TSG: Teen Stroke Group Meeting

Below is a summary of what was discussed at the meeting. Teen Stroke Group Members can also access a recording. If you’d like to watch the replay, please ask for the link on the YSG Slack channel.

Quick recap

The meeting focused on sharing experiences of stroke survivors and their recovery journeys, with participants discussing their personal challenges and adaptations to life after significant changes. The group explored various aspects of recovery, including physical therapy, speech therapy, and the importance of using accommodations and assistive technology to support individuals with disabilities. They also discussed educational and social experiences, including participation in theater and sports programs, while sharing insights about adapting to new roles and responsibilities within their families and communities.

Summary

Stroke Recovery and Communication Journey

Layli shared her experience of having a stroke at age 24, which led to a two-year intensive recovery period where she couldn’t speak, eat, or walk properly. She is now in her fourth or fifth year of recovery, during which she has been engaging more with the outside world. Layli described her speech as abnormal due to dysarthria, a condition affecting the coordination of speaking muscles, and explained that she has undergone speech therapy and used an EMST device to improve her communication skills.

Adapting to Life After Change

Layli discussed her personal journey of adapting to life after a significant change, initially focusing on physical recovery and speech in the first two years. She described the challenges of finding her new rhythm in society, which was not very accepting of diverse abilities. Layli shared that she had to adapt to a “new normal” by finding alternative activities that provided a sense of fulfillment, such as just going to the starting point of a trail because she could no longer hike. She emphasized the emotional toll of striving for her old life, which was no longer feasible, and her acceptance of her current situation.

Stroke Recovery Journey

Layli discussed her journey and recovery with Myla, who had a stroke during her sophomore year of high school. Myla was out of school until March and faced challenges returning to her studies. Layli commended Myla for her resilience and perseverance during her recovery. 

Layli shared her own experience of stroke recovery, emphasizing that younger patients often have more potential to regain abilities due to their brain’s capacity to recover, and encouraged Myla not to give up despite discouraging comments from doctors. Myla, now in 12th grade, expressed her determination to continue working on her recovery.

Supporting Disabilities with Accommodations

The group discussed the challenges faced by individuals with cognitive and physical deficits, particularly in processing information and communicating. Susan and Layli emphasized the importance of using available accommodations, such as assistive technology, to support those with disabilities. McKayla mentioned receiving some accommodations at school, and Layli encouraged her to fully utilize them. The conversation highlighted the need for understanding and support in helping individuals with disabilities thrive academically and professionally.

Class Discussions and Student Roles

The group discussed McKayla’s proximity to the board in class and her father’s help with her math studies, which she finds challenging. Nate, another stroke survivor, shared that as a personal trainer, he doesn’t use much math in his work, though he took one statistics class in college. The conversation shifted to Myla’s current courses, including theater, choir, English, and anatomy, with Layli expressing admiration for theater classes. Myla mentioned her role as a senior in directing and helping new theater students, which Susan and Layli praised for its educational value and potential for developing empathetic skills.

Sibling Experiences and Locations

The group discussed their experiences with younger siblings, with McKayla mentioning her two brothers aged 4.5 and 5.5, and Layli shared that she has experience with children that age since her 5-year-old cousin recently moved in with her. Nate shared that he was at Ocean City, MD at the beach, and pursuing an online master’s degree at the University of Maryland. The conversation concluded with a brief discussion about the geographical locations of the participants, with Layli confirming she was in California, McKayla mentioned Ohio, Myla is in Virginia, and Susan and Nate were in Maryland.

Adaptive Sports and Community Programs

The group discussed adaptive sports and community programs, with Layli sharing her experiences in adaptive surfing and theater. Susan shared a story about her involvement in adaptive golfing for a child with a disability. The conversation touched on home modifications for accessibility, including bathtub handrails and shower chairs. The conversation ended with Layli offering her phone number for further questions and support.