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Do you find it hard to gain weight?
One of our columnists biggest struggles as an SMA patient, is to gain weight. In her own words, “for reasons that are my own, I have chosen not to get a G-tube, but in doing so, I have chosen to take on the daily challenge of calorie intake.” Alyssa Silva
Read more about what Alyssa has to say about this here: “The Never-ending Quest to Gain Weight”
Do you need to gain weight? Are you going through the same difficulties as Alyssa is? Share your tips and experience with us.
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6 Replies
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I struggled with this when I was younger. Fortunately, once I got into my teenage years I started eating more and gained more weight. I’m fortunate enough to not have had to deal with any major swallowing/chewing difficulties, but I know many SMA friends who do struggle with this. That definitely plays a huge part.
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I’m more on the “chunky monkey” spectrum of SMA. I’ve heard a lot of SMAers are on the AA diet. Sounds like it may help with absorption issues, but I really don’t know much about it.
Now with Spinraza I’m curious if it will have any effect on these issues. Of course it wouldn’t be a direct effect. I’ve heard some references to increased cravings of protein, others burning more calories because of increased activity. Some have mentioned gaining weight from increased muscle tone. Who knows, but it is interesting.
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Yeah, I think it really varies person-to-person. I also know very little about the AA diet, but there are many SMA individuals who adhere to it. I say do whatever works for you.
And I definitely think Spinraza will have a big effect. Especially for folks who have chewing/swallowing issues, it’ll be interesting if those decrease for them once they start the treatment process.
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<span id=”result_box” class=”” lang=”en”><span class=””>I have weight of 24 kg and I’m 32 years old, I never worried from it because it does not bother me.</span> M<span class=””>y neurologist said that I should not increase my weight, because the fat mass will put pressure on the my bones and scoliosis and it will be badly.</span> <span class=””>And I do not want to change myself.</span></span>
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Thanks for sharing Monika. Yeah, like I said I think it’s important to just do what works best for you.
Are you on Spinraza by the way?
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Monika, I have also heard that carrying extra weight can hinder movement as well. Finding a good balance and making sure you have the nutrients a person needs is probably key. If you’re happy with where you’re at that counts for a lot.
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