Ride For Life

By Mary Beth Faller
The Arizona Republic
Mar. 14, 2006 12:00 AM

When you use the link on this page to purchase this book from Amazon.com, a portion of the price will go to Ride for Life's Shop to Stop ALS program which funds promising research for a cure.

Shortly after Jackie Boswell was diagnosed with amyotrophic lateral sclerosis in 2000, she started having difficulty swallowing food. But she never lost her keen sense of taste.

"Someone said, 'Can't she just eat baby food?' And I thought that was a terrible thing," says Elayne Achilles, who was Boswell's partner, and, during Boswell's illness, her caregiver.

"The senses of taste and smell are very acute. She would see people eating and smell the food. It's enough to drive you crazy," Achilles says. advertisement

Difficulty swallowing food is called dysphagia. Achilles started learning how to modify Boswell's favorite foods so she could eat them, changing from soft foods to ground and then puréed as the disease progressed.

"Jackie and I loved to entertain with food and wine," says Achilles. Both were professors at Arizona State University at the time. "That was one thing we wanted to maintain in our relationship even though her food choices were becoming smaller all the time.

"We started making things that our fellow diners would enjoy."

Boswell was cared for by several medical professionals, including a dietitian, who marveled at Achilles' recipes and told her to start writing them down: "She told me that most recipes for people with dysphagia are made for institutional use. The food tastes institutional and looks institutional."

Besides ALS, also known as Lou Gehrig's disease, other conditions that affect chewing and swallowing either permanently or temporarily include Parkinson's disease, stroke, cerebral palsy, multiple sclerosis and various autoimmune diseases.

So Boswell and Achilles collaborated on creating The Dysphagia Cookbook: Great Tasting and Nutritious Recipes for People with Swallowing Difficulties (Cumberland House, 2004, $14.95, paperback). Friends offered recipe suggestions as well. Boswell had the final decision on taste.

"I made something with graham crackers, and she didn't like the texture. But bourbon sauce was one of her favorites," Achilles says.

Achilles focused on bright, flavorful food. ALS has no nutritional limitations, so the recipes are not necessarily low-fat. There are several recipes for creamy alcoholic drinks.

"There's a recipe for Brie Soup, which we call 'Fat Soup.' It has Brie cheese, leeks, half-and-half and butter. It's totally delicious," says Achilles, who still makes many of the recipes. "People who are having trouble eating need every calorie they can get."

The recipes are divided into categories: soft, ground/ shredded/sliced and puréed. They include vegetables, fish, meat, breakfast dishes, soups, salads, sauces, desserts and drinks.

Eventually, the disease progressed to the point where Boswell was unable to eat by mouth and had to rely on a feeding tube. She died in December 2003.

A few weeks later, the first copy of The Dysphagia Cookbook arrived at Achilles' door. It was Jan. 23, Boswell's birthday.

Achilles is now the executive director of the Arizona chapter of the ALS Foundation. She plans to donate her royalties from the cookbook to the ALS Foundation. She won't start getting royalties until 1,500 books are sold, and the foundation is about 80 books short of that goal.

Achilles has spoken at ALS support group meetings about her book and once cooked a modified turkey dinner for a group.

"We mark the minutes of our day by eating. It's a social ritual. And that's not even mentioning flavor and taste," she says.