A really beautiful and supportive reply to this post. We need more people like you in this world.
Hi @Lindareast - what a lovely thing to say! Everyone on here has some ‘golden nuggets’ that they can offer to others. I have found that this group of stroke survivors have been the best support for me personally that I have known, and I know we will always be here to help each other. Take care John aka Bert
Where i live at people are ignorant says they hope it won’t be her or him
Have you noticed the different attitude in the UK? I finally found the American Stroke Association, and The American Stroke Foundation. I found nothing very helpful at either, and of course, American had to be in the name to find them. The stroke association has an online forum but all I see is people griping about everything and trying to one up everyone else’s stroke experience. Not very uplifting, helpful, nor does it feel like a team who genuinely wants to help each other. Sad. I agree with you…here if you don’t work or are not spending money to keep others in work, it seems you are just a waste of time, effort and money. You seem to disappear from view. We can help change that, too, but it’s sad we always have to work so hard to try to change attitudes against being Down Syndrome, or black, or female, or ill… and on and on and on. But for the next bunch, we must keep trying.
@DeAnn such a shame if the ASA and ASF seem a little lacking in friendliness, you’ve found us here
@DeAnn i’ve never quite worked out why people need to try & outdo each other with illnesses. Thankfully this forum isn’t like that at all.
We do have our share of those type of people in the uk though. I usually just listen and nod in, hopefully, the right places xx
I tried to have a nosey but couldn’t find a forum, they don’t make it easy do they, at least you’ve found us and we’re happy you are here
True but the stroke association regularly mentions this forum so thankfully we have all found each other.
It is truly sad alot people and doctors in hospitals aren’t Educated about F a s t
Different Strokes Facebook group is also good. In fact there are at least half a dozen Facebook groups that seem to be pretty supportive that I’ve discovered.
There are also communities on Reddit and discord and of course this one runs on discourse. There are fairly active hashtags on Instagram and Twitter that I expect are migrating to one of the Twitter alternatives after the disaster that musk has been for the ordinary casual user who’s not into paying or porn
The challenge is that they are all communities so requires an investment a time to get to know the folk that are there and you’re not always gonna find everybody displays personality that you find appealing all the time.
There are also tons and tons of zoom type sessions being run by different people. Eg in English out of America, Australia. I haven’t discovered any in Canada but I know that they exist because of the need to reach people in vast sparsely populated areas like Saskatchewan. Same must be true of large areas of Australia . Doubtless or a French and German speaking equivalent to.
There is so much potential It’s a shame we can’t network all these groups into a loose affiliation that can exchange knowledge.
I have written up a vision but there’s a long way to go before it becomes a reality
I like your vision. Sometimes when things go too big, they end up not being as good, but for research purposes that would help many of us more, bigger is better. I usually find good health information from Canada. Here in the US, I mostly get info from Mayo Clinic or Cleveland Clinic. Seems like most studies are from Cambridge, with a few from the states. I like the ‘etiquette’ of this group. I won’t keep looking for something more local as well, but Americans can be quite rude. People at the pool look at me like I have the plague while I am walking, shove their way around me, often bumping me. That starts the tremors and they think I am having seizures and run away. LOL. I’m betting anyone here would at least ask if I need help, if not just politely go around. Here we are taught early to get a move on, no dallying around, always in a hurry to get to the next thing. I have never quite fit in that particular culture, and certainly do not now.
Group size and purpose have to be linked. there’s a anthropological observation that says a community has a natural limit of around 150 for individuals to comprehend stable relationships (Dunbar’s number). It’s based on brain size & function (in primates) so it might be a smaller number in our case
I’d say There are less than 150 active users here - or maybe there’s sub cultures going on in different groups that I’ve not been aware of . I guess it’s inevitable there are cultural difference in the community but I noticed the discord community which is mainly young Americans has similar compassion & patience/vibe to this group and a lot less cohesiveness so I suspect the bonding factor is adversity rather than nationality.
The loose affiliation I’m suggesting is between groups to cross-fertilize ideas. Also the visitation of professional service providers who the community can reach out to rather than the standard medical model of one-to-one ‘spoke & hub’ separation of those with need and centralisation of those with the pseudo knowledge that is medical training in our condition none of them actually have any first-hand experience of. So links, not broadening numbers that create individual’s community relationships spanning thousands of people but surface the best components of community, & therapies, & etc
Mayo and Cleveland are stalwart go-to’s of the internet. If you search Google scholar you’ll throw up papers from all around the world but they are written with a medical professional audience in mind. however reading them will show how much is speculation, how little is being translated into practise, how practises are based on old notions and current notions have a significant lag. That the profession is practised and the interventions has run in research have pretty significant differences etc etc
My vision is to work on Publishing book
You are way ahead of me in thinking, for instance I didn’t think of the adversity aspect, but it makes total sense. Also, those on discord tend to be a younger, often more open to new experiences and ideas set.
It is often hard to discern what is good science from the psuedo science. Like you, I want to see the studies and if the results are repeated in at least a couple more trials. I want to see how the study was done, the number of participants, what questions did they ask?
I may have already shared this with you (apologies if so the memories not what it was ¿I think) - if you want to read some of my thinking around community have a look at Digitally Enabled Chronic Care Community Networks: beyond '1hr Fortnightly zoom Cafés'
I think in truth I don’t want to read the research! There was a time when I used it as inspiration for new things to try but now I think my imagination about what is realistically within reach for me to use is equal to the people versed in Latin MSK nomenclature.
After having read lots of it both in the stroke neurological side and in my own disciplines in the past I think the processes is pretty much broken: driven by citations which is almost a corrupt game. the fact that a paper gets a citation increases its possibility of getting another which becomes exponential of cited papers not of good research or even poor research of good practises with value.
Then there’s a gulf between what is being found out on the research horizon and what is being administered in the clinic. At least in my personal experience. the clinicians are using what their teachers learnt so that’s the best part of two generations ago. the research - given its geometric progression at the cutting edge is unrecognizably beyond the mundane practises.
Likewise the gulf between clinicians and those needing their services is almost as great: for example is somebody talking to you about pronation & tone actually embracing the best practises in empathetic communication and habit forming strategies for rehabilitation? I think not. Then we add the challenges that the NHS introduces. Since it’s employees face no direct customer satisfaction need the service user, the customer - is disenfranchised from providing the feedback whose mechanism then encourages service improvement and sensitivity to individual needs. Just “Turn up, do a semblance of what you were taught, have an annual appraisal, move on up the pay grades year on year.” Of course there are some good ones but they’re the nuggets amongst all the dross, hard to locate and then even harder to get time with
For that reason for for those reasons
For those reasons I use reading research but much more relevantly these fora like my wife uses cookery books; get some inspiration then experiment around it, repeat what seems to work that I can build into activities of daily living ‘rinse repeat’
Your memory is good. You had not shared those thoughts with me before. I agree with you. So many times, what starts as a great idea, for good, gets mired in establishment, where money, power, fame get in the way of the good. I say you are best to follow your intuition. I still like to follow the research because I get some good ideas from it, but take it with a grain of salt. Sometimes it is obvious what they are trying to sell you on, others it isn’t. If it doesn’t harm, try it. If it is risky, weigh your options, if it seems far fetched, it likely is b.s. I hope you are continuing to improve, every day.
Wouldn’t it be interesting to be treated by a doctor who had roughly the same stroke outcome as you ?
Wonder how different the experience would be ?
I think family and friends should be educated about Cva and tias
I wrote a LinkedIn article last year and a Different Strokes community member Lucinda who had been a PT or OT leader before her stroke commented to say she recognised after her stroke how arrogant and wrong she’s been. Having seen a number of TED and other sources like YouTube by people who were medical professionals had strokes and realised the difference between reading a book and living a experience and their inability to give those with living needs sound guidance from having read the book
One of my doctors, the Neuro-Opthamalogist is a stroke survivor. She has not given up on me getting better eyesight to walk better and possibly drive. It will be 2 years in August, and vestibular therapy is going well so far, although I have just started it. Insurance does not okay very many at a time, because if one fails to continuously see progress, they will not pay for any more. (US). It is a lot to ask of my pshysiatrist and opthamologist to continue to argue for more, but so far, they have been willing and gotten more sessions for me. They give me hope.