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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 3 replies, 3 voices, and was last updated 10 months ago by Ryan Berhar.

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    • #20862
      Kevin Schaefer
      Keymaster

      Hey everyone! Hope you all had a great weekend.

      For today’s Motivation Monday post, I want to talk about eating healthier. In all honesty, this is something I struggle with. I’m a hard worker, I love to read, and I have a good social life. Yet, the aspect of my health that I struggle with the most is eating well. I eat out too much, and I consume a lot of junk food.

      Right now, I’m trying to take small steps in this area. Instead of chips and cookies, I’m making celery sticks with peanut butter one of my primary snacks. Then when I’m out, I’m ordering more grilled foods instead of fried.

      Do you have any tips or strategies for eating healthy?

    • #20882
      DeAnn R
      Keymaster

      Eating healthy is tough. I’m certainly on the “chunky monkey” side of SMA. Spinraza has seemingly increased my appetite (in my opinion.) Working on portion control could help. Not easy, but at least then you can still enjoy the foods you like, just not as much of it. The mentality that you have to clean your plate isn’t necessarily true. I always felt wasteful not eating everything, but I’m learning it’s not a crime. I’m also trying not to do impulse purchases of food that just looks good.

      • This reply was modified 10 months ago by DeAnn R.
      • #20888
        Kevin Schaefer
        Keymaster

        I know what you mean. Aside from when I was younger and when I got sick a lot in elementary school, I’ve also been on the “chunky-monkey” side for most of my teenage and young adult years. It’s tough, but you have some good tips here. I’m also a notorious stress eater, so it helps when I’m not stressed haha. My weekly water therapy sessions help a lot in this area.

    • #20901
      Ryan Berhar
      Member

      I struggle to eat physically, and I also have a small appetite, so it’s not really an issue for me. I don’t eat much by mouth. Most of my nutrition is from a feeding tube. I guess I don’t eat the healthiest food in the world, but I don’t eat enough for it to make much difference. I don’t like that eating is a struggle, but I guess in a way it’s a good thing, as I don’t have to worry about diet

      • This reply was modified 10 months ago by Ryan Berhar.
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