This week I was invited to talk at a local Stroke Support Group.
Shamelessly I traded tips on looking after yourself, for the group’s help writing this article on living with Stroke!
The group comprised people who were living with Stroke, and family members. Below I share their responses to the question I asked “What would you most like to pass on to others about living with Stroke?”
What you see below, is what was reported. Apart from a bit of reordering, and minus a few risqué jokes!
I had a lot of fun, and there was a lot of laughter amongst the serious conversation. I hope I can convey a little of that here.
See what you think, I believe this would also be relevant to people living with brain injury from all causes.
Living With Stroke – Tips
There were two main areas people talked about:
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- the impact of having a Stroke – listed below as headings
- what people had found helpful. Tips are listed under each heading; according to whether it relates to supporters and community members, or people who have had a Stroke.
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There was not much time for people to give great thought to their responses. We had a very short time available, and the group had no advance warning of the questions. This list below is brief yet I believe it is helpful, and informative.
It is not complete so please make it even more helpful by adding additional thoughts in the Comments below.
There is frustration at not being able to do what you used to.
If you are living with Stroke or brain injury:
Don’t be afraid to ask for help.
Do what you CAN do as much as possible.
Use the aids and equipment that help you:
“A bed pole was the most useful aid. It slid in place under the mattress and I could get in and out by myself.”
Look at what you can do, not what you cannot do:
Within the group a number of people had found new skills, talents and interests. Some belonged to a choir formed for people with Aphasia (more on that soon). One woman has discovered a significant artistic talent.
If you are supporting a person living with Stroke or brain injury:
Look for ways to build capacities. What skills, knowledge, talents can be built on.
Encourage positive not negative messages.
Work to really understand what it is like.
“Everyone should spend some time with one leg and one arm tied behind them to experience what it is like. Architects and equipment designers should do this so they really know what our needs are .”
Communication can be difficult
If you are living with Stroke or brain injury:
Use communication aids if they are available.
If speaking is not possible try writing.
Be patient with people trying to understand.
If you are supporting a person living with Stroke or brain injury:
LISTEN – Yes I know this is my ‘broken record’ strategy, I repeat it often. But really and truly, this was recommended by a person in the group, by someone other than me!
If you don’t understand what a person is saying:
- Don’t be afraid to ask the person to repeat what they said
- OR ask the person to spell the word, or words
Learn about communication aids and use them if they are available
You are invisible. Often people ignore you. Sometimes your difficulties are hidden.
If you are living with Stroke or brain injury:
Self belief is important.
Don’t take it personally, keep going.
If you are supporting a person living with Stroke or brain injury:
Don’t run away because you don’t understand, or because a person is different. Try different ways to understand. Put yourself in the other person’s shoes.
Encourage and support the person’s confidence and self belief.
Understand more about why brain injury and Stroke is called the Hidden Disability. People can appear the same physically but have significant difficulties.
You can lose self respect
If you are living with Stroke or brain injury:
Don’t give up.
Join a Stroke support group or if there is not one then start your own.
“If you go to Alcoholics Anonymous you want to meet someone who has been 40 years sober. If you go to a Stroke support group you are likely to meet people who have recovered.”
If you are supporting a person living with Stroke or brain injury:
Be respectful
Don’t take away HOPE – hearing a message such as “You will never walk again” from a Doctor in hospital can be a devastating message. Leave some room for hope and potential, improvement can happen over months sometimes years.
Perseverance is important
If you are living with Stroke or brain injury:
“Don’t sit on you’re a..e rusting. Work on it!”
Explain what help is needed. Don’t expect others to know.
If you can’t do something work on finding a “work around” don’t give up e.g. if you can’t write, sometimes you can print or use a computer keyboard.
If you are supporting a person living with Stroke or brain injury:
Don’t rush. Allow enough time to finish things.
A final suggestion:
“Be grateful for what you’ve got instead of thinking about what you miss”.
What Did I Learn About Living with Stroke
Despite my initial nerves, and wondering what I would have to offer I was quickly put at ease. This large group of people living with Stroke made me feel instantly comfortable and welcome. On reflection I realised I got a lot more than I gave – in a nice way.
In addition to tips the group passed on above, I thought I would add a few comments that came to me as I thought about my morning:
Adverse events such as Stroke, brain injury are life changing yet positive outcomes do happen. Things like:
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being able to spend more time together and doing things you enjoy such as travelling
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sharing stories and new friendships
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finding new strengths and toughness in yourself
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learning to do more of what you want, and not what you think you should be doing.
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People are very willing to share what they have learned you just have to ask.
Humour can help. Sometimes it gets very black! Sometimes it gets very blue!
Stroke and other forms of brain injury can happen to anyone, anytime: mother, academic, lawyer, sportsperson,child, business man, politician, husband, wife.
And Finally
I want to thank everyone who attended the Croydon Stroke Support Group for being so generous with their thoughts, and so welcoming of a stranger.
Readers I now need your help. I did make a somewhat exaggerated suggestion to the group that they might become world famous after helping with this article.
There were jokes about sharing the huge profits that might come with world fame!
While we all understood fame was not likely, I thought it would be great to share who reads this.
I would very much appreciate it if you could record the state and country you are from in the comments below.
Then at least I could make amends somewhat, by showing the group that people from around the world, or at least somewhere outside of Croydon, have seen this!
Thanks Melanie, this is really useful. I am meeting with a client of mine who had a stroke so planning to go through this with him and his wife. He is considering going to a Stroke Group so this may help.
Alison
That’s great, the people who helped write this will be delighted, as I am.
Melanie
A great little article Mel. Afraid Brunswick not so far from Croydon but a start for the world-wide journey.
Brunswick, Australia is a good start to a world wide journey! Thanks Donna
Hi
Yes it was helpful, I am recovering from a TBI In New Jersey…wish I had a nickel for everyone who says, but you look good…LOL
Thanks Mimi, I can now assure the group that while we might not be world famous, they have been seen internationally! Yes people at the Stroke group talked also about the hidden nature of brain injury and the”but you look OK” comment.
Your article on visiting the Croydon Stroke Support Group should be encouragement for people thinking they have no where to go and no one will listen, often sadly they just give up.
This should enlighten people to seek a Peer Support Group near them. Good advice and thank you.
Croydon Group is one of the Association’s oldest Groups, founded by Gillian some years ago, many people have benefited from being a member and attending their weekly meetings, it has helped others to move on to doing different things in their lives, opened many new doors and changed their lives to become a new direction they now enjoy.
Thankyou Clare for your support of the article and the background to the Croydon Stroke Support Group. I hope we encourage others who are thinking about it.
Croydon Group is the only Group who meets weekly, great effort.
Good tips about caring and encouraging the stroke survivor but what about caring for the carer and helping them move on? They are people very much affected by strokes and brain injury .
That is very true Sue. Those caring often have not been able to take time to look after themselves. Many of the tips can also be applied to the carer, for instance keeping up your interests, taking time for self, saying No to things that are stressful. “Moving on” is something that is not often talked about and would maybe be a useful topic to cover.
Very interesting that you assume “Stroke” is as hidden or invisible as a “brain injury”. The general public may not call it a brain injury but most understands that a stroke happens to a person’s brain. Many people have probably seen family members, friends or neighbors who are living after a stroke. Many do have “visible” physical problems. Can anyone tell if a “person” walking down the street is deaf, regardless of why. To me, hidden or invisible is just that, there is no indication until it becomes face-to-face. I wonder, do members of the “Croydon Stroke Support Group” consider themselves hidden or invisible? But, I also want to thank you for speaking to that group, or any other group, and this web blog. Being heard is the key for having brain injuries stop being called hidden or invisible or silent.
Thankyou Ric, you bring some great points. So much so, I am changing next week’s topic and will focus on “hidden disability”. Your comments really got me thinking.
Briefly to answer some of your comments here; the people who raised this issue in the Stroke group were suggesting other people sometimes did not understand their difficulties because they could not see the issues because they were hidden.
There was also discussion that at times you feel invisible, ignored, or not taken seriously.
I absolutely agree that many people do not see Stroke as a brain injury though it is damage happening in the brain. I do use the broad definition of brain injury: that is any damage to the brain, from any cause after birth.
Thanks so much again.
Well, their getting world famous slowly 😉
I’m reading this from Canada’s Capital – so definitely a little ways off from you.
Fantastic thankyou. At least I can now share world fame with such a helpful group!
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Dublin Ireland here. Can I add my tuppence worth. Never ever ever give up or give in.
Great point Jennifer and a very important one! Thankou. Melanie