Your independence is up to YOU! I'm 65 and I'm always going out. Such as concerts, sporting events, and dinners with family and friends. We all have choices. You're letting SMA define you. People with a disability should NEVER let their disability define them. I've been in a wheelchair for over 14 years. And I'm living life to the fullest!! YOU can be doing the same thing. You need to get out and live life! Life is too short!!

I wish I knew the answer. I am 73. My husband will take me anywhere I want or need to go and I have a support worker take me out for 5 hours once a week and I choose whatever I want to do. I need help getting off most disabled toilets so I have no independence even to go to the toilet when I am away from my home. So, Rhoda, we are feeling the same and finding it hard to be cheerful about our situation. Perhaps we can chat some more, Sue.

My day is spent mostly sitting in my recliner chair reading. Each day I promise myself to get up and do some exercise. I plan what is for dinner and start preparing. When I have to sit down I instruct my husband what needs to be done to finish dinner. I enjoy reading. Most days are very long. On Tuesdays I go to a group for writing. We are friends and have a laugh and word games. We each write a story and read it out before going home two hours later. On Thursdays a carer picks me up and we have an outing for 5 hours. She pushed me in a wheelchair and I have no stress. Very nice.
My day would be titled long and frustrating. Sue

Good morning, I hope you have a safe Labor Day. It’s hard to believe it’s September already. Our days are very similar. I wake early, but I’m really not functioning until 10ish. I pick out one thing I really want to do that day and use the energy I have for the day doing it. My shower is on the second floor. So I use a lot of energy climbing the stairs. After I shower I’m done for the day. Doesn’t matter what time it is. Usually the remainder of my day I’m either laying down or sitting in the living room watching TV. My husband does the cooking. I can’t stand long enough to cook and i feel like I’m in his way, so I might as well just let him do it. That’s my day. If I wrote a box about my life I would title it “”One Long Saturday” or “Ground Hog Day Everyday “. How about you? What would you title your book that explains your day?

Good morning Rhoda. It is morning here at 10.15 am. My day is the same most days. I do the dishes and not much else as I am tired then after showering and dressing. I sit in my recliner and read. I try to exercise each day but am lacking motivation and energy. Today I will try again. A physiotherapist who understands SMA comes to the house but I will cancel that monthly visit. I can’t exercise for an hour. If I am too busy i get overtired and then can’t function for the rest of the day and can be even the next day is affected. How does that description compare with your day, Rhoda?
Cheers, Sue