Stroke - the poor relative 😢

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.

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.

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.

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

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.

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

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.

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.

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 💐

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.🥰

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.

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

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.

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.

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.

A lovely man we knew (in his 80s) had a severe stroke and was left with limited speech and movement. His rehab care on the NHS was very limited so his wife sent him for private care for a few weeks but he didn't really improve much.
He lived for about six years with a good quality of life because they paid for 24 hour living in care and installed all the equipment that they needed. Heaven knows what it cost but his wife always felt that it was worth every penny.

I agree. I know s lovely young man,29 years old, who I have known most of those years. He had a stroke gouple years ago. He didnt know what it was but had trouble with his eyes, went to opticians who sent him straight to hospital! He is ok but it has affected his one eye (now Little vision) and his hearing. I have high cholesterol so am aware of the risks but my Dr's surgery is getting worse by the year. Even the nurses who do bloods say its a total shambles and very poor. When you have to remind them to book you in for blood tests so that they arecready for a follow up appointment they sent it is worrying.

My Father had a severe stroke in 1976. He was paralysed down his left hand side and could not speak.
He was moved from the general hospital to a Geriatric Hospital - places that no longer exist- but this did provide some respite for the carers and was completely free. He came to live at home later and my Mother looked after his every need until he died about seven years later. BUT the Geriatric Hospital provided long term respite every other weekend, sending a taxi on the Friday and bringing him back home early on Monday mornings. With that extra support, my Mother, who was well in to her seventies herself, was able to carry on looking after him until his death.
How sad it is that there is so little support available now - fifty years later.

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.

Same here DH was 62 having his stroke, although he was a T1 diabetic for 15 years before that, he has always been slim, non smoker, moderate drinker and even his diabetic consultant said he was the last person he expected to have had a stroke. Care has been patchy and time limited after care under the NHS, although he goes for BOTOX injections every 3/4 months. We pay privately for rehab exercise . There is a local, award winning , whichstroke group which we attended for a while but he didn't really gel with it, but that's just him and it made me anxious , so we stopped attending. We are 9 years down the line and if I am honest mobility is deteriorating . We are living with it but I am wondering what will happen in the future.

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 agree 100% with OP .My DH also had a stroke 18 years due to AF which affected his mood vision memory word finding etc . Yes hes improved an awful lot but some effects are permanent. Somehow I think having a stroke doesn't get much support in general. Maybe because they are all different. Its good that Gransnet is highlighting stroke support in this thread . We did get some support from our local think ahead stroke association at Ashland house in Wigan but other than that very little was given . I do think stroke survivors should get more support and fund raising. Apart from anything else it can affect all ages and is so common . It doesnt seem to be discussed enough .

I know quite a few years ago, it was common to see ads on TV telling how to spot the signs of a stroke. FAST - they were common for about a year, but why don't we see or hear them now?
Around the times of the ads, my daugher and I were working together in an office. One early morning she answered a call from our site manager and I heard her asking him some odd questions "Can you raise you arms up and hold them there?" was one of them - she looked at me and said "He's having a stroke". She got him to pass the phone onto someone else, and I heard her ask him questions, she asked how long he had been slurring his words, had his face dropped to one side, and then told him to call 999.
He had already left site and was going home, so she called his wife and told her to call 999 and say he would be there in about 5 minutes. The ambulance was brilliant, they arrived the same time as Chris, realised he was having a stroke and took him straight to a&e.
The whole scenario was scary (including him driving!!) but he did get some urgent help. Sadly, the after effects took his life 12 months later.
We need to get FAST more widely known again.

Shel1951

Reading other posts some like a lady I know had 2 strokes and still can walk talk and climb stairs,unfortunately that's not everyone, I believe my husband didn't get the help because of his age and ability to recover enough to get benefit from extensive physio, a younger man in the bed opposite my husband was transfered for treatment to a specialised rehab, DH Didn't qualify, he has no use of his left arm and his leg drags, we had to sellup and move to a bungalow as our bedroom was upstairs, sometimes he loses sight in one eye,though not completely, there is hope for some,a lady at the church had 2 strokes 4 years apart and regained use of her limbs etc after time, just says one hand is weaker ,
And at the physio dh had there were others that were much more mobile,one lady drove herself to it,
I just keep on hoping and praying God's will not mine whatever that will be.

Stroke is such a broad spectrum, on my DH’s ward were patients who were full conscious, sitting up in bed chatting and eating, who were able to walk out a few days later, on the stroke association forum there are people contributing on there regularly but my DH can no longer write or read, and cannot use his phone without help. Some return to work and can still drive and do most of what they did prior to a stroke.
Others, like my DH, are bed bound for months, on oxygen, fed through a tube, wearing a pad, and unable to move without assistance. Their recovery will not be so good and their quality of life will equally not be great.
It is a lottery. A stroke is like a bullet to the brain and it all depends where it hits and how badly.

Further to my earlier post, I had attributed my change in personality to the effects of the operation and the somewhat uncaring nursing care I had received afterwards. Once the stroke diagnosis had been confirmed with a brain scan, it enabled me to understand what had affected me mental condition. Until then, my husband had been puzzled by the change in me - from being an outgoing, generally positive person to being depressed and overly emotional.

I am fortunate not to have suffered any noticeable physical limitations from my stroke but I was still grateful when Simon responded to my post on the Stroke Association forum and invited me to join the online Stroke Café. There I found a welcoming group of people, most of whom had suffered debilitating physical effects from their strokes. Sharing our experiences made me realise that I needed to pick up the threads of my life again. I’m pleased to say, I have returned to being on stage with a local amdram company (mostly walk on parts!) and last year, I sang in a successful performance of Bach’s B Minor Mass. This proved to be a challenging but satisfying experience although tiring!

I cannot recommend enough the value of interacting with fellow stroke survivors in sharing information and giving hope in a way that medical professionals, however expertly trained, cannot hope to do.