Thanks @Trace57
You’ve obviously done pretty well if you put the car on the drive because that means vision cognition anxiety arm and leg were all playing ball
We all battle against the boundary between what we can and what we want to be able to do - indeed we did before stroke but I for one am more aware of the boundary now.
That’s why I think the term #StrokeWarriors works because it is inclusive of the survivor and everybody else involved in post stroke capability developments Your husband my wife and many others - some here criticised “StrokeWarrior” as the wrong term; perhaps #StrokeThrivers works for them.
#StrokeWarriors works for me because I had my stroke during covid and had to battle to get access to physiotherapy. I think regaining capability is an everyday struggle, and I’ve tried to put ideas for improvement forwards like building on FAST to raise awareness not of the “oh excrement” moment of somebody has had a life blighting event but of TIAs - the early warning signs - and yet I find the vested interests resist
From first hand documented experience I find the SA staff’s understanding of messages that they have on their website lacking - that strikes me as a cultural and a training deficit which falls to management, directors & trustees to address.
You’re right that covid as a universally understood irresistible force shifted the landscape. Community rehab, peer support, group video calls, attitudes to change etc all shifted in ways we can now take advantage of and can help improve stroke care
If you drive in your dreams it will help your neuroplasticity plasticity in all things, or adaption refinement and hopefully improvement
Darn it, how did I miss this celebration 5 days ago, I’m slipping Congratulations…that’s one small step to stroke recovery all the same
I remember my OT advised to at least get in the car and play with the peddles and handle the gear and switches etc. to at least maintain that familiarity until you are ready to drive again. So don’t lose hope
Thank you for the encouragement! Thankfully, I’m not itching to get out and about too much yet but it would be quite nice to drive into town on my own once in a while without having to rely on hubby to take me. I’d probably have attempted to venture out by now if it wasn’t for the tingling/numbness in face and neck which gives me a kind of brain fog - don’t know how else to describe it Not too sure I want to be driving feeling like that
Hi there
I had none of the FAST symptoms and because of this, i talked myself out of the idea i was having a stroke. When it happened on the friday morning, i looked and waiting for the FAST symptoms and when they didn’t happen, i took myself off to bed with vomiting, headache and dizziness. Stayed in bed all weekend until my GP told me on the monday to call an ambulance. Lots of injury caused and its been life changing. I personally wish I’d listened to my first thought and not looked for the FAST symptoms. I often wonder if i would now be recovered.
I’m so sorry to hear you recant the tale. It is my firm belief that you are amongst a majority and not a minority .
My case was slightly similar but it was the medical profession who used FAST to determine ‘just sit and wait’ and then “oh it’s been too long for you to be given a clotbuster”
If I had been 20 years younger when I presented I would probably been dismissed as intoxicated with something - my only symptom for 36 hours was loss of balance
If we had a strongly representative body who listened to our experiences you’d think they would co-ordinate and support us to campaign on our behalf…, They would up rate messages that they put in the public domain responsively to what we say rather than stick resistantly to an obviously flawed message that was once state of the state of the art but now marks an anchor to improving services & awareness
I had a cerebellum stroke in May 2020 and had no FAST symptoms. About 10.30 at night I suddenly had double vision but otherwise felt ok, so I went to bed. Woke up ok, got up, had breakfast and was on a Zoom meeting with work (was working from home due to lockdown) when I suddenly felt weird. I had to rest my head on the table. Then I began to vomit. Rang the GP who thought it was vertigo, but said he would send a nurse. She appeared about 4 hours later in full PEP and 10 minutes later called an ambulance because I was showing dysmetria (the finger to my nose and her finger test). I had had a stroke in my cerebellum which was confirmed by a scan. I had a lot of balance and vision problems. 11 days in hospital, adjusting to the fact I’d had a stroke and worrying about my wife who was having chemo for breast cancer, in the middle of COVID, and lot’s of physio later I came home. Praise God I recovered well, returned to working from home in July, and can drive. However, I suffered quite a lot from fatigue, and in the afternoons became tired and lost concentration easily. I returned to the office in July 2021, but couldn’t perform my job as an accountant effectively, so in October 21 retired early. Whilst I now only really have some balance problems, things could have been so much worse. It was about 17 hours before I got a diagnosis and any treatment. Had I known about BEFAST I would have called an ambulance straight away and got the diagnosis & treatment many hours earlier. A stroke never entered the minds of either me or my wife, or my GP for that matter. I have been blessed with a good recovery, but sadly very many aren’t. Maybe it’s time to update the advice and help save more people from disability or worse. (Sorry this turned out to be a long post.)
the stroke association representatives I have lobbied about changing the advice that they stand behind have been unpleasantly strident in telling me they have no intention of changing although having said that there FAST web page that used to just say FAST before I took to social media to comment regularly does now say these are not the only symptoms.
I think we as a community have the potential to be a voice for our own good but only if we can speak with one voice
At the moment we have no community mechanisms Again the stroke association seemed to be remarkably resistant to the idea
I am still keen that we form together. Some of us are in a small way You’re welcome to join
FAST was groundbreaking now it’s an anchor and doing as much, possibly more damage than it does as helpful advice.
I’m very glad to hear you have recovered some capabilities well & sorry for your continuing deficits - they will probably now be lifelong whereas awareness of the symptoms of TIAs has the potential to do what FAST does not
Thanks for sharing
I started this thread to get some anecdotal evidence and it’s certainly doing that
If you were the head of the NHS for example and were looking at this issue.
FAST is 4 items to remember and has been heavily advertised.
FAST is going to account for x% of all cases
FAST is not going to cover x% of all cases
BEFAST is 6 items to remember (would suggest this is a real negative in a very stressful situation) and may not be as effective simply because it’s 6 items
BEFAST more effective online
BEFAST isn’t advertised
BEFAST clearly covers more cases providing that people are aware that not all items need to apply
So this might not be as clear cut. I couldn’t remember all 4 items from FAST when mine struck. Face, arms and speech very visual from the adverts. T …what part of the body begins with T !! Obviously with hindsight it wasn’t a body part at all.
I do understand and agree the principal message your highlighting
However too many medical professionals and the majority of lay public have been miss- taught that FAST is reliable and definitive - when in fact it is indicative and unreliable.
It’s also after the ‘oh sh**te’ moments. Many of us had early warning signs that no one pick up on and if they had years of disability may be avoided for a large percentage of the folk left with it - I would say both probability and impact have sufficient magnitude that the effort to produce and distribute better guidance is very very warranted
With hindsight, think my point really was only about the individuals. I hadn’t really considered beyond that.
Given we are talking 140k a year have strokes, it is something many professionals will come across. You would think they would make absolutely sure the those people knew what they were doing.
He was researcher for a Westminster MP & is now a locally councillor who has a campaign to get FAST correctly positioned as indicative NOT complete nor reliable; a message many of the above posts prove and 2/3rds of us share
A petition in the Scottish Parliament (open to anyone on the globe ) is at
The campaign has a page at
I hope you’ll feel the important messages deserve our support with a click-through & sign / like
Way too much emphasis and publicity was put on age, diet and lifestyle being the main cause of stroke (and other major illnesses) in the past, that it’s now ingrained! To the point that some even believe its the only cause of stroke. We are also blinkered to the classic FAST symptoms. To the point that even healthcare professionals misdiagnose and the public are blind to all other symptoms of stroke.
Agreed
I’m hopeful James will be a rallying point for more who share the desire to shift the messaging.
The Stroke Association Scotland engagement lead is an example of anchoring old messages and being very unpleasant to me for saying the message has to move on - that’s entirely perverse imho. If your the voice that REPRESENTS then you should be ears as well.
There’s more but this isn’t a safe space to say it
My wife, aged 69, with none of the typical risk factors, had no FAST symptoms.
First sign was a severe headache.
Then violently sick several times.
Unable to remember how to turn off the tap!
Sight affected on one side.
Over the next 20 mins or so went into a coma type condition but occasionally talked (“I’m frightened”, “What’s happening?”, " I’m so cold"
She survived a further 24 hours…
In the previous 8 months she had experienced several migraines for the first time, several headaches (not usual), episodes of eye pain and, 6 weeks beforehand, severe vertigo.
For me, valuable time was lost when the paramedics arrived because they weren’t responding to the urgency of my crisis. As I was vomiting and couldn’t stand up, the first thing they did was go and check a bottle of wine I had on my desk. Then they attempted to persuade me to go to bed and “sleep it off”. I was adamant that I needed urgent hospital attention. I wish my stroke consultant had been on duty the night I went in because none of the other staff were aware of these symptoms correlating with possible stroke.
Your experiences are central to my upset with FAST @rups
It is a badly positioned message, not per se bad guidance of in context.
My concerns are then how resistant the Stroke Association staff are to pointing out that it’s no longer the acme of insight so the assoc should LISTEN to those they aspire to represent.
There must be a back story (beyond once being the turbuculosis soc. & then having to find a new cause.
My backstory is that with more awareness I might be in a better place now AND so might many others & that saying so has resulted in hostility & non cooperation, “instruction” to not speak out publicly about FASTs shortcomings.
Not willing participation in improving messaging. I don’t see how that gels with the published ‘value’ of “say it how it is” and goals A&B
I’m still hoping that we might become organised to be a voice - that doesn’t require inclusion of everyone but should be open to everyone.
Caio
Simon
Not too sure I want to be driving feeling like that 
