Hi. I am 32. I was diagnosed with Ataxia (severe) at 27. I currently live with my parents. I cannot live on my own. Does anyone have any ideas that could help?
Hi, I am 28 and I have been living by myself for 2 years now. I am not sure why you can’t live alone. If you can be more specific can try to help.
Hi Eric - Is there a reason - physically or whatever- which doesn’t allow you to be on your own?
I’m in a similar position; it does take a “bit” longer to find all that I need…a pain, but worth it.
My ataxia is severe. I don't have much muscle strength in my arms. My neurologist says I can't live independently. I am affected by intense temperature changes.
Hi Eric, I have Ataxia all so. I have adult children and an 13 YEAR old I still take care of. I live on my own. I need help doing a lot things but my child is first priority. I keep my self going because I dont want any one to tell me I cant drive anymore or Im unable to take care of my child. I cant walk hardly but I can wash cloths and put food on the table. (well someone else has to carry it) lol I dont know your money situation or what you can and can not do. Good Luck.
Have you applied for social securitY? You should be able to receive this and Medicare. It would help provide funds to support yourself. Without good use of your arms you will need help. There also might be resources in your state for you. Have you parents work out a realistic plan with you.
how do your parents think about you moving out? Would they help you to become independent?
I started exercising this week. Because my muscle shank to nothing. I could hardly move. All ready I see and feel a difference. My muscles are stretched. But I find it is very hard to do. But the pay off is worth it!
i also should start with exercising. i have got a recipe for the physiotherapy institute from my general practicioner. In 2009 i was so weak that i was not able to step up the staircase. i got an electric device which stimultated my muscles, muscles i the legs. After three months of daily training i could go up the staircase /a few steps. I had been in a hospital before, for many months, almost always lying in the bed, and got weaker and weaker;lost weight called "wasting syndrome".
Hi Akita, Now that I have been exercising a week. I can swear by it. I only do it in baby steps. I am on the floor doing them.I only needed 2 days to stretch my muscles back. I found some core building on you tube. Believe it when I say. It dose help!
What most people think is not exercising its a lot for us.
You are so right.Thanks for your words,Lori. i will try to start the exercises with new motivation. I got my past training for polyneuropathy and weakness of the muscles and hopefully this training will be adapted for ataxia soon. My big problem is that i am so slow in all. It takes so long time till i am ready to leave my home. Then, in the institute, i have to change my clothes. Again such a long time. I would prefer to do the exercises in my home. (But i fear it lacks the self-discipline to do this.) Actually i am inventing sitting and walking meditation, which also helps me.
Akita I just got done doing some exercises. Sitting in a chair raising my arms up and down. Squeezing a book between my legs. Laying on the floor lifting my legs up and down. What is your situation at this point?
i am sitting in front of my laptop, with a bowed neck and crossed leg. My right upper arm is itching. i really admire you that you can lie down and stand up so fast. i would not be able to do that. in addition i have a lot of medical records spread out over the floor, - should go to the other part of the room to do your exercise..i confess to be too lazy.
So, i do now your exercise with the arms. "Sitting in a chair raising my arms up and down."
No one is more lazy then me. I should of been doing this A LONG TIME AGO! But now that I just started with baby steps. WOW!I I have the same Ataxia as you. And it does suck! But I am still walking somewhat and I want to keep it that way. Thats why I make myself do the exercises. Everyone says I will get in a routine. Im still waiting for that to happen. lol
Since you do have a lap top. Go on you tube. And find yoga that you can do. I dont know how to send web sights.
Seemingly sending the links does not function in the general forum, but only in the blogs.
My body is not in ordner today, suffering from the rests of a cold. I tried your exercise, and this was not easy, because i was freezing soon and needed an extra plaid. But then i was more successful. A strange feeling in the palms. Maybe you should found a gymnastics/exercise group here on ataxia. I like yoga. It helped me when i was a teenager. It s a bit difficult for me actually to organize my time, because i have become slow and everything takes a long time, days become short.
Have a good night!
for organising your own living, perhaps a support circle could help you? Try to find people and organisations who would support you in this. Do you know independent living? I think it is also in your country. They could give you some more practical advices.
In my case i had a problem with independent living, when i left hospital in early 2009 after an approx. stay of 15 months. The doctors offered to me the possibility to go in another hospital or in a caring home - or in my appartment. I chose the latter solution (But i was not in the wheelchair, - "only" weak.) I needed somebody who went shopping for food and other products. Furthermore i needed help for taking a shower or a bath, not able to leave the shower-cabin by my own and to put on my socks etc. For 4 hours per week women from a local public service came to my home and helped me. In the beginning i went to the ambulance twice a week or more often. An ambulance drove me to the hospital. They had a chair by which they carried me up and down the stairs of my house /no elevator..
Could you also get such helps? This would make it easier for you to live by your own.
Good Night! Margarete
Please give more information on your ataxia, and why you don't think you can live alone. Is that (living on your own) even what you'd like to be able to do? I was diagnosed with sporadic cerebellar ataxia (non-hereditary/unknown cause) about 8 years ago. I read your profile and you say you use a cane. I use a cane also, to prevent falls. Have you had physical therapy? If not, you may want to look into it. I find exercise for strength and balance help my ataxia the most. I did pt for over a year and my pt gave me exercises w/pictures to do at home, when I was done (some of the exercises were the same ones I did at pt). Maybe if you felt "stronger" you have more confidence to live on your own (if that's what you want to do). Would your parents be an emotional support to you? Do you have any past work history? Financially, you may be entitled to Social Security Disability, and if you receive it, eventually you'd get Medicare. You could also contact Social Services (state agency-not sure of the name) in you state and ask about "home help services". These are some suggestions, if your even thinking about living on your own, as I'm not sure from your question.
I am on SSI. Too young for medicare. Physical Therapy did not help. I want one of those Kettle Balls. They look awesome. Most likely they will work. I also have a peddler for my legs. Since my Ataxia is severe, "Balance is an issue." There has been progression. My ataxia gave small itty bitty signs during childhood (speech/walk.) Undiagnosed due to technical difficulties with MRI machine. Sometimes I can't stand unsupported. The older one gets, the less willing people are to help you.