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Real members of mySMAteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

What Does A Typical Day Look Like For You Living With SMA?

What Does A Typical Day Look Like For You Living With SMA?

posted October 31
A mySMAteam Member

Typical day for me is waking up around 11am, immediately making my to-do list for the day, check my calendar, get on my computer to do either work or school, running errands after that, talking on the phone a lot, and tackling my to-do list. then I chill until about 4am then go to bed

posted November 5
A mySMAteam Member

Typical day I wake up an hour before time to get up with a dreaded fear that something may happen to my attendant preventing them from coming. I fall back asleep usually to be woken by either my dad or my attendant around 8:30 am. Three days a week, my elderly father who is rather unbalanced on his legs has to get me out of bed as the attendant on those days has to drop off and pickup her kids within two hours...so I have to have coffee before arrives. If calls out after have coffee, am in trouble, so frequently check phone at breakfast. The other days my other attendant gets me up, but he shows up earlier, at 8 am usually. After get washed and dressed, it is already lunch time. Light lunch, then I paint or work on artwork most days or assist with making dinner like tomorrow. Dinner comes fast, then I play on phone a bit and go to bed with attendants help at precisely 8:40 pm so attendant can leave by 9:30 pm. Then do whole routine again. Is like living in ground hogs day except each day seems shorter and shorter.

posted October 31
A mySMAteam Member

A typical day I don’t know if there is a typical day to be honest. Some days are definitely better than others. I try to make sure that I am up in my chair and moving around about every other day. Sometimes I deal with so much pain I just would prefer to stay in my bed with my electric blanket wrapped around my legs. Other days you can’t keep me home for nothing. My son is 26 years old and is starting a family of his own. however you can still find me going up and down the streets in the summer with a whole crowd of kids. We are heading to a park or a pool or some thing fun. The winner keeps me down more than up but I’ve been trying harder to push through it. The older I get the harder it is.

posted October 31

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