A Seat at the Table: Bringing the Stroke Survivor Voice to National Rehabilitation Guidelines
9.19.26When I received the invitation to serve on the American Heart Association’s writing committee for the 2026 Guideline for Adult Stroke Rehabilitation and Recovery, I immediately understood the significance of the opportunity. The guideline is revised only once every ten years and serves as an evidence-based roadmap for clinicians, healthcare teams, and caregivers navigating the complex process of post-stroke rehabilitation and recovery. Its recommendations help shape clinical practice, influence patient care, and ultimately affect the lives of stroke survivors and their families.
The 2026 guideline (cover shown below) was recently released, making this experience especially meaningful. What began as weekly meetings, discussions, and writing sessions has now culminated in a published guideline that will help inform stroke rehabilitation and recovery for years to come.
Sara Kutzle and I were invited to join a committee composed of distinguished physicians, occupational therapists, physical therapists, and speech therapists in the field of stroke rehabilitation. These professionals brought an extraordinary depth of scientific knowledge and clinical experience. They have spent their careers studying stroke, treating patients, conducting research, and working on the front lines of rehabilitation.
But Sara and I were there for a different reason. We were the committee’s lay stroke-survivor representatives, bringing the perspective of people who had actually lived through stroke and its aftermath.
Sara brought the perspective of someone who experienced a hemorrhagic stroke, while I represented the lived experience of ischemic stroke. We were not physicians or therapists. We approached the guideline from the other side of the equation: as people who had experienced the healthcare system, rehabilitation, recovery, and the profound changes stroke can bring to a person’s life.
There is an immeasurable difference between understanding stroke through research and medicine and understanding it because you have actually lived through one. We knew what it meant to wake up in a body that no longer behaved as it once had. We understood the frustrations, indignities, uncertainties, and small victories that can be difficult to capture in clinical language.
Interestingly, Sara and I did not know each other before joining the committee. We were not friends, nor had we met through the stroke community. We simply found ourselves on the same committee, each invited because of our individual experiences as stroke survivors.
As we began working together, we discovered something neither of us had known about the other: we were both members of Stroke Support Association’s stroke survivor support groups. Sara participates in the group in person, while I participate virtually. Neither of us knew this when we were selected, and, as far as we knew, the American Heart Association members who selected us did not know it either. We had been chosen independently, based on our individual experiences as stroke survivors.
It was an unexpected connection.
Before joining the committee, we had independently found our way to the same organization and had each benefited from hearing other survivors describe the frustrations, triumphs, uncertainties, and complexities of life after stroke. Yet we had never met. Now we were participating on a national committee helping shape guidelines that may influence how future stroke survivors receive care
That connection was interesting, but more important was what our presence on the committee represented. Our perspectives had been shaped not only by our own recoveries, but also by the experiences we had encountered within the broader stroke survivor community.
We participated in weekly meetings as the guideline was discussed, scrutinized, and written. When topics relevant to the survivor experience arose, we were often asked to share our perspectives and explain how recommendations might be experienced by someone on the receiving end of care. That insight helped shape what was being written.
We were also paired with different members of the writing team and contributed to specific portions of the guideline. It was fascinating (and humbling) to watch the process unfold. What eventually becomes a finished clinical guideline is the product of an enormous amount of discussion, deliberation, evidence review, and professional expertise.
Yet one of the most important contributions we were able to make was remarkably simple: we reminded the committee that recovery does not end when the body begins to heal
Stroke rehabilitation understandably places considerable emphasis on physical recovery. Walking, speaking, swallowing, moving, balancing, and regaining functional independence are critical. But the emotional and psychological consequences of stroke can be every bit as consequential.
A stroke can fundamentally disrupt a person’s sense of identity.
A survivor may have to grieve the loss of abilities once taken for granted, confront an unfamiliar body, renegotiate relationships, reconsider employment and independence, and cope with fear about what the future may hold. Depression, anxiety, frustration, grief, and isolation can become part of the recovery experience.
These are not peripheral concerns.
They are part of recovery itself.
We were proud to emphasize the importance of emotional and psychological recovery alongside physical rehabilitation. Our perspective helped reinforce the importance of recognizing the whole person in stroke care—not simply the deficits that can be measured, but the emotional life of the individual who must learn to live beyond the stroke.
Serving on this committee was an extraordinary honor and learning experience. Sitting alongside physicians and rehabilitation professionals who have devoted their careers to understanding stroke gave me an even greater appreciation for the complexity of recovery and the importance of evidence-based care.
But it also reinforced something I have come to believe deeply as a stroke survivor: the people who study stroke need to hear from the people who live it.
Science and clinical expertise provide the foundation for effective care. Lived experience adds another dimension, one that cannot be found in a textbook, a laboratory, or a clinical trial. I am grateful that Sara and I were given a seat at the table
—by Deven Matthews
Deven Matthews is a college professor, author, and stroke advocate whose life changed dramatically after suffering an ischemic stroke in 2022. Today, he speaks, writes, and advocates for stroke survivors, having presented at national stroke conferences, served on the American Stroke Association’s writing committee, and facilitated stroke support groups. Above all, Deven credits his wife and children, whose love, encouragement, and humor have been his greatest source of strength throughout his recovery. Deven resides in Las Vegas, Nevada.
Sara Kutzle survived a hemorrhagic stroke in June 2021, an experience that profoundly changed the course of her life. During her recovery, she used photography and journal writing to document her journey and support the process of regaining function on the right side of her body. After returning to Orange County to be closer to family, Sara discovered Stroke Support Association and the healing power of connecting with other survivors. She has also taken English and communication classes to strengthen language skills affected by her stroke and rebuild her confidence. Today, Sara continues her studies and draws on her experience to create, contribute, and help other stroke survivors feel less alone.