Have people been helpful to you or more of a hinderance after your injury?

This is a difficult question for me personally.

In terms of healthcare after my injury I wasn't offered any rehabilitation and just thrown out back into the world. At the time I was oblivious to any of the after effects of the injury and just thought I'd get better and any headaches, fatigue, etc., were just temporary and would go away with time. What actually happened is I got progressively worse, social withdrawal became a permanent feature of my behaviour, my concentration, memory and sense of self diminished. This might be because I had injury when I was growing up and the bad habits have become part of my personality. In hindsight, I would have benefitted from being sat down and told about how the injury will affect me and any therapy I should have. Instead I've grown up brain injured and twisted, it's even worse for my parents who have had to put up with me this long taking on the role of a parent, doctor and therapist all in one.

My parents have been very supportive and I wouldn't be here now without their intervention. But they aren't doctors or therapists and I've come to realise that they don't understand me and my injury, that their talking habits used when talking to normal people doesn't help me to improve my conversational skills, for example, when I'm struggling to explain something because I've lost concentration or can't find the right words or it's taking longer to process everything, they take over the conversation and shut me up, this is something that i've noticed alot, so instead of giving me the chance to develop my skills I've learned to keep quiet, then people wonder why i'm so quiet and tell me I should talk more. Huh. Most people you meet have very little patience and they don't want to hear you struggle but then how can you improve? It's even more complicated because my injury isn't so obvious so the layman assumes i'm normal and just being awkward.

[side note: In terms of my progress besides myself, I can attribute about 98% to my parents and 1% to random people and 1% to doctors/therapists. This is surely not right, people's parents/family/friends all differ, some have people around them that guide them through it all getting them the best care available, while others are left alone to suffer. Surely, healthcare providers should take the brunt of the responsibility]

Then instead of having friends when you most need them they leave you because no longer cut it. So then how can you improve and become an integrated part of society?

Just some thoughts, I'll have more to say later but I can't think any longer.

8 Replies

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  • AFTER 17 WEEKS IN NEWCASTLE GENERAL HOSPITAL I WAS TRANSFERRED TO WALKERGATE PARK NEUROREHABILITATION UNIT WHERE I SPENT 7WEEKS. THIS WAS VERY BENEFICIAL TO ME TEACHING ME TO READ AND WRITE AGAIN ALSO TO COOK SIMPLE MEALS ..

  • I was discharged and sent home unable to walk or talk properly with loss of use of my fine motor skills. I spend the weekend sitting on the bottom step of the stairs unable to move without falling. I was told by the community services team that I would need to wait 6 months for an assessment, after saying I had called the press to come and photograph me and publish my story (lie) a nurse physio and occupational therapist came round within the hour.

  • I had help from social work team but not for some months, I had accident in Feb, was discharged in March and was retired sick from work after having an assessment from C.A.A. doctors in Summer. By September we were homeless and had moved from england to the only place that could house us, NE Scotland. It was up here that i got re hab and neuro phsycologist assessments. It was also up here that i got my DLA sorted out and had to go to tribunal. So there was a good 6 months of being at home with either my mum, my blokes mum, or my bloke till he had to give up his job to care for me. I couldnt tell you what i was doing and who helped at this point because i've got no clue! Its just dates in diaries and paperwork from solicitors that give me the 'memory'.

    I had horrific headaches that i do remember the pain feeling like an iron bar being pushed through the back of my head and coming out over my eye and half my face would droop. Crippling they were. Tiredness is still the same, i change my routine it knocks me flat for days, weeks. Moods are all over the place and i too get people doing the word fining for me when it doesnt come, or they give me odd looks when i get the wrong thing entirely.

    It used to bother me a lot but now its just who and what i am, I feel more comfortable around kids these days because they accept me for who i am without question.

    I have terrible mood swings and i feel that sometimes its the family that need training aswell as the brain injured person. My kids get frustration at my terrible memory, that they have to tell me important things a lot. Then i end up asking again and they go nuts because i should know that because they told me loads of times.

    So i isolated myself and then i went to headway then the rehab in the gym and pool which helped with the socialising then i started helping at cubs then volunteering at school then working there. I am around some wounderful kids and a few adults so i am socialising there too. Its hard work and has taken me many years. I was always outgoing before the accident so maybe it was easier for me.

  • i am with you there my first 8 months were in a private hospital before the full force of nhs incompetance and uncaring hit me for 6 months before i was told to clear out as i was too expensive to keep that despite me having nowhere to go parents are awesome my dad now 82 me 52 lost my mum in 2010 phones me every day and travels to visit me as he is today moist weeks it cannot have been easy for him mum in her last throws and me about to die but he battles on i think its his past east end london during the war frustrations depression temper our families dont deserve this but they put up with us because they love us i was asked this once to which i replied if it was them or my children i would do the same god bless neil

  • you have just described 90 persent of the pepole on here

  • The most helpful support I have had is from my mum, she never once criticised me even when my language was atrocious. My friends and sisters have also been a big help but unlike many others here I feel I have had plenty of help from health professionals, whether it was just my GP or my neuropsychologist, psychiatrists and of course physiotherapists.

    I can see that many of you have not been so lucky my advice is to keep on trying, never give up and if necessary complain. You will find the complaints procedure for any organisation on there website. If you are not able to make the complaint yourself then get someone to do it for you.

  • the specialists at hospital have been grt i cn phone thm wen i want.the drs have been rubbish.but ive chnged thm now. i woyldnt ave made it without my dghtr .my neighbours have also been a great help n support. n without headway and all the people on here i would be crazy by now.

  • it seems family treat me like a spas,but friends still respect me as a human being,i think everything is according to those ,and what they need of you...if you were the strong one,that is what is expected.as for doctors and specialists,it is the luck of the draw...believe in yourself! hope this is of help x

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