Simon Thank you so much Simon for this. I agree with what you have writtten. But I am just wondering idly about the usefulness of professional therapists over lived experience. In my view both have their place without a doubt and are very useful for recovery.
Therapists are certainly exceptionally useful in the opening stages, say the first six months, and will have been trained in all sorts of things that we, the lived experience people, won’t know about (at least immediately) such as developmental stages, terminology, and so on. Yes, we gradually pick things up as time progresses because of youtube videos, books and the people we encounter. But the early stages really do need professionals, and the rest of us can help. Indeed, there is one book which addresses helpers/carers a lot.
A little later on it is different. Yes, professionals can be useful in the early stages, but I also now crave ideas and support from those with lived experience. You could call this latter a support group, but it is more than that. In my case, getting on for 23 months in, a lot has changed in the time since the stroke itself. I need people about me for company, to exchange ideas, to relate how things are going, to gee me up to continue for the many hours of exercises which can sometimes be quite wearing. Personally, I need that special person to come to my aid when things get too much. I have learned that the overall understanding of things develops with time and that memories can be very unreliable. So we need to do some measurement and the writing down of this, but also to exchange things with others - spouses can be excellent but we need more for the years of getting better.
So in a nutshell, therapists for 6 months and lived experience folk for afterwards. Of course it isn’t as straightforward as this, nowhere near, and it will depend on the severity of the stroke and where it is etc. etc.. But the important thing is the knowing that others have been through the same, have been humbled by it, but will have a myriad of experiences and ideas to share.
