What do you want to know as a Young Stroke Survivor?

Ali
Alion Thursday, May 18 2017
18 Comments

Hey Everyone, 

 

I am a young stroke survivor. I had a ruptured cerebral aneurysm resulting in a subarachnoid hemorrhage 4 years ago. I found that after having a stroke a lot of the resources and information out there was geared towards an older population and didn't necessarily translate into useful resources for my recovery. Therefore, a lot of my rehab was self driven, with a lot of trial and error.

 

 

For example, I had a lot of trouble with noises and loud places. I loved music and going to concerts. That got scraped instantly. The isolation and loss of a favourite hobby became a real problem for me. I began researching my symptoms and realized it was likely hyperacusis and there are treatment options available. I saw a Audiologist who specializes in Hyperacusis retraining.  Had I known this earlier, therapy could have been started much sooner. I also was fitted with custom ear plugs that are clear, so I can wear them out in public and you can barely see them. As a young person, gaining back something I felt I had lost was huge for me. I can't expect to do everything as I once did, but last year I went to my first concert! 

 

However, not everyone is able to hunt out information, nor should they have too after such an event. There are so many amazing

stroke survivors and specialists out there with information to share, we just need to ask some questions and tap into the topics that young survivors find they need help with the most. 

 

 I am doing some volunteer work for the Stroke Foundation and we would like to hear from you, what do you need more information about? 

 

This is an open forum so please share any ideas, suggestions you have! I know it's geared towards younger people but please anyone feel free to ask away! 

 

Cheers, Ali 

 

18 Responses
Marcus avatar
Marcus

Hi Ali, 

 

1. self-driven rehab - very very important.

 

2. Noise - incredibly painful - glasses, plates, supermarkets, mall, ... basically, loud noises. To get out of it, I love taking long rides and walks in forests. Silence is beautiful. As they say in Japan, you need to get out in the forest - 'forest bathing - shinrin-yoku - a cornerstone of preventive health care and healing in Japanese medical)

 

Marcus

Marcus avatar
Marcus

After a stroke or traumatic brain injury, some people talk about the 'fog' in their brains. I little different from the topic, but I will post it anyway. 

See here

 

 

 

 

 

Ali avatar
Ali

Hey Marcus, 

 

I have heard about the Japanese parks, where you must be silent and enjoy nature. Sounds amazing! Nature therapy has been a key in my rehab. 

 

I also agree with you about self driven rehab. However, I have come across some (I was a registered nurse) who are not as motivated and lack the ability for whatever reason to access care. For those I hope we can find some ways to support them. 

 

Thanks for your suggestions and I will pass them along! 

Ali avatar
Ali

Hey Diana, 

 

Thanks for your post! Educating the public around hidden disabilities is a mammoth of a challenge. 

I will pass that along and see if we can come up with some ideas! 

 

Keep the ideas coming! 

Nina Wilde avatar
Nina Wilde

Hi Ali

Great question and as someone who had many questions in early recovery but couldn't say them .

I wanted to have hope, what did other young people experience in their recovery.  I wanted to know could I have more children.  I wanted to know information about grief and loss which was relevant to not just me but my husband. But most of all I wanted to find information which gave me hope.

 

 

Marcus - that forest bathing sounds so peaceful. Sending good vibes your way.

 

And everyone - yes educating the public, very necessary.

 

Sue

Marcus avatar
Marcus

Sue, 

 

Those vibes are in any forest in the world ... sit back, relax, and listen to the silence. 

1
Loading reply form...