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    • #28442
      Alyssa Silva

      There are so many things we have to manage as people living with SMA, and while I have a pretty good handle (on most days lol) of my daily living activities, I am not the best at keeping up with proper nutrition. I have an appointment with a nutritionist coming up and I was wondering if anyone had any tips or advice I could bring up to her. I eat by mouth only and could afford to gain a few pounds. Are there any nutritional do’s and don’t’s for people with SMA?

    • #28444
      DeAnn R

      Take what I say with a grain of salt, not literally though because you know sodium isn’t a good thing. Over the years I’ve come to find out with SMA we may have a harder time breaking down complex fats and proteins. Learning that explained a lot of my past issues (including a bad gallbladder.) That’s why I think the AA diet became popular. Even though I don’t follow it, I do like some aspects of it. I think it’s geared more towards tube feeding though. Basically, if I understand it right, most of the nutrients are elemental or already broken down so easier to absorb. Proteins are more plant based. Fats are reduced and there’s a heavy focus on carbs. With treatments though I’m wondering if more protein is beneficial. Maybe as long as it’s plant based? If your wanting to avoid weight gain I’d be careful about the carbs too. Overall I think you just have to find what works for you. See what the nutritionist has to say, mull it over, and do what you feel is best for your circumstances. So far nutritionists haven’t impressed me much.

      • #28477
        Alyssa Silva

        Thanks for your input DeAnn. What you said is basically the same research I’ve collected over the years, so it’s nice to get that reassurance from someone else.

    • #28459
      Kelly Miller

      I’ve also not been impressed with nutritionists. Unless you get one who specializes in SMA diets, it’s been my experience that they are much like every other field from the medical realm, hit or miss. I gave up on the “professionals” after a couple of different ones just looked at me blankly. But that’s not to say you can’t find one that works for you. Give it a go, just do your research.

    • #28478
      Alyssa Silva

      I haven’t been all that impressed by my nutritionist either. That’s interesting that we all feel this way. I wonder if it’s the consensus among the majority of the SMA community. I was hoping to override my nutritionist when I reached out to my critical care team, but they’re the ones that recommended I set this up. The appointment is today, let’s see how it goes.

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