I am 25 and have possible CA or SCA, maybe hereditery. I can still walk but struggle unaided, I have slight downbeat nystagmus which only effects me on my worse days (I find focussing hard) and I am part deaf. My speech, writting, typing, co-ordination and mental ability is unaffected. I have tried a number of things to try to help from COQ10 to walking poles, none of which help some make it worse. Having tried so many things I am becoming more dis-heartened, then I found support dogs and the sensory belt. If possible could you please try to answer my questions and provide advice?
Has anyone got a sensory belt or a support dog or has used one? If not how and what has helped you?
What breed and size is your dog? What do you get it to help you with?
How did you get your dog?
My OT is telling me a lycra suit may helkp but they seem very unhygenic?
If anyone has nyother infomation please share it?
Thanks
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Hey im 26 and got fa. I have an assistance dog. I don't know if you attended the Stansted conference but I did a talk on them. If you have Facebook and want to talk more add me and I'll help best I can.
Hi, my daughter is 15 and she has tried a lycra suit but as you say they are quite unhygienic to wear so she gave up with it, she was quite a but younger then and it didn't help anyway. I've not investigated a support dog but don't think they are available for thus condition but others might know different. Is you're condition progressive? Sorry I'm not much help but feel free to ask anything else, I might know the answers to other things. Best wishes April
I don't have a support dog but have thought of getting one. Good that you keep of thinking about solutions. I have a friend with "Lou Ghering's" disease and he bought merry puppy.
Can you tell me where to look for sorry dogs please? Also how do you manage to exercise them if you are in a wheelchair or can't walk far etc? Especially as I am also disabled and so couldn't do much walking etc. any advice gratefully received. Thankyou
I am afraid I do not have any personal experience of having an assistance dog. However I did hear Nikki (Stowe) at Stansted give an excellent talk on this subject. Her own support dog, Pippin, was there and, as well as being incredibly cute(!), could perform the most amazing tasks to help Nikki. I would absolutely recommend getting in touch with her. In the meantime however you may find it helpful to have a look at the following websites:-
thankyou harryb glad u enjoyed it, i was slightly limited in the demo pippin can do as he uses household stuff to do tasks like emptying a washing machine and for obv reasons i couldnt bring a washing machine.
my dogs from dogs for the disabled (link below). to exercise pippin when you apply the charity come out to asses your home and garden etc but they also check youve got a local wheelchair friendly place u can get to, to walk them. currently ive damaged my back so i have a dog walker walk pippin and my mums dog but after ive had an op i will be walking him also but he does walk alot when working cos whereever i go he goes. i take him to work and works been great, he has a little bed next to me in the classroom where he just lays there until i need him so i can get on with my own work.my sister has a spaniel so between mum, my sister and carers i walk him with them but im not confident to go alone - i dont think i would even if i was walking. ive got a powerchair and im lucky to have an old small airport runway near me which is fab for walking dogs, they train assistance dogs to stay within sight and to regularly return to you, i also have a whistle to get him to get back cos i cant shout to well
Hi nikkistowe, your dog sounds fabulous! I'm really pleased for you that you have been given the opportunity to work with such a fantastic trained animal. I am unwell with fibromyalgia and lymphoedema and my daughter had SCA so i will investigate the chance of her having an assistance dog which could make such a difference to her life. Thankyou for all the information you have imparted. Best wishes! April
I've been on the living with ataxia site and posted a similar question with some cany good replies but trying to find out more.
Due to dogs for the disabled and dog closing their waiting list, hearing dogs and canine partners having a 2 year waiting list. I've been advised to get a puppy or rehome a dog and get somewhere like support dogs to help train it. One problem being is they have told me some breeds they can't train, can anyone shine a light on this? Also what do you look for in a dog which is going to be a support dog?
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