I have spino cerebellar ataxia and live alone.
I have always been a positive person and fill my life with positive friends.
I cannot be around negative people and recently lost my father and left work due to ill health.
I was really sad about both but now am strong and realise with councelling am not useless and need to accept things I cannot change.
I hoover, change the bed, cook and go out in my wheekchair. Dial a Ride is great and hospital transport,
I do not feel sorry for myself - life is for living - a friend said her mother told her 'use it or lose it'.
Thanks for sharing Stoopy. It is not always easy to keep a positive attitude, but that is definitely the way to go. It never cease to amaze me when I experience the kindness of others when I am out & about. When I experience that, I just want to pay it forward. Thanks again.
I agree with both of you and Bob, I am sometimes brought to tears by strangers’ kindness, offers of help, sometimes just a kind smile or word, there are wonderful people out there who have a lot of compassion.
I too have cerebellar ataxia. Just found out recently what was wrong with me. Currently I am affected on my left side. I live with my son who is also ill. It has been a little bit crazy at our house lately. Maybe you can make some friends on here and I am hopes to do that also. I live in US in Texas.
Dear Stoopy, Kudos to you for having a positive attitude and filling your life with positive friends! That's half the battle! As far as use it, or lose it, your mom was right about that! So sorry about the lose of your dad! ;o)
I used to be a big critic of using antidepressants when you're depressed, but I changed my mind this past year after going on them myself. Some things just suck and you can't change them. You can try not to dwell on what sucks, but if that's not helping too much, just go to a doctor.
I've tried counseling and have tried out many different therapists, but having something like SCA is pretty different and no one seems to get it or be able to say anything helpful. Once my aunt from my non-ataxic part of the family told me she was concerned that I wasn't "dealing with" or "accepting" or "adjusting to" my condition. It really stuck in my head that she said that because I don't think you CAN adjust to something like this. How depressing is it to think that you've just accepted that you're losing your functions and will die? I myself managed to improve my function vastly by accepting it as little as possible. I went back to school even though I probably won't be able to work again, I still date even though mostly it's a strike out, I still exercise and do as much as I possibly can on my good days.
Just do what you have to for yourself. Don't make your world too small.
I think you are right Marjorie. What works for one does not necessarily works for another. We are all hard wired differently from birth. Some can accept challenges easily, some cannot. Some can fight, some cannot.
Also, age has a lot to do with it. I think it is easier for older people to resign themselves to their fate than it is for younger…
So, as you said it so well, Marjorie, do whatever works for you. But do it for yourself, not for others.