People don't understand.
I have about a 24 hour memory and I'm struggling with life a little bit.
Because I'm a Skydiving instructor indoors and outdoors, people think there's nothing wrong with me, but I had a car accident about 13 years ago and I still feel about 27, not 41.
I used to live in Spain and was the passenger in a car accident over there. I know very few people in England and spend most of my time on my own, apart from the odd dinner with my parents.
Welcome Barry. You've found a place where people DO understand and demand nothing from you other than you be yourself.
If you haven't already, you might benefit from calling the Headway helpline for printouts on traumatic brain injury and its after effects ; the no. is freephone 0808 800 2244 during office hours.
Hope we'll be hearing more from you as you settle in. Cat x
PS, just seen your second post regarding marathon....Headway will be able to advise you on that ; you have the number. Good luck. x
As I said, people don't understand. Even PIP took my benefit away because they believe there's nothing wrong with me. However, I've got no idea what I ate yesterday.
Do you have a local Welfare Rights dept. or Citizens Advice where you can get support with benefits appeals ? Or you could try the 'Advice Now' benefits website for practical advice and support in appealing.
Memory issues are a big problem for many of us after a brain injury and neither DWP advisors or medical assessors are sufficiently trained in recognising many of the after-effects of Bi, or even acknowledging they exist. I've won two separate appeals in the past with the intervention of both CAB and Welfare Rights officers ; sadly these agencies have declined in number since then, but it varies from area to area.
Hope you can access help from one of these... 🤔
I managed to get my brain injury and cognitive reports written down as it went before the courts a few years ago
Barry I relate to that, I do not have a clue if I wash up or watch on television
Headway groups vary greatly but essentially it's a chance to get together with others who have insight to the lack of understanding. The Headway helpline or a Google search will tell you where your nearest group meet up.
My first meeting with other TBIs was the first time I'd said something about my post injury experience and people nodded and smiled because it chimed with their experience.
Some groups do have access to Benefit advice for their users but regardless you will at least find support with such difficult matters as Welfare Benefits.
Hi. It's nice to 'meet' you. I think you will get a lot out of this site. It sounds like you manage parts of your life really well but need to make improvements in other parts. I really get what you say about being alone a lot. If I didn't go to my local Headway group I wouldn't speak with anyone for weeks on end sometimes. As Cat said, the Headway helpline is really good to call. They are the best place for information, advice and general support of all kinds. They are also there if you just need a chat. I have also found the Scope helpline on 0808 800 3333 really good for advice regarding benefits.
Don't forget, now you are on this site, you can post whatever you feel helps you - whether you need a moan, need advice or just want to connect with others.
All the best. 🌸😀
Hey Barry, Re: Not knowing what you ate yesterday. I know what you mean when you say this however others both within the BI community and outside it may interpret your statement as " I don't remember what I ate yesterday". Two different things.
Many busy mothers, adults with two or three jobs, night shift workers, people who endure a moderate level of stress might also be able to say truthfully they do not know what they ate yesterday. But they will be able to give you example foods of what they eat regularly and if they guessed, sat down and slowly thought through their day yesterday, they would likely get about 80% of it correct. I'm guessing this is why people don't understand you. They believe what you express is a normal occurrence.
I'm going to guess based on my past experience that there are many things underlying your statement which you feel but find it difficult to express clearly because you don't understand them yourself because your brain is not connecting the dots and building a bigger picture. So you are left with experiencing part of an issue, feeling an emotion related to part of an issue without being able to grasp the full whole of the issue or express it, discuss it, process it, review it, assess it, alter it, upgrade it, improve it, or relate to it. This is how I was after my BI.
I had the odd experience of being disconnected from my memories . I didn't have a sense of identity for a while. I began to understand how our identity is not something fixed but something which the brain has to check up on daily (by reading memories) to remind us who we are - daily. (I found this surprising). I mean, how do you know what you want to eat? What tells you to choose certain foods? It is the programming we received as a child before the age of 7 but even up to age 11 that most dictates how we react as an adult to unknowns in our life. Both nurture and nature, e.g. the way adults treated us and what they said to us AND the environment, country, house, caravan, tent, box we lived in, slept in and ate in (felt comfortable in) when we were learning about the world. This formed our self identity. After a BI, the sense of self gets jumbled up and memory is impacted.
Memory function returned when I took myself back to my earlier years. My theory is that the pathways built up until we are 11 years old are like the thickest branches of the tree in the brain connections. When we actively use our thickest branches, what it does is enable us to get back a sense of self. This builds confidence. If you have damaged some of these earliest thickest branches, your brain may find it hard to rewire around that. Any replacement rewiring where it grows a new thinner branch connection may require a lot of repetition to maintain this new pathway as the default is to follow the thickest branch. So in effect, we manually have to redirect the branch pathway until that becomes the new default pathway.
Coming back to your statement, I can empathise with it. There were times when I didn't know what I liked to eat and consequently could not have told you what I ate yesterday or any day for that matter. There were no pictures, smells, tastes or memories in the box called favourite food let alone the box that said yesterdays satisfying meals.
Going into the kitchen cupboards was discovery exploration each day which is tiring as you know you should know what is in there, and you know you shouldn't be surprised when you are surprised at what you find in there, but eventually through using memory games on the computer, and visiting places I frequented as a child, I was able to start to control the brain memory pathways. Some came back in dribs and drabs, others came back in like a whole area of the brain download in one day which was an emotional huge impact. I drove through a place I used to live, sat outside the house I used to live for about 10 minutes, and the whole 5 years came back, all at once, overwhelming but full of happy warm memories which was like a memory bath, lovely, great for confidence.
The point I want to iterate is this. By doing what is familiar, stuff you did as a child, you build confidence. It is comfortable for the brain and your nervous system to do familiar things. Learning does not occur easily under stress. By building confidence, you start to try things outside your comfort zone - just a low level of stress. When you do this, you are likely to hit on and reconnect a few old thick branches which starts to help to bring back the old you and the memory function improves.
Neuro linguistic programming breaks down memory into three types, auditory (hear), kinaesthetic (touch) and visual (see). My preference before my BI was auditory. When I went back to my childhood haunts, I sat and sat and sat and eventually I started to hear conversations I had in those places. And names of the people started to come back, some faces, some emotions. This started the mammoth journey of regaining my emotional self and reconnecting with my self identity, the person having the emotions. Before that I was like an empty vessel. All relationships meant nothing as I had no memory of them.
I agree with you that BI and memory loss is not fully understood as it is so individual and because it is individual, doctors do not have a one size fits all to mend it, and because resources in the NHS are so tight, they cant afford individualised assistance. So the general view is, if you can eat and clothe yourself, bathe and shop for yourself, it is irrelevant if you can or can not remember what you ate yesterday.
However the limbo that this feeling of being disconnected from self leaves you with is such a void, the raison d'etre or the reason for being, is not clear, the purpose of each day becomes an anomaly. I took myself back to my childhood, as my purpose. I started back at school, of self taught Youtube videos to gain back my balance, my memory, proprioception, nerve function, taste, smell and so much more. And so my full time job was recovery for years. That was my raison d'etre.
I am working full time now in a paid job. My memory is better than some of the others at work! It is a journey, not a destination, this BI recovery thing.
Keep posting. Hope you keep a diary. I found rereading my diary helped me clock my progress which gave me confidence and inspiration to keep going as I could see improvements.
By having dinner with your parents, you are already engaging on the path to regain your earliest memories of up to 7 years old and in some cases 11 years old. You are on the right path to gaining back your memory. : - )
Just as an after thought, I work with someone who has had a mini stroke but doesn't call it that or recognise it as that (called it stress!), but was in hospital for 4 days, completely passed out, had numbness etc and acts accordingly with bad memory, no planning skills, erratic mood swings, volatile etc etc etc. At least you are aware of your situation!
As for sky diving - Great job. Sounds like a lot of fun! : )
Hope some of my ramblings helped. Know that there are many reading your posts that also understand but are too challenged to reply right now. By the fact you took yourself from wheelchair to distance runner suggests you have the stamina and patience to explore several pathways to regain your memory. Don't give up, its in there.
Nutrient support was essential for me. Search Magnesium L-Threonate.
High absorption magnesium penetrates blood brain barrier.
MagEnhance - on Amazon is the one I use.
Take 1 capsule 4-6 hours before bed. Wait a few days. If it agrees with you (no headaches), then take daily for a week. Wait a few days, see if you notice you feel worse without it.
The tub says take two. Due to having a BI I never took 2 daily. Some report it can give you headaches. Sticking with one gave me good dreams, deep sleep and better memory and a better control over my circadian rhythm, felt more awake on waking and more tired quicker dropping off to sleep.
Research shows it builds up in the body and peaks after 4-6 weeks so continuous use is required. In the early days of taking it, after I finished the pot, I would drop off in my ability to use memory. Then started on them again and memory started to get better again.
I still take the odd one every once or twice per week to maintain levels. I don't miss it now when I don't take it and can go weeks without it. Memory is now down to regular use for me, online games and making myself remember stuff in the morning. Wake up, lie in bed, think ok what will I do today, what is my to do list, what is my must do list, what relaxation time will I do, what meals will I eat, and what exercise will I do. All this requires memory. Running through and listing the possibilities. Makes the day more enjoyable once I've planned it in my mind before I get out of bed.
Hope you find what works for you Barry. Best wishes.
Hi Barry, nice to see you here! Welcome along to our happy band, you'll soon feel at home and comfortable enough to ask us anything you like
Andy
Lets get the plain speaking bit out of the way - if you are a SkyDiving instructor (a technical and dangerous role) and are capable of running the London Marathon then you quite rightly shouldn't qualify for PIP.
However, it doesn't mean that there isn't anything wrong with you. I always use two examples; professor Stephen Hawking, he had a degenerative disease couldn't walk or talk but had a much sharper mind than most of us put together and Oscar Pistorius whom lost his lower limbs but could still run 100m in just over 10 secs. So are they disabled ?
Like them you have gone on and done something really difficult that most people wouldn't do once let alone multiple times.
With your particular injury, what are the main things that are affecting your life ?
I don't know if you are a skydiving instructor, or if you are genuinely going to do a marathon.
If so then it would be difficult to justify A PIP claim. However if you are making light of the situation, you are not doing yourself any favours. Any claim has to reflect your disability on the worst days, it needs to be blunt and to the point.
You can't use PC language, I know that when I have completed these forms, I have ended up sitting there in a really dark place, because what has become normal to you, is laid bare, and your little bubble is punctured.
Loneliness is a common result of brain injury, you loose those near to you, because unlike a broken arm, your brain is you, and this often changes who you were. It is frustrating and hard work interacting with "brain intact people", because they can't see what is wrong or different, if you say you have a BI, it might explain something, but it might also appear that you want special treatment, if you don't mention it, then allowances you need to be given, just leave you looking odd. Example I don't get jokes, I can understand the humour, but I just don't find them funny, so someone can go to great lengths telling me a joke, just to receive "oh", or a discussion about what is incorrect about what was said.
I wish you luck with skydiving, remember to pull the cord, the marathon, or the benefits.
I also don't find jokes funny, I don't watch TV because I don't remember what I've seen, I don't have a girlfriend because of my memory and so on.
Before the accident I was a skydiving instructor with 3500 jumps, so for me skydiving isn't a dangerous or technical role. (Very similar to walking to the shops).
Also the British parachute association will not give my qualifications back, so I can't teach in England.
My injury/problem is: I get tired quickly, I slur a little when I'm tired, my strokes paralysed the right side of my body and my left leg, so now I limp a little, my eyes focus at different speeds, I don't get hungry, but my biggest problem is: I have a 24 hour memory and still feel 27.
Richard Hammond had a similar brain injury and he gets PIP.
Hunger, thought that was just me. I was a RNMH, and a specialist in violence reduction. I couldn't return to the role and a comparable role didn't exist.
Don't worry about Richard Hammond. Everyone is different.
The claim is for you. What you have just said is far more revealing how this has effected your quality of life. Right side weakness, impacts on mobility, if you were right handed, then this will effect carrying, fine motor movement, fatigue, this will prevent you carrying out normal activities, slurred speech, gives the impression of being drunk, can make it difficult to communicate, your eye sight will impact on safety when out, like crossing roads, reading.
You can see from that brief paragraph you wrote how you need to describe things to the DWP etc. You will also need to evidence anything you say, so medical reports, Drs letter's, investigations, more the better.
When I was moved from DLA to PIP, they dropped my mobility component. I asked for a copy of the report Atos had completed, I had also recently undergone a fit for work assessment, this was completed by a Ministry of Health Dr. The second report completely contradicted the Atos report and then some. I had also got my GP to write a report.
Unfortunately the whole appeals process is unnecessary awkward for anyone, let alone someone with BI. The DWP didn't allow it to progress to court, and increased my award.
Also if you can obtain PIP even at lower amount, you maybe able to claim your council tax back to when you were injured, this comes under the housing act, different councils apply this with slight variations, but basically if you receive PIP, then you can ask for a form from the council to claim on the grounds of severe mental impairment, I know not nice words. This you can claim even if you have moved areas, your GP only has to sign the form and state approximately from when your impairment started, the GP cannot charge for completing this form. You will have to claim for each council separately.
I claimed despite moving three times since my hiccup.
As cat3 said Headway can give you a lot of support from claiming benefits to social contact.
Good luck
I was right handed, now I'm left handed. :o)
I asked for a letter from the Dr describing my BI, she charged me £40 for it.
Yes a generic letter from your GP will come with a charge, sometimes you have to swollow the cost. If the letter is specific to the DWP, you might be able to claim the cost.
I was lucky with my GP, he was so annoyed at the DWP that on that occasion, he didn't charge, possibly another Dr at the practice would have.
With regards to the council tax, it is illegal under the housing act for the Dr to charge, the form usually states this.
Thirteen years council tax, could be better than a poke in the eye, it is also illegal for the council or GP to ask why you have not claimed earlier. As far as I am aware there is no limit on time.
Hi Barry. Welcome to the site. I am in a different position to you as my BI is congenital as opposed to being caused by an accident. However I completely understand what you say about people not understanding because you look and act perfectly well. I do have to deal with this as I have no physical sign that I'm impaired at all. My advice would be to try joining some social groups so you can get out and meet people. But if you need to talk or rant this group will always be around for you.
Congenital? Will your BI get worse or stay the same?
I've got an embarrassing scar across my right eye and a three inch scar across my throat. It was lack of breathing and loss of blood that killed me.
Hi again. Yes, congenital in that I was born with it. To cut a long story short I have a lesion in my brain, though it is not a tumour. It is monitored every few years and is currently stable, so not getting any worse or growing. But that isn't to say it might not in the future. You might think this sounds horrible but there's little I can do about it. Its position renders it inoperable and even radiation treatment is highly risky. I have been advised to leave well alone and so far that is what I've done. Don't worry, I realise you're not after sympathy. You're just telling it like it is. I have a few scars on my tummy where I've had operations for something related to my condition. They aren't on show (my bikini days are probably over anyway) but I would like to think I understand something of how you feel.
Hi Barry, I would say I am like you being new here & posted my first mail the other day. The people here seem quietly positive about things & that feels me with some hope for the future . I have to believe that things will get better for they cannot be much worse. I was the victim of a fatal head on road traffic accident which put paid to my ever working again due to my various injuries which are way to numerous to mention now. suffice it to say I have had to accept what this accident has done to my life. I hate the fact it has limited the things I could once do having full mobility this I no longer have. I have tried many things to get into but my biggest release from the Severe PTSD & depression was I hope going out on my boat an sea fishing none of which I can now do as my circumstances have changed & not for the better sadly. I had my accident back in 2007. I did not know it then but getting back to anything like I once was is a very long process & I have to believe I will make it & so should you. You are still able I hope to continue with your work & enjoy the thrill of freefall something I always wanted to try but my back could never take the strain any more so it is another thing missing on my bucket list. We must have something to aim for so you need that thrill like we all do so how about joining another group & trying another sport like perhaps scuba diving? or jet ski? we must all find something that gives us a reason to go forward my choices are limited so I am writing a book an it helps to use this method for on a page I am able to do anything I put my mind to with no limits. So what about you? I am here most days if you wish to leave a message I will reply to you ok? Have a great day.
I'm not. 
First Post
Hard to know what to say
Not quite sure what I'm feeling
Loss of identity..post BI
First time post
