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The power of social connection: A young stroke survivor’s story

Constant Therapy | Aphasia

Finding social connections and community in aphasia recovery 

At just ten years old, Marina Ganetsky faced an unimaginable challenge: a ruptured AVM caused a stroke that left her in the ICU for six weeks, unable to talk, swallow, or even sit up. Her recovery journey included three months at a rehabilitation hospital, where she began to reclaim her physical abilities. Yet, one of the most significant strides in Marina’s journey came years later, when she discovered the Aphasia Recovery Connection’s Virtual Connections group. This online community of people living with aphasia quickly became a cornerstone of Marina’s life, fostering greater social connection. In this virtual space, she has found not just a platform to practice her conversation skills but also a vibrant group of friends. 

Marina’s story is not just about overcoming physical hurdles; it’s also a testament to the transformative power of social connection and community in navigating the complexities of life post-stroke. We had the true pleasure of chatting with Marina and her mother, Sasha, for a Q&A about her journey. Read on to learn more. 

Headshot of Marina, a young stroke survivor.

Marina Ganetsky

When did Marina’s speech start to come back after her stroke?

Sasha: Marina came home at the end of April, and her speech came back the following December. She understood absolutely everything, so it was a matter of coordinating the respiration with the articulation. 

How did you find the Aphasia Recovery Group?

Sasha: I’m a speech pathologist, but I hadn’t ever heard of the Aphasia Recovery Connection (ARC) before this happened to Marina. Through Googling aphasia groups and social stimulation, I found Virtual Connections on my own. I hope more people can learn about this group because social connection it’s so important for combating social isolation. 

How often do you attend the Virtual Connections group, and what are your favorite parts about it?

Marina: Once a week, and my favorite part of it is seeing all my friends in the group. 

Sasha: We’ve been coming to the group every Sunday for over a year. Marina is right: we know everybody there, and everybody knows us. It’s like being with a close group of friends. We started coming to the ARC when Marina could barely talk, and I had to translate, but now Marina is participating with her headphones in and sometimes I’m not even in the room. Every couple of weeks, so many people will say “Wow! Marina’s speech has improved so much!” They’re our barometer, since we see them every Sunday–and this is huge, because if your mom tells you you might not believe it, but if 20 different people tell you something it’s true.

What are the benefits you notice for Marina from engaging in this type of social connection?

Sasha: Beyond speech improvements, the social connection and emotional aspects are so important. The group members check up on each other. Last winter, for ski season, Marina missed several sessions in a row, and I got a couple of emails from people checking in to make sure we were okay. It’s just wonderful. 

Marina, how did your stroke impact your social environment? 

Marina: I don’t get to see friends often. They used to come by and visit, but now they don’t.  I think that’s because I am different now, because of my stroke. 

Sasha: Marina lost a lot of friends and we lost our neighborhood community after her stroke. If we’re away for a few weeks, no one knows. But these folks from the Aphasia Recovery Connection, whom we see every week, know and check in with us.

What would you like people to understand about social connection after a stroke?

Sasha: In the last Virtual Connections session, Marina said that the group helps her practice talking. It’s important because she doesn’t have a lot of opportunities for that type of social connection outside of school. But every single Sunday she gets meaningful, authentic conversation practice with friends, making jokes and laughing. So many people become depressed after a stroke because they lose friends. Depression can hinder motivation, which in turn hinders engagement in therapy, which in turn negatively affects the whole rehabilitation process. So this group, in which everyone talks about what they’re feeling and has this social interaction with others, helps the recovery motivation. 

How does the Life Participation Approach to Aphasia factor in?

Sasha: The Life Participation Approach to Aphasia (LPAA) is all about increasing your participation in life, because when communication breaks down and you fear being misunderstood by people, you can isolate yourself even more, which in turn leads to more depression and social isolation—it’s a loop you have to fight against.  

Marina: With Tracey [Marina’s speech therapist], I walk around the neighborhood a lot. We went to a cupcake store. 

Sasha: With LPAA, the patient is the expert in therapy and the patient makes the goals. And Marina’s two main goals were getting back to school and making friends. So Marina’s speech therapist started conducting her sessions by walking around the neighborhood because Marina wanted to go trick or treating.

How did Marina get back into school?

Sasha: At the end of fifth grade, Marina returned to school for art and music classes for a couple of hours each week with her occupational therapist, who really helped to reintegrate Marina back into the school. Then, in sixth grade, she took math, reading, art, and science classes, and lunch, because she got to see friends. Especially for school-age kids who have brain injuries or aphasia, school is the one and only place to get back into social interaction, which is so important for recovery. The previous year, she was in a completely separate class with only one other student, and that didn’t provide much social interaction. This year, with the help of her SLP and OT, we got Marina into the higher math and language arts classes, because the administrators finally realized that it’s not about writing fractions or writing a five paragraph essay, but about stroke recovery. And that’s the Life Participation Approach. 

What’s your favorite subject? 

Marina: Art and lunch, because I get to see friends. All of my best friends from before my stroke don’t talk to me anymore because I’m different. But now I have made new friends and we eat lunch together every day.

How did Constant Therapy factor into Marina’s recovery? 

Sasha: I had the Constant Therapy app on my iPad, and we used it a lot for the first year and a half post stroke before Marina went back to school, especially the “Name Pictures” and reading exercises. It definitely helped because even just Marina’s confidence after doing the therapy activities would increase after seeing her accuracy and levels increase. It especially helped with her fast word retrieval. 

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Can you talk about your journey to writing your book, “Or So They Thought: A True Story”? 

Sasha: The book was about a year and a half in the making. Marina and I were talking about losing friends and the difficulty of finding social connection after a stroke, and I kept telling her “you’re not the only one,” so Marina decided to write a story about her journey. It was important to Marina to tell things like they are. She talks about how her childhood friends wouldn’t ring her doorbell anymore, and then later decided to ask 6 or 7 other young stroke survivors to include their stories. 100% of the people whose stories are included in the book lost 100% of their friends, so we really wanted this book to be about acceptance and inclusion. 

What is one thing you want people to learn from reading your book? 

Marina: You are not alone.

Concluding thoughts

Marina lights up every room with her engagement and joy and exemplifies the essence of living fully and authentically. This young survivor has a lot to teach all of us about resilience and the importance of focusing on what truly matters in life: kindness and social connection. 

If you’re looking for an uplifting holiday gift this year, consider checking out Marina’s book, Or So They Thought: A True Story, which is available on Amazon.

Or So They Thought: A True Story, by Marina Ganetsky.

“Or So They Thought: A True Story,” by Marina Ganetsky

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