it just occurred to me

it just occurred to me

thought for the day :) and a picture of a bike carousel by destiny cycles

after seeing the post called

Congenital Aqueduct Stenosis causing Hydrocephalus

a lot of people know their full diagnosis, and i never really thought about mine

i know i have multiple areas of damage and although i am sure i must have been told at some point, i don't know exactly where these areas are.

and to be honest i don't really care, because i think i might end up over analysing it (which i tend to do), i know my brain injury by my symptoms not by the actual damage and that has always been enough, i just never considered the actual diagnosis.

but i am happy to be ignorant of it too :)

and i have just come back from a custom bike show where it was sunny and took hundreds of photos :)

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53 Replies

  • Yes, getting more information and searching for an accurate diagnosis is what you tend to do on behalf of somebody else, so you can get maximum help for them ( like Rachel and her son). But it isn't something I do for myself because,I agree that for some people, detailed knowledge can be 'too much information'

    I have a similar problem with essential medication......and the accompanying leaflet listing all the side effects. I'm apparently gonna die if I don't take the tablets, but they might kill me anyway ! So I don't read it.

    Oh........ and the bike..........makes me wish I were a lot younger, with more money than sense ! Fabulous !

    Glad you're so busy. 8-) xx

  • very busy :)

    but i reckon its a good thing not knowing because then if i knew the symptoms for an injury in that area, it would make me question my own symptoms, but as i have no idea what part of the brain does what or affects what then i have nothing to compare my symptoms against and less chance of me questioning them if that makes sense lol

  • I think it makes sense!, I may have to think about it a bit longer, but it helped me make more sense of my symptoms, when I was told the damage had been done to my cerebellum, which I then had to google, of course!! Doesn't make the symptoms go away, but I've always needed to know the ins and outs of everything, I can't understand why I feel fine lying down but not standing and I can't get an answer on that one, any ideas anyone?

  • Definitely identify with the lying down/standing but can't explain it. Hate it when I wake up feeling ok and start to make plans.........then I stand up.........& stagger !! xx

  • that's exactly how it goes with me, I'm forever hopeful that one day I'll stand up and feel fine, I was never this unbalanced in the rehab unit, it's definitely got worse over the last 12 months xxxxxx

  • bit of imagery for you here, I woke up and had the image of the pair of us rattling round our respective houses like pin balls in games, made me smile!!!! Told youmy mind never stops!!!! Take care xxxx Janet

  • Thanks for that,'s really what I needed today. Such a ridiculous image but so funny and strangely reassuring.

    Feel better already... despite the 'wobbles'.

    You take care too. Love Cat xxx

  • Like the bike too, bet it was a good day xxxx

  • was a great day, took over 300 photos

  • Wish I could get into photography, give me an excuse for wandering around, p'raps I'll start in the garden I've got some wicked sunflowers I put in this yearxxxxx Janet

  • i had a camera but didnt knowhpw to use ot properly but my local headway set up a photography group where a man from the birmingham photographic society would come and teach us

    so we do this once a months

    and the good thig is that photographs are my memories, so when i forget i can look back, and although i dont remember taking them, i know i did and i was there

  • I'll just play around with the point and shoot we've got for this winter and

  • WOW! Fabulous photo. Thousands of hours spent on it, I'm sure but what a beauty! Thanks for sharing.

  • I've just been studying the elaborate artwork. It's so exquisite but 'Rocker' & the colours are beautiful. Would this ever be ridden or would it be just for exhibit ?

  • I'm no expert, I would think it would be a 'fair weather only' ride. No wet, mud, snow. It is obviously someone's passion. Very talented. Notice a bit of a theme with our names!

  • When I joined Headway I still had three ageing not too original ! Hope you've got a really mysterious, interesting story behind 'Wolfie2dogs' ?? 8-)

  • I'm afraid I haven't. I am interested in the genetics of the dog, hence 'Wolfie' and I had 2 dogs! Now just have the one. Sorry no mystery.

  • That's ok, at least your an animal person. My cats have all gone now so I'm cat-less for the first time in my life ! :-( x

  • i have a cat who thinks his name is 'shut the F^%K up'

  • and here is a photo of him i took earlier tonight

  • I had a cat last year,bought it before I became I'll, it was a short haired exotic, beautiful, it caught FPV and died last August, very traumatic :-(

  • That's very sad Janet. xx

  • I don't feel able to replace her yet, maybe soonxxx

  • Aww. He sits like a little person.

  • i was like, please don't move whilst i get my camera, normally he would have gone by the time i got back, but he was still there lol

  • whata lovely cat, maybe!!!!

  • Brilliant! We had a cat when I lived at mums who appeared from nowhere and ran under your feet half way down the stairs, can't say on here the names he got called, one began with T and ended in T! X

  • It's good to have them as companions but they do leave a gap in our lives.

  • Yes they do. My favourite cat of all time was a big handsome b/w tom who struck terror into humans & fellow creatures with vicious teeth & claws. But he was like a teddy bear with me....very loyal and loving . Had him 19 years and really miss him.

  • Now we live in a digital age there's no excuse for not taking loads of pictures. This was was taken years ago on proper film, when I was a bit more mobile than now. fbcdn-sphotos-g-a.akamaihd....

  • Great photo, scruffycat ! .......Love that name (& Wolfie2dogs) 8-)

  • Another fabulous photo.


  • great photo indeed, i have never done film photography only digital

  • Mark, Wolfie & I were wondering whether that beautiful bike ever goes out on the road (obviously on a clear, dry day) or whether these are just purely exhibition pieces. I can't imagine anyone having the nerve to get even a speck of dirt on such an immaculate machine but, there again, is it a crime not to ? x

  • its 50/50 some show bikes are difficult to ride (just pretty much a short distance) and others do 1000s of miles (albeit maybe not comfortable miles) but i know people from both camps

    and there are so many people who say what's the point if its not going to be ridden in anger

    but without the likes of builders that build show bikes pushing the boundaries of what can and cant be done then these ideas do not get filtered down and inspire others, it does bug me when i am at a show and hear people moaning about show bikes, but yet they are the first ones they will photograph

    the boundaries should be pushed and unfortunately that is expensive

    but also these bikes are an advertisment for the builder too, because a lot of their work comes from show bikes

  • Thanks for that, biker. I understand both arguments and now you've explained that there are such bikes as 'show' bikes I can appreciate it more readily as a work of art. There's something really beautiful about the type of art which is also an intricate, functioning piece of machinery.

    There's an oil refinery plant a few miles away from here which, during the darkness when it's singled out by it's own lighting, is a really awe inspiring sight, with its own particular beauty.

    My mum once questioned my judgement after I took the children to see it one night (It's out in the middle of nowhere) and although my son thought it was 'ace' Lubilu told her it was very scary and she just wanted to get away ! Oops.

  • Thank you. I'll be getting big head. I could go on but, the old days are best left alone. Go on then just one more


  • very nice indeed

  • I can only apologise for the small renditions you get, it was the first thing that come to mind. They look more impressive when they're blown up. Honest!

    The actual scruffycat. Not mine, just friendly. fbcdn-sphotos-c-a.akamaihd....

  • So this is the 'namesake' moggy......certainly lives up to his/her name but gorgeous with it ! :-)

  • I know this is a forum for discussing our brain-injury-related issues but it's been really enjoyable talking about other stuff for a change. And surely these 'other' subjects are all part of our lives anyway, with activities we're supposed to be aspiring to.

    No, we don't want it turned into any old chat forum but there's something uplifting, yet comforting, in talking about our interests and experiences whilst being aware of each other's limitations............just once in a while................xx

  • I totally agree. It is good to share. On a selfish note I have really enjoyed seeing the pictures and the chat. Too easy to focus on the limitations, forgetting we are still real people. x

  • maybe we could name the posts so people dont get confused so a post starting with Off Topic: 'post title' then it could be used as a filter for non brain injury discussion, i just thing we have to careful we don't overdo it and have more off topic than on topic posts,

  • I agree. x

  • too true. Medicine doesn't always have a label and comes from unexpected places.

  • One last matter how long I stare at it, I can't work out what your new photo is ?? ...sorry.... viewed it from several angles but

  • Got it now ............the interior of smashed up motor.........yours??

  • yep .I had to crop it to get it on

  • sorry dinner break but, gave mee more thinking time. as this was taken over 20 yrs ago now.

    It's a Mini (remember this is 1992, so the old shape), with no roof, which is handy, as this was cut off to get me out.

  • I know none of us like to hear those words " Aren't you lucky", but looking at that wreck I'm afraid they're the first words that come to mind ! x

  • I know I am but, I don't very often feel lucky

  • I know they're the forbidden words &, like everyone else, I hate it when anyone says them to me. It's all relative though. I mean, what people are really saying is " You're lucky not to be dead...........but what you do now with your damaged life is up to you".

    I think I meant ......'Jes** Ch**st'........I can't believe you survived from that wreck !'

    Do you mind me asking what happened and how you've been affected ?

  • I would like to tell you all the ins and outs but I don't know a lot for certain and, sure as hell, nobody will commit themselves. Years of training to pass you onto someone else. You're better off clicking on my pic.

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