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 article in ALS News Today reported 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 always caution against overloading our diets with carbohydrate-rich foods, as this can lead to 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.

Stepping on the scale 

I discovered the roller coaster of dietary advice surrounding my disease during my first ALS clinic visit about 15 years ago. The first thing was the weigh-in and while stepping off the scale, I learned that ALS patients are encouraged to gain weight. “Eat whatever you want,” was the advice, explaining that being a few pounds overweight was associated with slower symptom progression and longer life compared to being underweight.

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

 

However, another recent article in ALS New Today, reviewing clinical trials, reported no evidence that a high-calorie diet affects symptom progression. 

Oh, well, eating a lot was good while it lasted.

 

Then, (do I hear a drum roll?) it was announced that a high-glycemic diet combined with taking the medication Riluzole did indeed slow symptom progression!

 

In addition, a 2018 study found evidence that ALS is linked to hypermetabolism, meaning my muscles burn energy at a faster rate and need high-carbohydrate calories. 

All right! Now I’m back to having extra helpings! And hand me a cookie, please.

Questionable dietary advice 

Various cure-all “experts” who make the rounds on social media add to the ALS dietary confusion. 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 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 sure 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 importantly, we should discuss all of these issues with our medical team.

 

That’s the thing about ALS: We still don’t know much about it. We just have to keep our minds open and keep up with the current news and research. 

All in all, the news about eating high-glycemic foods sure makes desserts and holiday treats taste even better. Me? I still consume a variety of foods, but I'll admit since reading the latest news, I'm grateful I've been taking Riluzole and have upped my pastas, potatoes, and bananas. Hey, hey, hey. I’m doing it to live well while living with ALS.

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FOR MORE ON THIS TOPIC, I SUGGEST THESE POSTS

Auntie A. Ellis (ALS) Gets Cured!  (my comments on unproven treatments)

How my breakfast routine helps smooth out my mornings (my high-glycemic breakfast)

ALS diet: Foods to eat and avoid (a great resource article from ALS News Today)

Explore more posts HERE

Dagmar Munn 
ALS and Wellness Blog

 

“To eat is a necessity, but to eat intelligently is an art.”

Francois De La Rochefoucauld

 

A version of this post first appeared as my column on the ALS News Today website.