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NUTRAPHAGIA: Dignity and Joy through Food

[Note from the editor: Nutraphagia is an NFOSD Sponsor of National Dysphagia Awareness Month.  All Corporate Sponsors and Partners are supporters of dysphagia awareness, education, and innovation, and their participation is not an endorsement by the NFOSD or its members.]

Written by Tia Bagan, MS, CCC-SLP

I still remember the purple lilies she brought with her. “Thank you so much for helping me learn to eat again,” the woman said, handing the bouquet to her speech pathologist, Paulette Wood, MS, CCC-SLP. I was 17 and Paulette, a family friend, had invited me to shadow her at the hospital.

Only six months before, the woman suffered a massive stroke and subsequently had been dependent on a feeding tube. Thanks to diet modification, therapy, and insight from Paulette, she was now settling back into a life she thought she’d lost.

In that moment, I knew two things: 1) I wanted to be a speech pathologist and, 2) eating is a powerful thing that goes beyond the physical. At Paulette’s side, I saw the devastation that dysphagia brought for patients and their caregivers—and the joy they experienced when overcoming those obstacles.

Fast-forward several years. After completing my undergraduate training at the University of Iowa, I earned a master’s degree in Communication Disorders and Sciences at Chicago’s Rush University Medical Center and completed my clinical fellowship at John H. Stroger Hospital of Cook County. For the next five years, I served as a clinical supervisor and lecturer at Rush, where working alongside innovative colleagues gave rise to the entrepreneurial vision that would one day fuel Nutraphagia.

Along the way, I’ve been inspired by the stories of so many courageous people.

There’s Annie, a dear friend from high school who is now a wife and a mother to a second grader. A talented dancer in her teens, she always had a quick wit and zest for life. In college, Annie began to have vision changes and would occasionally fall. As her symptoms worsened, she was diagnosed with Multiple Sclerosis, a degenerative disease that eventually led to unexpected seizures, weakness, and an unsteady gait. As a graduate student, I thought of Annie often. Every textbook I read or patient I saw with MS was a reminder of what my brave friend was facing.

Four years ago, Annie found herself in the hospital after some setbacks. Medications were causing tremors in her hand, affecting her ability to swallow and feed herself. It was a vicious cycle. At one point, she was on a restricted diet in the rehabilitation unit and understandably became discouraged. As a friend and speech pathologist, I wanted to give her something no one else seemed to be able to: a sense of dignity and joy through food.

It’s the same thing I wished for the hundreds of men and women I got to know early on in my career while working contract at nursing homes around Chicago. In the Memory Care Units, I would see Alzheimer’s patients wandering the corridors, a distinctive pattern that causes many to continuously burn calories throughout the day. Several were on a restrictive diet of purees.

“There has to be a better way,” I remember thinking. I imagined instead a delicious snack that was easy to chew, high in calories, and brought pleasure to patients and their ever-burdened caregivers. Suitable for those with dietary allergies, it would be something they could enjoy free of GMOs, gluten, and nuts.

My mind raced with potential.

This new option could allow someone on a pureed diet to have a solid snack if it could be tolerated with a speech pathologist. Plus, clinicians could use the quick-melting bolus as a diagnostic tool with individuals they were hesitant to trial with a solid bolus.

Why hadn’t anyone done this yet?

I started reaching out to companies in the dysphagia/nutritional products space. People loved the idea. Clearly, there was a need. I was shocked to find out that most of these organizations didn’t have a speech pathologist on staff. Typically, they would only consult someone in my field after the products had hit the market.

My original thought returned: there had to be a better way.

“We should make it ourselves,” my brother, sister-in-law, and husband urged me. Bringing together years of clinical expertise, research, and firsthand knowledge of patients’ struggles with dysphagia and feeding, Nutraphagia was officially born.

With the help of food innovator Mattson and Toronto’s Touché Bakery, we created our signature EAT snack, a delicious, easy-to-swallow, quick-melting, high-calorie alternative for people of all ages living with eating challenges. (Fun fact: the individual who developed our product also made the Starbucks Frappuccino.)

The response has been humbling.

Since we produced our first product, the Dark Chocolate Merengue Snack, in March 2017, Nutraphagia has grown organically and exponentially. Last November, we conducted a trial at Portland, Oregon’s Anthem Memory Care that confirmed what we’d been hearing anecdotally from patients and caregivers: on measures of both taste and function, responses across the cognitive spectrum were overwhelmingly positive.

Word continued to spread—as did the excitement.

Nationally renowned palliative care expert and author Susan R. Dolan, RN, JD, who wrote the influential Huffington Post article “This Is How You Feed A Dying Person,” sees the EAT snack as a wonderful tool for pleasure feeds in hospice and recently shared samples with her network of hospice professionals around the country.

Clinicians at top pediatric feeding clinics around the country have endorsed EAT snacks and echoed the same sentiment we’ve heard from adults: patients and their families are desperate for quality products.

As a clinician first and foremost, these are the people who drive me.

It’s the daughter telling me how her mother, who recently had a stroke, had been so disappointed she couldn’t eat a cookie made for her, then beyond thrilled when she was able to enjoy our EAT snack.

It’s the young boy at a pediatric feeding clinic whose speech pathologist told us our snack was the first solid bolus her patient had ever been able to tolerate.

It’s the mother who discovered that her 12-year-old daughter with cystic fibrosis who is g-tube dependent and has limited appetite loves the snack.

It’s the daughter of an Alzheimer’s patient being overcome with gratitude as she watched her mother enjoy the snack—and then ask for more.

These stories are the heart of what we do at Nutraphagia: bring dignity and joy through food, regardless of disorder or disease. For me, it’s a vision years in the making. For patients and their loved ones, it’s exactly what I hoped it would be: a better way.

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Tia Bagan M.S., CCC-SLP, began her undergraduate training at the University of Iowa’s Department of Communication Sciences and Disorders. She continued her graduate training at Rush University Medical Center in Chicago Illinois and was fellowship trained at John Stroger Hospital of Cook County. She returned to Rush University Medical Center as a Clinical Supervisor and Lecturer for 5 years. Throughout her 15 years of practice, Tia has provided patient care in the acute care hospital, out-patient, rehabilitation, day rehab skilled, and long-term care facilities. Through independent research of dysphagia products over the years, she continued to see a discrepancy between the needs of her patients and the current offerings in the market. This is how Nutraphagia was formed. Tia is also a member of the American Speech and Hearing Association and has received the ACE award for excellence in continuing education.