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Diets and SMA
Eating and specialized diets are a common point of discussion at SMA conferences and in online groups. I’m on just a regular diet and I’ve never really had any difficulties with swallowing/chewing. However, I know many SMA folks do have issues in these areas.
What about you all? Do you use the amino acid diet? Do you use something else? What are some of the pros and cons of your diet?
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6 Replies
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Soon after I finished my second loading dose of Spinraza, my doctor gave me permission to start physical therapy. Since this treatment is giving me the protein that my body was lacking, I now have the ability to sustain and build muscle. Once I began my physical therapy, Laura, my physical therapist, put me on a high-protein diet. As counterproductive as it sounds, building muscle begins by tearing down the muscle first, forcing it to grow. Protein is essential for the repair and building of new muscle. One of the things that Laura requested I do is to start drinking a protein shake. While there are many protein shakes on the market, the Pro Series Muscle Milk offers 40 grams of protein and it only has 200 calories with 1 gram of sugar. The name Muscle Milk scares a lot of people away because many of us are lactose intolerant. Muscle Milk contains no lactose products. It does contain milk protein, but anyone that is lactose intolerant like I am, can drink this product and it will not upset their stomach or cause any problems whatsoever.
I immediately noticed a difference in the recovery time of my muscles after drinking this protein shake. I drink one shake her day and I try to eat a high-protein diet. I’ve been working out with Laura since October of last year, and I can tell a huge difference in my muscles strength and my overall condition. I highly recommend using one of these protein shakes, especially The Pro Series Muscle Milk.
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Very cool Michael. Yeah I’m kind of a carnivore, so I get plenty of protein each day. I haven’t done protein shakes before, but I’m glad it works for you.
And Ryan, I definitely agree that it’s best to do what works for you. By the way, are you still trying to acquire a JACO robotic arm? I know you tested one out a while ago and liked it. I was just curious, as the one I use makes eating and drinking so much easier for me. Let me know if you have any questions about it.
DeAnn, yeah it’s interesting hearing everyone’s perspectives on this subject. I don’t think you should feel guilty though for eating regular food with the formula you use. I don’t know much about the amino acid diet, but I know some people that are on it still eat regular food as well. It’s really whatever works best for you.
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I receive a pack of Tolerex through my feeding tube every night. This is extremely important, because if I miss a night, I’m likely to go into metabolic acidosis—a chemical imbalance that has almost killed me a few times. When it comes to actual eating, I’m not on a diet, but I don’t eat much by mouth because chewing and swallowing has become so difficult. My overall opinion on the matter is that each SMA person is different, so each person must identify his or her own dietary guidelines. I’m not a believer in a one size fits all approach.
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I’m more confused about diet than ever! Plus I have a feeding tube, so I never know if I should mess with the formula. Since I do “cheat” with regular food, I try to keep it foods that I enjoy, but I know I should choose healthier options. My difficulty lies in that those healthier options don’t really break down to be easy to swallow. Nuts are out as well as most veggies. I do like the shake idea Michael. Where do you get it?
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Kevin – I never knew anything about the JACO robotic arm until I read your post. I did a YouTube search on this and found it to be very interesting. This is something that I’m going to look into for myself because I think it would add a dimension of freedom that I haven’t had in nearly 30 years. Thanks for bringing this up.
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It really does do wonders. Obviously it’s incredibly expensive ($50,000), but my family and I were able to acquire most of the money through fundraising. We did a GoFundMe and there were a ton of people and businesses in our community that supported us.
It’s by far the most life-changing piece of equipment I’ve had in years. I can not only eat and drink with it, but also pick up objects, move things around on my tray, press buttons and close doors. Let me know if you have any questions about it. I’ll do a separate forum post about it.
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