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How different generations living with SMA can teach one another

Meet Regina and Al. Their friendship and respect for one another all started at a fundraiser before a Phillies baseball game in 2019. “I watched Regina give a beautiful speech at the event about her recently diagnosed son, Shane,” recalled Al. “I thought to myself, ‘My friends at Cure SMA need to meet this amazing mom and get her involved.’”


This topic has 0 replies, 1 voice, and was last updated 1 year, 9 months ago by Kevin Schaefer.

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      Kevin Schaefer
      Keymaster

      I knew this month would be busier for me than usual, but in a good way. November is #NaNoWriMo (short for National Novel Writing Month), which thousands of writers participate in every year. It’s also when my local comic book convention takes place, which I’m stoked for. That’s happening this upcoming weekend, and my caregiver will stay with me while my parents go out of town. I’ll be moderating panels there, hanging out with friends and meeting creators. Cons can be tiring, but they’re always tons of fun.

      I’m finding that little things help me pace myself when I’m extremely busy. All weekend I was either writing, podcasting or hanging out with friends, but I still did things to rest and have down time. Yesterday morning I spent about 45 minutes reading a book before church, and it was incredibly refreshing to do that early in the morning instead of going straight to checking Facebook or watching some video. I felt better throughout the day as a result. I also went to bed at a decent time the night before, and slept alright on Friday as well.

      I go in for PT this morning after being off last week, and my appointment comes at a perfect time. I’ve been better at doing some exercises at home in my chair, and I’m looking forward to getting back in the pool. I feel more energized throughout the week when I have a Monday morning session.

      All in all, this is going to be a busy month, but so far I’m pacing myself. Taking on a loaded schedule and having SMA isn’t easy, but it is possible. You just have to take care of your physical and mental health.

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