Stroke - the poor relative 😢

Every 5 mins somebody in the UK has a stroke, and yesthere was a campaign on tv a few years ago but nothing since, and not all stroke victims present with the same classic symptoms.
Stroke lags way behind heart disease, cancer, and dementia when it comes to fund raising, research, and support services. Hence my title that it is the poor relative when it comes to getting the attention it needs. There just isn’t the high profile image, often celeb driven, that leads to highly publicised fund raising events.
This is mainly because of the mistaken belief that stroke is an end of life issue and not one that can affect people of any age, and the the knock on effect is that top scientists and researchers as well as specialised medical staff are therefore not attracted to Stroke as a career choice.
Yet stroke patients are one of the biggest drains on the NHS financially so not investing in this makes no sense whatsoever.

Unfortunately, its the same with all illnesses and diseases where you need a lot of after care, its a bit of a postcode lottery. In some areas the after care even for strokes is reasonable. In some areas its non existent and in others its very little. There ae often some Health Authorities who will pay for expensive drugs and other who will not. I am sure that there are some support organisations out there but maybe not local. I didn't even know there were support organisations for my husbands disease (not stroke) when we first found out. I would have used them if Covid-19 hadn't gotten to him first. Maybe try searching on line to see if you can find some support or at least someone to share ideas that could help you both.

62Granny

Thisismyname1953

There is a lot of research into stroke . The most important thing is to get the person to a hospital as soon as possible . When calling an ambulance state that you think the person is having a stroke , even if you’re not sure . With a blood clot speed is essential . A blood clot caught early can be given medication to break up the clot and either stop the stroke or minimise the results and damage.
Obviously they can’t tell if the stroke is caused by a clot or a bleed until tests are carried out. Both have devastating results but both can be helped .
There has been an advertising campaign on the tv for a long time warning about the need to act fast .

I just want to say that telling the 999 service you think you have had stroke DOES not get you priority these days and waiting times can run in hours. I was told when he had a second mini stroke in 2020 to get him myself, He had blood test and a scan to be told hours later if was a TIA and given an aspirin and appointment for follow up a week or so later.
My DH was lucky as it was pre Covid the first time he did get the clot busting drug within the time frame, but he was still left with mobility problems so it isn't always the silver bullet it is described as.

That is so true 62Granny.
I dialled 999 immediately when my husband had his Stroke eating our evening meal. My son held him up on the dining chair so he would not fall on the tiled floor and I ran to the phone.
I told them it was definitely a Stroke and it was urgent. They took one and a half hours to get here! By the time they got here he was unable to speak and had wet himself and we were unable to move him. Later I complained and was told they were “exceptionally busy”. I was not impressed.

In total it was 2 and a half hours before we got to hospital even with sirens and blue lights. They did ring ahead and he was scanned straight away and were told within minutes it was a haemmorhagic stroke.

So even though we had seen the Stroke adverts and knew what it was we were totally in the hands of the ambulance service.

I agree that a stroke is not classed as a 'sexy' illness. Following my stroke I was part of an NHS committee looking at strokes, diagnosis, treatment and after care and suddenly the funding was withdrawn

I find it odd that mental health problems, to do with the brain, have been given so much publicity with sports personalities and even Prince William and Harry publicising this. Yet the biggest insult to the brain - stroke - is a non starter.
In a way I see it as ageist - a big mistake because young people can have strokes - with people turned off by the thought that this is an old person’s thing.

We have CHAS in Scotland Chest Heart and Stroke. I had a 2nd heart attack ,2018, and whilst stenting surgeobs dislodged plaque and a small stroke occured. They obviously knew immediately and I was very lucky as they must have got clot busting drugs in right away. Lost my speech but came back within a few hours🙏. Life has changed but luckily 95% ok and still driving etc. It was a long haul though and as you say not a lot of support after initial 6 weeks. I found it really hard and my adjustments have been minor. A stroke is devastating!Thinking of you and your hubby.🥰

Thanks Mojack26
I can imagine you will have found it hard, any injury to the brain is a big deal.
And of course you have had heart problems too.
Wishing you all the best 💐

There is a wonderful book titled My Stroke of Insight, by Jill Bolte Taylor, that describes the author's experience of a haemorrhagic stroke. Jill (who is, ironically, a brain scientist) woke up one morning and realized she was having a stroke. She lives alone, but managed to call for help, even though her speech was affected. Subsequent testing revealed that she had a haematoma in the left side of her brain. It turned out that she had an arteriovenous malformation (essentially, blood vessels that didn't form properly) and that this had ruptured. She eventually underwent surgery to remove the excess blood.

It took several years, but Jill eventually reached a point where she considers herself recovered (her words). She has in her book some guidelines and recommendations for caring for someone who has experienced a stroke. Jill's mother cared for her for a time following the stroke, and they had a very interesting attitude towards her recovery. They decided her brain knew what it needed to heal, so when for the first several days, Jill would often sleep for hours and then be up for about 20 minutes, they honoured that. When Jill was awake, her mother would put something into her hands for her to do - activities that would help her relearn skills that had been affected by the stroke. Jill conceptualized her brain as a large set of file cabinets, with some files affected or destroyed by the stroke. If a file didn't exist anymore, they recreated it. One time her mother offered her a choice of options for lunch, including tuna salad. Jill wasn't sure what tuna salad was. Her mother described the ingredients, and then made it for her for lunch, so she could replace the tuna salad "file" in her brain.

I’ve had 2 strokes,was hospitalised and recovered well.My blood pressure at the time of both strokes was 265 over130.
My arm went numb again the second time and I knew immediately that I was having another stroke.I had the first stroke 7 years previously and I am very active.Before the second one I kept going to my GP complaining of severe headaches.The headaches came on every afternoon for 9 weeks.I was actually on my way to the hospital for a brain scan when I had my second stroke.Again my blood pressure was sky high and would not come down.I am now on blood pressure medication which I stick to rigidly and anti coagulant daily.It is so scary having a stroke,especially when speech goes and movement.I am now fully recovered and living as healthy a life as I can.

My mom must have had a small bleed which affected her speech. Otherwise she seemed fine. She lived next door to a GP who said she had a water infection. Her own Gp also said the same. Within 48 hours she had a major bleed on the brain. She never spoke a word after that. She existed for years in a home. She was incontinent, had to be spoon fed and had an awful existence. Before that she was so outgoing and loved life. Nursing care was pitiful. I hated visiting her as she rarely acknowledged me and often kept her eyes shut. It was before covid so I was unable to have DNR on her records. Yet my friends husband had DNR placed on his records without consultation during covid despite the fact he was only 57.
If you think someone has had a stroke do not go to your Gp. Go directly to hospital
If you walk funny it may be a water infection but talking oddly needs immediate attention

Am so glad those who have had a stroke or had a loved one who had a stroke are giving vital information about warning signs to look for. As I posted earlier, a headache or neck pain which is persistent or high BP must be checked out, also any problems with speech, confusion, or sudden difficulty moving - heavy limbs, as well as classic stroke symptoms. I imagine it could be put down to a UTI because in older people this can cause confusion but as the previous poster said would go to A&E rather than the GP and mention fears that it could be a stroke because otherwise you will be kept waiting hours, and time cannot be wasted.

Primrose53

Yes, Stroke is devastating, life changing and very cruel. It can happen at any age. We receive news letters from the Stroke Association and this month they feature a 7 year old boy who is now in a wheelchair following a Stroke. His Dad has given up work to care for him while his Mum, a teacher, carries on working. They have other children too.

I know several people who have had strokes recently but are able to walk, cycle, even drive after a few months. A couple of them are now badly affected by depression and anxiety now. Unfortunately my husband’s first Stroke Nov 24 was major and he is still in a wheelchair and only able to use one hand which is not his dominant one. A second stroke at end of May 26 has made his speech and memory much worse. He is unable to stand unaided, has to have his food cut up, still sleeps in a hospital bed downstairs and cannot enjoy his hobbies like horse riding, motorcycling, walking, DIY, holidays abroad etc.

We have had little in the way of support. The GP just nods and says he understands but says he is lucky to have survived. Husband says otherwise! We tried a Stroke support group a few times but they were all pretty able and rather cliquey. Physio we now pay for privately, £110 an hour as NHS support is non existent. I have pushed to get more NHS speech therapy and we have been allocated about 6 sessions but they made it very clear that will be it. I found a gym that did lunchtime sessions for stroke victims and I took my husband for about 6 months then it closed.

Everything is now down to me to organise. At the moment I am physically and mentally (just about!😉) able to do this but further down the line I may not be able to. Then what?

I sympathise so much for everyone on here whose lives have been affected by Stroke. 😥

If I win the Lottery I am buying a big bungalow fully wheelchair friendly, employ a full time support worker or nurse to take over all my jobs like encouraging him to do exercises, speech therapy, try new things etc.

First of all. Why is the Stroke Association not better publicised?

You sound worn out. The only thing l can think of to maybe help you look after your husband more easily.

Is to look at YouTube videos. Nearly all American made by US physiotherapist who can show you some helpful exercises for him to do

Have you contacted Social Services to see if can be assessed for support and maybe some helpful equipment? Respite Care!

Also, see if there any local Good Neighbours group who can help you.

Best Wishes
😻👍
X

The Greek and black communities are more likely to suffer from sickle cell anemia and thus more likely to suffer strokes. Young children can have strokes. Yet the much needed support is sadly lacking .
As strokes are not unusual, I think children should be taught how to use both hands to write and do other tasks . So much more difficult to learn when older.

I can really relate to this. My heart goes out to you.

Without going into too much detail, a much-loved family member had a stroke in their 40s just over two years ago. It turned two worlds completely upside down - theirs and that of their spouse, who is now their full-time carer. A hospital stay of three months on a general ward. The patchy home rehabilitation stopped altogether over a year ago. I firmly believe that, because they unfortunately have a catalogue of medical conditions, they have been abandoned. The reasons they give for the rehab cessation cut no ice with me at all.
It really seems that it’s a ‘forgotten’ condition. The carers of stroke survivors are forgotten, too.

Quick response is vital, but with our ambulance service so stretched and abused the immediate care might be delayed causing more damage.
My brother needed speech therapy - never arrived. The left hm in bed until HE made enough noise to get help; they got him shuffling and sent him out. His cognition is impaired a little but not noticeable enough to get help - this is something that is often ignored.
I see elderly stroke patients being given far too little physio/ therapy to get them active and towards "normal" again. This must cost the NHS more to keep them going in impaired state than if they worked hard in the first place.

Fallingstar,
I'm a bit late to this thread but wanted to sympathise with those who dont have much support. This happened to us about 4 years ago and we've had so much support from an amazing Brain injury and trauma centre. We were referred to them by the NHS Early Discharge team. There was a short waiting list, but all the support is provided free of charge. Initially its for 6 months but longer if needed. We were assessed for the level of rehab needed by the various therapists. All therapy is given at the same centre, so there was a gym for physio, speech & language, and occupational therapists and psychologist. They all liaise with each other so no repeating details of what another therapist has provided. They also offer free support for the Carers too. Sadly it's largely funded by charity. There seems to be a widespread shortfall of these centres so we are very grateful that we weren't too far away from one. They were truly amazing.