Acquired Brain Injury (ABI) This is my disability and is widely ignored. Why? I have no idea. I have a short video now uploaded to the well known site here >>

Credit to Brain Injury forum for the video. A big thank-you, as this short video shows what can affect us and how misunderstood we are. Please enjoy and try to understand we are normal but have trouble being understood. This made me smile today, this made me sad today . This made me cry today as well!!!

This is me in a nutshell, but... I take the time to help others more able bodied than myself, please help us to help you too..... To understand the complexities of being disabled... You might not see it, you may not hear it, but.... we are who we are and that is a person, that has feeling and wants too... We need help just like you but sometimes we are known as 'spongers' and much more a label we don't want/need or like.

I am very much misunderstood now you can see why!

A cousin of mine had a stroke in his late 40's, so these things can happen at any age. in my family there is a history of epilepsy running through the male line. My father had it in his 50's onwards. His Father also had it. It proved to be a killer in both cases.

Sorry for your lose UB I had mine aged 49 6 years ago. I lost my father to this 24 years ago so suddenly. You will understand this more than most, this is why I am so passionate about the disabled on the forums. Here are some statistics' from Headway>> https://www.headway.org.uk/about-brain-injury/further-information/statistics/

What makes this even harder for some is they have no support and subject to enforcement for some reason. I have noticed that GTSTL has viewed this thread and I hope they may add to this?

I have come a long way with some great support from my daughter. But... Unfortunately I often lose everything I have learned in the last 6 years and have to start all over again. that is a side effect that I hate its draining and makes me upset.

Like when I sit in the disabled section on a bus and get told to move, its dangerous for me to sit anywhere else. My local bus company had a bus taken out of service to remove me from the seat (normal one) because I had a fit and slipped from my seat and got stuck. (Fire service removal) so even though my mind is damaged I live the best I can.

The latest episode was me at a checkout and passing out and collapsing. I was fortunate to have the medical card that CAG has produced on my lanyard.. http://www.consumeractiongroup.co.uk/forum/showthread.php?424122-Medical-Alert-Wallet-Card&highlight=medical+alert which was very useful but out of date at the time (no longer) As the thread states its a hidden disability with some awful side effects that are not apparent to those that see us in public...

Sorry for your lose UB I had mine aged 49 6 years ago. I lost my father to this 24 years ago so suddenly. You will understand this more than most, this is why I am so passionate about the disabled on the forums. Here are some statistics' from Headway>> https://www.headway.org.uk/about-brain-injury/further-information/statistics/

 

 

What makes this even harder for some is they have no support and subject to enforcement for some reason. I have noticed that GTSTL has viewed this thread and I hope they may add to this?

It affects others as well. When my Dad started to have epilepsy, it meant him andmy Mum stopped having holidays abroad which they enjoyed previously. Also he did not want to drive or could not for periods, so it does affect quality of life previously enjoyed. My Dad was lucky to retire early on a full company pension at the time.

My cousin actually featured on a TV programme where they looked at his recovery. It was a hospital programme where they were interested in a young stroke victim.

The Epilepsy is awful, it happens at anytime and therefore having the card with me helps me a lot. I am hoping that I can stay at home for some time, but with the concerns expressed by others it may be I need to consider part 1 accommodation sooner rather than later. I love my independence but there is only so much a 25 year old woman can do for her old man...

I remember my last holiday well as it was just before my stroke, I have yet to go away at all since. A I am too scared and B the insurance is stupid. I am as you may be aware a member of a new stroke club and now a Tuesday club so hopefully I can change from being alone to having real world friends. Time will tell..

As far as other things go I take everyday as a new day. Making time for me (a Little) and time for others (A lot) maybe time to swing that around?

I've never really talked about mine:

I received my ABI as a child. I had undiagnosed epilepsy. Unfortuantely for us, it was a case of a few tests to check whether after that seizure I did indeed have epilepsy and because nothing was picked up, they just left it. I spent most of my teenage years (I was 11 when I had my ABI) with migraine and someone did suggest that it's possibly why I've had depression.

Anyway, a serious problem for me is memory. You can say something to me and I'll forget it 5 minutes later. Yet, I can remember something you said to me 2 years ago. I remember virtually nothing that happened before my ABI. Strangely, I do remember the date - Monday October 9th 2000.

Dad has an ABI and talking to him at times can be a tad frustrating - we both have the issue of not being able to remember certain words. His came after falling down a flight of stairs at work. He'd gone to his doctors a few days previously complaining that he felt a bit strange; but couldn't figure out why. It turns out that the reason why he'd fallen down the stairs was because he was having a seizure.

Nystagmite

I see from your post you too have shown how much this affects people. I too cannot remember what I did yesterday and sometimes I have to use a book to write down what I've done where I've been and why. Plus many more reasons.

This is why I posted up the diary sheets in my stikky. They are a tool I use daily.

My daughter would totally agree with your post too. We are very hard work but don't see it we don't know it and we certainly do not understand it.

I was sitting here on my thread yesterday and I noticed a poster from the bailiff section was viewing it. They sat here much longer than needed to watch they video and comments. Why they are a bailiff..

But sadly they did not post a reply. Why I don't know. Maybe it was an eye opener to them. I hope so. Time will tell if the come back and post a response which would be great..

As said before within the video is a list not a comprehensive list but an idea how this small insignificant injury has such long lasting features.

I am sorry to hear you suffer as I do and glad I am not the only one prepared to put personalised information on to a thread.

It can only help if others become aware. Unlike that poster in my other thread about mobility scooters, so upset was I said I will count to forever lol... have a read of their comments it won't shock you but if like me the post is well you decide!

Thanks for your reply, Mikey. Not being able to remember what I did yesterday is a problem for me as well. And so is not being able to remember what day it is!

A lot of people I know with ABI have complained that one problem they have is that it has affected their hearing. (it's too sensitive) I had the opposite issue - I had sensitive hearing as a child and somehow, my ABI appeared to have "cured" me of this. I now have the same hearing problem again for a completely unrelated reason.