New post, old member

[timd59]

Good Morning

I should apologise for not being a bit more proactive on this site. I suffered a TBI caused by an AVM 2 years ago (this caused a subarachnoid hemmorage) this has left me with permanent double vision and a balance problem. I spent 4 months in hospital, only left there because I forced it, and have still had no voluntary communication from any of the team. I only know what has happened from forced conversations with my Son and long suffering Wife (who is now my carer). I was previouusly very active and find the whole episode very difficult to deal with. I think that it is only my determination and my Wife's good nature that has got me this far. I have assumed that the injury has caused some brain damage and that there is no chance of any improvement from here (again this is only my asumption as I have no confirmation fom any of the hospitals). I have come off some of the daily medications given to me by the hospital and GP (with there knowledge and consent) and try to walk daily if my Wife can amanage it (should add that we are both in our 60's). Any help that anyone can give would be gratefully accepted.

[leila65]

HiI'm a carer for my son who had TBI nearly 3 years ago. Glad you have the support of your amazing wife...good support is vital in recovery I feel. The one thing I would say is don't give up seeing any improvement. Every brain injury is different and you find that doctors are very non committal in giving you hope of improvement ( in my experience). That said, with my son I have seen huge improvement in certain areas with regards to speach and cognition and I honestly believe it's due to him not giving up and still trying to do things he used to do...mainly playing computer games. We also play Countdown app on his phone....and that's improving BOTH our brains....we can both see how doing these mental games can really effect and build new pathways in the brain.

Find something that interests you, and don't be put off if you are really rubbish at it at first. Iv seen for myself how effective doing even just 20 mins of this each day can help.

I realised after the first year that if he was going to improve we would have to find ways our selves to help his recovery. Sadly in our area there isn't any support..... But don't undestimate the value of doing simple things that support your brain.... Getting out in nature and meeting different people, all help with memory.

Really hope you find what works for you. Best of luck

[timd59 in reply to leila65]

Thanks for the reply. Sorry it has taken so long to reply to you, everything takes so much longer these days! I am doing what I can, but am really worried about my Wife. She appears strong but now has to deal with everything (and me!). I do hope things get better for you both. Good luck

[leila65 in reply to timd59]

You are doing really well no need for apology. It will be tough for your wife, it's the toughest thing iv ever faced for sure, but you know what, it makes you realise what's important in life and what's not. I hope she has support for her, if she ever wants someone to speak to tell her to contact me.

Thanks, we have more ops to go yet but we will get there. Keep going you are doing well.

[LostGenius]

Hi Timd59,

Sorry to see you have joined the rest of us in this ‘club’.

Losing a perfectly functioning brain is very hard to deal with... some days can be easier than others. Most people will never understand unless they go through it themselves.

Try not to be too hard on yourself thinking of what you can’t do anymore. I think the more active you were the harder it is when you are forced into a new life with limitations. The only was I’m getting through this is day by day and some days are easier than others.

All I can say is don’t give up on your recovery... even if those so called professionals tell you it is hopeless or permanent. You mentioned determination so you have first thing you need on the road to healing and coming to terms with what you’ve lost.

All I’ve learned in almost 6 years of this brain injury hell is that a brain related injury that seems hopeless or permanent can improve (all be it very slowly and slight) with some hard work and determination. The brain is amazing!

The hardest part is finding the right way to heal/improve some of the deficiencies you are experiencing and getting the right guidance on where to start especially since each brain injury is so unique and complex. This site helped me more than any medical professional. Just reading what others were experiencing and trying in terms of treatment was eye opening.

You mentioned ‘permanent’ double vision. Have you been referred for vision therapy at all? I had serious issues my vision (apparently my brain shifted in my skull slightly - which meant retraining my eyes from the stage of a baby first seeing the world in simple terms). I was told nothing could be done for the double vision and other issues... basically just accept things and my new crappy life and just live with it.

After a lot of my own research I came across vision therapy. I went through weekly visits (maybe in total 2-3 months) with lots of exercises I had to do daily at home on my own (so ultimately my recovery was in my own hands) to help retain my brain in seeing correctly which fixed the double vision (now it rarely happens except when I overload my brain too much), it fixed deficiencies in depth perception and it slightly helped my balance since part of the issue was vision related. In some cases they prescribe new glasses with prisms to help fix certain types of issues.

My balance is still not great but I just purchased this balance board thing I found online called 60up. Still haven’t set it up since I need help doing that but I’m hoping it will help with balance.

Best of luck in your path to recovery. 😀

[Elecheetah in reply to LostGenius]

Nicely written genius

[timd59 in reply to LostGenius]

Thanks for the reply. Sorry it has taken so long to reply to you, everything takes so much longer these days! I have not come across vision therapy, but will investigate it further. The local eye hospital have reverted to obscuring one eye as the Prisms were not working. I am doing what I can, but am really worried about my Wife. She appears strong but now has to deal with everything (and me!). I do hope things get better for you and good luck with the balance board!

[FlowerPower62]

Hi time, I do sympathise with you and your wife. My husband had a TBI 3 years ago, we're a similar age to yourselves. I've battled to find ways to help him, and things have helped to varying degrees. Puzzles are good, he does Lumosity on his phone, which is free. I read a very good book called Ghost in my Brain by Clarke Elliott. He talks about puzzles and also says tinted glasses helped him. You don't mention fatigue? If you don't suffer from that you're very lucky as it seems very common with brain injuries. Motivation seems the hardest thing, trying to get Ian to exercise is hard but I think it's important. Less exercise means he gets heavier, which means it's harder to exercise. A vicious circle.

I wish you both luck in your striving to improve. Xx

[timd59 in reply to FlowerPower62]

Thanks for the reply. Sorry it has taken so long to reply to you, everything takes so much longer these days! The local eye hospital have reverted to obscuring one eye as the Prisms were not working. I am doing what I can, but am really worried about my Wife. She appears strong but now has to deal with everything (and me!). I do hope things get better for you soon.I do enjoy reading so will follow up on your suggestion. Lumosity is something I have not looked at, yet! Good luck