Sorting out the sometimes confusing advice on ALS and diet

What if I told you that eating sugar cookies and cherry pie could help slow down the progression of ALS symptoms? You’d probably say, “Hey Dagmar, you’ve gone bananas!” I know, I know. The suggestion sounds contrary to what we’ve always been told about healthy eating, especially for anyone who has ALS.

However, a recent analysis covered this month by ALS News Today reports that eating foods with a higher glycemic index was associated with slower functional declines and prolonged survival among people with ALS.

Whoa there! Deliberately eating foods that cause blood sugar levels to spike does seem backward and upside down. Nutritionists caution us to avoid overloading our diets with carbohydrate-rich foods because doing so carries the risk of diabetes and related complications.

However, the pathology of ALS continues to be a mystery to medical experts, so I’ve learned to keep my mind open to all possibilities.

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Stepping on the scale

I discovered the roller coaster of dietary advice around my disease during my first ALS clinic visit 13 years ago. While stepping off the scale, I learned that ALS patients are encouraged to gain weight. “Eat whatever you want,” was the advice, with the explanation that being a few pounds overweight was associated with slower symptom progression and longer life when compared with being underweight.

Before my ALS, given my early gymnastics, dance activities, and professional career teaching fitness, you could say I spent most of my life in leotards and leggings. The scale was never my friend. So being told I was free to plump up a little was music to my ears!

However, a review of clinical trials this summer reported no evidence of a high-calorie diet affecting symptom progression. Oh, well, eating a lot was good while it lasted.

Yet a 2018 study found evidence that ALS is linked to hypermetabolism, meaning my muscles are burning energy at a faster rate and need high-carbohydrate calories. All right, now I’m back to having extra helpings!

Questionable dietary advice

Adding to the ALS dietary confusion are the various cure-all “experts” who make the rounds on social media. Some recommend consuming boatloads of vitamins and supplements while others highlight a patient who was “cured” and urge everyone to duplicate their diet regime.

When I read these claims, I’m reminded of my mother-in-law, who lived to be 104. Throughout her life, she shunned salads while extolling the benefits of Wiener schnitzel. On her 100th birthday, her nursing home celebrated with cake and invited local TV news reporters. When asked to what she attributed her long life, she looked straight into the camera, winked, and said, “Beer!”

Drinking beer and avoiding lettuce might not be the secret to a long life, but having a good attitude helps.

While we wait for an official “ALS diet,” we need to consider our individual health histories, our medications, and our body’s needs. Most important, we should discuss all of these issues with our medical team.

That’s the thing about ALS: There’s much we still don’t know about it. We just have to keep our minds open and keep up with the current news and research. Considering our diets and supplements is a good way to begin.

All in all, the news about eating high-glycemic foods sure makes holiday treats taste even better. I’m doing it to live well while living with ALS.

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.