Edit ModuleShow Tags Edit ModuleShow Tags

AHA-ASA Resources

The Support Network

When faced with challenges recovering from heart disease or stroke, it’s important to have emotional support. That is why we created a network to connect patients and loved ones with others during their journey.

Stroke Family Warmline

The Warmline connects stroke survivors and their families with an ASA team member who can provide support, helpful information or just a listening ear.

Let's Talk About Stroke Patient Information Sheets

Let's Talk About Stroke is a series of downloadable patient information sheets, created by the American Stroke Association, that presents information in a question-and-answer format that's brief, easy to follow and easy to read.

Request Free Stroke Information Packets

Fill out this online form to request free information about a variety of post-stroke topics.

Caregiver Guide to Stroke

The Caregiver Guide to Stroke is meant to help caregivers better navigate the recovery process and the financial and social implications of a stroke.

Tips for Daily Living Library

This volunteer-powered library gathers tips and ideas from stroke survivors, caregivers and healthcare professionals all over the country who’ve created or discovered adaptive and often innovative ways to get things done!

Stroke Support Group Finder

To find a group near you, simply enter your ZIP code and a mile radius. If your initial search does not pull up any groups, try
Edit ModuleShow Tags

Stroke & Parts of the Brain

When Stroke Affects the Frontal Lobe

Of the four lobes that make up the cerebral cortex, the frontal lobe is the largest. It plays a huge role in many of the functions that make us human — memory, language, movement, judgment, abstract thinking.

When Stroke Affects the Temporal Lobe

The temporal lobe has several functions, mainly involved with memory, perception and language.

When Stroke Affects the Brain Stem

The brain stem serves as a bridge in the nervous system. It sits at the top of the spinal column in the center of the brain. When a stroke happens there, it can cause a few different deficits and, in the most severe cases, can lead to locked-in syndrome.

When Stroke Affects the Thalamus

The thalamus can be thought of as a "relay station," receiving signals from the brain’s outer regions (cerebral cortex), interpreting them, then sending them to other areas of the brain to complete their job.
Edit ModuleShow Tags

Departments

Stroke Notes

Stroke-related news you can use about new scientific findings, public policy, programs and resources.

Readers Room

Articles, poems and art submitted by stroke survivors and their loved ones.

Life Is Why

Everyone has a reason to live a longer, healthier life. These stroke survivors, caregivers and others share their 'whys'. We'd love for you to share yours, too!

Everyday Survival

Practical tips and advice for day-to day living after stroke.

Life At The Curb

A unique perspective on survival by comedian and stroke survivor John Kawie.

Simple Cooking

Cooking at home can be a daunting task, but a rewarding one for your diet and lifestyle (and your wallet). Making small changes in your diet is important to your heart health. Here are simple, healthy and affordable recipes and cooking tips.

Support Showcase

Our new department highlighting the good work being done by stroke support groups from around the nation. If you are part of a successful support group we should consider featuring, let us know!