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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 Mon 12-Nov-12 16:06:34

Aha! Found you! Hello BB. I thought James and Beverley's book was fantastic - struck so many chords for me and DH. Was great to meet them on the webchat, I hadn't seen it advertised so am very glad I logged on at lunchtime today!

Are we the only MN-ers with TBI affected partners? Surely not..

madwomanintheattic Mon 12-Nov-12 16:19:58

Nah, there are a few around.

Dh got blown up in June 2001 <small wave to wombat>. Training accident though (he was safety staff <sigh>).

Fortunately, these days, life goes (mostly) on as normal, but it's left me with some dubious mental scars to do with coping etc - we were overseas. I was pg with ds1 at the time (only 10 wks, so he was pretty much bathed in cortisol from the get go) and he has ADHD type ishoos which neurologically could be traced to gestational stress. Dd2 was born later and suffered birth injury and brain damage, so has cerebral palsy. We're all about the brains here.... <sigh>

So, I fell into 'coping' by default and essentially ended up with a partial breakdown in 2008/9, with massive PTSD type flashbacks to both dh's accident and dd2's birth. You do have to make sure you look after yourselves as well - I've always been a coper, but it turned out there was a limit! (My mum had also been dx with breast cancer and I was supposed to be writing up my msc - and we had just received a posting order back to where the accident happened... Oh, and then they told us dd2 wouldn't be able to come as no sn kids).

Honestly, it's no wonder I chose this username wink.

All good now though. grin

babybarrister Mon 12-Nov-12 16:39:11

prettybird also has been affected by TBI

my DH had cycling accident in 2011, not as bad as James Cracknell re physical injuries but similar brain damage sadly ...

wine to life's copers hmm grin

TheWombat Mon 12-Nov-12 17:02:30

Hello madwoman welcome to our quiche!
Sorry to hear about your DH. His TBI must have happened within a year of my DH's. So many questions..Has he been medically discharged? Did you end up in Selly Oak? My DH was there but after that there was no real follow up care, and he just fell through a lot of the gaps between military and NHS. Meh. We've really picked up the pieces ourselves - but on baby barrister's suggestion I'm going to try Headway again. My DH is on the Headway forum - anyone else?

What a time of it you have had - must have been immensely difficult. It does sound a lot like your family has a lot on its plate 'brain wise'. One of the things I've realised about the TBI effect on families is that it leaves less 'leeway' when other things go wrong.

Babybarrister Like your DH, my DH's TBI symptoms sound very similar to James Cracknell's - but with less severe physical injury. I read the book and felt relieved in a way, that someone was putting into words the things that we are experiencing. I think that the damage is so hidden, it's hard for others to see sometimes - and even in our family unit, it has taken a while to link things like mood swings and irritability to the TBI, and to work out how that might mean we can approach or contain them.

TheWombat Mon 12-Nov-12 17:06:23

<drinks wine gratefully>

prettybird Mon 12-Nov-12 17:11:21

My mum fell off her bike and suffered fronto-temporal damage 5 and a half years ago.

Although she was wearing a helmet (which was badly compacted), the thing that probably saved her life even more was that she broke her pelvis first, before landing on her head.

She actually did make about an 80% recovery - the thing that is probably most difficult, in hindsight, is that we didn't appreciate enough the recovery that she did make in the first couple of years, before she started to deteriorate again, with a form of dementia triggered by the head injury sad It was a rapid-onset form, so that within 3 years of the diagnosis, she had died.

Headway were brilliant, both my mum and even more so with my dad. In mum's obituary notice, we put "Rather than flowers, we would appreciate a donation to Headway".

TheWombat Mon 12-Nov-12 17:24:15

Oh prettybird sorry to hear about your mum sad It must have been such a shock. This is the first time I've heard that dementia can be triggered by a head injury. It really is such a pernicious thing.

What a lovely idea to donate to Headway instead of flowers for your mum. I am really impressed to hear so many good things about Headway. I think DH was put off when we investigated our local branch a couple of years ago, but perhaps it's time to try again.

ParsingFancy Mon 12-Nov-12 17:36:49

Can I come in and lurk?

I didn't like to post on the Cracknell webchat as I don't have a TBI, but probable neuro problems from illness. The chat was ringing a lot of bells though <stuffs ear plugs back in> and on a practical level I've had a lot of the same issues.

prettybird Mon 12-Nov-12 17:39:30

It doesn't trigger in everyone - plus I think the fact that mum was 66 when the accident happened also made her more susceptible.

They think they are starting to understand why it does trigger in some people (the healing process within the brain doesn't stop, so therefore become a destructive process sad) and more importantly may be able to develop a way to stop it happening smile

My mum's death may do a little bit to help in that, as her's was a well-documented brain, with CT scans and MRI scans from the initial injury onwards.

TheWombat Mon 12-Nov-12 17:59:17

Welcome parsingfancy please do stay and 'plurk'. The ear plugs definitely strike a chord with the wombat household. My DH uses a hearing aid for his tinnitus when it's bad - have to say the audiologist was very helpful. Loud noises set him on edge - not easy as he's a fan of loud rock music - not a good combo! grin

prettybird That is an interesting theory about the healing process going into overdrive. There are some autoimmune disorders that work like that, aren't there?
There will be many TBI sufferers who owe a lot to your mum's well documented brain in the future thanks.

madwomanintheattic Mon 12-Nov-12 18:13:58

Prettybird, so sorry. It must be small consolation to know that ultimately your loss might help others x

Wombat, no. As we were o'seas, all care was received (or not, lol) locally. I can't even remember if we were offered the chance to return to the UK - I suppose we must have been at some point! They flew dh's nok out comp A (he was originally only given 20% chance of survival) and his mum stayed with us for a long time. I had an 18mo toddler as well as being pg, so I think I spent the next year on autopilot! It was all a bit bizarre, as in a previous life I was the one that used to deal with comp As transport and on move, and shipped many critical aeromed passengers... To be on the receiving end was a bit like finding yourself in a very odd dream. My toddler ended up moving in with my childminder (I had left her there 'for a couple of hours' when I had received a message about dh having had 'a bit of a bump on the head' and needing picking up from the hospital in the city. I ended up on dh's second aeromed flight of the day to the neuro hospital on a completely different city, and had to call the cm and say 'ummmmmm, can you keep her? I don't know when I'll be back.'..) ya gotta love the army.

In dh's case, the fact that he wasn't wearing his helmet probably saved his life. (It was on the ground next to him whilst he was chatting to a VIP). The weight and force of the debris that caused his injury would have snapped his neck if his Kevlar had taken the force of impact.

I totally agree about the leeway aspect.

I also know nothing about Headway. shock When dh left the military and received his medical file, he was faintly amused to find pretty much nothing about his accident or subsequent treatment on his file. It looks to have all been removed (presumably by the BOI etc) or possibly didn't even make it onto his med notes at all, presumably because all of his treatment was through civilian agencies. Bizarre. Absolutely right about the gaps between the NHS and mil. <sigh>

I haven't read James Cracknell's book. I read Richard Hammonds, which made me cry, half in relief, half in flashback terror. Might have to get hold of a copy.

babybarrister Mon 12-Nov-12 21:34:20

Earplugs here toogrin and I love music sad - cross between living with the Taliban and Oliver Cromwell due to ban on music and dancing!!

Please do try Headway - they are a v professional outfit IMO and stuffed full of booker blokes who would never normally be seen dead in a self help group grin. I had to drag encourage my DH to go first time but after that he goes by himself and very much enjoys it and gets great support from it. Prettybird - sorry to hear about your mum and I am sure your family's generosity in relation to medical research will come to bear fruit in the futuresmile

babybarrister Mon 12-Nov-12 21:35:26

That should have said blokey blokes ie many accidents are sports, drinking or fighting related grin

madwomanintheattic Mon 12-Nov-12 21:44:25

grin mmmmmm, most of our arguments subsequently were of the 'wtaf do you think you are doing, you aren't supposed to be x,y,z yet' routine. He appeared to be veering between believing he was clearly immortal, or couldn't give a stuff if he wasn't. Most wearing! I even ended up having a furious row with mil, who had let him drive. Not that I imagine she had much say, tbh, but I was livid.

Fortunately these days he's got a bit of a sounding board with dd2 - having to think about safe ways she can accomplish as much as poss I think means he's had to accept his own acquired limitations...

Will look them up, though.

prettybird Tue 13-Nov-12 09:56:27

Headway is also good for campaigning to sort out the gaps in provision. Dad got quite involved with that.

My mum "fell" through a hole because, although she was eventually admitted to the rehab unit (at 66, she was one year too "old" hmm - but I think the fact that a) dad was a doctor and b) the newspaper article comparing her treatment unfavourably with the treatment she got in India meant that suddently a place was found could have been a coincidence ), once she was discharged, all the community services were geared up to old people and as far as they were concerned, a "fit" 66 year old who could walk was better than most of the people on their books. (it was even called COPS - Community Old People's Service)

The fact that she had been fit enough to be cycling on holiday in India, the previous year had been Uruguay, year before that in Vietnam was so far out their ken..... Recovering from a broken hip, dealing with Alzheimer patients was what they were used to, not a strong woman who was trying to get back to cycling, who had a wide circle of friends and travelled the world.

Dad ended up paying for private physio and speech therapy.

This of course was before the dementia set in. In fact, it was the speech therapist who picked up that something "new" was happening and that not only was she no longer progressing, she was beginning to deteriorate. For a former English teacher (and I am still being contacted via Facebook by former pupils as she was an inspiring teacher - my surname is an easy one to search) that was particularly distressing and frustrating.

Not sure how the NHS is going to cope with the increased retirement age if they continue to have 65 as the cut-off date for active rehabilitation hmm

babybarrister Tue 13-Nov-12 10:06:57

I have in fact just copied and pasted this thread to Headway as it seems to me that they need to do a great deal more to ensure that everyone gets to know about their services as they are a very good organisation indeed. Not sure what info the MoD have about Headway? I only knew about them as I am a lawyer - ironically we were sent to a specialist trauma unit in London who discharged DH with no info at all...hmm. If I had not been a pushy bitch he too would have clearly fallen through the gaps too. I wrote politely to the hospital about that and suggested that they should at least hand out Headway leaflets to anyone who had clearly had a knock to the head - let's hope they now do so smile

babybarrister Tue 13-Nov-12 11:02:39

There is also another charity - the Brain Injury Rehabilitation Trust which works particualrly closely with ex armed forces ....

VinoEsmeralda Tue 13-Nov-12 11:49:29

Another one here with a DH with TBI who had a serious accident in 2005.
Didn't know about the web forum but came across it last night. Ordered book for DH as Christmas present.

DH had CBT and it has been v helpful in many ways. It has given him good strategies to cope with day to day routines and give some of the anger a place.

He also can't deal with loud noises or wild movement ( 'luckily' for him he also lost hearing on one side so he just turns an ear;), still needs to rest frequently but due to other physical issues he has, he is in constant pain and can't sleep for long so that might mask some of the recovery.

Do your DH work again in any shape or form?

VinoEsmeralda Tue 13-Nov-12 11:50:50

That should read: Do your DH's work again not DH

babybarrister Tue 13-Nov-12 12:25:14

mine works but part time and I do wonder how long he will be able to go on ....

VinoEsmeralda Tue 13-Nov-12 12:36:58

Thanks BB. My DH went back to work briefly but was unable to cope with the pressure ( senior management job) and became more and more aggressive. He used to be a well balanced person who dealt with anything thrown at him in a calm matter.

However I must say I am immensely proud of him for not becoming depressed, keeping himself busy and being persistent in doing certain task albeit taking longer.

madwomanintheattic Tue 13-Nov-12 14:13:56

It's shocking, prettybird.

Dh does work. It was an interesting few years when he went back. The mod were very good a lawsuit does that so they were keen to establish a 'light duties' programme etc etc, and he was posted to a desk job next. He had to work out some mean coping strategies, and was taking way too many drugs, but he was pretty determined, and, I guess lucky. after about 6 years the headaches and tinnitus reduced - he used to comment frequently on it, but I haven't heard him do so in a couple of years, now. He wasn't in a position to go on any further op tours (I can't imagine what would have happened in a PTSD type scenario, to be honest, let alone from a physical pov). He 'retired' from the mod a couple of years ago, and has a civilian job.

He was very lucky. Through dd2 we are involved with an adaptive sports organization, and we frequently host brain injury survivors groups for kayaking, skiing etc. (if anyone is holidaying in the Canadian Rockies and needs an understanding instructor for just about any mountain sport, I know a whole raft, lol). It gives us a chance to get some perspective, too. We're doing pretty well.

TheWombat Tue 13-Nov-12 16:04:41

Welcome to the thread VinoEsmerelda. Sorry to hear your DH has had a TBI too sad. Interesting that he is also sensitive to loud noises and wild movements - definitely no more head banging for my DH! We went to an Ash concert not long ago and my DH did suffer for it afterwards despite earplugs (as did I wink) .

TheWombat Tue 13-Nov-12 16:05:24

madwoman your experience of MOD 'aftercare' seems rather similar! DH has very little record of his treatment - although I suspect that's because the severity of his injuries were not recognised for a long time. He was flying tornado F3s for another 18 months after his injury until a dr realised something was very wrong. It makes me shudder...

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