Supporting my best mate with aphasia - what do you wish your friends knew?

I wish that people I knew didn't see me as "broken" and treated me as if I hadn't had a stroke.  They came to the hospital full of pity and asking if they could help but had little understanding of what I needed.  I live alone and when I was released from hospital I had no support for a couple of years until NDIS came to be.  In the meantime, family never visited and I had no social contacts.  If people had taken the time to read about what stroke survivors go through post-stroke, they would have had a better understanding of my needs especially socially.  Humans are social "animals"; we thrive on social contact.  Losing this because people saw me as "broken" and stayed away in droves, resulted in a serious decline to my mental health. 

I say to you make sure your friend has good family and social supports who understand he is still a person, he is just different physically.  He still wants to hear about the fun things they are doing and I am sure he will love to listen.  The brain is flexible and can sometimes a person can relearn to speak or learn to do sign language in time.  Make sure he connects with hobbies and groups that brought him joy before the stroke.  He will connect to these in a different way and that should be OK because he is a new person :)

Hi Julz, Jude from Stroke Foundation here.

Check out our aphasia handbook, it has helpful information and communication tips and tools Aphasia Handbook. And please reach out to our StrokeLine team - our nursing and allied health professionals can provide you with more information about aphasia and give you communication and connection strategies that will work for you and Jun. 

Jun is lucky to have a friend like you :) 

@junbeem

Thank you so much for sharing your experience.

You're absolutely right about the "broken" thing. I've caught myself doing it without realizing - treating Jun more carefully, sometimes talking to him differently, and I can see now how that probably makes things worse. He's still Jun, he just communicates differently now. That mindset shift is huge.

The part about social contact is also right. Jun's family is there physically, but I worry about exactly what you described - people staying away because they don't know what to do or say. I'm going to make sure his family reads your response because they need to hear this from someone who's lived it.

I really liked what you said about him still wanting to hear about the fun things we're doing. I've been hesitant to talk about my life because I thought it might make him feel worse, but you're right - he probably just wants to be included and listen. Next video call, I'm going to tell him about everything, just like I used to.

Jun was an incredible guitarist before the stroke. Music was a big part of his life. I'm working on something that might help him communicate through music again - it's early days, but hearing your story about relearning and adapting gives me hope that this could actually work for him.

Thank you for taking the time to respond. Your perspective means more than you know.

@ Jude Czer,

Hi Jude, thanks so much for the resources and for what Stroke Foundation does.

I'm downloading the Aphasia Handbook now and I'll definitely reach out to StrokeLine. Having professionals who can give me specific strategies for supporting Jun from Melbourne would be incredibly helpful. I want to make sure I'm actually helping, not just trying to help.

I'm also going to share these resources with Jun's family in the Philippines. They're doing their best, but I think we all need more understanding of what Jun's going through and how to support him properly.

Jun and I have been mates for years. I'm not going anywhere, no matter how hard communication gets. And actually, I'm working on a project that might help Jun and others like him communicate in new ways. Still early stages, but your resources will definitely inform how I think about it.

Thanks again for reaching out. It means a lot to know there are people like you and organizations like Stroke Foundation supporting survivors and their families.

Hi Julz. Communication Partner Training is the term for learning how to communicate with someone with aphasia. 

There are several  free online training courses that we discuss in the Australian Aphasia Association’s care partners course. One is through the Aphasia Institute in Toronto, another is called Better Conversations and it’s through University College Lindon and the third is through The University of Sydney Communicabllity. These are all online. Contact the Australian Aphasia Association if you want more information. 

Hi Linda,

Thank you so much for taking the time to respond and for pointing me toward Communication Partner Training - I hadn't heard that term before, but it's exactly what I need.

I really appreciate you listing those three specific resources. Knowing there are structured, evidence-based programs designed for exactly this situation is honestly a relief. I've been worried about accidentally doing things that might frustrate Jun rather than help him, so having proper guidance will make a real difference. Thanks!

I'll reach out to the Australian Aphasia Association to learn more about all three courses. The University of Sydney one particularly interests me since I'm here in Melbourne - having Australian-context training feels important.

Jun's family has been incredible, but I know I need to educate myself properly to support him better, especially from a distance. Your response has given me a clear path forward.

Thank you again for sharing your knowledge so generously.

Warm regards,

Julz

Lovely. Here is the link to Interactability at The University of Sydney. 

https://abi-communication-lab.sydney.edu.au/courses/interact-abi-lity/

I hope it helps. Your friend sounds as if he has severe aphasia. It is often good to observe an experienced aphasia therapist communicating with your friend using ‘supported communication’ and I’m assuming you are using video calls. Good luck.