This topic contains 15 replies, has 8 voices, and was last updated by  Patrick Lenihan 5 days, 12 hours ago.

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  • #19727
     Rachel Markley 
    Participant

    What are everyone’s protein goals and how do you achieve them? I know I need more but how much and how to get without a lot of meat. I am looking for low sugar options that are easy to chew and swallow.

  • #19728
     Kevin Schaefer 
    Keymaster

    I’m a big meat-eater, but I understand that chewing and swallowing is hard for a lot of people with SMA. Have you tried protein shakes? I don’t have any specific recommendations, but I know it’s an option.

  • #19731
     Kelly Miller 
    Participant

    I don’t know if you don’t eat meat bc you can’t chew it or bc you are somewhat of a vegetarian, so my input might not be relevant to you. I do have a feeding tube in which I use Real Food Blends. They have different versions of meals with meat in them, but they also have vegetarian versions. Since it’s puréed to go in the feeding tube, you don’t have to worry about the taste. When I do eat a bit by mouth, I grind my meat up in a miniature food processor (called an Oscar), then I mix a little mayo in with it to bind it so it doesn’t fall off the fork or spoon. That makes it very easy to chew & swallow. I’ve done this with my difficult meats like steak, ham, pork chops, ribs, anything really.

    • #19751
       Krystal 
      Participant

      Thank you for this tip of grinding up your meat and using Mayo as a binding agent! I think that’s a great idea and I will definitely utilize this for my 19-month-old Type 2 daughter. We currently give her baby food meat that’s store-bought and she eats it well, but I wanted to find a way to give her meat that my husband and I make. Your idea sounds perfect for her!!

  • #19734
     Tracy Odell 
    Participant

    I recently have been told to eat more protein. Not sure what is the best amount given SMA and the inability to gain muscle mass. Here are some tried and true suggestions:

    • Hemp hearts are very high in protein, and if you buy them ground up they are easy to chew in small spoonfuls. I usually take a teaspoon once or twice a day between meals. To me, they taste like sunflower seeds.
    • A smoothly might be a good option. It can be made with Greek yogurt and you can add unflavoured protein powder to it. I control how thick it is by adding ice into the mix. Add whatever combination of fruit or vegetables you like.
    • Tofu is high in protein and not fattening. You can experiment with recipes and have it baked or fried or mixed into other food.
    • Fish is high in protein and easy to swallow, especially if whoever does the cooking is very careful about making sure all the bones are removed. It can be baked very simply with a drizzle of oil, herbs and lemon juice, or done very flavorfully in coconut milk and seasonings.

    Hope this helps!

    Tracy

  • #19735
     DeAnn R 
    Keymaster

    If you search protein shakes Michael Morale talks about one he uses.

  • #19740
     Ryan Berhar 
    Keymaster

    First off, I want to be clear that I am by no means a dietitian. That being said, I know that the diet experts say that people with SMA shouldn’t have much protein, (none at all actually) as it’s hard for our bodies to break it down. Many SMAers stick to the AA diet, which is extremely strict and basically only permits grain. I was on it for four months in 2013, and I couldn’t stand it, though I know it’s essential for some. If you want my opinion, I’m a firm believer that each SMA person needs to establish their own nutrition plan. I reject one size fits all diets. I would still caution you about increasing your protein intake, as that’s contrary to what’s recommended. You might be able to get away with it, but it’s probably not something you should do for health reasons. Basically, listen to your body, and you’ll figure out what you need.

    • #19752
       Krystal 
      Participant

      I agree with you. Everyone, SMA or not, is different, and one diet may not work well for you even though it works well for someone else. Since my daughter is still very young, she is not on any special diet, but we are definitely trying to get her to eat high-calorie foods because she’s starting to get so thin!!

      • #19776
         Ryan Berhar 
        Keymaster

        If you haven’t already, look into a feeding tube. There’s absolutely no way I’d still be alive without it. I can’t physically eat or drink enough, so it provides me with the bulk of my nutrition and hydration. Many people seem resistant to get one, but I can assure you they’re not remotely a big deal. It’s a minor procedure, and after a short time you forget it’s even there. If you have any questions about it, I’m happy to answer them.

      • #19778
         DeAnn R 
        Keymaster

        Sorry, have to disagree on the feeding tube Ryan. For me it’s a necessary evil, but my opinion is if you don’t need it, don’t get it. Especially with treatments at such a young age. It might be one of those things that’ll never be necessary for some. But that’s what I love about the forums. Lots of opinions so folks can make up their own minds.

      • #19780
         Ryan Berhar 
        Keymaster

        Well obviously if you don’t need it, don’t get it. But Krystal said her daughter is really thin, so that’s why I suggested it. Being thin isn’t bad for us, but it could also be a sign that she’s not getting enough nutrition, and this will only become more problematic as time goes on. I just can’t stress how important this is, as I almost lost my life on two occasions due to metabolic acidosis. I also want to kill this notion that feeding tubes are this horrible, major thing, as my experience couldn’t be any further from that.

  • #19741
     Ryan Berhar 
    Keymaster

    Also wanted to say that it might be different if you’re on Spinraza. Again, I’m not an expert, just sharing what I’ve learned by living with SMA all my life. Consider consulting a medical professional before doing anything drastic. Even then, listen to your body above all else, as doctors are wrong sometimes too. Diet is not something to take lightly.

    • This reply was modified 6 days, 16 hours ago by  Ryan Berhar.
    • This reply was modified 6 days, 16 hours ago by  Ryan Berhar.
    • #19762
       DeAnn R 
      Keymaster

      Yes Ryan, I’ve heard a lot of folks on Spinraza feel the need to up their protein. Makes sense if you think about it. I myself haven’t intentionally done that, but find myself snacking on cheese a bit more. Assistance with a dietitian could be helpful although the ones around here don’t know squat about SMA. As with anything moderation is key, and like you said listen to your body.

      • #19777
         Ryan Berhar 
        Keymaster

        That’s the thing. Even the experts often don’t know a thing about SMA, so it’s usually best to just figure it out for yourself.

  • #19761
     Rachel Markley 
    Participant

    Thanks all! I’m currently doing a smoothie with both Greek yogurt and hemp powder (can’t stand more than 1 scoop). Meat is hard because of swallowing – even when blended – and I honestly don’t care that much for it. As for shakes/bars, I do have a nutrition degree and know the junk that goes into these will make me feel awful. More protein has been recommended by neuro and PT after Spinraza

  • #19782
     Patrick Lenihan 
    Participant

    Adding bone broth and or collagen to soups will increase the protein. Lentils and chick peas are high in protein and can be blenderized and turned  into dal and hummis respectively to make them easier swallow. Fresh soft cheeses like chevre and burrata and ripe runny cheeses like brie and triple creme cheeses are also easier to swallow sources of protein.

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