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Time Is Motor Neurons

A father’s perspective: Our journey to finding a treatment

When Quinn, our soon-to-be-born daughter, didn’t make as much movement in the womb as our other 3 children, my wife, Annie, and I thought we had the “chillest” baby in the world. We joked that she was saving up all her energy for when she entered this world kicking and screaming. Quinn was born in August 2018, and she was the most beautiful little girl. Over the first few months, nothing seemed out of the ordinary. In fact, she appeared healthy and had strong upper body strength. But by the time Quinn’s 9-month check-up came around in June, her physical condition started to change.


This topic has 3 replies, 3 voices, and was last updated 7 months, 3 weeks 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 7 months, 3 weeks 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
      Participant

      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 7 months, 3 weeks ago by Ryan Berhar.
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