I feel some people are very negative about their ataxia which I feel is quite sad so I am going to post some pictures of my achievement, I use a wheelchair full time and was diagnosed 15 years ago.
The first is hang gliding on honeymoon, no adaptive equipment or specialist school just a do what you can do attitude.
Well done, annasgonesailing, keep it up 
Although I haven't reached the stage where I feel I need a wheelchair,
I have noticed that my ability to mentally function is better when sitting.
And I've often wondered what I would actually attempt, that I wouldn't
dream of doing now
Sitting down alleviates the need to expend energy on simple everyday
movements, things that exhaust you when you're on you're feet, because
so much concentration has to be brought into play to keep yourself safe.
I'm certainly not saying Ataxia must be easier to deal with if you use a
wheelchair, far from it.
I'm only musing on the fact that my attitude is more positive when sitting,
I feel more confident
It just goes to show how many variations there are with Cerebellar Ataxia,
how differently it can effect people. xBeryl
Beryl, I've never thought about it like that before, I have always said that I will fight tooth & nail against using a wheelchair permenantly. However, I do have one, and use it very occasionally, more for the benefit of people with me, shopping centres, guided holiday tours etc... and you are so right, I do find it so much easier to interact with people, don't get so tongue-tied when sitting ( of course, that is, if the other people are sitting too! nothing worse than being looked down upon?) it IS because when not sitting, I am concentrating so much on standing still and staying up! Having said that, I am still going to walk for as long as I can! I hate shopping centres and holidays are getting very few and far between.
Positivity is always the way forward and like people and Ataxians, comes in all shapes and sizes
Mel x
mel, you could always only use a wheelchair part time, I only used mine in college initially (my mum had a bigger mental block about me using it so I wasn't allowed to use it at home) and left the chair in college.
Yes Anna, I truely think it could be a way forward for me because I hate holding people up and we all know anxiety exacerbates our symptoms, it's no failure to listen to your body and do what it tells you occasionally? Challenges are good too though, where did you go for your honeymoon, they must've seen you in your wheelchair, did you have to sign a waiver with your travel insurance? Sorry for all the questions, I have so much admiration for you... I'd love to 'wing-walk' but got knocked back due to insurance 
you might just have inspired me to try again! Thanks x
We went to Cornwall, we were sailing with the Jubilee Sailing trust from Singapore to Australia when Dan proposed last year and we met sailing in Canary islands and I travelled to Dublin a lot a couple of years ago as Dan was living there, I just have normal travel insurance but my ataxia is on my insurance file I'd be covered if my chair was lost by the airline or fell and broke me ankle though.
I had a quick google and fly 2 up seem to suggest they're up for working with disabled people give them a call and see if they can help fly2up.com/wing-walking-c-1...
Aerobility specialise in disabled people flying but as pilots rather than wing walkers.
Keep us updated
I have FA and decided to use a wheelchair at 17 as I was getting too tired otherwise.
Did you go on a course to learn how to use it safely? I saw a post recently relating to this, and after googling I found details of this type of course being run in the UK.
I totally understand how much effect tiredness can have, it's not just
physical, it can really alter your perception mentally too.
I've just managed a few minutes on my treadmill, it wasn't so much
the physical aspect that held me back, I just couldn't get my brain in
gear to programme it xB
i've not gone on a course for using a wheelchair
Wow! That is awesome! Good for you, bet the view was amazing - free as a bird!
I was diagnosed a few years ago and am very lucky only in early stages, decided to start and do all those things I've wanted to do. Bought myself a motorbike - suzuki tu250x. She's a darling and I'm getting braver each time I go out. Just love that wind on the body, make you feel free!
Sometimes it is hard to be positive, I certainly have my off days. But agree with everyone it's the only way to cope with this disease!
Have a great day!
Hi Marina63
I to have Ataxia (for over 20 years),when I said I was going to get a motor bike the neurologist said,you can't "you will not get insurance",
have you checked you are covered.
Best wishes
If the dvla (who will have talked to doctors) have said they're happy to issue a licence it would be illegal discrimination for the insurance not to insure you because of your ataxia. If your balance gets worse I am sure a motortrike would be the DVLAs next step
If I were you,I would still check with the insurance company,it was third party claims that the neurologist was referring to.He told me this in 1992,the law may have changed since then.
Best Wishes
Hi Annagonesailing
I have just misread your reply,I thought it was a motorBike you wrote,many apologies.The neurologist had just filled in all the paperwork for the DVLA and did not realise I held a motor cycle licence as well as a driving licence (they make mistakes sometimes too)
Best Wish
Thanks Willowpuss. Will check my insurance. I am only in very early stages but know what's coming after watching my Dads progression. I am lucky and have a chance to tick off some of those boxes before it's too late.
Whatever it takes, if you can still get a buzz, do it xB
I agree, but some people diagnosed find it hard to deal with it! But i am always posistive, my motto is just get on with it!
I do what i can, this weekend i am entering in the ataxia spring classic on a hand bike Attitude is what you need when you have ataxia, a good attitude that is...........................
I'm pleased with your personal achievements and your attitude to your ataxia but I must stress that if people are negative (undefined) to their condition, the last thing they want to hear about is how marvellous someone else is doing and what they're missing out on by being so glum.
I was trying to say something similar but could not find the correct words, thanks
Hi Annagonesailing
I agree totally with your comments,I to have Ataxia (over 20 years) and have fought it every inch of the way (perhaps now we have gone Metric I should have said millimetre !)
Best Wishes
Willy wonka by no means am I boasting, hang gliding doesn't require much balance or stamina. I would like a thread of the things people can do rather than people claiming that their ataxia is stopping them when it isn't.
I'm sure your intentions are pure and I'm genuinely pleased you do such amazing things. The trouble is pure intentions are often never understood and the excluded feel ever more isolated.
Not everyone is effected exactly the same way with Cerebellar Ataxia.
My problems have been mainly balance and vestibular. The past 6mths
has seen me sitting so much I've put a stone on.
It's really heartening to hear people are able to get on and do things that
give them pleasure, it's important to try and keep motivated, however
insignificant the topic is. Something as simple as knitting has had me
really frustrated at times
Because of the degrees of severity with the condition, I realise mobility/
sight and speech are compromised for a lot of people. Also, many of
us will say that what we can do one day, we can't do the next.
It's a confusing, disorientating, disabling condition. When I can do, I do. xB
Dear Annasgonesailing, Kudos to you, as you are truly an inspiration!!! Having a positive attitude makes all the difference! ;o)
I couldn´t agree more.,
but, what´s the meaning of "hang gliding on honeymoon" anyway ?
Love
Jurgen
Thanks for posting this. When I first started looking up things to do with ataxia (which was not until the point when I started to use a wheelchair) it was one of the most depressing things I've ever done. I don't know, it's like ataxia is often portrayed as a death sentence, and it's not. It's great to know that it is possible to do things, and that it's just a lack of courage holding me back. It gives me hope!
wildone I initially had big problems classing myself as disabled too, here is a short list of fun stuff to try though;
Jubilee Sailing Trust tall ship sailing can do bursuries too (usually 50% for your first voyage)
RYA Sailability sailing using a variety of boats but primarily chosen for stability, usually quite subsidised.
Riding for the disabled horse riding and carriage driving, different groups have different facilities and some only accept kids but riding is great for core strength.
Flyability offer scholarships to DLA/PIP/Disabled working recipients to do tandem paragliding and hang gliding and full courses and they have some adaptive equipment and advice for schools too.
Beach chairs are often avaliable to borrow from sea side resorts although you often need to go in season and call in advance, you need to be pushed which really isnt my style but it was really nice to be on a beach.
Locally there is disabled swimming but no national organisations, I find co ordinating not breathing in the water but a snorkel really helps and I use fins (flippers) which allow me to swim with more forward momentum, because the water helps hold you up walking in water about chest depth is quite good exercise too.
I also am a PADI scuba diver, some of the diver exercises are tricky and there is a swimming requirement though PADI let you double the distances and do it with kit on which makes it so much more managable and if you are clear about your needs most dive schools will go out of their way to help where they can.
Ok that wasn't as short as I thought but I hope I have inspired you to try something new, no one will make you do it again if you don't like it!
Feel free to sponsor Dan and I doing the Spring Classic (in the rain) this weekend on a tandem recumbent.
justgiving.com/tandemspring...
Anna
I'm now understanding your username
Thanks for the list. I used to swim but now it sort of scares me - too open I suppose. I'd like to try hand gliding and I'd really like to try horse riding (I think there's quite a strong possibility that I'd fall off but I've always wanted to try).
So thanks again. And I hope the Spring Classic went well!
depressed?
Dealing with Episodic Ataxia.
When is the right time to give up work?
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