I am not sure that I have a stance - I calls it as I sees it and am persuaded to change my mind occasionally.
The original post in this thread was about the SA and the way that it collects info, and then the SA bases their future strategy on that. I am not sure that this is the right way to go about things.
Given that CPSP affects roughly 20% of people with a stroke, I do wonder why this isn’t formally recognised by the SA. Those who suffer with it need a lot of help.
There does seem to be a lot of research published on pain for stroke survivors and how to deal with it. A simple google search will find it easily. It would appear that the vast majority of these studies are funded by groups other than the SA. And while there are conferences where the participants are professionals (such as academics with no first hand experience of stroke) there are conferences where a large number of participants have lived experience - an example is the current one in Prague! I don’t know how helpful ESOC 2025 in Helsinki in May will be to non-academics, but WSC 2025 in Barcelona in October involves at least some folk with lived experience and also has some “late-breaking clinical trials”. But conferences are there to affect overall views and maybe to create new funding, sometimes. It is certainly there to gee folk on to bigger and better. But their usefulness is almost non-existent in the day-to-day reality of lived life. This is precisely the role for the SIG … and for others such as local groups, family members and, dare I say, the rank and file in the SA.
Changing topics to my personal local provision, I was given a zimmer frame, a perching stool, a stool for the shower, and a device for the toilet. I also had a pair of bannisters fitted on the stairs so that I could drag myself up in the evening and down in the morning, safely. There was also two plastic urine bottles. All of this was free. My therapies were also free, and they were daily to start off with. Yes, I have bought stuff since but all of these things I have quoted were free and gratis. Because of balance issues I cannot ride a bike, so I have got myself a recumbent tricycle so that I get out and be independent and sane. With regard to push-button toys, great, buy them, for they can serve a very useful purpose, but anything official has to be more robust and tested. Therefore I would expect them to be costing more, but as to whether the company involved is making a ridulously large profit I cannot say for I really don’t know. At present the jury is out.
With regard to stroke thrivers, it is the role (dare I say) of some of us to ensure that all are dealt with satisfactorily. For some this will involve moving in the political sphere. For others it may involve trying to alter the beliefs of large organisations, such as the SA. My view is that that can only come from the top. For many others the task of day-to-day living and thriving has to be attended to, for we have all been through that phase too.
Finally, one of things that I got from the rather messily-written book by Linda Radestadt (Stroke Rebel) is what she says is the role of neuroplasticty. Another thing that I have picked up is the role played by trauma (by which I mean long and bad experiences) sometimes resulting in chronic pain. I haven’t checked if this has been written about. However, Linda R eventually came to the realisation that the physical cause of her pain was over, and what remained was psychosomatic though equally bad. Through visualisation neuroplasticity eventually reduced the pain to nothing over period of a few months. This may well not work for some but it could for others. The primarly reason that I have mentioned this is because quite a few people suffer from CPSP but I have not heard at all from those who might have tried Linda R’s approach. Rather we get a few papers about medical interventions. Please understand that I don’t know what I am talking about! But there does seem to be an inconsistency here.
Andrew