More Than Comfort Food for ALS Patients

This blog is written by Kelly Lawman, Media Relations Specialist, Communications

Whatever medical mountain you’re climbing, finding that person, or sometimes even better yet, a roomful of people who speak your language, who truly understand what you’re going through can feel as valuable as the best medicine. And if you have good meal to go along with it, it’s even better.

“We have a group of patients and their caregivers who established an informal support group many years ago,” said Cynthia Wagner, MS, CCC-SLP, Clinical Service Manager for Voice, Speech and Swallowing at Beth Israel Deaconess Medical Center.  What initially bonded the patients was their amyotrophic lateral sclerosis (ALS) or other degenerative neurological disease diagnosis and their shared group of medical experts at BIDMC, but over time they’ve become a close-knit group of friends. 

“The patients started the group as a way to meet for a healthy lunch on what can be a difficult and emotional day of medical appointments they come in for every six months or so,” said Wagner. Now the group gets together monthly, even between medical appointments. “They really look forward to it. There’s a real camaraderie there. They sometimes learn more tips from each other than from their doctors.”

Degenerative neurological diseases, like ALS, affect nerves in the brain and spinal cord. They progress over time, making walking, balancing and even swallowing more challenging.

“Swallowing difficulties can make it hard for people to get enough calories or sometimes to stay hydrated, or even to find food interesting,” said Wagner.

“After a while, mashed potatoes and pureed squash can get pretty boring,” said Richard Hackel, a patient in BIDMC’s ALS program and a member of the monthly support group.

BIDMC Executive Chef, Akeisha Hayde has taken up the challenge of reinventing the dishes served at the group meetings. She also made a special appearance at one of the lunches to teach caregivers different ways of cooking for their loved ones at home.

“You don’t have to sacrifice flavor in order to make food the right texture so that it’s easy to swallow,” Hayde said. She worked with Hackel and another patient, Walter Benson, to redesign the menus and come up with easy to prepare, easy to duplicate recipes.

“I work hard for this group because my small contribution can make them smile,” said Hayde. “I realize they may be losing choice in other areas, but we can bring some of that back with food.”

Hayde recommends using fresh herbs and seasonings to amp up flavor. “Cook as though, you’re cooking for a person, not a patient,” she said. “A pinch of love goes a long way.” She says that not all foods need to be pureed or ground up. Sometimes just switching an ingredient can make a big difference. “I love spaghetti, but a pasta like orzo can be an equal exchange in flavor and nutrients and it’s much easier to swallow. She also recommends using sauces. “Sauces are a great way to help with swallowing and they add flavor and calories.”

“The lobster bisque was amazing,” said patient Peter Kerner. “It’s all amazing. Akeisha should have her own cooking show!”

“What Akeisha has done for this group is remarkable,” said Wagner. “There is something about sharing a meal that is just so wonderful and it’s clear that Akeisha really cares about making the experience both healthy and satisfying.”

Try the recipes from the cooking demo so you can cook these delicious meals at home.