Speech therapy frustrations as a young stroke survivor

Following my own experiences with inaccessible speech therapy, for my studies I’m developing an online resource to make speech therapy more accessible to different patients, and wondered if anyone has had similar experiences to mine? This could be from the perspective of stroke patients, carers, or healthcare professionals.

10 years ago, when I was 18 I suffered a stroke, which caused, amongst other issues, aphasia. I received speech therapy, and while the healthcare professionals were amazing, their resources were limited. This is in the UK through NHS which is sadly underfunded. The materials were targeted at elderly people and were for very basic levels of rehabilitation.

As a very determined 18 year old, the materials, which included words such as false teeth, abacus, etc, were not relevant to someone in my circumstances. There also wasn’t any opportunity to progress beyond basic speech therapy. For myself, I had hopes of going on to study after my rehabilitation, but couldn’t get the professional support to challenge me to a level where I could attend university, write long text etc.

I’m now working on a project to develop an online resource that offers speech therapy materials that can be adapted for different people’s circumstances. That could be age, difficulty level, language, profession, areas of interest.

I’d really appreciate any insights on this topic to understand other people’s experiences.

Hi @milliejc welcome to our little band, so sorry to hear you’ve had a stroke and at such an early age, that had to be devastating for you.

It sounds a wonderful project your putting together and I wish you every success.

It’s sad you weren’t able to access the correct rehabilitation to enable you to go on to university however it sounds as if your determination has paid off.

Take care and best wishes

@milliejc welcome to our exclusive SS club but really shocked and sorry you had a stroke aged 18.

Your research and determination as a younger person will hold you in good stead to recover, which I hope you have.

Lots of luck with your project.

There’s threads on here you could look through to see if anyone catches your eye for aphasia. Personally my speech came back the same day, swallowing was about a month.

I think it depends on the type of stroke you have mine was a cerebella back of head stroke so deep in the skull tissues. CT scan didn’t pick it up MRI did but 9 to 10 days later which I had no medication so it’s caused all sorts of problems. I was 59 when it happened.

I wish you luck and let us know how you get on with your on line project. Best regards Loraine

@milliejc welcome to the forum. Although sorry you had a stroke at such a young age.

Your project sounds like a great idea. Its a shame that NHS SALT doesn’t cater for younger patients & is clearly a failing in the system.

I don’t know if you’ve heard of Different Strokes but may be worth you joining their Facebook group as it is specifically for stroke survivors under 65 & has a lot of young members.

I didn’t need SALT Post stroke so have no insight to offer sorry.

Best of luck.

Ann x

Please do work on materials. I had help from SpeakwithIT now called Aphasia Support, a charity to help victims of aphasia through conversation practice by zoom and indeed by a cafe set up for some that can go there in Wakefield. We (my husband suffered 3 strokes and has some aphasia issues in speaking and cannot type or read [he can get some single words at a time with a picture for instance on Tactus] also have been using Tactus to get vocabulary back. It is an app geared to help from America but it needs a willing helper to facilitate it. This charity’s email is info@aphasiasupport.org, www.aphasiasupport.org and James Major is their Chief Executive Officer. Try contacting them. - they need volunteers to help facilitate things though. We, fortunately, have one girl volunteer who is a speech therapist in another area more than aphasia, who spends 30 minutes a week/ fortnight with my husband. I get him onto the zoom and then they carry on. -Anne

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