As we bring awareness to National Nutrition Month, The ALS Association Florida Chapter asked Jeanne Struve, RD/N, LD, dietician/nutritionist from the Affiliated ALS Clinic at Lee Health, what nutrition advice she'd like to impart on people living with ALS.
Q: What would be your best piece of nutrition advice for someone living with ALS?
A: Weight is honestly the biggest deal. The number one piece of advice I give to people living with ALS is to maintain or even gain weight. ALS is hypermetabolic, meaning that the person will burn more calories now than they did before. Just because someone is not active does not mean they are not using calories. Carrying extra weight is actually beneficial in the long run. Having a BMI in the low 30s is preferred.
Even if the person with ALS has always been thin, now is a good time to put some weight on. On the other side of that, losing weight almost always needs to be avoided. It is just about impossible to lose weight without losing muscle mass.
"ALS will steal enough muscle; you don’t want to voluntarily give any up. Weight loss will increase fatigue and speed up poor outcomes."
Q: What do people with ALS need to do to maintain a healthy body weight?
A: The first time I meet a patient with ALS, I tend to have a conversation about a feeding tube. Many people have negative associations with feeding tubes even if they've never been around someone with one. A feeding tube is just another tool that helps increase quality and quantity of life for someone with ALS. Some people will never need it, but too many patients wait too long before they decide to have it placed, and their quality of life has been compromised more than it needed to be.
When someone is healthy, it is hard to imagine a life that is not centered around eating. However, fatigue, weight loss, and swallowing issues can change your total perception of eating. Doing things, being with friends and family can become much more important than chewing. A feeding tube does not preclude eating by mouth as long as it is safe to do so. Again, getting enough calories and maintaining weight are paramount.