I’m very disappointed with Stroke Association
They don’t seem to care about people suffering with Aphasia

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Good afternoon.

A quick look on the SA website, and they do have a section on Aphasia:

Are there any particular elements that you would like help or assistance with? This forum seems a great place to ask, chat, discuss etc. I’m sure others can and will chip-in too. There’s a tonne of good people and info here :slight_smile:



@bendy149 sorry to hear you’re disappointed with the Stroke Association. Is there something specific they haven’t helped you with?

I didn’t have aphasia following my stroke but i’m sure people on this forum can offer some support and advice if you need it.

Best wishes.



You are so wrong about Stroke Association
They use to run a Aphasia Cafe near me
And Stroke Association is just not bothering because not everyone who has a Stroke has speech problems which is what Aphasia is
Stroke Association is more concerned about physical problems

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I had a TIA 2yrs ago and have Aphasia, I was lucky to receive speech therapy during the height of the covid lockdowns and improve. But I do still have some speech impediment and still some word selection issues too.

Is there no Aphasia Self-Help Group near you. I go to one in Bolton, we meet once a month and it is a SA support group. The group only started up again last April after the lockdowns, so could the Aphasia Cafe near you have just re-opened elsewhere perhaps? Granted, there doesn’t seem to be a lot of help out there though for the Aphasia side of stroke, I found that out myself searching around online. As my stroke was during the lockdowns, I just had to content myself with reading a lot out loud for shear practice of speech…unfortunate for the rest of my family though having to listen to my gibberish :laughing: But it did help and indeed improve, though it was slow, and a bit tedious at times :roll_eyes: And still not a hundred percent but at least I can communicate now and make myself understandable.

It’s frustrating

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My speech is different everyday one day i can talk and the next day all I can do is write messages on my mobile phone and show it to people No two days are the same
I just feel very let down by Stroke Association i know the Aphasia Cafe was just one morning every two weeks just for a couple of hours
Yes there is a Aphasia group near me to call Aphasia Re-Connect which runs every Wednesday afternoon from 1-3 pm which is run at City University and funded by them for people with Aphasia and speech and language therapist studies
Which I must say it very good so if anyone in North London with Aphasia needs help with they Aphasia please come along its not just for people with Aphasia but there family too
They are just doing what the Stroke Association should be doing and don’t get me started about
My Stroke Guide when it first started up they was a helpline on if you had difficulty setting it up
But what good is that for someone who suffer with Aphasia and when I put it to Stroke Association at World Stroke Day they just didn’t have any response for me all i was asking for was a YouTube video on how to set-up your mystrorkeguidle for people not like me who was having problems setting it up

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As my TIA came on in the height of the covid lockdowns there really wasn’t any help after the first 6wks, even the physiotherapist I had was heavily pregnant so I didn’t feel comfortable having her in the house and putting her at risk so I chased her off after 2 visits :laughing: Speech therapy was online/phone calls so no good to me as I couldn’t speak and couldn’t concentrate long enough as the brain would just shut down (that’s only how I describe it). I certainly didn’t have the concentration to set up the My Stroke Guide. I take a few minutes to get started on it then, right, shut it down again. It was all too much for my brain, information overload. I kept trying periodically and now I’m finally in…and trying to figure out what I might need it for :laughing: Actually what I was looking up about, a drop foot query, I now realise I need an actual physio consultation for. So it has inspired me to phone my surgery and I’m seeing physio next Tuesday :grin:

Maybe you email them with that suggestion as it sounds like a good idea. I’m sure they could easily do that, clearly title it and then put the youtube link on their home page for ease of access. That’s a good idea, more sites should do that as it would save so much time.


I know how to use it but there are a lot of people out there who didn’t know and they was No videos on YouTube on how to set up your account
I’m not surprised about Stroke Association unless your stroke is physical the Stroke Association doesn’t seem to be interested
Just the same as they TV Add