when I first had my brain injury; I was given a booklet on brain injuries and sent off to fend for myself; the booklet was of no use as I was having visual disturbances so could not see anything through the blobs of bright lights and zig zags. I did not realise that a brain injury would have such a devastating effect on my life, as the main bread winner to my husband who is aged 77, and a young autistic son, it was life changing for us all when I lost my well paid job, it was a blow to my confidence and self worth, and the anxiety of thinking about the future, made the symptoms worse.
A few years later, and I still have not received any help or support from any area but life has been, and continues to be a battle as I have problems with my cognitive abilities, short term memory, re-learning things is a no, no, and I suffer with depression and angry outbursts. I thought I had finally found some answers when I found out about headway, and the articles did explain a great deal, and described me completely, however, the meetings are too far away for me to get to so I am still isolated. The DVLA took my licence away as my neurologist said I was brain blind which means that I do not see items or people that I do not expect to be somewhere so getting around is difficult as is recognising people, places and things. Despite the DVLA recognising that I am 'blind' as they put it, I cannot be registered as blind as I do not fit the criteria so it is all confusing that some feel that I can see whilst others say I cant. I cannot go out on my own, cook or do daily things however, as I can get dressed using strategies my family have gradually introduced, social services do not consider that I need help and support. There should be a service that deals with brain injuries, and can bring all the agencies and regulations together. I worry about how many other people like me are out there and are not getting any help and support. My life is like a shadow of what it was and if it was not for my son, I would not feel it valuable enough to continue with as all I do is sit waiting for him to come home for school.
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rosemariemyria
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I am in Carmarthenshire and yes there isn't much at all.
In Port Talbot there is a Neuro rehab service run by a Dr Abankwa. He covers an area from Bridgend to Pembrokeshire. I would retry the local Services, I got a referral from my County Council adult services whom I can't praise enough and really got my rehab going after a year in a vacuum. They can also sort out some financial or respite help for you and your family. If they are still a barrier I would try and find an advocate from somewhere like MIND or AgeConcern if there is one nearby.
If you feel that you could be able to drive the Occupational Therapist from the local health board can do some preliminary testing on you on your ability to drive. If you pass these tests they can make a referral to Brookwood driving assessment centre in Cardiff. The Cardiff centre have a driving simulator and can take you out on the road for a further assessment. If they deem you fit to drive they will provide you evidence to send to the DVLA to support your application to get your licence back.
You also need to make sure that you are getting your full entitlements of benefits since your husband, son and yourself are in need of assistance. The Headway advisors whom moderate this forum may be able to give you some advice
I know what it is like searching for help and feeling alone.
I am sorry that the Headway meetings are too far away from you. Please remember the Headway Helpline is available too if you need to talk or email on a more 'one to one' basis. The Helpline is open from 9am to 5pm Monday to Friday; the free phone number is 0808 800 22 44 and the email address is helpline@headway.org.uk
Hi Rosemariemyria, i didn't catch which part of Wales you live.? i also live in Wales and it's been a long journey trying to get any help, Headway have been a great help and i have learnt a lot from the other people i meet there, if you cant get to one of their meetings you must phone them as they really do understand and care Good Luck and Best Wishes
Obviously I don't know how you received your brain injury...but my daughter was hit at the base of the skull and 3 years latter she has just been diagnosed with having Migraine Variant syndrome- this includes 'headaches' without any pain. She has just started Propranalolo -a beta blocker- for the last 3 weeks and it is already making a difference. She had been, at last, referred to the North Wakes Brain Injury Service who seem to be very good.
Having said that I have worked a lot with Autistic guys and would be pleased to discuss anything with you.
You are completely right! Wales seems to be very far behind the rest of the UK in dealing with head injuries. When my son had his accident some years ago we were sent away with the metaphorical "pat on the head" - not even a booklet! He developed severe epilepsy some years after and even that service seems to be spasmodic and intermittent. It is absolutely shocking, I'd happily pay for his prescriptions if it meant we could receive a better medical service overall. Headway have been a great help in helping us understand (although my son will not engage with them) I am sorry to see that the support and help from official sources is still as archaic as it has ever been.
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Popped at for having Brain Injury
A press release!
We need some help please !
Are your symtoms constant? Should we start calling brain injury a disease instead so that healthcare will start taking us more seriously?
