Every year, the stroke community comes together to celebrate two important months: Stroke Awareness Month and Aphasia Awareness Month. May is National Stroke Awareness Month, a time when the stroke community shares resources to help reduce stroke risk and provides information for what to do when someone experiences a stroke. In June, which is National Aphasia Awareness Month, the stroke community focuses on aphasia education and correcting misconceptions about aphasia, which about one third of people experience after a stroke (1). Aphasia is an acquired communication disorder that impairs a person’s ability to process language or speech, but does not affect intelligence. The National Aphasia Association writes that 2 million people in the United States have aphasia, but 84.5% of Americans state that they’ve never heard the term aphasia. The goal of Aphasia Awareness Month is to change this statistic. Throughout National Stroke and Aphasia Months, another goal is to harness the power of community connection by sharing stories and experiences of survivors and their loved ones.
To help raise awareness and spread hope throughout the community during National Stroke Awareness Month and Aphasia Awareness Month, MedRhythms collaborated with several stroke survivor advocacy groups and online communities to create “Hope Post-Stroke,” a social media campaign that featured stroke survivors’ stories across our social media channels. The other organizations involved in this effort included Stroke Buddies, Stroke Onward, The Brain Injury Hope Network, and Aphasia Nation.
The goal with “Hope Post-Stroke” was to create a space where stroke survivors could share their experiences and advice during the recovery process with the community. After experiencing a stroke, the challenges that one can face in recovery can go beyond that of physical rehabilitation. Elevated levels of loneliness are reported in a significant number of stroke survivors, and research suggests that nearly half of stroke survivors experience isolation post-stroke (2,3). Additionally, post-stroke depression occurs in a significant number of survivors and constitutes an important complication of stroke, leading to greater disability as well as increased mortality (4). About a third of stroke survivors experience depression within the first one to three years post stroke (5). By joining forces with Stroke Buddies, Stroke Onward, The Brain Injury Hope Network, and Aphasia Nation, we aimed to leverage our collective networks to amplify empowering messages and stories from survivors.
The stories that we shared over the months of May and June came from short Q&As with volunteers who filled out a form online that asked 5 questions:
- What kind of stroke did you have and when did it occur?
- What is a challenge you experienced and overcame during your stroke recovery?
- If you could go back in time to when you had your stroke and you could give yourself one piece of advice, what would that advice be?
- Why is it important to have hope in the recovery process?
- Is there anything else you’d like to share?
We quickly noticed that, in the responses we received, a common theme was the importance of perseverance and patience while challenging oneself to not give up in the face of difficulty during the recovery process. Angelia A., who experienced RCVS syndrome that resulted in a transient ischemic attack (TIA) in February of 2009, made tremendous progress in her recovery after losing complete use of everything on her dominant side, including her eyesight. Angelia shared with us that if she could go back in time to when she had her stroke and share one piece of advice, it would be that “patience and consistency is the most important gift of healing.”
In addition to the power of perseverance, many of the stroke survivors who shared their stories with us focused on the power of neuroplasticity. Many individuals from the community conveyed that the reason they had hope throughout their recovery process was due to the knowledge that neuroplasticity could enable the brain to create and strengthen synaptic connections in response to learning or repetitive actions. “All we have is hope,” said Neal I., a stroke survivor who had an ischemic stroke with hematoma in 2017, “and as long as there is neuroplasticity, I will keep trying to improve.” While Neal’s balance-center was damaged as a result of the stroke, his determination to make progress in his recovery has enabled him to significantly improve his walking function. Now, Neal can walk over 2 miles a day. Across many stories, we learned that neuroplasticity not only inspired hope, but was a key motivator for stroke survivors to work toward and achieve their post-stroke goals.
It is the stories collected through the Hope Post-Stroke campaign that highlight how hope can give stroke survivors the strength to persevere. Gayle G. spoke on behalf of her son Jon, who suffered a stroke early in the COVID-19 pandemic and many resources were not available to him. “It is hope that keeps us from falling into despair, where we remain stagnant,” Gayle shared with us. This guidance of hope, whether it comes from small successes or trust in the complexity of neuroplasticity, is what can propel the healing process forward, both physically and emotionally. It is our hope at MedRhythms that, by sharing these stories, we can elevate the conversation around stroke and provide stroke survivors with stories from the community that will inspire, empower, and connect.
- Berthier ML, Pulvermüller F, Dávila G, Casares NG, Gutiérrez A. Drug therapy of post-stroke aphasia: a review of current evidence. Neuropsychol Rev. 2011;21:302–317.
- Haun, Jolie, et al. “The Continuum of Connectedness and Social Isolation during Post Stroke Recovery.” Journal of Aging Studies, JAI, 10 Jan. 2008, https://www.sciencedirect.com/science/article/abs/pii/S0890406507000679
- Byrne, Christopher et al. “Stroke Survivors Experience Elevated Levels of Loneliness: A Multi-Year Analysis of the National Survey for Wales.” Archives of clinical neuropsychology : the official journal of the National Academy of Neuropsychologists vol. 37,2 (2022): 390-407. doi:10.1093/arclin/acab046
- Robinson, R. G. & Jorge, R. E. Post-stroke depression: A review. Am. J. Psychiatry 173, 221–231 (2016).
- Towfighi, A., Ovbiagele, B., Husseini, N., Hackett, M., Jorge, R., Kissela, B., Mithchell, P., Skolarus, L., Whooley, M., and Williams, L. (2017) Poststroke Depression: A Scientific Statement for Healthcare Professionals From the American Heart Association/American Stroke Association. Stroke Vol 48 (2).