I had my interview today about the Stroke Association Website. Thankyou Richard, Kayleigh and Matthaus.
What I hadn’t really.than just the Forum, although I did tend to speak most about the forum. One question that they asked was have I shared the site with other people. I have to admit that I haven’t - even though I have made use of the exercise videos and they specifically state that users should show their supporters the videos first. I can exercise independently and tend to just do the easier exercises when I struggle rather than ask for help. Before my Stroke I was (sometimes even officially) the carer for my husband who has Spina Biffida and Autism and I suppose in a way I haven’t got used to the role reversal (or accepted it). I also tend to think “It was MY stroke, these are MY peers” and keep this site to myself. But maybe I should share it more. Has anyone else shared and who with?
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@FionaB1 I have told people about the site but haven’t shared it either. Never really thought to do that but will now if I think of someone to share it with.
I came to this site because I am isolated, housebound and wheelchair bound. Apart from a daily visit from carers and an occasional visit from a physiotherapist or occupational therapist and the attention of my wife I have no other contacts at this time. As a result there is no-one to share it with.
I came here to share in the experiences of others who had encountered stroke, also to sound off and say my piece. I value what is on offer here and would definitely share it with others who might benefit from it if I was in a position to do so.
It is certainly a valuable resource for people like me. One of its strengths is that the content is largely produced by those who are themselves affected.
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I think there were two reasons to ask that question and there are at least two answers depending on who you are talking to about the site (and the researchers were talking about the whole site not just the forum). The first was talking to others in the sense of “spreading the word” - yes in a way “advertising” it for more cudos, self-worth and funding for the Stroke Association. And also allowing others to get the benefit we do especially at this time when NHS help and support seems to be being eroded by the day. The other reason is to include our loved ones and those near us to help them AND us. When I’d finished the on line meeting talking about the site I was absolutely exhausted. I had to go and lie down for half and hour with my eyes closed. I then got up, felt well and went for a mile long walk, after which I felt fine and was able to engage with my family, water the pots and cook a simple meal. In other words talking about serious matters and making choices, all of which was done while sitting in a comfortable chair was much more tiring than taking a bit of gentle exercise, it’s obvious, a Stroke is a brain injury and thinking can be harder on the brain than moving, especially if you’re not badly physically affected. But before I had the stroke, before I came here, I didn’t realise that and I don’t think my family do now - I can walk for an hour so why on earth can’t I sit on my bottom talking for an hour? Perhaps I should have shared at least something of what I have learned here if not sharing the actual site
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@FionaB1 well done on participating in the SA research and getting through the interview. I am sure it took a lot out of you. I too find concentrating like that difficult.
I think you make a very good point about those that care / love us not understanding how a stroke can affect someone. It is difficult enough for us to understand never mind them. I think it would be good for our nearest and dearest to read some of what we discuss. Just need to teach my hubby how to use the internet 
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Hi Fiona-- I also visit a website based in the USA. I don’t think it is as active or friendly as this one. When I visit it I always mention this website as being so helpful. 
Jeanne
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I occasionally visit an “international” site - ie a largely American one on another topic and it is friendly, the contributors largely have the same issues and it’s interesting to get an international perspective BUT the US system is so different from ours that you can sometimes feel they might as well be talking another language - questions about insurance, public equity, profit vs not for profit organisations etc are just not relevant to most UK people