I just did the Ataxia survey and it seems that is where I am at, 78% of us in the same boat it seems. I have finally given up on the idea that I am going back to work, not because I feel I can't do a job it is just actually getting there. I explored every avenue only to hit a brick wall every time. There is a gov scheme in place that is meant to pay for travel expenses for a whole year, but the catch is you actually have to be working to get on the scheme, sadly I was on a break when everything hit me. There is also job centre plus that is meant to help, in my case It was totally useless, I didn't have to attend they told me and wished I hadn't as I only lost the money that I had to pay out in cab fares to get there and back. I think the gov are putting money into these schemes, I just don't think they realise that the people that it is meant for never see it! Not sure if anyone has been in this boat! I have now lived on benefit for a full three years and it has been very hard, no treats and all these cab fares to hospital have all come out of my own pocket. So as I reach my 55th Birthday this year I am going to retire, so no more having to feel like have to bow down before government anymore, but this is a question that I would ask anyone in my situation, when I drop my ESA claim am I still classified as disabled? I was told that you are disabled if the DWP recognise that you receive more than one benefit, I currently get ESA enhanced and PIP. I must admit whatever the answer I will still take my pension, but it would be good to know. Not to leave this on a total downer, it will enable me to try and get a life back and I really do have some plans for next year.
I am going to find out if I drown in a swimming pool, I don't think I will, I want to have a go a quad biking as I can no longer drive a car and I have never been on a horse before!
Anyway thank you if you read this.
Denise xx
I can swim for short distances with assistance such as inflatable armbands or a rope to hold on too and I used to be a strong swimmer. It was like that from the beginning.
A quad bike is good if you have enough strength in your arms to propel yourself forward for some time
Getting on a horse might be difficult. I used to be a good and very experienced rider but even thought I can sit without falling sideways, I cannot get onto a horse anymore. And it seems that in South Wales there is only ‘riding for the disabled’ for children.
I have no doubt that I would not be able to get on a horse on my own, but I would still like to give it a try and I am pretty strong as my legs have a mind of their own I make sure my arms are strong. I think its a bit crap that there is only riding available for children, it might be the same here, but I have found that you can chat people up and maybe you could get some help. I am a bit scared about swimming, but as Ataxia tends to change our lives my original bucket list had to go out of the window, so I am trying to create a new one that at least I can try, it is all hard as the mind stays the same and I don't know about you, but when I am sitting down sometimes talking to friends for a second I feel almost normal, but then I have to try and get up!
I would have another go at the horse riding.
Denise xx
I have managed to mount a horse thrice with the kind help of the horse farm owner and a wooden saddle high platform which had stairs. Pools terrify me. I am afraid to drown, BTW,how is your eyesight??? Mine is bad.. xx N
Dear Neta,
My eyesight is ok, feel like it is the least of my worries, but good to know that I am not mad for wanting to try horse riding, I am a bit scared of getting in a pool again, but I think I will be ok. I am actually one of the few that is scared of horses so it will be a tough one, I had a friend that owned two and once many years ago I just happened to be in the stable when one of them got spooked and I was stuck at the back. But we have to keep trying so I am just looking for anything that is still possible. Sorry your eyesight is bad, can anything be done to help? What about this fantastic laser stuff they can do now, would that help? I understand with this condition that being able to see is very important as it seems that if I can't see my feet they tend not to want to walk!
Denise xx