Which daily activity task that you feel is most difficult to do after having a stroke? bathing, dressing or feeding?

[Silvia-L]

Hi everyone, my uncle had a stroke in 2016, as a family member, I realized stroke survivors need lots more support after they leave the hospital. So I started a business to focus on developing an app for stroke survivors to improve their cognitive ability.

I would love to know more about your personal experience with stroke and how you feel about the daily tasks. So I created a survey, and here is the link: qualtrics.ucl.ac.uk/jfe/for...

It should take 3-5 minutes to complete and all of the information you provide will be treated in the strictest confidence. All stroke survivors and caregivers are welcome to answer the questions.

The information you provide is invaluable in helping me to evaluate how stroke survivors receive support after they leave the hospital - with a specific focus on identifying areas for improvement in post-stroke cognitive rehabilitation process.

Most importantly, complete the survey by 30th Nov and provide your email address for the final question, and I’ll enter you into a prize draw for a £50 Amazon voucher.

[skydivesurvivor]

not a stroke, Tbi same learning curve though. Spent years accepting change to character. Re defying the new me?!! Once u accept the changes in u, trying to move on is difficult. Finding a safe, secure platform. Somewhere outside new support. Reading, art, whatever the old u was in to. No longer able to do, challenging. Move on! Find new interests. Success is very rewarding mentally!! A whole new ball game!! Challenge the new u in whatever SAFE way will be rewarding to the new you!! Mine was to rewrite a book, on laptop. Whenever I had trying times would go back to. From early teens- 50’s?!! Has aided my memory if nothing else!!

[Silvia-L in reply to skydivesurvivor]

Yes I understand.... The function of the brain tends to become different, and it's challenging to accept the new character sometimes. Starting the easiest task, such as making a cup of tea, enjoy a bit then move to the next task, make a cup of coffee.... How do you define a safe and secure platform? Here, with people who have similar experiences?

In terms of outside support, what support did you have in mind? Did you attend the local council/online forum (other than this) or just find something to do with yourself including reading, painting or playing the games?

What kind of reward will motivate you the most?

[skydivesurvivor in reply to Silvia-L]

by outside I referred to how overwhelming I felt I was to my family, 22 years on am still aware of what a burden I am, can be to my immediate family. They would say otherwise but from such an independent old me, I doubt I would have been as tolerant. Lesson learnt? True love= tolerance? Or am I just being sceptical!! Simple things give great pleasure. Hope u find some

[john-boy-92]

I'm a stroke survivor and I'm part of small groups who are in the same boat. The groups meet on Zoom: lack of support whilst in hospital and afterwards are common complaints. The person who has a stroke may grieve for the person that they were, and their family and friends grieve for the person that they knew.

My stroke in 2016 caused right side hemianopia with macula sparing. In the hospital, an occupational therapist spent ten minutes walking me up and back on a straight corridor, and telling me to scan. That was the sum total of therapy then and since. When I was discharged after 25 hours from admission (5 hours wating to be signed out), I didn't know where the bathroom was in the small bungalow that we had lived in for about 28 years. However, my cognitive ability has improved to the extent that two parliamentary committees have published my submissions on COVID and, retained EU legislation.

I now participate in studies by a number of Universities and the Stroke Association. An abiding problem for me (and quite a few others), is the have DVLA revoked my driving licence because of the hemianopia effct on the visual field. There is still time to write to the Public Accounts Committee regarding the DVLA backlog by the way.

[Letsrock]

Hi silvia, I had stroke but GP and doc say no I have not. I have lost my right side leg and arm. I had no support from anybody and just deteriated over the last 5 years till I found these stroke exercises online flintrehab.com/stroke-exerc... help myself and very quickly within 2 weeks I can feel the difference.