Hi I would like to share my story and hoping others can give me some advice and support. On Friday 21st June my 55 year old husband left for work at 7.30am. We live in a lovely village in Cheshire called Parkgate. We have a 19 year old son and a 14 year old daughter and two dogs Benji and Chloe. He works in our local pub as a maintenance man and I have my own beauty shop, life was good and we were looking forward to the weekend. I received a phone call at 12pm to say he had collapsed at work from my son. When I arrived there was an ambulance already there. I honestly thought he may have fell from the ladder as he hates heights and
had been painting that week. However his face was dropped and he was sweating. the ambulance crew told me he had suffered a stroke and his BP was reading 250/120. We were rushed to arrowe park and straight through to resus. After what felt like hours my son and I were allowed to see him and we were told that he was lucky to have made it to the hospital, he had suffered a massive bleed on the left hand side of his brain, which had affected the entire right hand side of his body. The consultants asked me would I like to take
part in a trial that patients receive an injection that could stop bleeding, I was in a daze, I agreed and said anything to help him. He was then transferred to the acute stroke unit and put in a side room. The following hours he was monitored every five mins and they were struggling to get the BP lowered. On the Saturday morning the doctor told me that he had contracted pneumonia and there was nothing that really could be done, apart from make him comfortable and that I should consider a DNR as it would be unfair to inflict further pain. I honestly thought I was going to collapse and was waiting to wake from this nightmare. I asked all our immediate family and friends to attend the hospital that day and I spent the evening at his beside with my mother. On the Sunday morning another consultant came to see him, she was looking at him and then asked me to step outside, I braced myself for the news. She sat me down and said he was very poorly, but…she felt it was SURVIVABLE. I broke down, she told me she couldn’t guarantee he would live and the road ahead would be very long, but she was going to try, she ordered a feeding tube and said he would be given antibiotics to try and fight the pneumonia and various BP medication to try and get on top of the BP. She felt the bleed was caused by the BP and that the swelling was so intense they couldn’t rule out a tumour and if this was the case he would be transferred to Walton Neurology, but her instinct was it was BP driven. We are now over four weeks in. My life and our children’s has been shattered but he is here, he is alive. Over the past four weeks he has pulled out 6 NG tubes, and was put forward for a PEG procedure last week, which was successful. He has been receiving some
physio but is so weak.He has again this week contracted a chest and water infection (due to a blocked catheter) and the chest infection could be from the PEG. Everyday I get up, make a coffee and wait for the phone to ring, if it doesn’t I just countdown the hours to visiting. The medical team seem to have got on top of the BP and said his infection markers are coming down. But im absolutely terrified of him getting more infections, and not making it. When our son visits, my husband sometimes gives him a thumbs up, he did also cry when I played him some music, but this past week he has been so poorly. They have said they will put him forward for rehabilitation at Clatterbridge once he’s “medically fit”. He has lost so much weight and I just keep praying he’ll keep fighting. Please if anyone can offer any words of help or share your similar stories I’d be so grateful xx
Nicky,
hello. Nasty business ; hang in there, and have complete faith in his recovery!!
I too suffered from a bleed, with BP 269 / 198 (not a misprint) 2 years ago / age 57 now 59. Not survivable according to the medics; but it was and is survivable!
I have a way to go with my rehab, but I work hard ; my wife, a Chinese doctor, and a radiologist and the odd physio are part of my team
You can read quite a lot about me, I’ll just say that my life has changed with a new purpose ! To recover, and I certainly go for it !!!
good luck, Roland
A painting of an old mill I did yesterday
Goodness me! What a story. Thank goodness he is here and has passed the worst. We must all hope that our recovery will come right in the long run, sending healing thoughts to you and the family
@NickyEvr Hi & welcome to the community. What an emotional roller coaster of a ride you’ve been on already. Thank goodness for the second dr who gave you all hope & started the treatments needed. It sounds like some progress is being made & once they get on top of the infections he’ll be able to start more of the recovery process.
@SimonInEdinburgh has covered most things so I won’t repeat them but there are many people on here who prove the drs wrong & make plenty of progress despite being told they won’t.
It won’t be easy & you have a long road ahead of you but with bucket loads of patience & determination you can make progress.
It is important to look after yourself too. Very important. Take time out for you when you can & don’t turn down offers of help. You’ll need them at various points no doubt.
Wishing you all the best of luck & please do let us know how he is getting on.
Best wishes
Ann x
Hi all thanks so much for your replies. They have given me great comfort and I feel like I have somewhere to turn too. Si has now contracted covid which apparently is rife in the ward and hospital. He has been put back into a side room and they are continuing with the anti biotics for another two days, they were due to finish today for the second infection he caught. I was told yday but the first doctor I saw (the one who gave me the bad news initially) that all his infection counters are coming down? His had a x ray and another ct scan, the bleed is reducing and his chest x ray shows no pneumonia just a few secretions at the top of the lungs, he said he’s hoping he can be moved to a rehabilitation centre at clatterbridge as soon as next week!!! I do want to believe this but I just can’t get too excited but I’m praying he fights this covid and we can move forward xx
@NickyEvr sorry to hear Si has caught covid. It does seem to be on the rise everywhere at the moment. Hopefully he’ll get through that quickly and then be able start the stroke recovery process. Fingers crossed he does get to the rehab centre soon. It’ll be better than the hospital for him i’m sure.
It’s good that his infection markers are decreasing & that the bleed is resolving.
Best wishes
Ann
Thanks for your message Ann. Si was much brighter yday but the hospital have told me the doctor who said he would be going to the rehab centre next week really shouldn’t have said to me 
. I was wondering if anyone (maybe @pando as I know you had a similar episode to si) could shed light on the speech side of things. Si can’t speak at all, we get the off thumbs up 
and he does roll his eyes when we say certain things in a sarcastic way 
) it’s five weeks tomorrow and I’m wondering if the longer he doesn’t talk the worse he will be at recovering that? Xx
Hello Nicky,
I had aphasia only for a week, until my body cleared up the blood-brain barrier breach. This was lucky because most speech centres are in the left side of the brain.
ciao, Roland
I am genuinely worried I won’t hear him talk ever again, he does make grumbling noises but because he’s been so poorly he hasn’t had any speech therapy since he arrived at the hospital
Thanks so much your reply Roland xx
Wait a min, Nicky
Have you read or followed Linda Radestad’s story ? Her book, Stroke Rebel tells about how she could not utter a word after her stroke. Now she can talk enough to make herself understood. I follow her course, with Arjan Kuipers called Brain Rehab and it’s the best resource on the internet
good luck, Roland
Good to hear that Si was much brighter yesterday. I guess the rehab centre might have to wait a bit longer. I’m sure he’ll get there when the time is right but whilst he has medical needs that need treating he is in the right place.
Hopefully the speech therapy will start soon and once it does he should start to improve. As with other stroke things it’s a balancing act of dealing with immediate needs then starting the therapy etc. I suspect a delay won’t affect him longer term as long as he starts to work at it when he is able to.
Best wishes
Ann
Thanks Roland I’ll look that up now. Thanks guys for your replies also @SimonInEdinburgh @Mrs5K The speech therapist visited si yday and said she believes there is a swallow there now also, I’m hoping she comes again today to see him xx
Firstly, I’m so very sorry this has happened to your husband and your family. I know how deeply traumatic it is. My 77 year old mum had a massive stroke in February and came home 3 weeks ago. She went through a nightmare of a time -with pneumonia due to aspiration, UTI due to catheters, right side paralysis, aphasia (she can’t talk much at the moment) and is doubly incontinent. It was hell, I can’t lie. But she got through it.
I was there almost every day and my step-dad was at her bedside daily - for 5 months. I have a few choice words about her stroke ward in Ipswich Hospital, but I’m sure your husband will get better therapy where he is. Ipswich unsafely discharged my mum in the end and my instincts were tell me they were rushing her out in the end, so follow your gut throughout. As I said I’m sure this won’t happen to your husband - it sounds like they’re doing everything they can for him.
Question everything you’re told (you’ll get to know the terminology and the processes which is invaluable) and make sure the physio and speech and language therapists are doing their job properly when he’s ready.
Being there for him is important and you know him, so when you see the little signs of progress, encourage him.
As for you, pull in as many favours as you can from relatives and friends at the moment. If you’re too tired to be in hospital, ask someone else to sit with hubby for instance. Getting your rest is really important as it is a very intense roller coaster ride which may continue for a while to come.
All I’ll say now is that if my 77 year old mum can get through the other side and back home to continue her therapies, then I am positive your husband can too.
I’ve also spoken to other people who’s partners and parents of all ages - including elderly - who are recovering from massive strokes. It takes a long time and things may not be the same however, don’t let your mind run away with you. Take it hour by hour, or day by day.
Sending you tons of love - hang in there.
x
Thankyou so so much for your message. Would you mind if I knew your name and if I could message you directly. Your message has given me great comfort thanks so much Nicky xxx
Hi all was just wondering could I have your input on low mood. The nurses said yday that they are worried about Si’s mood as am I. He looks completely miserable and fed up which I’m sure he is after five weeks being in bed and so sick. Is there anything he can be prescribed to lift his mood so you know? They said they would be reluctant to prescribe anything xx
I think about him, Simon
some of what he went through still haunts me, because he had it rough. Anyway I would love to know that he’s still hanging in there, or better still improved his condition. Do let me know if you get any news,
ciao, Roland
H Nicky,
Take him a piece of sage (or similar) and put it under his nose ; I think he’ll react positively
ciao, Roland
Your post really resonated with me.
In October 2021 my husband suffered a stroke caused by a clot on the brain and then a big bleed a day later. The prognosis was poor. It was such a shock for a 65 year old, previously fit man. He was in a coma for weeks and in hospital for 2 months. We were in Spain when it happened at the tail end of the Covid pandemic, which made things even more difficult.
Nearly 3 years later and he has made a pretty miraculous recovery. He has worked hard at his rehab and is now walking, unaided and can do 5kms. His left side was badly affected, especially his left hand and arm but recently he has been able to tie his shoe laces and fasten his right shirt cuff button with his left hand. He can also use cutlery again. All these little triumphs are great to see. Encourage your husband to do as much as he can to aid his recovery. We were initially told that the first 6 months would see the most progress, but that’s not been our experience.
Look after yourself as you’re going to be hugely affected going forward. One day at a time is good advice. My heart went out to you when I read your post. Wishing you and your husband all the best.
Sending healing vibes and lots of positivity.
Christine xx
Hi Roland, thanks so much for the sage advice. I’ll do that tomorrow. I’ve taken a day off from the hospital today but my mum and son have been in. He is watching the tv in his room and my son said he seems a lot better when he’s there (our son is only 19, and loves his dad so much, it’s really affected him). Si is off oxygen, (levels are 94% but he is still fighting off covid) off antibiotics, canula out of hand, being fed through the peg, now on blood thinners and I’m hopeful there’s a swallow. My son said he gave him a tissue and si wiped his own nose and gave him a thumbs up again. I’m praying this good spell continues and he gets to the rehab centre xx
Hello Christine
Thanks so much for your lovely message. I am so happy your husband is recovering well, it gives me fresh hope 
. Si is just over five weeks now and I suppose we have come so far, but it feels like a snail pace, which I was told. We still have no speech, but he definitely knows what is being said, and can wave, thumbs up, wipe his nose…he right hand side is still completely numb but they have said he will have some Botox in the arm next week to help the tone. His BP now seems under control so I’m hopeful he’ll get the rehab centre xxx