rta 25 years ago, only recognising symptoms of bra... - Headway

Headway
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rta 25 years ago, only recognising symptoms of brain injury now? Is that possible?

reebers
reebers

Hi, my husband is off for his PIP medical (been in receipt of full DLA for many years and was given a life-time award which means nothing now of course) tomorrow. I am preparing a supporting letter regarding a change (increase) in his pain meds since we filled the form in nearly 6 months ago. He had motorcycle accident 25 years ago and has been on crutches ever since, and in the last couple of years intermittently in a wheelchair. He has had a lot of physical problems, but also issues with aggression, anger, inability to cope with dealing with people or new situations, loss of focus, concentration and short term memory loss. We always put these down to becoming badly disabled at 29 and having to stop work and most other activities that gave him any pleasure.

Something i googled brought up Headway, and I realised that all of these are actually potentially symptoms of head injury. He was on a motorbike and hit the windscreen of the oncoming van with his head. He didn't have any obvious signs of brain injury and a lot of other more pressing physical injuries that needed surgery, so I don't think any scan was done, and from what I've been reading these kinds of symptoms won't always show up on a scan. I am sitting here in tears. The idea that all of these symptoms are not just him being grumpy or depressed but could actually have a physical cause is such a relief if that isn't weird. But, is it really possible?

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My husband had burr hole surgery in January for a chronic bilateral sub arachnoid haemorrhage and an acute left sided haemorrhage.

Apparently they think that his first bleed was 10 years ago after a motor bike accident. He's been having silent bleeds over a period of with the last one either late last year or the beginning of this year.

Like your partner he never had a brain scan was patched up and sent home.

We've only been together 4 years but I started to notice a change in his behaviour and personality changes two years ago. We went to relate to try to make things better but nothing changed because he just couldn't understand my perspective.

I know now that the haemorrhages where the reason behind these changes.

It's not me going mad or being the wife from hell he's told everyone I am.

So yes, it could well be. Like you i found

it was a great relief there was a reason for his behaviour x

Hi reebers. It's so hard to be disabled everyone is different. The world is not al ways caring world. Even some professional people who should understand they don't. Is so hard to loss yourself 😕. I hope he can see a light in the tunnel soon. X

Yes that is entirely possible and logical. Hopefully that in knowing this it will help you both and to be able to get added support. Perhaps go to a support group. It makes sense he may have a head injury too

I met someone at Headway who'd been told for 20 years that he had no cognitive symptoms, he was ecstatic as a Neuropsychologist had just confirmed that it wasn't true.

tbi and abi are recently recognised brain disorders. it took my traits 6months to show their ugly heads, ok i was a bit snappy i think, but now i only know im being rude and swearing when my wife tells me.

ive become an aggoraphobe and a sociophobe, i only go out with my wife and thats to quiet areas away from noise and crowds.

yesterday afternoon we managed to have a lovely meal, it was quiet so my wife could relax not having to worry about me exploding, yes a lovely afternoon, she even thanked me as we were walking towards the car. that made me feel good, because although i try,

because of my personality disorder, my tongue is my thought process.

i hope this helps you in some way, please feel frr to come back and ask more questions.

THank you for all your replies. We have a gp appointment in about 10 days regarding his pain meds, i will start the investigations then. Thank you for sharing.

sealiphone
sealiphone
in reply to reebers

I would ask the GP for a referral to the local Neurological service for an assessment of the symptoms you've described. It jumps out TBI, I'm amazed the GP hasn't thought about it.

Hi Reebers, I can sympathise with both you and your husband. I have had epilepsy since being assaulted in 1982 and after trying (and exhausting) medication after medication, I was put forward for surgery to remove the affected part of the brain (the so called 'dead tissue') This was in 2014 (November) I came round from the surgery and had three seizures immediately - then I realised that my memory was playing tricks, I could remember the minutiae of stuff from my primary school days, however couldn't get to grips with the names of objects, getting quite short tempered and annoyed with the fact that I knew and recognised something but didn't or couldn't say what it was. The more I concentrated on trying to remember the name of something, the more I couldn't say it. I still cant recognise facial recognition - as a result I am still not sure if someone is in a good mood or not. My wife has had to put up with me being desperate to be 'normal' and my frustration at not being there. I have undergone treatment and even a phased return to work as I recognised that if I was going to be 'normal' I was going to have to work. Lots of people around me said it was brave to go back to work but I needed a level of normalisation. I have also had my PIP farce. My wife is used to helping me with most things but even PIP was a bit of a trial for us. The key with PIP is do not give in! I had an initial interview with a medical professional (probably a hospital porter) she had no idea about the basics of Neurology - and how could she, only just completing her 'O' levels last week and everything. She asked a slew of questions and after an interminable wait I received a letter to say that she had said out of a possible total of 'x' points, I had scored 'nil', the next step was a review, and eventually a tribunal. There are hoops but there are rewards because at the tribunal which is independent of the DWP I was awarded my claim.

In short - good luck with PIP & don't give in, your husband is probably having things going on in his head that he can't explain - he will need time

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