Page 2 of 3

Re: Complete Change after Brain Injury

Posted: Thu Mar 09, 2017 7:01 pm
by jenny lucas
That sounds really scary.

The 'over-sensitivity' reminds me a little of when my husband developed epilepsy from brain cancer (spread to brain). He had to be careful not to be 'over-stimulated' by anything, as it could trigger a seizure. I also had to learn not to try and talk to him or communicate, or even touch him, when he was having a seizure (only 'petit' thank goodness, after the first 'grand' one which luckily happened in hospital), as his brain was 'overloading' (so to speak).

I do wish you as best as possible at managing your very distressing situation. It shows, in a way, both how strong, and simultaneously fragile, our brains are - and therefore our minds and our selves......

Re: Complete Change after Brain Injury

Posted: Thu Mar 09, 2017 7:02 pm
by susieq
Dear Lou

Thank you very much for your post - I'm sure it is very helpful for carers of those with brain injuries to read the 'other side of the coin'.

You must find it very hard to cope with especially as you have an autistic son who needs your care and attention to boot.

Re: Complete Change after Brain Injury

Posted: Thu Mar 09, 2017 8:21 pm
by MrsAverage
Hi Lou.
Welcome and thank you for such an interesting and informative post. The similarities to asd/autism meltdowns are enlightening.
I get mini shutdowns when I get a sudden migraine. Instantly can't cope with light and sound. Brain stops working. Luckily for me a sleep and medication put me right, but best of all is avoidance of triggers in the first place.
I can only imagine how much worse you and your son find it.
Bless you both
Xxx
MrsA

Re: Complete Change after Brain Injury

Posted: Thu Mar 09, 2017 9:26 pm
by Pet66
Hello Lou
I found your post very interesting. I wonder if my husband has those sort of feelings in his lucid moments, with his dementia. I think you are very brave and considerate for sharing with us.

Re: Complete Change after Brain Injury

Posted: Mon Mar 13, 2017 12:15 pm
by Louise_170312
You are all very welcome.

It's good to share things and I'm just glad I can shine a tiny bit of light on this whole situation.


Lou x x

Re: Complete Change after Brain Injury

Posted: Thu Aug 16, 2018 9:18 pm
by Gareth_18081
Hi, my wife suffered a brain injury in September last year and has lost 50% of her vision but i have been caring for her for nearly 5 1/2 years now. She also has Lupus.

We have moved into a bungalow from our house of 9 years which we loved and both cried when we had to leave as my wife struggled with stairs. Its a new start and we will try to make the best of it and i get support from my family and her mum but part of me feels my family partly resent my wife for putting this pressure on me everyday in looking after her and changing my life forever as she was once a well woman although i may be being too harsh or even completely wrong i dont know! and her mum doesnt really get how day to day we are both affected. I too have feelings of wanting away but i love my wife although i feel like a carer nowadays and not a husband. I feel so guilty to think like this. I get carers allowance and luckily we are ok in that respect but id swap it all tomorrow for a normal life with my wife. She always tells me to walk away and sometimes we argue partly down to my frustrations but mostly due to her changes in attitude from her brain injury and she can be very cruel at times and very hurtful.

Any advice would be great!

Thanks

Re: Complete Change after Brain Injury

Posted: Sat Dec 01, 2018 9:26 pm
by Colin _1706
I don't know if anyone had heard of Headway? I was referef to a local Headway unit by adult social care. I have several severe physical and complex mental health issues after a truly nightmare road traffic accident in 2001 during which I almost died twice. But I also have pre existing health problems.
I had to fight my GP very hard for over 3 years to be given a referral to a neurology specialist. The GP just refused to help. Well I can be quite stubborn and tenacious. OK I can be a pain in the bumb.
Long story short I was diagnosed with a severe brain injury or an ABI as they are usually known. An acquired brain injury.
I am back under the neurology team and I've had another detailed brain scan because my nice new GP said I have all of the symptoms of MS. Although I've been told it isn't MS since by the neurologist he hasnt discharged me.

So yeah I do know a bit about brain injury and it made me sad to read for some people how their family member had changed. I am very sorry but that is par for the course and it can be a major change or it can be subtle and complex. Because of not only my brain injury but also chronic ptsd, anger problems ongoing, cognitive problems, memory problems, large gaps in my memory of significant events, my brain injury has an impact on my motor control for walking and general hand to eye coordination, my life is difficult. Due to oxygen starvation parts of my brain died and this lowered my IQ as well. I was a highly qualified design and project manager in the construction professions prior to the accident.
I was also diagnosed with paranoid schizophrenia in 1981. I have suffered with severe depression and I did have drink dependency. I have been teetotal for over 19 years now and I don't miss it at all. Even through the accident and a period of homelessness I never started drinking again I stayed strong.

I understand many things in life much better now, but I am also a carer for my very lovely partner who was also wiped of the road by a hit and run car driver 10 years before we met online. Quite a unique connection to have.
I am her carer too. We have similar injuries.
I almost died twice on that terrible day and it's left me a virtual recluse because so very few can understand. Only other people who have been through the same or similar can understand. That's why my partner and I get on so well. We also share a passion for motorcycles as riders and as bike racing spectators.

Sorry I've waffled on a bit.
But anyone please ask me if you have questions about brain injuries? I can talk about it.

Re: Complete Change after Brain Injury

Posted: Sun Dec 02, 2018 12:27 pm
by jenny lucas
Colin - sounds like your old GP should be struck off! Appalling that he didn't IMMEDIATELY send you for a headscan. We are told over and over and over again NEVER ignore a blow to the head!

Remember Liam Neeson's late wife? She took a fall while skiing, blow to the head, wasn't worried.....then in the night developed a headache and nausea (yup, rising intracranial pressure), rushed to hospital - bleed on the brain and died.....

It is utterly unforgiveable he didn't refer you for a headscan.

One of the things, alas, that I find increasingly these days with the NHS is that now the GPs have the budget over referrals, they are getting VERY stingy - before they didn't care as it wasn't their responsibility .Now they don't send people on.

SO, increasingly, we the patients have to resort to 'going private' for the essential referral to a consultant - we have to pay £150! to achieve what should be automatic on the NHS. Once with a consultant, as you discovered, THEY know what is dangerous or now, and then send you on for tests.

It's appalling this did not happen for you.

Re: Complete Change after Brain Injury

Posted: Sun Dec 02, 2018 3:35 pm
by Colin _1706
Thanks for replying jenny, I hope I don't put people off replying because of my health problems. Stigma does isolate.

I often find that GPs seem to be passing judgement rather than providing diagnosis.
After joining my new gp practise I was seen by a senior partner who was unhelpful. But after a formal complaint they understand me better now. I will not be judged by any other person, they have no right.
I say walk a mile in my shoes because I cannot.

But yes you do have to fight hard to get diagnosis of problems of a serious nature and blatantly obvious. You have to fight too hard and we feel that GPs look at my partner and I as write offs and not worthy of treatment. This is genuinely how we are made to feel just because we have lifetime injuries and we are too ill to work. Our health is deteriorating due to their nature and also as a result of ageing. But the medical professions have no right to cut us out of treatment and also critical support.

The three year fight I had with my old gp blocked me from accessing support at Headway. Mind you the adult social care team were also responsible for refusing to enable me to access Headway by insisting I had to have a diagnosis of brain injury from a hospital consultant and my GPs word wasn't good enough.

Its all politics.

Re: Complete Change after Brain Injury

Posted: Sun Dec 02, 2018 3:45 pm
by Colin _1706
Back to Headway.

My local Headway branch were totally brilliant. I am so glad to have had their support. I had no idea how much help and support they give until I got there. I was so convinced after one visit to Headway that I fought my GP practise tooth and nail to get a brain injury diagnosis so I could join Headway. The experience every week of my attendance was very significant. They helped me to better understand my brain injuries and to recognise them. Well I think the other service users helped a lot with that too. Headway is a community although I didn't understand that until I joined their community.
Talk about hidden disabilities?