hypoxic brain injury and severe cogntion problems - Headway

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hypoxic brain injury and severe cogntion problems

fity123r profile image

hi everyone im new to this site in the hope someone can help me

my husband had a hypoxic brain injury due to a cardic arrest he was without a pulse for 20minutes in december 2020,he was in a neuro rehab unit for 5months he started to eat drink and walk with assitance but has involuntry head and body movements which makes him very unstable to walk .

its been nearly 12months and his cognition is still very bad he cant remember the day,time and year we in or what he eat or where he is. is very unpredictable is very impulsive and trys to abscond, during the day time he cant really talk and when he does we cant really understand him he can read and understand everything he is now improved in his writing to but the werid thing is during the night he talks so clearly that everyone can understands him he has a long conversation which seems so werid and i dont know why this is happing .

since his brain injury he either sleeps so much all day and night sometimes more than 18hrs or does not sleep at all so his awake for 24hrs

in terms of his short term memory which is really bad does that ever get better or does it get worse his only 33 we only just got married a 8months before the injury i just want to really help him but just dont know how to with his short term memory my world has fallen apart looking at him like this really breaks my heart but im so grateful to god that he is still alive

70 Replies

Hi. Welcome. If you are in the UK, you could phone the Headway helpline on 0808 800 2244. They can help with information, advice and support. They have been invaluable to me since my brain injury over five years ago. 🌼

fity123r profile image
fity123r in reply to Marnie22

hi marnie22 thank you so much for that i will be calling the headway helpline

Marnie22 profile image
Marnie22 in reply to fity123r

👍🌼

Hi Fity. Your man may well have the basic tools for improvement and, believe it or not, progress can continue long after one year.

It was, until recently, believed that progress ceases around the 2 year mark but that's now disproven and improvements can continue indefinitely.

After a bleed on the brain I was exhausted and over emotional for many months. My poor short term memory was frustrating and depressing, but within 2-3 years I believe that brain training helped me get by in conversation instead of avoiding it.

My abiding problem is poor balance and I know I look slightly drunk walking home with shopping. But I won't use the car unless I have to as walking is valuable exercise.

I wonder if your husband has had any follow up treatments or therapies .....and is he now home ? Cat x

fity123r profile image
fity123r in reply to cat3

hi cat3thank you so much for your reply my husband was in lemington spa in CERU rehabiltation unit for 5months were he did improved alot

he was adgitating alot for about 8weeks and at times was very aggressive so really he missed alot of therapy the first 2months but slowly started to engage

his walking is very unstable abit like the way you are describing your walking like his drunk and all over the place with very little balance his consultant says its chorea and is on a medicine called tetrabenzine to control the involuntary movements which isnt really helping

he can read and understand everything to be honest he can do alot and now his writing has improved to im just so concerned about his speech he mumbles during the day but during the night its so perfect and clear

and his short term memory which is very poor

he is currently at home with no further therpies i work full time so my nephew helps me care for him as he cant be left alone we have a package of care 4calls a day i really do need therpy for him for his cognition speech and physio but i just dont know who can helpdo you ask your GP to refere as iv already asked the chc and they are saying it something they cant cover in the package

im finding it so hard and struggle every day i just want to help him alot of people say thats all the recovery his going to make its been a year bla bla blahis had lack of oxygen to the brain the brain cells are dead there is nothing you can do to rewire them that really upsets me and i feel so down and cry myself to sleep but truly deep inside my heart i know he can improve he just needs the right help but just dont know where to start from i did have private physio sessions for him for about 2months when he was discharged from CERU but they where costing far to much which at this time i really could not afford.

cat3 profile image
cat3 in reply to fity123r

Still time & scope for neuroplasticity Fity. Repetition can help memory, with reinforcement of information and images.

In hospital, as soon as I was compass mentis, I was repeatedly asked to recite my name and other personal details. And I still do memory exercises every night before falling asleep.

Wordfinding games, crosswords and online card games are good for keeping the brain alert. Your GP can refer your man for further therapy but best to ask straight away to allow for waiting times. x

Hi my husband had a cardiac arrest almost 5 years ago now,resulting in a hypoxic brain injury.He was at work ,working alone when it happened so don't know how long before he was found.He spent 3 weeks in ICU in a coma.When he eventually woke,he couldn't speak.4 months on a rehab ward(at first just flailing his arms and legs about)He has no memory of anything from before his accident.Spent over 5 months in hospital.He can walk and talk now,but not read or write.He too kept trying to escape from rehab,manically walking round and round the wards once he was out of a wheelchair.During the night the nurses had to move his bed out of his annex as he was keeping others awake with his constant talking(didn't talk much during the day)He had a few different accents too before settling on one(not his one from before),He cannot tell you what day it is or the time,though he knows when its the weekend cos he sees kids playing out and we have Yorks puds on a Sunday.He is at home with me but I am with him 24/7 as he would just let anyone in the house and is not safe.Looking back,I didn't think he would ever progress as much as he has.The doctors were surprised too.Got him a brain injury card from Headway for when we go out as he says things which others might find offensive(hardly does it now).I wish you both luck.Take any help offered and don't give up hope that things will improve.x

fity123r profile image
fity123r in reply to Alb64

thank you alb64 for ur detailed reply it really gives me alot of hope i really would want his memory to get alittle better but guess it does take time when your husband was dischared from rehab 5years ago did he know how to use the toilet as my husband struggles sometimes his aware he needs to pee but most of the time he dosnt

in the last 5years what kind of small imrovemnts did your husband make i know every brain injury is different and its a long and slow process but really hope that he improves to some kind of level x

Alb64 profile image
Alb64 in reply to fity123r

Hi when he came home he could use the toilet,but he couldn't remember how to stand up to pee.He sits down now.He occasionally has an accident but very rarely now.He had no empathy at all and after his mum died he didn't cry or get upset(don't think he really understood).About a year later he got upset when one of our pets died.He also told me he loved me recently(without prompting).He can make a cup of tea with supervision but can't cook(though to be honest he rarely did before).He still has his sense of humour though.Also when he came home he couldn't bear to be touched and we've always been very close.He holds my hand occasionally now.Its the little things,and I'm just glad he's home with me.xx

fity123r profile image
fity123r in reply to Alb64

ahhhh bless him im so glad your husband making so much improvement you know something amazing happend today my husband actually rememberd about his brain injury he said to me its been a year i cant walk omg that shocked me i was amazed i never told him anything about his injury he also used the toilet to pee himself he actually asked me to take him a couple of times which was actually another achivement x

Alb64 profile image
Alb64 in reply to fity123r

Pleased to hear of his progress re going to the loo,and that he knows of his brain recovery.My husband only knows what I've told him,as he has no memory from before.Hes making new memories now.Hugs.x

TrevB296 profile image
TrevB296 in reply to Alb64

That's interesting. I'm relatively well but my empathy and emotion chip seems to have been disengaged and/or damaged. I've lost my parents and other family members over the years, and their friends (never made any of my own in 40 years which tells it's own story) and the only time that I've found it emotionally really tough is when I've lost a dog. I can't work out why? If I'm at football and my team scores I sit their motionless. I want them to win but have no interest that they've scored

😯

fity123r profile image
fity123r in reply to TrevB296

hi

thank you for the reply my husband actually has some sort of emotions when my mother passed away he was actually upset and cryed

when im upset he knows im upset stares at me and blows me kisses every brain injury is different and different outcomes if you dont mind me asking when did u have your brain injury how long has it been

TrevB296 profile image
TrevB296 in reply to fity123r

Jeez, now you're asking. Good job that my memory wasn't affected. I only lost the 24 hours before my accident. It was a lifetime ago, 30 years when I was in my teens. It was serious and devastating at that time and has left me disabled and in an emotional mess as I finally give up work at the end of the year, but many of the posts on here are tough reading and I actually have much to be thankful for in comparison. I hope that your husband improves and you get the support that you require. Your post was one of those really tough reads and sadly I'm not best placed to offer any practical advice, wish that I could.

Hi believe it or not it’s still very early days and there is lot of recovery yet! And the brain does rewire- just make sure his mind is active, play games with him, read to him etc. Does he like learning? Maybe he can go to adult education, our local council runs lots of free courses, very well run, they really get it. My daughter was at Uni when her hypoxic brain injury happened and after being discharged she went to learn maths and English from her local education centre and it was so helpful. Good luck, you will see so much more recovery in the next week, month, year it’s slowly and surely!

fity123r profile image
fity123r in reply to Phoenix68

ahhhh thank you that really makes me feel so much better my husband dosnt really likes learning but does play mind games he can do maths so much better than me and can write alot of words to i would actually look in to adult learning thats very helpful thank you x

Phoenix68 profile image
Phoenix68 in reply to fity123r

Yes they do loads of other courses like photography, languages computers etc just structured learning is definitely good as brain gym :)

My husband had a severe stroke in 2018. He has aphasia and short term memory problems. The speech therapist says the recovery of his speech has been held back by his short term memory problems. She says the only way to learn with short term memory problems is through repetition. My husband was 57 when he had his stroke. I would take heart that your husband’s much younger brain at 33 has more capacity for recovery.

My husband has regained the ability to read short passages which is so helpful as he doesn’t always understand the detail of what I am saying. I am now able to write down what he doesn’t understand verbally which helps with the frustration of being unable to communicate.

I would ask your doctor for referrals for the help you think he needs. If they can’t help they can sign post you. Unless you let people know they will think you don’t need help.

Wishing you and your husband well.

fity123r profile image
fity123r in reply to Windlesham

hi thank you so much for your helpful reply i will definitely get the doctor to refer him he does need therapy in order to improve i do write down alot of things on a white board for him and he does read but just dosnt store the information in x

I really feel for you in your struggle to cope with the massive change in your husband, and after such a short time after your marriage.

Can suggest speaking to one of the Headway counselling team as they specialise in brain injury its affects, and will support the families of those in your husband’s position.

Whilst you’re so grateful to God that he’s survived, it’s very hard for the families too.

I’ll be praying for you both.

If you feel you’d like to reply to me personally fity123r, you’re very welcome.

With my very best wishes

God bless

Lite75

fity123r profile image
fity123r in reply to Lite75

hiya lite75 i will be contacting headway, im just trying my very best to be there for my husband i have hope and trust that god will show me a miracle x

Lite75 profile image
Lite75 in reply to fity123r

Hi. Praying for you too xx

Hi fity! Your post has touched me so much. The fact that you were basically newlyweds when this happened is just so painful to imagine. I think becoming a caregiver at any age after the trauma of a partner’s TBI is the most stressful thing that can happen to anyone, but you and your husband were just starting your life together, so it seems doubly cruel. I am so glad to hear you at least have the help of your nephew, and are able to continue to go to work. Whatever your job is, I’m hoping it provides some escape to normalcy for you, and the companionship of sympathetic coworkers who understand your situation. Being able to be in the world, as yourself, is so crucial to YOUR mental health.Here’s my story, which might help give you some hope and optimism. My husband had a cardiac arrest on a tennis court with anoxic brain injury from 30 minutes with no heartbeat. He was 69 at the time, in February it will be three years since that day. His time in the ICU, hospitalization and rehab was shorter than your husband’s timeline, in just two months they sent him home to my full time care 😳.

I’ll describe the early days. From the beginning his speech has been very good, and his walking is pretty good, he uses a rolling walker when we go out. The most severe deficits have always been with his short term memory, his general cognition, and his “confabulation” (his belief in things that aren’t true, and making claims that are ridiculous). In the first months, he insisted that our dog can PLAY TENNIS and was going to Wimbledon to compete, he taught the Beatles how to play guitar, his dad was using Facebook in the 1950’s. More alarmingly, in the first months he had outbursts of truly scary hostility toward me, I would sometimes have my thumb ready to dial 911 (am in America) as I was crouched in the room shaking and crying. I believe it was a danger to me to have him home during this phase, and frankly feel lucky I wasn’t hurt. The outbursts would pass quickly, and having virtually zero short term memory, within a few minutes he would have no recollection of them and would be full of remorse when I would describe what he had said and done. Other things in that first 6 mos to a year: bedwetting. He would take his diaper off in the middle of the night and wet the bed. By day he was better, and has never been bowel incontinent. Night waking, running a bath in the dark, angrily insisting that he had to pack for a trip, get ready to go to the airport. Had very sketchy understanding of who our own adult kids are or any other family members, who’s alive and who’s dead, where people live and what they do, what our own history together has been (been married since 1988), what year it is. He was not safe to be alone for even five minutes, he would use witch hazel as mouthwash, shave with toothpaste, pour almond milk on the dog’s food. Basically, the first year I felt I was living with a slightly dangerous insane person who needed constant reminding of what had happened to him, the heart attack and brain injury.. And there was an alarm on our front door for fear he would walk out.

So… here we are almost three years later :).

The progress is HUGE. Do not let anyone tell you it stops at two years, it is ongoing far beyond that, so now I think very subtle improvements might continue for a lifetime.

Quick sketch:

He is a sweetheart. No outbursts of anger, his emotions are generally always appropriate, I have not felt afraid of him since that horrible first year. He’s very easy to be around.

No bedwetting or diaper ever, occasionally I will suggest he uses the bathroom if we’re going out, but he’s generally great.

He still needs cueing, basically, about every daily activity. I suspect he would stay contentedly in bed in the dark looking at his iPad all day if I didn’t announce the time, open our curtains, make breakfast, ask him to get dressed, ask him to make the bed (yes he’s helpful… loading dishwasher, making bed, taking out trash). But life feels CALM, and he can be relied upon to not do anything risky. I can leave him alone in our apartment while I walk the dog, do errands, even have a quick lunch with a friend, and I know he would not leave or use the stove or shave with toothpaste :).

Most encouraging of all is his improved memory, both long and short term. His hippocampus took a huge hit (he had a stroke along with his cardiac arrest), I was told this basically means the loss of the ability to LEARN, to store new information. Within the past few weeks I’ve noticed he has days when he can retain new information for quite awhile (that he’s going for a Covid shot, that his nephew has a new baby), and that these facts now often then go into his permanent memory files. Sometimes when I overhear him talking on the phone to an old friend, you could swear there’s nothing wrong with him at all, he does not say one weird or inappropriate thing, and he accurately remembers their shared history. They marvel to me afterwards that he seems like “his old self!” (His basic personality and sense of humor has been intact since the ICU. This, to me, is the biggest blessing.)

But at lunch with a friend recently, he seemed tired and quiet as she and I chatted, and when he did speak he said it was 1973, and at one point insisted he had taught the cooks at the restaurant how to make everything on the menu.

My point is, it is BUMPY progress, and unpredictable. But if the doctors who treated him in those first two months could see him now, they would be astonished. They truly would :).

Sorry to make this so long, but I really want you to hear specifics. Stay engaged, try to keep your sense of humor with him, try to be patient with the constant repetition of facts. They do start to stick. Progress is SO slow and subtle with the brain compared to other kinds of physical healing. But it will continue for many years, I promise! ❤️

cat3 profile image
cat3 in reply to CassandraDee

What an amazing, uplifting post Cass ! I have such admiration for you...

I actually berated myself for laughing at the thought of your dog playing tennis (and at Wimbledon). I too had bizarre notions early on and we still laugh about them now it's safe to do so ; not a bit funny at the time for loved ones though .

Best wishes to you both, Cat x

hi cassandradeethank you so much for a very detailed post ur post has gave me so much encouragement i feel that they will be a light at the end of the tunnel i really hope thank you x

Sarbear123 profile image
Sarbear123 in reply to fity123r

My husband had a cardiac arrest at 36, although a less severe brain injury than your husband, we have found that 2.5 years out we’re still seeing big improvements in memory, energy and general cognition. There was more improvement in year 1-2 than 0-1 in our experience.

fity123r profile image
fity123r in reply to Sarbear123

hi sarbear123 thank you for replying back how is your husband doing now if you dont mind me asking does he walk,talk how did the memory start to improve what helped x

Sarbear123 profile image
Sarbear123 in reply to fity123r

He’s back at work full time, he could walk and talk a few weeks after though so that wasn’t the challenge for him. He was out of it completely for 6 months totally not oriented. After that he started to come around but it was extremely slow progress. Memory still not amazing but about 10 times better than it was 12 months out. We couldn’t have imagined the progress he would make back then.

wow,what amazing insight/post.sorry cass but i did smile at the wimbledon/beatles situation also.please forgive.im currently in a stand off with my son who insists he can come home for xmas and sleep on sofa.its just so hard to try and get through and can be very upsetting.but you shared with us all and thats so lovely.my very best wishes xxx

Hi! Welcome and could I just say that I'm horrified at them not offered community therapy! Feel free to read my many random rants, my husband also experienced a hypoxic injury in December last year. We have been together for 15 years and mam is it hard. This is the hardest thing EVER. You are doing amazingly, esspecially as you are working as well, so you're basically superwoman. What has lead them to discharge him without a community therapy team in the loop?

fity123r profile image
fity123r in reply to ored13

hello ored13 thank you for replying back to me you all lovley people are making me even stronger

yes it is extremely hard i agree with you im all over the place at the moment work,home i havnt really got a social life just hoping and praying for the best how is your husband now is he at home with you how is he doing x

ored13 profile image
ored13 in reply to fity123r

Well, he's a mixed bag really. He's confused the therapists as well as the neurologist who has honestly only seen him twice. We do have a really good team around him. He has quite a lot of parkinsonism going on. So many many traits of Parkinson's, but he doesn't have Parkinson's. This is to do with one of the areas of his brain which was damaged, hi basal ganglia. I'm learning quite a bit. Some days are alright others great because there seems to be a breakthrough. And some of the others are down right terrible and I just want to rewind time and walk in the opposite direction.

It sounds bloody awful of me, but it's the truth. This is the most difficult, complicated and emotional job I have ever had. We have 2 kids who h adds to the stuff. And they can be great for him and keep him going and remembering that he's an adult. But also makes things hard for me. He sometimes sees and acknowledges this (though action, so he will get himself to bed with no fanfare). He has no real speach at the moment. He did when he came out of coma. A lot of repetition. But it seems to have gotten worse and almost disapi. He will be readmitted to the main hospital in out area in January to undergo some tests etc.

But flip me. That's all I can say. I send you a supportive "flip me!". I'm mostly around for a chat. Or a moan. No judgement, ever.❤️

fity123r profile image
fity123r in reply to ored13

hey ored13 my husband has involuntary body and head movements my husband had damaged the basil ganglia to his currently is taking tetrabenzine 3times a day to treat the movements the his consultant is saying its chorea because when he walks his all over the place and cant walk straight which is why he has very unsteady balance i think when you have a hypoxic brain injury the long term effects are involuntary movements and to be honest sometimes they are very irritating but lets hope things get better x

ored13 profile image
ored13 in reply to fity123r

Hi again, actually come to think of it. In the beginning and once he came home my husband had this involuntary hand movement on his left. His hand and arm would just move around randomly, usually when he was tired. He also would grab your hand if it came into his left field of vision. He said he couldn't control this at all it just happened. We have a neuro OT who is fantastic. We were referred to her when our community OT felt she was in over her head. I'm really grateful to her for putting her ego aside and holding her hands up. We have seen a few improvements just with him having been reassessed by the new OT. She was not exactly Impressed with what was reported back from the rehab unit.

Did you say that you have no community support?

fity123r profile image
fity123r in reply to ored13

hiya oerd13

im glad your hubby is making improvements its a slow process but you know what we have to stay strong and positive every little improvements i swear means alot especiallyfor caregivers

my husband actually rememberd his brain injury today which i swear shocked me it was randomlysaid to me its been nearly a year i cant walk also he went to the toilet and asked me to take him a couple of times and never had any accidents today so i swear thats a big achievement for me x

ored13 profile image
ored13 in reply to fity123r

Oh wow that is a big one for definite. I've been quite impatient with the randomness of things of late and you've reminded me that it's baby steps all day every day. Small victories. It's a different way of thinking. We take for granted certain things like having an accident free day when it's commonplace. So thanks for reminding me that these little things are actually quite big and to focus on the plusses and not the minuses or we would go MAD. That's amazing that he's remembered his injury. Do you mean the day it happened?

fity123r profile image
fity123r in reply to ored13

hi ored13 iv sorted some therapy session out for him today with our local gp its a wait of 6weeks tho he actually remeberd the month rather than the day it happend and even today he was trying to be alittle independent with washing his cup after having coffee yes these little things really give you hope lets hope these little things continue to big things i honestly could say tho bein a caregiver its one of the hardest things anyone could ever do

hows your hubby doing anything new today i think being a care giver we should keep little diaries of what happend today and than compare it in the next few weeks to see any changes xx

ored13 profile image
ored13 in reply to fity123r

You have it on the money there. I run a diary for my husband with appointments....I should start putting it in there. Or ask Alexa maybe...because she runs my life🤣.That's grand that he washed his own cup! Being aware of the fact that something needs to be done rather than just expecting it to happen. I wonder whether he would do other bits and bobs.

My husband and I had a falling out of sorts today (he doesn't speak which makes me seem a bit of a lunatic). However I was considering today getting him to help me tidy the kids room. He went into it for the 2nd time since his discharge in May because he couldn't get downstairs quickly enough for his online appointment. Hmmmm food for thought.

Anything new today...well because of the falling out I didn't sort the bed for him or give him a liner when he went for his (strop) nap, so he did it himself. I think I may just stop doing that forever. Unless he's really fatigued.😈

fity123r profile image
fity123r in reply to ored13

ahhhhhhhhh bless him maybe you should let him do it himself maybe he can learn start doing it himself for good i think the more things they going to do the more they will learn

my hubby was very very tired today didnt really do much been sleeping all day which actually worries me thinking yesterday he was all active and today its like back to square one ☹

but i guess with brain injuries the more u sleep the more the heals i think🤔🤔

ored13 profile image
ored13 in reply to fity123r

I find we have similar goings on. We can have a few days of doing quite a lot and being responsive and all the things and then find there is a day or 2 where he sort of crashes or just can't. I'm learning to accept this. I used to want him to get up at 9 and get on on with the day etc. It just didn't work. I'm learning. I'm also learning that I have to really push some things as well.

How are things today?

fity123r profile image
fity123r in reply to ored13

hi ored13

things have been quite bad the last couple of days😔 hubby did not sleep all night thursday been so sleepy and fatigue yesterday and today his the same so sleepy

my hubby has this sleep pattern were he would not sleep on 19to 23rd of every month either he sleeps far to much or would not sleep at all iv noticed this pattern in the last couple of months i really dont know why does this happens his injury happend on the 22nd of december maybe if thats something to do with it cause its the same sort of dates

times like this i wanna jus sit in the corner and just cry its like would this ever be back to usual or what all sorts of questions go through my mind im quite sad today things are just not moving no matter what ever im trying 😔😔😔😔

ored13 profile image
ored13 in reply to fity123r

It's ok to cry. The crying is so important. You can't be strong all the time, you can't be upbeat all the time and sometimes you just have to go into that corner and cry (my corner is the bathroom usually). I'm lucky enough that I can tell my husband that's I'm upset at things. Usually he laughs (because he has a bit of an issue there with appropriateness). But I used to feel that I should protect him from how I feel. But I don't think I should. He can deal with seeing me upset a s disheartened. He may not care but it helps to say.

Does your husband have a neurophsycologist? I mean there must be something going on that is messing with his rhythms like that. Esspecially if you can almost pin point the days like that. What does his typical day look like?

fity123r profile image
fity123r in reply to ored13

hi ored13

i cry infront of my hubby he dosnt really try to calm me down just stares at me or blows me kisses i do know he does have emotions i know that because when my mother passed away he was very upset and cryed to

i have spoken to his consultant about this pattern of sleep he has no idea why this happens he gave him some sleepin pills which dont really work at that time when this happens advise me to have sleep wake cycle (not that i dont do that already🙄🙄)

hows your hubby doing x

fity123r profile image
fity123r in reply to fity123r

hey its me again i just wanted to tell ya i was doing some search earlier on and i found that blueberries are really good for cognition and walnuts are really good for memory and really good for the brain

well i bhought lots of blueberries today to giv my hubby lets hope they work lol x

ored13 profile image
ored13 in reply to fity123r

Ah, that's excellent thank you. Have you had a look at the omega 3 protocol for brain injury? We did have a lot of success with it and a various other supplements but with the swallow problems we've been having I've come away from tablets etc. I'll have to find liquid alternatives. I also give him a LOT of kiwi. I had a list which I wrote up from listening to many things. I've fallen off the nutrition bandwagon big style as the past few months since the summer have been such hard going. I need to get back to throwing a smoothie at him 1st thing in the morning. I would sneak all sorts of things into it.... banana skin and kiwi skin are winners I've heard as well (not a lot of course but just enough). Thanks you've reminded.me to stop being such a mope and to get on with things again.

What sort of a day are you having?

fity123r profile image
fity123r in reply to ored13

hi ored13

iv heard of omega 3 supplements is that what omega 3 protocal is the ones you get from the pharmacy?

my hubby has been very tired and fatigue the last couple of days his always sleeping and to be honest i dont wake him up i let him sleep so the brain can heal

iv been quite upset some of our friend's come to see him and they actually put me down by sayin we dont think he will ever improve its been a year you need to accept that nothing can cure him and bla bla bla what is wrong with people these days why dont they understand its a brain injury you dont improve over night it takes time and now im on a mission to prove them wrong dont know how tho🤔😒

hows your hubby doing anything exicting happing how you been the last couple of days

ored13 profile image
ored13 in reply to fity123r

What is wrong with people! Everyone is entitled to their own thoughts and opinions...but some things we just think in our heads, not out loud regardless of how good a friend we are to that person.

The omega protocol is taking high doses of omega 3 oils (the stuff the brain loves). But taking them in a certain quantity for a certain amount of time and then reducing the dose gradually over time.

If you Google it you will see the 1st thing that comes up is a brain health education thing. (I can't seem to copy the link) There is a lot of information etc for you to have a look at online as well about using omega. It's not a treatment plan. Nothing is fool proof of course and I'm not a doctor. But I noticed positives when we were doing it. I'll be putting my husband back on once I find a good liquid supplement the pills were giant and I was very stressed watching him take them. We would buy all our supplements from Medino. But yes it's the same thing you would get in a pharmacy or Tesco. I suppose your have to check the strength etc.

I'm interested to know whether your husband was prescribed anything like vitamin b1 for his fatigue when he came out of hospital?

My sister in law did a lot of research into supplements specific to my husband's injury and he was on MANY. Again I only noticed positives when we started putting him on them. But that's just us.

I nearly drove myself MAD trying to fix all the things. I need a new approach. You know based on what you have read that there is no one size fits all. And there is not really a cap on improvement. I think they like to call it "small gains". But they're still gains. You can build on the fact that he washed his cup the other day by getting him to do it regularly etc. I know it's hard. I'm actually rolling my eyes at myself just typing this. But it's correct. Annoying and I want to throw things at people who tell me to do this (because there are just not enough hours in the day EVER) but they're right

Repetition repetition repetition and some rest.

Anyway I'll come down from my high horse here. This week has been bloody hard going. We both had the cold which the kids instantly had after getting their flu vaccinations. And then I ended up with flu...not a cold. We've already had covid a couple of months back so couldn't test for it. But it was worse than that. Husband has been pretty broken, we both have. So we've not done a lot of anything. Did a bit of OT practice, that's about it.

On the plus side he was given a Zimmer frame to try which he has said no to since he was in hospital (I'm raging about that, they should have pushed harder, we would have insisted if we were allowed near the place). Anyway we had a massive falling out about it the day he got it after I'd asked the physio whether he could be tested on one. And he has been using it... constantly. I think he realised how much safer and progressive he is with it and has made the choice to work at walking with it. Soninam having nothing to do with it. Our daughter encourages him quite a lot by temarkiy on how much quicker he is. I swear I'm not paying her for this. It's just an observation so that's a plus and I think it spurs him on.

So aside from your friends not keeping their thoughts as thoughts. Has anything new happened?

fity123r profile image
fity123r in reply to ored13

ahhhhhhhhh bless you hope u get better

hubby did some writing just like an hour ago actually the writing was quite clear his back to bed again lol yes the constulant did give him b12 medicine in september when we had a follow up appontment but not before

to be honest when i bhought a walking frame( yes i bhought it from ebay) for my hubby he actually did improve his walking so a zimmer frame is good it gives you that support especially when u have involuntary movements walking frame helped my hubby alot with his walking now his walking without a frame only needs one hand assistants sometimes when his tired the physios in rehab did say he would not be able to walk independently ever but hey he proved them wrong even tho it is unsteady but his walking thats the main thing keep trying the zimmer honestly it would work

i was reading my hubbys discharge report that other day and my hubby had parkinsonism in march when he was in rehab and ataxia which made his walking very unsteady and than in april he developed chorea

does your hubby talk mine dont i feel he can but he feels embarrassed when the right word dose not come out and than he completely stops

another thing happend yesterday he actually wrote his address which he never had before he did actually washed his face today and brushed his theeth independently without the supervision of his carers which was quite exciting before he had no clue how to brush his theeth does ur hubby brush his theeth independently himself or does he need help

as caregivers we are doing a amazing job i know its extremely hard and only we know what we are doing for our husbands so hats off to us

i would go online to check the omega 3 protacol thank you so much for that 😊

ored13 profile image
ored13 in reply to fity123r

Oh wow that's excellent. I'm going to have a look at speakeasy the charity for speech. There are all these things that I looked at as options while he was in hospital and then he came home and the world exploded a bit! Now things have calmed down I can start to have a look at things again.I think our jobs are really important because the therapists only get a very s snapshot of what's going on in daily life. But wow those are some good steps he's made there!!!

fity123r profile image
fity123r in reply to ored13

hi ored13

how are you doing and hows hubby getting along

i just wanted to tell you iv been trying omega 3 high strength supplements for my hubby its been a week now and i think its working on him his more aware of his surroundings and is slightly uses his mobile to eg texing and using watsup .

also ive been blending walnuts in milk for him and ive been giving him that every day 🙂

ored13 profile image
ored13 in reply to fity123r

Oh fantastic!!!I'm so glad to hear it. I did think there were differences. I really must get back on the supplement wagon. But that is fantastic. Are you doing him sort of like a nut milk smoothie type thing?

We have had a rough week or so. Squatting at the in laws waiting for power and water to be restored. He got an AWFUL rash which nearly had me take him to A&E. That has calmed thank goodness!

Ah I'm so happy to hear you are noticing some differences!

fity123r profile image
fity123r in reply to ored13

oh dear i hope his ok .yes i think you should get back on them they are really good well i think they are working for my hubby if only i joined this forum when he was in rehab i would have been giving the supplements from than🤔

yes i get almonds and walnuts and i mix

them with milk blend them in with the blender and give it to him just before bed

ored13 profile image
ored13 in reply to fity123r

Hi!!!! I can't help but think that this would have made so much of a difference wo both our partners if we had been introduced to it sooner. My biggest issue was access to my husband and also providing h with extras. The rehab unit he was in was awful. In that they just wanted to hide behind the covid rules. I'm finding out so many thing now that I wish I had been told sooner. But smoke, mirrors and defensiveness from the word go. I could honestly write a book!We are lucky now to have some really good community therapists. I do hope that it's not too late for him. But if this team (including a wellbeing coordinator who we met today and will be helping with excercise!)if they had all been there from the beginning, we would be looking at a completely different picture.

How have things been over the past while. Still noticing small changes?

fity123r profile image
fity123r in reply to ored13

hiya

to be honest my hubby had a good rehab place i was quite happy with them they were good tryed everything with my hubby but unfortunately my hubby has severe cognition deficts so there was nothing more they could do for him but what made me angry is they never gave him any community rehab when he was discharged from rehab

so now its been 6months since my hubby has been home without any rehab and to be honest its me whos his OT,PT and the rest 😊

my hubby is so tired and fatigue every day since the injury honestly he is always sleeping or awake all night i dont know of that will ever change

last couple of days his been in bed and not doing much😒 just when i thought im seeing good signs it all changes

is your hubby tired or fatigue? do you know which is the best vitamin for fatigue ?

ored13 profile image
ored13 in reply to fity123r

Sigh... I apologise.om advance if this is a long and crazy reply. Could be short and sweet you never know.!!

Well my husband, his name is James (I doubt he would mind me letting anyone know that) had been diagnosed with alleged chronic fatigue syndrome. We are not convinced that this was the problem...more on that another time. Anyway as a result I read a fair bit up on Pacing which is known in various situations to help keep you functioning. Just like you can't run at and stay at a certain speed, regardless of terrain, weather conditions and how you actually feel. You have to take breaks. Maybe not stopping all together but a sprint is going to kill you if you have to do 100 miles (I know nothing about running. I can't run, therefore I don't run. It makes me sad and sore).

Please also know that this is my interpretation of pacing.

So basically you have to do some and rest, do something else and rest etc.

There HAS to be a nap in his day. He often says he doesn't need one and then sleeps for like 3 hours. And similarly he had days when he is just BROKEN. On those days I just leave him, give him food when he wakes up, sometimes he just goes back to bed. This usuat happens if he's had a few days of massive stimulation. It always happens the 1st few days once the kids have gone back to school after school holidays, because they are loud, annoying and draining 😆❤️, with or without a brain injury to deal with.

So I've learned that he must have a daily nap, and have to look quite carefully at what he had actually done in the few hours he has been awake.

So a shower, shave (shave by me), teeth brushing, hair washing, dressings and breakfast can leave him bloody knackered. That is all a form of rehab in itself I hear esspecially if there are cognitive issues. All th planning and looking and figuring out to do those few things that seem like nothing to us. I can tell that he is struggling and that it's work for him. So come 2pm I usually say that he could probably do wih a snooze or maybe just sit and listen to Audible or a podcast to power down.

Where was I going with this? Flip knows. However, he can often not self manage. We don't have a lot of problems with this as often anymore. But the other day we were all having a late nigh, kids were watching rubbish and not fighting, he was watching stuff on his PC, I was having a beverage and lost track of time. It was 10pm. He is usually getting into bed at that time. So he went to bed at maybe 11:20. Oh my word he could barely move the next day. I had to physically help with so many things. There was more struggle controlling his body. It was awful. Never again. I guess what I'm saying is that maybe you need to manage his time a bit. You may already be doing this so please ignore my ramblings if you are.

DEFINITELY ask your GP for some referals and if they don't understand why all for a second opinion on your husband's cognitive abilities and mention the sleep issues.

As far as supplements go!

James was on a plethora of sups and will be once I get my finger out and find liquid alternatives.

B1(thiamine) 100mg 3 times a day (this came with him on discharge)

B12

Iron

Vitamin d, calcium and magnesium which have to be taken together or they don't work as well.

The omegas

Something called "get up and go"

So very very many this is only a few of them. I had to get a pill box for morning afternoon and evening and they were jammed FULL.

And honestly there were good results. My sister in law did all the research on what his difficulties etc were and looked for the best options and I made sure he got them. Oh and Water water water (James Hayes water so I give him squash)

But I think physical activity, target mental activity, rest and nutrition are the best options. I am yet a babe as far as learning about this sort of thing. But I am learning. I quite like looking at the Flint rehab resources. And of course the wealth of information on here simply by asking and Headway if you get stuck.

We were also told that using pen and paper was by far superior to using tech where possible. But tech is also awsome.

ALSO there is a poscast called "life with no filter". It is AMAZING. Just gives you a bit of insight and understanding. I've not listened for ages. But it's 4 people who have different types of brain injuries. Very interesting. Your hubby may want to listen too. Mine is not ready yet. He may be ready to join one of the headway groups.

But yes, that's my 2 cents

My in laws bought him an excercise bike so he has been doing a bit here and there, we have also been given gym sessions with a PT through physio. she's called a "wellbeing coordinator" l. They should have these in rehab for definite. This happened by mistake because I asked her for some advice on joining a gym. So worth getting under the GP's skin and getting a referral or sorts.

Anyhoop...guess I went for the long drawn out reply option 😈😆. Hope your head doesn't hurt and pat ok the back for making it through.

Worth having a look at pacing. I wonder whether that would help. Also a gp should be getting their finger out to help understand what is going on with his sleep. But you could already tick a few boxes and say what you have tried. That way you're a few steps ahead. I've been burned with that in the past as well. Now I go in wih an arsenal of information and a diary 🤣🤣🤣👀.

Don't worry about the down days. There have to be good, bad and nothing days. There also have to be those days when we just want to bash our heads against a wall repeatedly or just cry because "WHY!!!!!!?????".

But I think we're all doing pretty damned well for our loved ones. Even if they don't agree.

Apologies for any typos!!!🙈

fity123r profile image
fity123r in reply to ored13

ahhhhhhhhhhhh blesss you and thank you so much for taking your time and replying bk to me

i was actually having a very rough day today been awake with him all night his been tired all day not doing much and to be honest i didnt have the energy to even do any sort of home rehab with him today

but i will speak to the gp and get some help for him and i will also look at the vitamins thanks alot

ored13 profile image
ored13 in reply to fity123r

Tomorrow will be better❤️

ored13 profile image
ored13 in reply to fity123r

Woah.....soapbox post🤣🤣🤣🤣. Hope you're both doing well and that you have a good weekend!

fity123r profile image
fity123r in reply to ored13

hi ored13

how u been hows hubby doing its been a whole year today since my hubby had the injury i just feel so emotional and very sad today even tho this year has been a struggle for me i just cant believe it its been a year already and i ask myself would next year be like this to well he has made some improvements eg walking remembring things eating trying to be independent eg brushing his theeth what more surprises will i get next year i wounder 🤔🤔 i really hope some good ones his like a baby trying to learn to do things and believe me its so hard its not like this when kids try to learn how to walk talk eat but i guess when kids are about 5 they know what they doing and maybe another 4years and he would know how to do all thses things its such a long process

by the way omega 3 are very good his not as much tired as he use to be and also sleeps well to i give him vitamin d to and i think thats helped with his mobilty

ored13 profile image
ored13 in reply to fity123r

Oh goodness. You're at that one year mark as well. Mine was a week or so ago. I understand that deep hollow sad feeling. Where you are both sad very sad but also a bit relieved. But also angry and frustrated and a little bit grateful. Such an odd mix of feelings.

Honestly, I truly believe our husbands will have so many more positive gains this time next year. Unfortunately its up to us to get them there. We have to push them, learn how far they can go and when it's just too much. We are their only advocates. I don't know whether your hubs has the same issue as James, but he lacks motivation. He will do something if I suggest it, but he won't do it himself.

Do us a favour....I'll do the same.

Make a list of things he could not do independently from the moment he woke. Then a list of things he's improving on. And a list of things which need some very hard and specific work. Take some pictures of him doing those things for both you and him. I think it may be important for all of us to see this progress.

Couldn't brush teeth

Now able to brush teeth

Unable to weight bear

Walking in short burst with support.

Not necessarily like that, but something like that. Even if you pop it on here. If you look at this post a year from now you will be able to draw comparisons and maybe see the positives.

The year long marks are so important. It's sad yes and upsetting and we feel like we wish it wouldn't have happened.

What worries me is that we get stuck in that rut of negative thought. It happened. We now have to find a way to live with it and make things better for both. Not just for your husband.

Cry today if that is your way through. Eat a mountain of chocolate and watch some terrible movies. Have a drink. But allow yourself to mourn and also celebrate the successes and think forward.

I'm not lecturing, you will know what you need.

I told James on the 9th that it's his Braininjurversary, which he laughed at. I realised that he's not sad. He's just glad to be here, not in hospital and still alive. Yes frustrated. But it surprised me. I decided after that that I would let my emotions take their own course but try and look at how far we have come. And I was really sad that night once the dust had settled. But that's important too.

Today I took out the Christmas tree and all the packages delivered before Xmas that James had ordered. I didn't want the tree out. I still remember the fire serviceman (someone I know quite well now) looking at me apologetically as he grabbed and dumped it so they had more space for CPR. Jws had taken all the Xmas decs out and we were meant to do the tree with the kids. But the tree is out of the attic finally today and James is looking forward to opening the parcels that he ordered last year.

You are so right, they are like babies. And yes next year or 5 years from now hopefully we have that development. I believe that's what be will happen. But we will have to help and steer and annoy them I guess.

Sorry for the long message. Working through things at this end as well. It's comforting to know that there is someone else out there going through something similar or at the same sort of stage.

I'm so pleased you're finding those benefits in the supplements and diet changes/additions. Another plus to add to the list.

I hope you care for yourself this evening and over the next couple of days. But please allow yourself to have that little bit of hope as well as to feel your feels.

You are amazing.

❤️

fity123r profile image
fity123r in reply to ored13

Thank you so much for the encourging reply you sent me it means alot yes your right i will make a big list of the things he can do and what needs working on that is such a good idea

i was actually crying until 1in the morning going through all the emotions and feelings i was going through this time last year and at the same time eating lots of chocolates 🙈

hopefully by next year this time our husbands will probably be alittle independent well thats what i hope for

we are doing an amazing job with our hubbies and because of us there have come to this stage eg i never had any community rehab since he was discharged from hospital i had to do everything myself he has improved in alot of ways since he came home the brain is a amazing organ it will heal in its own time we just have to push it to that level

im so grateful i found this forum otherwise il be pulling my hair out and thank you again x

ored13 profile image
ored13 in reply to fity123r

Crying and chocolate are a very official heal all to many things (I add a glass of wine to my list of cures). Glad you had the courage to revisit where you were last year. I tend to shut the door a lot but sometimes find myself just thinking back in snippets. And yes we are doing a really good job. I'm not one for congratulating myself. But think of the work that we put in over the past year Nobody else would do this for them with the determination that we have. Yes, maybe we to have the odd rough moment (well I absolutely do) but then get up and do the next thing. I hope when we message or post this time next year we get a bit of a boost and power though the next few months.

On another note have you looked into any of the B vitamins for your hubs? There is no one size fits all I don't think in this, but I know most of us don't get enough of them. Not just for him but for yourself as well? I need to remember that I need supplements too. I wish this was something which we could be tested for and prescribed.

fity123r profile image
fity123r in reply to fity123r

hi again

yes jay does have lack of motivation he wont get up and do things himself il have tp guide him and prompt him now his brushing his own theeth but with me prompting him like putting the thoothpaste on the brush he remembers where his phone is kept and if i say to him you need to put your phone on charge he will know where the charger is and he wil put it on charging his improved on his eating to before like a couple of months ago he wil try to eat but it will get stuck in his mouth and he wouldnt know how to chew it but now his really good with chewing he couldnt really walk when he came out of rehab 2people had to always assist him but know its like maybe some would wil jus be beside him while he walks but its still very unsteady and can fall at times he can wash him self in the shower but needs supervision but he could do that when he was in rehab his short term memory is not quite there yet and his behaviour is something that needs improving he can be very aggressive when his tired still sleeps alot how about your hubby what kind of things can he do now that he couldnt do a couple of months ago

and oh yeah i do take vitamin b12 complete i wouldnt have the energy if i dont lol

One of the things that I can certainly say is, that when it comes to short term memory failings, worrying about it as the person with the issue rarely makes things better and frequently makes things worse. My short term memory after a shunt revision for hydrocephalus has been very poor and has undoubtedly tested the patience of she who is closest to me more than anyone should have to tolerate.

From my perspective, worrying about the consequences of my poor memory in terms of its impact on others isn't easy to brush aside, although the sensible part of me ( there IS one) knows that fretting over short term memory simply becomes a self-fulfilling prophecy and I will worry myself into forgetting.

Although our situations may be very different, I can say from the 'other side' what I believe is helpful to someone with memory issues, What I find helpful is people accepting that our route from A to B, in terms of remembering may seem illogical, over-complicated or even frivolous, but if it gets us from A to B none of that matters. This can be frustrating for those who care for us at times, I am certain, but if we stumble on something that helps, we can be very loathed to give it up. ( Notes in my shoe of what I have to do and the steps to do it is my treasured 'lifebelt.')

The time people take to make us 'the best that we can be' is treasured, even by those who can't express it, as many, as well as I, can no doubt confirm.

Take care

K

fity123r profile image
fity123r in reply to Froggiefrog

Thank you for taking your time to explain about your experiences it made me realise despite what I have been through there are other people out there who are going through times such as myself. ( even though we are not going through the same thing) As a person who's having to support my husband instead of actually experiencing this myself by seeing what other people go through it helps me understand and learn new things which I have never learnt before

i am in my 3rd year of recovery from a hypoxic brain injury that resulted from cardiac arrest. I certainly feel much better now than i did in my 1st or 2nd year.

hi absa im so glad you feel better and making a good recovery when u had the hypoxic brain injury could you walk ,talk or was that abit of a struggle how was your cognition like x

absa profile image
absa in reply to fity123r

i was in a wheelchair for a short while, then a walker, then i could walk with some assistance.

that process lasted a couple weeks. Afterward, i could walk normally.

my speech was initially very slurred, but that improved. Then there was a prolonged period of time wherein i could think of things that i wanted to say, but it would be difficult actually saying them - even though i knew which words i wanted to use.

my overall cognition was impacted quite noticeably. i could not perceive time, my memory was in shambles.

i would regularly try to 'guess' what time it was - based on how it felt the day had progressed, and i was regularly several hours off.

everything felt so surreal... and nightmarish. it was truly awful.

now, almost 3 years later, i still struggle with the 'surreal' feeling - though it has reduced noticeably. Just about everything else has resolved.

My eyes developed severe astigmatism as well.... so i now have to wear glasses. i went an entire year thinking the blurry and distorted vision was a result of brain damage.. it certainly contributed to the 'surreal' feeling.

my MRI shows that i have a small lesion in my brain, as well as some atrophy (i have the brain of someone who is 10-15 years older than i am).

all in all, i do not recommend it.

fity123r profile image
fity123r in reply to absa

hi absa

im really happy for you that you have made such a amazing recovery reading your post actually gives me hope that one day my husband will be able improve to thank you for taking your time out and replying back to me i really appreciate it x

absa profile image
absa in reply to fity123r

you are very welcome.

i would recommend looking into alternative treatments for your husband. Growth hormone, viagra (creates new brain cells), cerebrolysin, dihexa... anything that you can discuss with the physicians

nothing ventured, nothing gained.

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