Steve and Kristie Matt met 13 years ago and have been married for 12 of those years. “We immediately knew we were the perfect match from the moment we met,” says Kristie. They also both worked in Philadelphia’s bar/restaurant industry for years—many of them side-by-side—with Steve cooking and Kristie tending bar. A little more than two years ago, Steve noticed hoarseness and low volume in his voice. Shortly thereafter, he began to experience weakness in his legs.
Diagnosed with bulbar-onset amyotrophic lateral sclerosis (ALS) in January 2016, Steve immediately jumped into treatment options for slowing the disease’s progression and maintaining quality of life. He receives treatment from a multidisciplinary team at Penn Medicine’s Comprehensive ALS Center, including sessions with Merisa Palovcak and Leslie Vnenchak, speech-language pathologists at Penn Therapy & Fitness.
Steve’s ALS journey parallels that of many neurodegenerative diseases: A gradual decline in communication and swallowing function that leaves him isolated and loved ones feeling helpless. In an effort to combat this sense of helplessness, Steve and Kristie’s friend Tatum Kendall got together a team—including me—to launch Dinner with PALS (Persons with ALS). Really two dinners—one a fundraiser to sponsor the other—these inaugural events both happen later this month.
On May 31, Chef Chris Kearse—a 2014 James Beard semi-finalist for best chef in the Mid-Atlantic region—will provide an inclusive environment for diners with dysphagia and their families at his modern French-inspired restaurant, Will. He and his team will prepare a four-course meal modified to make food easier to swallow. He will create the menu based on the National Dysphagia Diet and in consultation with SLPs. “As much as chefs are artists, it all starts with hospitality,” Kearse says about creating the modified menu.
Chef Kearse personally connects with the challenges of dysphagia. At age 16, trauma sustained in a car accident left him feeding-tube dependent. He endured 32 surgeries over several years to reconstruct his jaw, mouth and nose. He understands how much not being able to eat familiar and favorite foods in social setting detracts from a person’s quality of life. “For at least a year I couldn’t eat anything solid,” he says.
Chef Kearse continues to experience dysphagia with certain consistencies, as well as residual speech and hearing impairments. He worked extra hard to succeed in the highly competitive restaurant industry with these issues. He likens a customer asking for pureed food to a pregnant woman who avoids rare steak or people with allergies who can’t eat nuts.
“You might have an issue. We all have them. Yours might be swallowing or another thing. You work around it,” Kearse says. “I can’t hear well, I can’t smell, my speech is impaired and I can hardly taste. I have to work with my shortcomings. That’s just how it is.”
Kearse encourages people with dysphagia to call restaurants ahead of time to make special dietary requests. He adds that, when given in advance, dietary restrictions do not cause problems in his kitchen. And he feels the same should be true for other restaurants. “I would not want people to miss out on a social event or an experience with a loved one because they can’t have dinner like most people.”
So that people with dysphagia and their family members can enjoy this special evening free of charge, Kearse will also host a sponsor dinner on May 25. This dinner will raise funds for the special evening for PALS, and any additional donations will go to the Penn Medicine Comprehensive ALS Center.
And that’s good news to Steve and Kristie Matt. “Remaining active and social is important to Steve and me,” Kristie Matt says. “We’ve always been intensely social people and though the disease has slowed us down a bit, we do not want to be victims of isolation. Events such as this not only raise awareness, they also afford families coping with the disease the opportunity to get out and share their experiences with others. Steve and I would like to lead by example. We hope that our efforts demystify ALS for a few people and will lead to further acceptance.”
Meredith Pauly, MA, CCC-SLP, is a clinician with Good Shepherd Penn Partners who sees patients at Penn Therapy & Fitness at Pennsylvania Hospital, Penn Medicine’s Parkinson’s Disease and Movement Disorders Center, and Penn Medicine’s Abramson Cancer Center at Pennsylvania Hospital. She is an affiliate of ASHA Special Interest Groups, 3, Voice and Voice Disorders; and 13, Swallowing and Swallowing Disorders (Dysphagia). Meredith.Pauly@uphs.upenn.edu