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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 10 replies, 4 voices, and was last updated 2 years ago by Kevin Schaefer.

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    • #13230
      Kevin Schaefer
      Keymaster

      My next column will be about this, but I wanted to share a little bit about how my diet has evolved over the years. When I was a kid, I was the pickiest eater imaginable. I had way too much sugar and snack foods, and not nearly enough nutrients.

      Today I’m able to eat a lot more because my JACO robotic arm makes it easier for me to eat. I consume a lot of sandwiches, salads, lean meats, burgers and some fruit. This has certainly helped me improve my diet, despite the fact that I eat out way too much.

      The only time I ever did a liquid or IV diet was when I was hospitalized, but I know many people with SMA who do those regularly.

      What about you all? Have your dietary habits changed over the years? In what ways? Has anything helped you get your proper nutrients?

    • #13257
      Michael Morale
      Keymaster

      I’ve been fortunate that I can eat pretty much anything that I want to. Growing up, my mother always made sure that we ate a well-balanced diet. I was never really too picky about what I ate. The only thing that I would not eat were brussels sprouts. My mother was a fantastic cook, but she couldn’t cook a brussels sprout to save her life.

      I had my gallbladder removed many years ago, and the doctor that was originally scheduled to perform my surgery, gave me a list of foods that I would probably never eat again. Talk about getting depressed, most of the foods that I loved were on this list. Two days before my surgery, another doctor came into my room and told me that he would be performing my surgery. I gave him the list of foods that I was not going to be able to eat anymore that the original doctor gave me. My new doctor looked at the list, tore it up and threw it in the trash. He told me that I could eat anything that I wanted to as long as I retrained my body to accept these foods. He told me to start out slow, and after about six months, I was able to eat anything that I wanted without it affecting the one bit.

      • #13276
        DeAnn R
        Keymaster

        Just curious, do you remember what types of foods were on the list?  I too had  my  gallbladder removed.  Sometimes I wish I had it back.  Even though I have a feeding tube I do “cheat” with food.  It would be nice to have a better idea of what would agree with me.

    • #13279
      Michael Morale
      Keymaster

      Most of the foods that were on that list were foods that would easily calls gas, like beans, broccoli, cauliflower and other types of foods similar to vegetables. Anything with cream, like Alfredo sauce were also on the list. Anything with dairy would be a problem along with other foods that were high in fat because the gallbladder is the organ that helps to process these types of foods.

      The doctor that ended up doing my surgery told me that I could retrain my body to accept these foods again. He told me to eat very small portions of these foods so that I could see how my body was going to react to them. As time went on, I continued to eat these foods and slowly my body started to accept them without causing diarrhea.

      Basically, over time, as I slowly reintroduced these foods to my body, they really became a non-issue.

    • #13297
      Adnan Hafizovic
      Participant

      Interesting to me is that you Michael and DeAnn removed gallbladder,I also had stones in gallbladder but I melted them with pills.I know few people with SMA that also had problems with gallbladder.And Kevin be carefull with diet,I hope you read article here about one man with SMA who use some diet and had some health problems.

      • #13317
        DeAnn R
        Keymaster

        Glad you were able to avoid surgery Adnan.  My surgery had complications.  One of those regrettable decisions, but at the time I was in pain and trusted the doctors.

    • #13298
      Michael Morale
      Keymaster

      I eat more protein now that I’m working out with my physical therapist, and I don’t necessarily worry about sticking to a particular diet, I just eat a well balanced meal. Diets, especially “No Carb, No Fat” diets, I tend to avoid these. You body’s designed for all these foods, I think it comes down to portion size and eating plenty of vegetables for me. Everybody is different, this just works for me.

    • #13318
      DeAnn R
      Keymaster

      Kevin, I hear many parents of SMA kids concerned about their picky eaters.  Was nutrition a concern for your parents?  I myself was a picky eater.  To this day I  wouldn’t eat a mushroom or cooked carrot even if I could eat what I want.  I ‘d like to say it’s a kid thing rather than SMA thing but many adults struggle with nutrition as well SMA or not.  It is more critical for those of us with SMA to have a healthy diet.  You’d think having a feeding tube would make that easier, but not so much for me.

      • #13336
        Kevin Schaefer
        Keymaster

        It was definitely more of a kid thing for me. I eat a lot more today, and I especially consume more protein. Fortunately I never had to go to a feeding tube, but I know many people with SMA who get all their nutrients that way. For those of us who can chew and swallow fine, I just recommend a normal diet.

    • #13323
      Michael Morale
      Keymaster

      My parents had a unique way to battle the “picky eater” problem. They told me and my brother that we eat what my mother worked so hard to prepare for us or don’t eat. The combination of guilt and sheer hunger, made us eat anything she cooked. I mean this somewhat flippantly, but back in the 60’s & 70’s, it worked.

    • #13384
      Kevin Schaefer
      Keymaster

      Hey everyone, here’s my column on this subject: https://smanewstoday.com/2018/07/31/evolution-sma-diet-sugars-fat-protein/. Let me know your thoughts!

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