-
Do you orient your diet around SMA?
According to a recent study, SMA patients process nutrition differently from non-SMA bodies. We require more carbs to generate energy. This explains my love for pasta, bread, and potatoes.
My question is, how will this knowledge affect us in our daily lives? Are we just going to keep consuming the way we’ve been consuming? Find new recipes or supplemental products? And if anyone has started a heavier carb diet since the study’s publication, do you feel any different?
-
6 Replies
-
I don’t have any advice, but I would like to add one more thing to this. For people like me who are 100% tube-fed, is the formula that we get enough to sustain us? Sometimes I question whether or not I’m getting the proper nutrients if I cannot eat food naturally.
-
I wonder this too! Even for those of us who aren’t tube-fed but are on a formula-only diet for whatever reason (it was all I could consume on certain days last year), are we actually getting the claims on the tins? I can’t seem to find enough clinical evidence.
-
-
About 25 years ago, I had a severe health crisis. Weirdly enough it had nothing to do with SMA, it was systemic Candida.
That was the worst pain I’ve ever felt in my life. It’s when I discovered acupuncture. When I asked if there was anything else I could do for my well-being, he suggested cutting refined sugars. Honestly, I thought it was a weird hippie thing so I tried it believing it had no effect.
Joke was on me.
By the middle of the first week, I was acting like a junkie. The sugar addiction was that bad. So I stuck with it and at the end of the month I decided to give myself a treat with a small dessert. Proof was in the pudding.
It was cloyingly sweet, hit back with a migraine and body wide joint pain.
I still crave sweets and complex carbs, but try to be more mindful about those choices. Sweet potato instead of white rice, berries instead of bananas, natural honey instead of sugar. Each of us have a very complex combination of baseline facts like gender, genetics, age, culture, psychological relationship with food that have determined how and why we eat. This isn’t as much about SMA as it is about being a human. This new information offers a little grace and peace when I want that carb but we’ll see how I actually fold it in to the whole.
-
I didn’t have systemic candida, but I had lots of issues with it and was allergic to all oral antifungals. My doctor explained that because I was on such a high dose of PPIs, there wasn’t enough stomach acid in my body to kill the fungus. So I can sympathize with you about the sugars and complex carbs. It was almost instant that my mouth/esophagus would fill with Candida after eating. I’d lose my voice, and it was so uncomfortable.
Long story short, I was hospitalized for a month a few years ago for unrelated issues, and they put me on an IV anti-fungal for three weeks. That was also the time I became tube-fed in my intestines. The medication and the fact that I no longer ate by mouth (or put food in my stomach) killed the Candida once and for all. Of course, I miss being able to eat by mouth, but not having the fungus drama definitely has its perks.
-
-
I find that my body likes complex carbs like potatoes, lentils, whole wheat, and etc. I’m from the midwest, so potatoes are a staple. On the other hand if I have too much simple carbs like sugar or pasta, then it flares my arthritis and makes me retain fluid especially in my legs and joints making it harder to move and really drains my energy. Not all carbs are the same. When I don’t get enough complex carbs, then I feel like I am weaker and get tired really fast those days.
Up until I read that article it was just intuition of what my body likes and does not like. I try my best to listen to my body rather than what works for other people especially non-disabled people. Even with modern tests and medicine, I feel like scientist and doctors are just scratching at the surface at what SMA does to a person especially adults. It seems they are finding out that it is not as simple as replacing the defective gene or producing more SMN protein. It changes how a body funtions in more ways than just our muscles and our bodies finds ways to compensate as best they can, but once our bodies find ways to compensate or do things differently it is hard to impossible to go back. That is why modern treatments are more effective in babies and children because it is easier to treat before those changes happen or as soon as possible. It seems studies into what SMA does to adults are still lacking and not quite fully understood in my opinion.
-
Cait,
I discovered my body really likes root vegetables and I don’t get a bad reaction to any of them. My family’s Hispanic so things like yucca and malanga were already a part of our food traditions.
Potatoes, beets, malangas, yucca (cassava), sweet potatoes, radishes, turnips, onions
As they’re high in fiber, they process slowly and don’t cause the joint pain or fluid retention.
Also, while it seems crazy, women were only recently included in health and dietary studies due to our shifting hormonal levels. The fact that the study is asking nutritional questions is a huge step forward. We don’t know what we don’t know. It does seem like we’re asking better questions.
-
Log in to reply.