i just have a question which i really hope someone can answer
my husband had a hypoxic brain injury 19months ago his recovery was very very slow the first year up until april when he started to walk and started to engage alittle more he had speech therpy who gave up on him about a month ago and said he has global apasia which i think is not true he can talk understand and write and said my husband will never be able to talk so discharged him from the coummunity rehab
its been about 3weeks now my husband is actually commuicating very well even tho sometimes you can understand what his saying but is actually talking in sentences
my question is does recovery stop at after 2years of brain injury? and my second question is has the community rehab team actually helped anyone on this forum cause they have always put me down and it really upsets me first the physio said my husband wound never be able to walk and he proved her wrong and now the speech therapist
it would be nice ro hear from other peoples experience on community rehab
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fity123r
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the 2 year recovery seems to reflect medically and may not mean recovery is over.
My bi was over 20 years ago so i was hoping rehab would have improved.
I ended up having private care and rehab. It seems comunity rehab can be qick to discharge you if you do not improve in the time frame.
I questioned the 2 year recovery as i was improving 4 years plus. I was given another assessment and medically i hadnt improved after the 2 year stage.
It seems as you adapt to the next challenge your life improves even if you dont medically.
As for rehab if you think there is improvement to be made shout and hollow, even stamp your feet to try and get rehab restarted.
thank you for your reply i would defos push and push but there is so much a person can do the journey of my husbands brain injury has been horrible first they discharged him from hospital without any comunity rehab than for about 6months it was no rehab at all when his at homw with me than in febuary i got our gp to refer him than in march we had physio who upset me sayin he wont walk but he statrd walking by the end of april than the speech i just feel that the whole community rehab thing is a joke they havnt got a clue whats actually happin but give there own suggestions i feel that i see improvemnts in my husband that they cant see
oh how i wish things had change over the years, but it seems they havent.
I was in and out of consciousness after being in a rta. Apparently i was argumentive and disruptive on the ward as well as still vomiting.
I was discharged with no aftercare in place. Years later it came to light i had discharged myself, yet my wife was told i was fit enough to go home but keep an eye on me.
About 2 weeks later my gp went mad as he thought i was in rehab. It took about 18 months to get a full diagnosis. The cut off for rehab is 12 months post bi.
My wife battled for years as i was told i would not soeak or walk again.
My speach is fone, ok i make the odd mistake and say the wrong thing. I also at present walk without a stick most of the time.
Ok it wasnt an easy journey but looking back i have done a lot better than was told i would.
My son sustained his TBI in October 2018 at the age of 22. He spent 3 months in hospital and rehab. He was desperate to leave the hospital rehab and so they agreeed to discharge him home. Home for us is Shetland where we have no community rehab at all!
Yesterday he had a zoom meeting, yes a zoom meeting one of many, with a neurologist who said that even now after 4 years we should continue to notice small improvements in my son. It is now known that the brain continues to heal way past the two years.
You know your husband better than they do just keep moving forward one day at a time, it is hard but you will see improvements. Keep being his voice.
hi theosnan thank you for ur reply how is your son doing now after 4years have things improved from when he discharged himself from the hospital yes your right it is a very hard and long journey my husband has just turned 35 last month when he had his injury he was 33 things have improved which to be honest i can see only the professnals say oh at this stage of the brain injury he should be really doing this and that which really annoys me
Hi fifty123r sorry for not replying sooner. Thankfully my son didn’t discharge himself from the Neuro rehab unit but was so determined that he was their quickest patient to go though rehab and be discharged home!
My son is amazing for what he’s been through. He’s managing to live independently, with us his back team sitting in the background to help out as and when needed. We usually see him on a daily basis as his 6 year old son lives with us. He has also regained his drivers licence, after travelling south to take his driving assessment . He can become quite frustrated as he just wants to be able to get on with his life and is fed up with ‘jumping through hoops’ and ‘having to answer to so many people’ (the professionals ) as we are still waiting for the outcome of the HSE investigation and have a civil claim in progress for loss of earnings which is tiresome but needs to be done.
Can I ask how your husband sustained his brain injury and how he is doing now?
thank you for replying back to me im glad your soon is making good progress my husband sustained a hypoxic brain injury from a cardic arrest nearly 2years ago the journey has been very slow his cognition is still very bad physically he has improved alot but mentally he still needs 24hr care which gets very hard for me as i work i do have my nephew who helps me out i really wish his cognition gets better x
Hi, I am sorry that this is your experience. Unfortunately from my experience of community services, I wonder if any of them are any good, not just with regards to rehab. At one point, I had brilliant support, a fully integrated, multidisciplinary team. When I moved, nothing, underfunded, poorly staffed, poorly skilled, sub standard that has only got worse. I worked in the NHS, so know what was once available, what best practice should be, sadly it has been decimated. There are still pockets of good service. Wish I could be more positive 🍀
So sorry to read about people's bad experiences of community rehab here. I must say I've had a different experience. As well as a few other medical problems I had a stroke mimic in 2016. The hospital discharged me into the care of a community rehab team and they were brilliant. I didn't lose my speech but I couldn't walk at all. They visited every other day, listened to me, provided advice and exercises to get strength in my legs back, made sure I could still cook for myself, taught me relaxation techniques and eventually supported me to walk round the local streets. Really hope you find the help you need from somewhere.
I am in Canada do my experience re rehab doesn't really apply. Basically I paid for some physio and that was it. To save money here all the programs are in the hospital , but I could not go to them because my symptoms were triggered ny nouse, light, and visually busy spaces. So, basically I fell over before Iveven made it to the reception desk.
So, I did and am doing myself. Basically i looked for things that were a bit challenging but not too, and that included computer games - a lot if yhe ones for children can be found online free and those are what I did.
Plus i had to learn to stir and those sorts if things - no in home help given for things i could not do myself, sink or swim. I broke a lot of dishes , and found an instant pot a grwat way to cook without burning pots or food. Great time saver, you may want ro try one.
Anyway, part of the point is if I had had someone to do it all i wouldnt have got as far.
I still really struggle with s.ome things, like sorting and organizing.
I was told by a highly regarded neuropsychiatrist that the healinf happens fastest up unto the 3 or 4 year mark, and keros continuing though slower and there would be residual effects put no way to know which ones.
So yes, more healing can hapoen. Get help if you can get it, fibd ways to work on it on your own if you cant.
I'll say let the injured brain decide. It is working on things behind the scenes and gas ways of letting you know where it wants to go. It is not a straight line. Having a curiosity about it, and observing acceptingly, can really help. Keep a log. Weather can impact things, certain music or colours or emotions - who knows. When you take notes it can be eadier to figure out.
If you can get him an appointment with a neuro psychiatrist or a osychologist sometines they can get him in for other therapy. Dont freak at the psychiatrist thing , historical the medical people juat shoved everything in that category that wasnt visably broken or bleeding. Even the study of vitamins ended up there. Thevbeuro psychiatrists can rx medications and the psychologists can not. Medications help some folks a lot. They can he very helpful when depression or other things kick in - not uncommon.
Take anything a medical says with a grain of salt. Mostly, they don't know. Everybody is a bit the same generally but also different because it depends on the injury, what kinds of things the person did a lot in the past, and how good they get at chipping away at it. ...aka problem solving.
I have also heard it is not is not uncommon to get so many sessions of rehab and then get the door.
You have to keep shaking the bushes, and after a while shake them again. If a doc isnt helpful see a different one. A lot if them are not bi literate or think they are cause they had one patient and then think all bi' s look the same. No, they do not. Some of them only got 15 minutes on the topic and maybe they missed that morning.
You'll get a tough skin and learn how to keep your poker face and learn when you need to growl etc.
It is a tough road for most, one way or another.
Lots of people here have been through the wars so have great ideas, asking questions here is good.
thank you for your detailed reply it really helps this forum has really helped me get through this like you said keep pushing and pushing and thats what im going to do im not a person who will easliy give up but the journey is so hard and long x
My husband had a very severe stroke in 2018. He has aphasia and walks with a quad stick and has a wheelchair outside. He went to residential rehab which was brilliant and got him walking again. When he came home we had the community team. The physiotherapist was awful. He was supposed to have a package of 6 weeks treatment. On her first visit he was walking downstairs from the toilet and she said I will discharge him he can walk downstairs. I insisted that she did the 6 sessions but it was like pulling teeth. She would give good advice if I asked specific questions but nothing was forthcoming without me asking. I was so disappointed with the service I went to the doctor and told her about it she referred my husband for neuro physio at the local hospital who were brilliant.
My husband has aphasia and I think if your working memory has been damaged it is difficult to regain meaningful speech. If you are in London University College London are very good and have speech therapy clinics run by their trainees and research projects you can volunteer for.
thank you for your reply im from birmingham and down there isnt any rehab places its quite hard to actually find one i know about short term memory and long term memory but what is working memory sorry for the question but honestly i really dont know what is working memory
can your husband read write and understand as my husband can so i just dont understand why are they saying aphasia ? x
My husband couldn’t read when he first had the stroke but can now read short sentences. He understands the general gist of what is being said but often wants things written down to clarify. He has difficulty understanding who I mean when I say peoples names, the names of colours, letters and the name of numbers are also difficult although he can still do quite complex sums even though he doesn’t know the name of the number. Very strange. I think working memory is the organisation of short term memory into a list of steps to complete a task. The speech therapists thought that my husband had very good social skills that masked his lack of understanding. I didn’t think they were right but as time has gone on I have realised how much he doesn’t pick up.
Hi, my husband had his TBI 3 and a half years ago. He has continued to improve over this time, especially when he was tested for hormone therapy. I don't think many people know that a brain injury can damage the pituitary gland, causing hormone imbalances. My husband was tested and found to be lacking in growth hormone, he now has daily injections and it has helped. Not with the fatigue, unfortunately, this is still the worst thing. Good luck.
thank you for taking your time to reply yes ny husband does have fatigue and it is really bad like his always tired im glad your husband is still improving after 3years x
Community rehab? What is that? My hypoxic brain injury was 47 months ago and no aftercare was arranged for me. I have been like a stuck record, asking for referral ever since, but it is now probably too late. If anything my mobility has worsened and I have become housebound. I no longer admire the NHS without exception. The ED brought me back to life and the surgeon did a fine job but I was then dumped. Sometimes I think they want me to go away and die quietly.
i totally agree with you the nhs is a full of joke after having a serious brain injury they should be some kind of help my husband never got any help when he was discharged but only now recently he was refered but they wer a waste of time i think i do better rehab than them for my husband
thank you for ur reply my husband had his follow up appointment after 1year of discharge frm the hospital and honestly the consultant was amazed in how much he has recoved i asked you said to me that this is the best his going to be and the answer was because his young he has a better chance for recovery i asked the tge 2year question from him to and the answer was it takes 2years for the whole brain to connect back together to be honest i dont think that doctors really knw the answer when it comes to brain injuries i guess they just want us to think the worse my husband has recoved well but its just his cognition which is the only problem at the moment
these things ie brain injury’s are really difficult in terms of prognosis individually since even various scans are fairly blunt tools and so on, See folks with seemingly similar injuries with quite different outcomes.
In short still have a long way to go in terms of understanding brains!
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