More Than Just Food: The Dietitian's Critical Role in ALS Care

Family living with ALS eating dinner together

We recently explored the value of multidisciplinary care for people living with ALS and the many members of the team that deliver that care. Each member has a specific role to play, and by working together they do everything they can to make ALS livable for everyone, everywhere.

March is National Nutrition Month, and since maintaining proper nutrition is so important for people living with ALS, we wanted to highlight the critical role of one member of the ALS care team: the registered dietitian (RD).

It makes sense that people are drawn to careers that include their interests or passions. As such, it isn’t really surprising that a dietitian might have a passion for food. But for Christine Berg, the RD at the Saint Louis University ALS Multidisciplinary Clinic Certified Treatment Center of Excellence, her career path wasn’t exactly a straight line. “It's actually a second career. I went back to school when I was in my early 50s to become a dietitian,” she says.

After raising two daughters and pursuing a career in business, Christine was looking for something new. She had always had a love of food and wanted to find a way to use that love to help people. With the encouragement of her husband and daughters, she went back to school, and after completing her studies and internship requirements, found herself providing services for people looking to find and maintain a healthy diet, including people living with ALS at the Saint Louis University ALS Clinic.

Image
Clinic team collaborating

The value of the multidisciplinary care model is that the team members work closely together to craft the care plan for a person with ALS. In particular, the dietitian works closely with the speech language pathologist (SLP) as they share a focus on swallowing issues as ALS progresses. They both work with people on any challenges they are having with choking or otherwise not being able to eat by mouth. Often, strategies and therapies from the SLP can help with these challenges at some stages of the disease. When these strategies are no longer effective and weight loss begins to occur, the dietitian’s role comes to the forefront.

Image
Person living with ALS eating

For a dietitian working with any patient, helping them find a healthy diet and maintain the proper body weight is paramount, particularly for people living with ALS. "Often they'll say, 'oh my gosh, I've never been told that, not to lose weight.' So I stress to them how important it is they don't lose their muscle and that's what we're really concentrating on,” Christine says. “If I do see that they are losing weight, but it's not a lot of weight, I have a couple different handouts I like to give on how to beef up their food, priority eating, and simple ways to get more calories in the food that they are eating to keep that weight on."

Christine also works with family members and caregivers to ensure they understand not only the physical, but also emotional needs, and how food can and does play an important role in both. "When a loved one is diagnosed with something like (ALS), we all will do everything we possibly can to help them. And I think for a lot of people it is with food," Christine says. "Many people show their love and affection to people by cooking them things and bringing them things."

Image
Feeding tube

When getting enough nutrition by mouth becomes a challenge, the dietitian will consult with the rest of the care team, caregivers, and family members to determine when and if a feeding tube should be inserted. Christine stresses however, that even with a feeding tube, food and all that goes with it can and should still be enjoyed.

“I'll say, ’if you're just getting too tired to where you can't get enough nutrition in your body, do you want to save that strength for pleasure, especially if you have family members coming over, like on Sundays to get together with their extended family, save it for that?’ Save that strength for those pleasure feeds or save them for foods that you just really enjoy,” she says. “I definitely stress that because I personally feel like food offers us so many different things besides nutrition.”

An ALS journey is challenging for everyone, but with the help of ALS multidisciplinary care team members like Christine, people living with ALS have problem solvers who can help support them in not only getting the nutrition they need, but to live their lives how they choose.

You can learn more about ALS Multidisciplinary Centers and Clinics and find one near you HERE. You can find more local support resources HERE.

To continue to follow stories about people living with ALS in the community and learn more about the disease, subscribe to receive our weekly blogs in your inbox HERE or follow us at als.org/blog. If you or someone you know would like to share a story with the ALS community, share with us HERE.

Subscribe

We Want to Hear from You!
Your feedback is important to us. Please let us know what you think about our blog – take this short survey and provide your input and feedback.

Join the conversation. Please comment below.

CAPTCHA
This question is for testing whether or not you are a human visitor and to prevent automated spam submissions.
1 + 0 =
Solve this simple math problem and enter the result. E.g. for 1+3, enter 4.