learn more about me....

So as promised I said i'd let ya all know a bit about me and my condition....

I suffer from a rare condition that makes the body attack its own muscles!
at age 15 i was told by 20 I'd be in a wheel chair!

So I decided to take up bicycle racing and did so for a few years untill I had several black outs in one race season and had to stop after a bad crash

I continue to ride a bike to and from work and im now 25 and NOT in a wheel chair.....

But its not easy to live with this condition...
I have to wear leg supports while im up and about as unable to walk very far without them....
like this......





but i get by ok...
it has had a few good effects....
I used to be on special tablets when younger but they have no effect now so dont take them.
they had a lasting effect!
well lets just say.... there is a reason the camera lens is big in the other picture

what to know more about this just ask...
I dont bite and happy to share!

oo john are they painful too wear . doo you have too wear them in the bed / ? hope you dont mind me asking

john, I have to say you are carrying on admirably despite your condition. Salute! I hope they are making progress in curing your condition or in maintaing your health so it gets no worse.

I need only wear them while im walking about so not at night...

they are not painful no, annoying in summer as it get bloody hot with these on!

there is no cure as the internal damage is not repairable

I make the most of what I can do...
I never let it hold me back, but it is progressive so over time it get worse!

but I dont think about it, and just carry on!

dont mmind people asking peaches, if you'd llike to know more just ask....

its rare and only 1 in 10,000 suffer from it and of them 60% get it miss diagnosed!
I did!

it is there from birth but usually shows later in life, the earlier it starts the worse itgets later in life!
I had it from birth, so not looking forward to later years in life!

I tend to wear baggy trousers/track bottoms as it hides them...

I used to wear shorts in summer, but dont now as get too many looks from ppl!

I dont advertise the face im disabled..... and i do not want to be treatedd any different to anybody else!

ok some things i cannot do obviously!

but why should the fact that I have a few missing muscles and a few very weak ones stop me from living life and having fun!

Life is but a test.....
and I think I might just pass!

I think you're passing your life test each day, john! Hopefully the progression of your condition is slow to the point of almost being arrested. You're keeping the good attitude and that's half the battle if not more.

yes thats true cap!

positive attidue!

well my condition has waves....
its accelerates then slows the repeats at times....

last time was 4-5 years backbut im now inthe midst of another bad stage!
each time i end up that little bit weaker and less independant!

what i liked most about being wiith my ex was the fact none of it mattered and i was in a better state of mind.

Its since we split I am now in this bad patch again
maybe coinsidence......

thats why i am not too hopeful of finding another partner as each time i hit this bad patch i will get more and more reliant on them and I have not had the best of luck with girls with this condition....

Im sure they see me as "damaged goods".....

deary me john your legs dont look gud . but you have too think about that you do have legs i have a friend who has no legs it is very sad

everything will be fine for you bbe's

how did your helicopter flying go, john?

john you know i dont treat you any diffrent i tell you when your boring about your cars and stuff , because you know i dont like them much so we have a good friendship your a good guy ,

you look really good boy so never worry about anything .and as claire says about her friend having no legs well you do john have ure legs so thats something dont u think ? xx

john you know i dont treat you any diffrent i tell you when your boring about your cars and stuff , because you know i dont like them much so we have a good friendship your a good guy ,

you look really good boy so never worry about anything .and as claire says about her friend having no legs well you do john have ure legs so thats something dont u think ? xx

Helicopter club was not so good

think I have a broken battery charger as no battery wanted to work properly

I agree with you all, yes there is always those worse off then yourself!
and yes I do still have my mobility....

but from time to time it can bring me down....

but i have friends who always stand by me and get me through!
and have you lot here!

Well waiting for new leg supports as i broke mine

without them i cant walk very far at all....
been waiting 2 months!
hoping to get new ones in few days!

fingers crossed as they messed up twice already!

oops.. how did u manage that?

thing is they are designed NOT to bend!

but as i walk they flex slightly and over time they stress then a stress crach shows and just grows as i walk!
i normally get 12 to 18 months from one pair!

its usually the left that breaks too!

ah so its wear and tear

yeah!

that lumpy bit has carbon fibre in it!
I broke that too!

john, photographer, car enthusiast, and all round destructive force

lol

HA HA!

like it!

maybe i owt to change my sig?

"Destruction garanteed"

haha.. maybe it could be your catchphrase

well it's too bad they can't design a little flexibility in your walkers, john - while still providing the necessary support, of course.

thing is cap, the idea is to imobilize the ankle so I dont hurt myself while walking....

its a catch 22 thing!

Hey name's craig im 17 work part time at the moment. I like meeting new people.
like listening to music mostley rnb. want 2 know anything else just ask.

hi craig...welcome to the forum...u go straight to the adult section to post lol

well this morning I picked up my new leg supports!



and then got my bike from the repair shop too!
£62 to get it fixed!