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Brain injury

(99 Posts)
babybarrister Mon 12-Nov-12 11:08:52

Just to say James Cracknell who suffered from a brain injury after a cycling crash is doing a webchat today about his new book written with his wife - I am sure that I cannot be the only spouse living with a brain injured partner, so please come on down and contribute!

TheWombat Tue 13-Nov-12 16:07:25

My DH was medically discharged due to epilepsy / severe post traumatic migraine and memory loss, and no longer works because of these issues. However I frequently come home to find him up a ladder / fiddling with the electrics. Gah! I think it's a hard line to tread - if I tell him off, I'm mollycoddling, and if I don't, I'm being careless with his safety.

I sympathise with everyone who has to try and stop their OH overdoing it! I think it's hard for anyone who's been used to an active, challenging lifestyle to suddenly feel less capable. Even harder when these symptoms are hidden or put down to depression or 'stress' (and when those are also typical elements of TBI).

TheWombat Tue 13-Nov-12 16:11:28

Thank you babybarrister for telling me about the Brain Injury Rehabililtation Trust. I can't believe we hadn't heard of that before!

By the way, I laughed when I got your message about my 'canine partners' suggestion! Not surprised you aren't investigating that avenue! grin

VinoEsmeralda Tue 13-Nov-12 17:13:05

Thank you the wombat

How do you all cope with views of other people? dH is very keen not to talk about his condition to new people and prefer it to be forgotten about....

babybarrister Tue 13-Nov-12 17:54:49

please, please all of you with macho partners have a go at Headway as it is full of blokes! for my DH it was really a revelation - probably particularly as he could identify with other people. IME it is very helpful to be able to realise that they are not alone. although now my dh drinks herbal tea and has been known to meditate, he is in fact a beer swilling rugger bugger lout grin

WhoAmIAgain Tue 13-Nov-12 18:07:58

Hello ladies. How I feel for you all. I know how tough it must have been for you and your DP's. You are amazing to have coped so well with it all.

I've been directly affectd by brain injury too, albeit no so severely as your DP's, DM.

WhoAmIAgain Tue 13-Nov-12 18:08:29

And I too can only give total praise for Headway.

WhoAmIAgain Tue 13-Nov-12 18:24:26

I had a "mild" head injury after falling from a bike (I had a helmet on) 3 years ago. It's been a really difficult time culminating in me losing my job (being made redundant at Christmas because of my poor performance). I'm now undergoing neuro rehabilitation. And I'm really struggling sad.

TheWombat Tue 13-Nov-12 19:39:27

Hello WhoAmIAgain and welcome to the thread smile
I'm so sorry to hear about your head injury and to hear you were made redundant at Christmas - un-MNetty hugs to you.

I know (secondhand) that the brain rehabilitation process is very tough and frustrating. sad. It must also be mentally and physically exhausting for you. I hope the rehab therapists are sympathetic - I think if you get on with them it makes a big difference. Can i ask, are there any specific things that you struggle with?

From our experience, I can say that rehab is an ongoing process - even 10 years on, we are still learning new things about DH's head and how he can mitigate symptoms. Please don't lose faith in yourself..

I'm also really glad to hear that you also found Headway helpful. I have shown this thread to DH and he reckons it's definitely time to give our local branch another go smile

prettybird Wed 14-Nov-12 10:07:12

Was it Sheena Macdonald (who was knocked down by a police car) who said that there is no tiredness that can compare to the brain tiredness you get following a brain injury?

babybarrister Wed 14-Nov-12 10:15:07

I am really pleased that we know have a thread of our own for brain injury as although I have used MN for support in relation to other specialist health issues, I never found anything on here for brain injury ...

WhoAmIAgain Wed 14-Nov-12 11:03:53

Wombat there is so much that I am struggling with. Mostly cognitive and psychological. I know how lucky I am compared to most people and I think unfortunately that is why I have struggled on for so long and not got any help. That's also why it has taken my employers so long to realise I am not myself any more sad.

Specifically: anger, irritability, memory problems, attention deficit, damage to my higher executive processing, visual recognition disorder. I am also very stressed anxious and down. I've just started neuro rehab and they are trying to assess my needs and define all my areas of deficit. I've just started on anti depressents too, although I don't feel I am really "depressed". I am not the outgoing fun loving person that I was though. And I am so, so tired. It's as if I need every ounce of my IQ to do anything. My DP bears the brunt of it all sad
The job loss and admitting I have these problems has been so hard, and I've strugglesd with the neuro rehab. I have an MRI booked for tomorrow.

I can manage in my day to day life. No one would know anything was wrong sad.

TheWombat Wed 14-Nov-12 17:46:41

Oh WhoAmIAgain sad. I recognise so many of your symptoms from my DH...and fully agree that if you can still be a functioning adult in day-to-day activities, the impact of the brain injury can be overlooked and yet still have a huge effect on your life. And yes, the tiredness is awful and I think must be hard for anyone to understand if they have no experience of TBI or other exhausting-making conditions like ME or lupus for example. And it seems like TBIs happen to people who like to 'get out there and do things' (that's how they get injured!), so it means getting used to a whole new range of limits..and it's hard to admit to yourself and to others that things have changed.

For those reasons my DH's brain injury wasn't picked up for a long time, and we too missed out on vital support and rehab. I'm glad you are getting help now - hang in there, you aren't alone. I will be calling Headway tomorrow too to see what we've missed out on!

{{{{WhoAmIAgain}}}}

TheWombat Wed 14-Nov-12 17:54:10

Can I ask everyone if they have DC? And how their family is generally coping with the situation?

I have 2 DSDs, who don't live with us but spend as much time here as we can all manage. We are very close and they are old enough now to know that Daddy needs sleeps, forgets things, and gets nasty headaches that make him crotchety. They are very accepting and love him to bits, but it's not always easy for them when DH runs out of patience. I have ended up feeling stuck in the middle in the past, because i want to stick up for the girls and comfort them, but i cant overrule DH for fear of 'over-stepping'...And of course DH feels awful if he gets irritated with them - even though this is very rare nowadays.

WhoAmIAgain Wed 14-Nov-12 19:08:29

I have a DC. He was 9 months old when I had my HI and I was also working full time. I went back to full time work 1 month after my HI. Far too soon I know now, but I wanted to get back to normal, it was my way of coping (or not as it has turned out). The worst bit was in the first 12 months when I had severe anger - extreme bouts of uncontrollable rage about the most ridiculous things. It scared me. My DP was close to leaving. I tried to keep it away from DC but once I took out my anger on him and he was so, so scared. I was and am so very very ashamed and guilty. I willl never forget the look in his eyes sad. That magd me go to my GP who, despite my saying it was as a result of my HI and I wasn't myself, diagnosed post natal depression amd gave me antidepressants. However the AD's did help and took the edge off my uncontrollable rages.
Now I would say I am irritable and yes I do sometimes fly off the handle but not with the venom and hate that I used to display. And it's not so often and sadly, always at my DP's expense (OK sometimes at work too but to be fair I was dealing with idiots and I'd have got cross with them anyway - just not quite so badly!).

WhoAmIAgain Wed 14-Nov-12 19:11:48

Can I ask what happened to everyones loved ones? How long they were in hospital and what the injuries were? Treatment they had?
I was found sometime after my fall, estimates are about 20 minutes. I regained conciousness about 4 hours later. CT scan was normal. I was in hospital for a week and then at home in bed for 2 weeks (I remember very little of this period). So very trivial compared to many, yet I have been left with these deficits that are making life hard.

madwomanintheattic Wed 14-Nov-12 20:06:11

Loads of people around when the explosion happened, so immediate first aid given to dh. He regained consciousness before the helicopter arrived, and was transferred to the regional hospital by air, probably about 30 - 35 minutes? Tests etc. obviously fractures etc from site of impact. Identified ongoing bleed and his levels of consciousness were dropping - I got to the hospital maybe an hour and a half after the accident, and he recognized me but was v hazy on quite what had happened/ was going on - he was just lying on a trolley with his eyes closed. Air ambulance to neuro unit 3 hours away for surgery etc, by which point he didn't know who he was, and was really hard/ occasionally impossible to rouse as they were doing their GCS, which was steadily dropping due to the internal bleeding. Surgery took five hours. He was discharged after 8days to bed rest for 6 weeks, and had ongoing tests over the next 2 years. I remember we were all stunned that he was discharged, but I guess you may as well sleep at home as anywhere else!

Dh was really similar, whoami - even now he can remember virtually nothing. We don't know if it's from the injury itself, or a psych 'protection' mechanism. The only thing he can remember about the entire period is the removal of the catheter... His memory from 'before' the accident stops about 15 minutes before it happened. During the period he was in hospital he was giving completely plausible (but frankly bollocks) answers to the questions of the many and varied medical staff who kept popping by and asking him questions to gauge where he was at... He told them he was playing baseball and got hit on the head (he has never played baseball in his life), that he was barbecuing and the gas bottle exploded (nah), that he was helping coordinate a rescue effort on a school bus that had been involved in an explosion... All sorts. And he was sooooo plausible that the medical staff would turn to me as if to say 'yes?', and I'd go 'nooooooo'.

This dh is the only one the dcs have ever known tbh. Dd1 was so little when he had the accident. We were so worried that she would be terrified when he came out of hospital - he looked like Frankenstein's monster - staples all over his head and swollen shaved scalp. It didn't bother her though - I guess because she was too young to realize the implications - it was just daddy but he looked a bit weird and kept going to sleep.

He had an air pocket from the surgery, which I gather is entirely normal, so he had to keep going back to the hospital and they kept scanning to make sure it was diminishing, which eventually it did... We were v happy with that, as it meant we could book a holiday - whilst it was still there he couldn't fly... And to monitor the reduction of the swelling/ centre line stuff.

Fortunately the dc I was pg with at the time wasn't a girl, else we would have had to call her Zelda, after the neuro surgeon that saved his life. grin

Whoami, I think it takes a long time to come to terms with the impact. At three years dh was still noticeably affected, and still taking painkillers for debilitating headaches etc. His accident was over ten years ago now, and you'd be hard pushed as an outsider to recognize his occasional symptoms, now. And they are occasional, tbh. H's more prone to headaches if he is tired (but then aren't we all) ditto with the tetchiness etc. and bull headedness does tend to run in the family. <sigh>. It's only it context that it makes complete sense.

Be kind to yourself x

TheWombat Wed 14-Nov-12 21:39:51

I wasn't with my DH at the time of his HI - we got married 3 years ago and at the time of his accident, he was married to his now exW. So I am a tad sketchy on the details- because DH can't remember much at all.

He was on ops but the HI wasn't strictly combat related - he was on a US airbase and hit the back of his head against concrete. Remembers nothing about the deployment he was on. He received first aid via US first response and then to an acute field clinic. He was evacuated by helicopter to a hospital in Saudi Arabia but for some reason the Saudis took a while before they let them get airborne. Glasgow coma scale was 4, he was out for 4 hours.

He was aeromedded home and 'dumped at A&E' in Selly Oak with all his kit, still in flying suit, exhausted and with no memory of what happened. Drs said 'yes, what can we do for you?' And basically shrugged their shoulders. Got a taxi back to BHam New St, discovered there was a bomb scare...and sat down on the kerb and cried sad

So with no info about TBI or checks whatsoever he got home, went back to work and was given clearance to fly again after a grand total of 6 WEEKS suspect DH may have bluffed the MOD neurologist a bit

After about 1.5 yrs someone at work saw him have a complex partial (petit mal) seizure - and that put pay to the flying permanently. He has seizures fairly regularly now - but always knows at least a day or so in advance that it's coming, so can hibernate and keep himself safe quite well. But they are exhausting, and the full on tonic clonic (grand mal) seizures cause bruises, dislocated limbs, and of course further concussions if he falls and knocks his head.

DH has worked really hard by himself at learning and recognising his TBI symptoms and finding ways around them / coping strategies. He is a big fan of lists and would be lost without his phone! It has taken years though. He is good at hiding his symptoms from other people and tends to play it down - but that is exhausting in itself as I'm sure you know! And when he's tired, all the other symptoms - irritability, verbosity, awful migraines, tinnitus, hypersensitivity, etc are exacerbated. It's hard because I'm sure that not everyone (really thinking here of DH's family) is always able to make the link between those symptoms and the HI.

lunar1 Wed 14-Nov-12 21:50:46

I hope you don't mind me posting. I just wanted to say what amazing people you all are. I'm a neuro rehab nurse and know some of the challenges you face. You really are incredible to cope with such difficulties at home and for so long after the accidents.

TheWombat Wed 14-Nov-12 22:11:44

You are very welcome lunar1 smile
Thank you for your lovely words of encouragement. You have a challenging job - I hope it's rewarding. I so wish my DH had been able to access professional neuro rehab care years ago. If you have any pearls of wisdom to share please let us know!

babybarrister Wed 14-Nov-12 22:18:22

I have a DS aged 6 and DH was also talking bollocks at the start. When found on a pavement at 6 am by a passerbysad who called ambulance he told them when asked that he had been cycling since the night before grin errrr no! He was going to work not doing the fkg tour de France! They also believed him and gave him the highest score on the Glasgow coma scorehmm. His head was immediately checked out with CT scan as he cannot have MRI as still has metal pellet in eye socket when by an air gun at 15hmm- described by some doctors as a bulletgrin. Anyway the impression I get is that if there is nothing to operate on head wise, effectively they just hope for the best ... It was me that got DH to see neurologist after a month as it was obvious there was a problem. DH had simply been discharged after operations re physical injuries - no information or advice given re TBI despite fact St Marys is specialist trauma centrehmm. I am v aware that if DH had not had insurance and a hobby wife who already knew about headway ( I was reading website when DH under the knife ...) things would have been v different as there is lack of proactive advice re tbi. DH working part time but any stress spills into personal and work life immediately - we are now on the third time which DH is having to pull back at work....
Love to all bb

babybarrister Wed 14-Nov-12 22:20:43

Thanks lunar and good luck to everyone on here - DH does see a neuropsychologist which certainly helps but sometimes he forgets to implement his coping strategies ...!

madwomanintheattic Wed 14-Nov-12 23:29:52

did dh have pax insurance, wombat? We did and they refused to pay out, as skull fracture and whatnot wasn't on the list of specified injuries... There was one other guy injured in the same explosion (some of the debris landed on the roof of the land rover he was standing next door and it popped the door open, which broke his nose) who Pax paid out for immediately (broken nose being on the list...) but dh got not a single penny... Suffice to say I am not a fan of Pax.

Who did his aeromed transfer to selly oak? shock that's horrifying. The fact that they let him fly again pretty much straight away is sadly unsurprising. We had one jet jockey who literally slurred with the amount of medication he was taking (he'd banged out and was being treated for subsequent back pain) but was still flying - I even had the security guys trying to stop him boarding an aircraft as a passenger because they thought he was drunk... But still fit to pilot a damn fighter. Go figure.

Touch wood we have not had szs. It is of course a background possibility, but so far, so lucky. That must be really tough, wombat.

Lol at Tour de France, bb. (And, sorry, but lol at 'forgets to implement coping strategies' grin)

If you didn't laugh, you'd cry, eh?

<waves to lunar - huge kudos to our nursing staff and trauma care - they were brilliant. 'twas only once we got discharged to the mod it all went downhill...>

babybarrister Thu 15-Nov-12 09:39:53

I agree - if you didn't laugh, you'd cry ....
Shortly after the accident DH was sitting in front of the PC at home and seemed to be sitting there with a glazed look for about 30 minutes - after a while I asked him what he was doing and he said he was "working" ie trying to log on to the work intranet in order to participate in some teleconference - just a shame he could not even remember the password grin - I am sure his "contributions" at the juncture would have been most appreciated

I feel a bit weird posting here actually, but, here goes.....dh suffered a brain injury nearly 8years ago, in a car crash. We were all in the car - me and our 2 dcs as well, but dh was injured most seriously.
He doesn't live at home, is in care home about 20 miles away (we are lucky that there is somewhere suitable so close tbh), but has little understanding, suffers seizures, only has a few words, so cannot communicate effectively - although a high % of the words he does have are sweary, so he can express his frustration, and does, often aggressively.
He was also badly injured in other ways, his right arm is non functional, and he is largely incontinent. He can walk a little with a frame, but needs to be in wheelchair if going any further than the care home. He still has a major skull defect as they had to remove part during surgery. The neurosurgeons now think the risk of further damage is too high to do anything to repair defect. So he has a huge "dent" in the side of his head. His jaw and cheekbone were shattered, and he lost several teeth.
He is in pain nearly all the time. I wish he had died in the crash.

ParsingFancy Thu 15-Nov-12 11:00:59

Oh 2blessed. sad

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