My Stroke Journey

HomeCirculation: Cardiovascular Quality and OutcomesVol. 13, No. 1My Stroke Journey Free AccessArticle CommentaryPDF/EPUBAboutView PDFView EPUBSections ToolsAdd to favoritesDownload citationsTrack citationsPermissions ShareShare onFacebookTwitterLinked InMendeleyReddit Jump toFree AccessArticle CommentaryPDF/EPUBMy Stroke JourneyFrom Self-Advocacy to Patient Advocacy Barry Jackson Barry JacksonBarry Jackson Barry Jackson, 508 Longhorn Crescent, Rockville, MD 20850. Email E-mail Address: [email protected] Originally published20 Jan 2020https://doi.org/10.1161/CIRCOUTCOMES.119.006390Circulation: Cardiovascular Quality and Outcomes. 2020;13:e006390On July 13, 2011, at the age of 38, I had a stroke. It was a normal night as I watched television and then drifted off to sleep. Little did I realize, however, it would be the start of a frightening, frustrating, challenging, and rewarding journey that continues to this day.I awoke around midnight and immediately knew something was wrong. I couldn't move my right leg and right arm, and my speech was gone. I was fortunate that my thrashing soon awakened my wife who realized that my problem was much more severe than just restless sleep.I remember that at the hospital, I couldn't even give a "Yes" or "No" answer to basic questions. Did I want tPA? I nodded my head Yes while my mouth said "No". Luckily my wife was with me to say "Yes, give it to him". They gave it to me as I slipped into a haze.Fast forward a couple of months. I was out of the inpatient rehabilitation center and starting my outpatient rehabilitation. I still needed speech therapy and to work on getting more movement from the entire right side of my body. Three days a week, I got a ride from my wife but eventually started to walk the one-and-a-half miles to the facility. I was able to do this for several additional months because my job had good short-term disability and I had actually signed up for it (which shocked my wife).In the meantime, I had been diagnosed with a patent foramen ovale or, in layman's terms, a hole in my heart. My doctors determined that the patent foramen ovale had caused my stroke. Fortunately, I got in the final stages of a clinical trial, and they installed a device that closed the hole.When I went back to work, I was still recovering. I had a personal trainer come to my house 2 days a week. I was very fortunate that my employer was extremely understanding and flexible.There also were the barriers that no one told me about or that people said I couldn't do. Driving, weight lifting, even running. All of them seemed so out of reach, and I was advised to lower my expectations for the future. But I refused to lower my expectations of what I could or could not be. Now I drive my manual Jeep. I lift weights because I can. And I recently ran a 5K and even hiked in the Grand Canyon. Because of being blessed with opportunity and my own persistence.I say all of this because that unfortunately is not the experience of most people who have a stroke. They face structural challenges: workplace hurdles, transportation hurdles, family hurdles, language hurdles—you name it. In the inpatient rehabilitation center, I saw many stroke survivors and I can't help but wonder how many of them lost their jobs, have medical debt or didn't more fully recover because of difficulties getting to outpatient therapies. For that reason, I became intent on helping make sure others have opportunities similar to mine. This was my path from self-advocacy to patient advocacy.Through volunteering for organizations like the American Heart Association/American Stroke Association, I came into contact with people who had the same interests I did—the desire to find better ways to help stroke patients recover, live their lives as normally as possible and overcome challenges and obstacles. I wanted, like the clinical trial I was so fortunate to find that closed the hole in my heart, to bring about a better care model for stroke survivors. I was introduced by Debbie Hill, also an American Heart Association/American Stroke Association volunteer, to Dr Ken Gaines, a vascular neurologist who invited me to be the co-principal investigator on a study, known as C3FIT (Coordinated, Collaborative, Comprehensive, Family-based, Integrated, Technology-enabled Stroke Care; learn more at URL: https://www.clinicaltrials.gov. Unique identifier: NCT04000971) that he was planning to conduct out of Vanderbilt University. The study will determine if stroke care given in a home environment after discharge is more effective than a standard course of outpatient care routines. It is a nationwide study involving at least 18 sites scattered across the country.I am excited about the study and my involvement in it for several reasons. The first is because I truly believe in the study's goals. It is aiming to show that continuing care for stroke survivors and their caregivers that involves home visits by a nurse and lay health educator will enable more people to overcome their stroke faster and remove barriers to recovery like transportation, work, or other issues. Plus, the home-based stroke team can observe the environment and make behavioral or other risk factor recommendations to stave off future strokes.The second reason for my excitement is that the study is funded through a grant from the Patient-Centered Outcomes Research Institute. Part of the stipulations of the grant funding is real and meaningful stakeholder engagement with the research. We have a great group of caregivers, stroke patients, and home-based stroke care providers who provide good advice to the research team about all aspects of the study. We are all pulling together to help stroke survivors and advance the care that they receive. I love the model of inclusion and of patients helping to bring about new therapies. After all, who knows a patient's struggles better than other patients?We are already making a difference with our insights and advice. Recently, 2 examples come to mind: (1) the making of a recruitment video and (2) a potential script to be read by clinicians both with stroke victims and caregivers as a primary audience. In the first instance, I worked with the study team to shorten and sharpen the message to make it appropriate for someone who had just suffered a stroke. In the second instance, having been stroke victims or caregivers, the stakeholder engagement committee recognized that a shorter and simpler message made much more sense than a longer and clinical approach. We knew from personal experience that stroke patients and caregivers in that moment are dealing with their lives being upended. Because of that, as stakeholders, we were able to give important feedback to the study that could make both video and script more successful.What does the future hold for me? Or for the study? I have no idea, but I am continuing to regain my confidence and trying my best not to let my stroke's effects hold me back in whatever I do. As for the C3FIT study—it lasts 4 years and I am sure we will have many conversations between now and the end of it as we start to write up the findings. Then our work as stakeholders is likely to continue as the C3FIT team and Patient-Centered Outcomes Research Institute work to disseminate our findings as widely as we can. Hopefully, our findings will make a difference in the care and recovery of future stroke survivors.DisclosuresNone.FootnotesThe articles published in Viewpoints reflect the opinions of the authors and do not reflect the policy or position of the American Heart Association, and the American Heart Association provides no warranty as to their accuracy or reliability.Barry Jackson, 508 Longhorn Crescent, Rockville, MD 20850. Email [email protected]com Previous Back to top Next FiguresReferencesRelatedDetails January 2020Vol 13, Issue 1 Advertisement Article InformationMetrics © 2020 American Heart Association, Inc.https://doi.org/10.1161/CIRCOUTCOMES.119.006390PMID: 31957475 Originally publishedJanuary 20, 2020 PDF download Advertisement SubjectsQuality and Outcomes