When the Words Won't Come: Life After Stroke and Aphasia

One of the ways people with aphasia communicate is by using gestures

Can you imagine having clear thoughts and not being able to communicate them? It must feel like being trapped inside your brain. That's one of the cruelest impacts of my dad's stroke.

I had never heard of Aphasia before my dad's stroke, but apparently it's a common post-stroke disorder, impacting about one-third of stroke survivors. Aphasia is a language disorder resulting from damage to specific brain areas responsible for language processing. This condition can affect a person's ability to speak, understand spoken language, read, and write. There is a broad range in how people are impacted. Some people may only struggle to find specific words or pronounce them correctly, while others, like my dad, lose their words and other communication skills altogether.

My Dad's Journey with Aphasia

People often mistake my dad's inability to communicate for a lack of intelligence or cognition. They speak to me, instead of him, thinking he can't understand them. Or, they speak slowly, use small words, and over-enunciate. This makes him feel like they are treating him like a child. I need to explain, he can understand everything you're saying, he only lost his words. His brain tricks him into thinking he's saying the words, but what comes out are just sounds.

He struggles with other aspects of communication as well. He can't write. If you ask him to spell his name, he can't recall the letters. However, if we write his name on the top of the page, he can write his name below. If we show him how his name is spelt, and then take it away, sometimes he can remember and reproduce it. Right after his stroke, he couldn't read. He could recognize small words, but only if there wasn't much "visual noise" on the page. After lots of practice though, I'm pleased to say he's getting stronger. He can read at about a grade 5 level.

We've been lucky enough to work with several speech language pathologists. They've helped him learn how to communicate through gestures and communication boards. And now, we're learning how to use technology to speak for him. He has an ipad that attaches to his wheel chair with a specialized communication application installed. He can choose from a library of icons and the software speaks the words. The learning curve is very steep for him, but this could be a game changer.

Emotional and Social Implications

Aphasia extends beyond the physical challenges of communication. It also impacts emotional well-being and social interactions. My dad has experienced moments of frustration and isolation, even depression, due to his inability to express himself. While my mom and I have improved at guessing what he's trying to say, I can only imagine we're just skimming the surface. Communication is deep, nuanced, and complicated; all things we miss when we're playing twenty questions. We've often wished my dad could access counseling to help him process this major life change he's experienced, but he wouldn't be able to communicate with the counselor. It feels unfair to leave him to process the depth of his emotions on his own.

Conclusion

Aphasia is a complex condition that affects each person uniquely. My dad's experience underscores the importance of personalized therapy, unwavering support, and the incredible resilience of those living with aphasia. I wish he could share his story himself, but he can't. My hope in sharing it for him is to shed light on the realities of this condition. Before my dad's stroke, I had no idea that aphasia even existed. Now I see how crucial it is for people to understand and support those living with it.