For those who can't get help in South Wales.

[haverfordwest]

I had a TBI in 2018, after 4 months of asking for help with constant headaches, balance issues, hearing, I was told about Neath & Port Talbot Hospital. I rang and got an appointment in the Neuro Rehabilitation Section. It was such a relief to find doctors, physiotherapists, etc that knew what I was talking about, and giving me explanations for my symptoms. Telling me some would never return to how they were, some may partly fix, but most importantly telling me how to deal with how my life was going to be. Wishing you all the best in your search for your "brain fix" I'm still looking and finding lots of helpful info on here.

[pinkvision]

Thanks for the info 👍

[cat3]

Persistence has been key in getting help throughout these years of NHS 'drought'. Well done you ....and others can benefit from your story. Fingers crossed for better funding soon ✌️🤷‍♀️

Keep on smiling at the 'calamities' in this new life m'love ; it's a short cut to sanity ! Cat. x

[haverfordwest in reply to cat3]

Thanks Cat, smile is all we can do, if we give in to the tears too much, life would be unbearable.I was so lucky to go to Port Talbot, I dread to think what stage I'd be at now if I hadn't gone there. Fantastic knowledgeable staff, and they didn't treat me like I was stupid, even though I do feel like that now. It is so nice to be able to write things on here and not be judged by everyone, but given support and solutions that help, that's why I can't stop telling everyone how good this site is, long may it last !!

[haverfordwest in reply to cat3]

Hi Cat, I can't get the last bit of your message, I can read as far as "and know what its really like living with brain injury"

[cat3 in reply to haverfordwest]

Wow ! the whole message has disappeared. 😟

I remember saying how I come here most days since 2012. And, although my family are loving & supportive, It's only here where folk understand the internal impact and issues of 'morphing' into a less able version of ourselves.

(...ask me what I said 5 minutes ago and I'm lost!). Take care m'love. Cat. x

[haverfordwest in reply to cat3]

Isn't it nice to hear that someone is having just a bad time as you, and you will know that I don't mean that in a horrible way, but as knowing that someone else understands what is being said, and the effect on your brain is unbelievable post BI. If you get my drift 😵‍💫. Life would be horrendous without this site, whoever thought it up should be knighted. I reckon they have saved hundreds of lives with their advice.

Look after yourself. X

[cat3 in reply to haverfordwest]

💐x

[Teazymaid]

hi was this a private rehab you went to ?? As I keep getting told it’s not available in Cornwall where I live .. just been told no vestibular physio ( balance ) in Cornwall . Months of waiting and again not available .. but I did see a physio and told her to forget the brain bit and just look at the damaged hamstring , ideas on walking without looking at the ground and hip pain .. luckily she was so nice and is investigating all my issues plus found me a crutch to help to see if my balance improved but I could only get a right one as the hospital didn’t have left ones 🤔 Sue 😊

[haverfordwest in reply to Teazymaid]

Hi Sue, it was via GP but only after I had spoken to them myself. I think they requested my info from GP, I don't know if the GP has access to scans and MRI or if they contacted the Withybush hospital direct. It's a bit of a trek for you from Cornwall, but I had to stay in for observation, but was allowed home on weekends as there were no tests done then. I do hope you get sorted because you need proper professional help and guidance.

[Teazymaid]

Im still fighting but think my determination to get better in the beginning has made me invisible to the rehab part .. just a shame now the reality that I will never be the old me and don’t know what to do plus the deterioration in legs, cognitive, and know eye sight has left me fighting to be seen and heard .. it’s still so nice to hear about positive things as this helps me realise I’m not imagining it .. private balance physio is my next step 😊 sue

[haverfordwest in reply to Teazymaid]

Don't give up on NHS funded treatment, go back and ask your GP if you can be sent to see someone in Neath and Port Talbot as there is a specialist unit there. It's worth a try. Good luck. X

[haverfordwest in reply to Teazymaid]

Yet again I've just written ya long message and lost it 🤬😡🤬. Go to GP and ask if you can be sent for referral to physio for balance, I went to one that was for stroke sufferers. I balanced on a ball with a plastic edging all round. Make sure you have something to grab in case of being unsteady. Focus on something eye level and keep looking at it the whole time you are balancing. My first attempts were 3 seconds but can you imagine how good I felt when I got to 30 seconds 🎆😆. It hasn't stayed at that it a practice makes perfect exercise. When that finished I started a gym referral and the instructor stays with you until you have got the hang of the equipment and after that is always in the room to help anyone that's struggling, or like me just forgotten how to do it. The exercises made me feel a lot more alert and balance improved a bit, not totally, I still walk as if I've had one too many without a stick or take my eye off the road. 🤦 I'm sure you know the feeling. Take care and get some referrals from your GP, they are definitely worth going to. X

[Rosebud66]

tank you thank you, I will look into that!

[Teazymaid]

I will send a message to GP and see what happens .. thank you for your help .. I have just ordered to walking poles designed for balance issues along with other problems so keeping fingers crossed on theses .. I’m thinking like I did all the way though this that im going to get back to the old me . I didn’t realise that my balance was bad until the last neurologist did tests on me then I remembered I only walk looking at the floor stumble on uneven ground plus still walk into the wall or person beside me . Gob smacked that I’ve spent 3+years walking so deferentially than I used to and only look to the side when I stop walking .it is amazing what we do to get by Sue 😊 also I’m always pressing the wrong buttons and losing texts 😁oh the joys of a brain injury 😂

[haverfordwest in reply to Teazymaid]

Haha, that's what I like to hear, being able to laugh at ourselves is all part of the awful after effects of a BI. If you can, go to see your gp cos they may know of other referrals you could have . I think a lot gets missed when getting a call back from the receptionists. Here they have gardening groups and walking groups, hopefully you will have more variety of classes down there. Even if it's a swimming class or something it helps to talk to other like minded people, but not noisy groups as they tire me out after about 15 minutes. Good luck with your search.

[Teazymaid]

thank you I will keep looking .. I has been doing my version of a yoga type class until the hip pain got to much .. this group is the best place for me as you all know what I’m trying to say .😊