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NUTRAPHAGIA: Dignity and Joy through Food

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 as I mixed thickener into Ensure and watched it clump into a bland, unappealing mess. 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.

 

Learn more about Nutraphagia:

Website: https://nutraphagia.com/

Facebook: https://www.facebook.com/nutraphagia/

 

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.

 

 

 



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Contest Rules

The 2018 #IDDSIchallenge! 


Rules and Regulations

Be creative, be respectful to those who require modified diets, and have fun!

  1. Entries can be submitted by anyone: an individual, a corporation, a restaurant, a group of friends, a healthcare organization, a family!
  2. Multiple entries are allowed.
  3. Entries must be original. You cannot share a video that you did not create.
  4. Entries may be no longer than 60 seconds.
  5. In order for IDDSI and the NFOSD to view entries, you must assure your privacy settings for the post is set to “Public.”
  6. In order for IDDSI and the NFOSD to view entries, you must include #IDDSIchallenge and tag @NFOSD.
  7. Entries must be submitted by June 15th, at midnight GMT.
  8. By submitting a video, you are confirming that anyone pictured in the video has provided their consent for this to be shared publicly.
  9. By submitting a video, you allow the NFOSD and IDDSI to share and reuse this on their websites, social media platforms, and with their mailing list.
  10. If an entry is selected into the top 5 creations, the creator will be asked to share the video file with the NFOSD via email. Participants will be contacted through Facebook if they are in the top five.
  11. We will ask any inappropriate videos to be removed and reserve the right to not share these with our community.
  12. Any disrespectful or inappropriate comments on videos submitted will be deleted.
  13. Winners will be announced on the NFOSD and IDDSI social media platforms.


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Report from Old Greenwich

Byline: Tom Dawson, a expert world traveler and tube feed user, has contributed blog posts to the NFOSD to raise awareness about traveling with a feeding tube. His prior posts include: A Moveable Feast (11/25/16) and Traveling Space Available II (6/20/17).

 

July 4, 2017 – Delta Airlines from SFO to JFK – on the way to The Oley Convention

On my flight, there is plenty of room here in economy plus for my feeding tube and Jevity with my Tubenmann shirt (www.Tubenmann.com).

My seat mate is another lawyer and good company and she shows a friendly interest in my nutrition protocol. A couple of hours into the flight over the Midwest, I’m reminded of Rick Steves again. “Travel is recess; and you need it.”

Over a year in preparation has gone into Oley Convention 2017, guided by Oley Executive Director, Joan Bishop, and the dynamic Communications and Development Director, Roslyn Dahl, who seem to be everywhere at once.

Later, I’m watching the fireworks over the city. (I think these fireworks are for the 4th of July – but knowing Roslyn, they could be for the Oley Convention.)

 

July 6, 2017 – Oley Convention Hall, Old Greenwich, Connecticut

I’ve given away lots of Tubenmann shirts from our booth to some really remarkable people – most of them presently tube feeding colleagues, caregivers, or professionals. There is a wonderful sense of comradery here.

Then, a long seminar (complete with three guys from the FDA) dealing with the upcoming arrival of ENFit connectors. The new design will change the way feeding tubes connect to syringes, extention sets, etc., with the intention of preventing misconnections with other tubing systems. The new connectors are hotly contested by some.

Back at the booth, Cynthia Reddick, the Tube Feeding Manager for Coram and someone who has been very helpful to me comes up to the booth. I’m so happy to meet her in person after a year of phone calls and emails, and I tell her that Coram – always reliable – has shipped a small case of Jevity to me here at the hotel in Old Greenwich and will do so again later in the trip to the Hyatt in Bethesda.

 

July 7, 2017 – Oley Convention Hall

Yesterday, and today, I’ve given away a lot of shirts to a receptive audience. One of our colleagues, a nurse named Anna, who is in a wheelchair and uses oxygen, comes by the booth wearing her shirt for a photograph.

 

This inspiring young nurse, who is now in graduate school studying to be an educator of adults with disabilities, is one of the many remarkable people here at the Oley Convention.

 

 

 

July 8, 2017 – Acela Train from Stamford, Connecticut to Washington, D.C.

Reminiscent of the ICE fast trains which I recently enjoyed in Europe, this American version is a little bumpier, but just as efficient. I’m settled comfortably at a window seat with plenty of space and time for some Jevity as I watch the scenery go by.

I’m almost out of formula, but there will be a resupply waiting for me at the next hotel, courtesy of my friends at Coram.

 

July 10, 2017 – Washington D.C.

After the very successful Oley Convention in Old Greenwich and some meetings here in the Washington area, a day off for some site-seeing.

First, we go to the Smithsonian’s Museum of African-American History and Culture.

This expansive, new, and beautiful facility located just across from the Washington Monument, is a wonderful experience which we find populated by a remarkably polite and friendly throng of visitors.

We didn’t have the required ticket but I inquired at the gates to find that first responders or veterans, with proof of that status, could go right in.

And, so we did. Very cool.

A little later, after a walk along the reflecting pool and through the World War II Memorial, we climb the steps to the Lincoln Memorial. I find space there, among crowds of tourists, to take some nourishment – which works out just fine.

Tomorrow, it’s back to California.

The next Oley Convention, a smaller regional meeting, is in Phoenix on September 16th. More information is available at the Oley website.

Perhaps you can go. But, in any event, it is my hope that these brief notes, and my earlier accounts in “Traveling Space Available II” might encourage others in the feeding tube community to engage, enjoy, and get out and about.

And remember, “It’s not just the shirt, it’s the attitude.”

Tom Dawson,  Tubenmann

 



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Recording: NFOSD Virtual Conference 2017

Course Summary (0.6 CEUs):  This comprehensive one-day live streaming dysphagia course was presented by 12 clinical and research swallowing disorder experts on February 28, 2017. The course begins with a review of the basics of the normal swallowing mechanics, taking neurology and age into consideration. It then moves into evaluation techniques, coping mechanisms, and diet modifications. From there, we move into rehabilitation and address exercises, device-driven options, and biofeedback techniques. It wraps up with surgical options, methods for staying healthy, and a panel discussion on living with dysphagia.

*This course is no longer available for ASHA CEU credit.

Learning Objectives:

  • Participants will identify the anatomy and physiology involved in normal swallowing for children and adults.
  • Participants will identify the symptoms, primary etiologies, and pathophysiology of disordered swallowing in children and adults.
  • Participants will demonstrate knowledge and skills needed to implement research-supported strategies for instrumental and non-instrumental evaluation of swallowing.
  • Participants will demonstrate the ability to devise research-supported treatment plans for specific swallowing impairments, taking into account motivation level, quality of life, cultural, ethical, and moral issues.

We recognize and apologize for the substandard quality of the audio and video at times during the recording. We are missing the recording for Denise Barringer’s presentation, “Evaluation 101: Basic Toolbox” and the initial portion of Molly Knigge’s presentation, “Evaluation: Beyond the Basics.”

Conference Program

 

 

Part 1

 

 

Part 2

 

 

Part 3

 

 

Part 4


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National Dysphagia Awareness Month Photo Facts

June is National Dysphagia Awareness Month. Each day during the month of June, we will share a photo fact about dysphagia that is supported by research. We will include a citation for each fact if you are interested in learning more.


June 1


June 2

Citation: Field, D., M. Garland, and K. Williams. “Correlates of specific childhood feeding problems.” Journal of paediatrics and child health 39.4 (2003): 299-304.


June 3

Citation: Holland, G., et al. “Prevalence and symptom profiling of oropharyngeal dysphagia in a community dwelling of an elderly population: a self‐reporting questionnaire survey.” Diseases of the Esophagus 24.7 (2011): 476-480.


June 4

Citation: http://swallowingdisorderfoundation.com/about/swallowing-disorder-basics/


June 5

Citation: Steele, Catriona M., et al. “Mealtime difficulties in a home for the aged: not just dysphagia.” Dysphagia 12.1 (1997): 43-50.


June 6

Citation: Lindgren, Sven, and Lars Janzon. “Prevalence of swallowing complaints and clinical findings among 50–79-year-old men and women in an urban population.” Dysphagia 6.4 (1991): 187-192.


June 7

Citation: Dr. Maureen Lefton-Greif, “Feeding and Swallowing: Chapter 7.” https://www.communityatcp.org/Document.Doc?=&id=


June 8

Citation:  Martin-Harris, B. (2015) Standardized Training in Swallowing Physiology – Evidence-Based Assessment Using the Modified Barium Swallow Impairment Profile (MBSImP) Approach. Gaylord, MI: Northern Speech Services.


June 9

Citation: Leder SB, Suiter DM, Lisitano Warner H. Answering orientation questions and following single-step verbal commands: effect on aspiration status. Dysphagia. 2009;24(3):290–5


June 10

Citation: Sura L, Madhavan A, Carnaby G, Crary MA. Dysphagia in the elderly: management and nutritional considerations. Clinical Interventions in Aging. 2012;7:287-298. doi:10.2147/CIA.S23404.


June 11

Citation: Policy, Enteral Nutrition ASPEN Public. “Disease-related malnutrition and enteral nutrition therapy: A significant problem with a cost-effective solution.”Nutrition in Clinical Practice 25.5 (2010): 548-554.


June 12

Citation: Dettelbach, Mark A., et al. “Effect of the Passy‐Muir valve on aspiration in patients with tracheostomy.” Head & neck 17.4 (1995): 297-302.

Cameron, J. L., J. Reynolds, and G. D. Zuidema. “Aspiration in patients with tracheostomies.” Surg Gynecol Obstet 136.1 (1973): 68-70.


June 13

Source: http://iddsi.org/


June 14

Citation: Rosenthal, David I., Jan S. Lewin, and Avraham Eisbruch. “Prevention and treatment of dysphagia and aspiration after chemoradiation for head and neck cancer.” Journal of clinical oncology 24.17 (2006): 2636-2643.


June 15

Citation: Arvedson, Joan C. “Assessment of pediatric dysphagia and feeding disorders: clinical and instrumental approaches.” Developmental disabilities research reviews 14.2 (2008): 118-127.


June 16

Citation: Ramqvist, Torbjörn, and Tina Dalianis. “Oropharyngeal Cancer Epidemic and Human Papillomavirus-Volume 16, Number 11—November 2010-Emerging Infectious Disease journal-CDC.” (2010).


June 17

Citation: Paciaroni, Maurizio, et al. “Dysphagia following stroke.” European neurology 51.3 (2004): 162-167.


June 18

Father’s Day Patient Story: http://swallowingdisorderfoundation.com/4065-2/


June 19

Citation: Baumann, Brooke, et al. “Postoperative Swallowing Assessment After Lung Transplantation.” The Annals of Thoracic Surgery (2017).


June 20

Citation: Rogus‐Pulia, Nicole, et al. “Effects of Device‐Facilitated Isometric Progressive Resistance Oropharyngeal Therapy on Swallowing and Health‐Related Outcomes in Older Adults with Dysphagia.” Journal of the American Geriatrics Society epub ahead of print (2016).


June 21

Citation: Nguyen, Nam P., et al. “Impact of dysphagia on quality of life after treatment of head-and-neck cancer.” International Journal of Radiation Oncology* Biology* Physics 61.3 (2005): 772-778.


June 22

Citation: Arvedson, Joan C. “Assessment of pediatric dysphagia and feeding disorders: clinical and instrumental approaches.” Developmental disabilities research reviews 14.2 (2008): 118-127.


June 23

Citation: ALS dysphagia pathophysiology: Differential botulinum toxin response; Restivo, Domenico A. MD, PhD; Casabona, Antonino PhD; Nicotra, Alessia MD, PhD; Zappia, Mario MD; Elia, Maurizio MD; Romano, Marcello C. MD; Alfonsi, Enrico MD; Marchese-Ragona, Rosario MD, PhD 2013.


June 24

Citation: Good-Fratturelli, Misty D., Richard F. Curlee, and Jean L. Holle. “Prevalence and nature of dysphagia in VA patients with COPD referred for videofluoroscopic swallow examination.” Journal of communication disorders33.2 (2000): 93-110.


June 25

Patient Story: Julia Sharon Tuchman shares her experience with dysphagia

http://swallowingdisorderfoundation.com/i-love-you-even-if-this-is-forever/


 June 26

Citation: Muller J, Wenning GK, Verny M, et al. Progression of dysarthria and dysphagia in postmortem-confirmed parkinsonian disorders. Arch Neurol. 2001;58(2):259–264.


June 27

Citation: Peter Belafsky, NFOSD Webinar July 2015 “Most Common Causes of Solid Food Dysphagia.” 


June 28

Citation: Martino, Rosemary, et al. “Dysphagia after stroke.” stroke 36.12 (2005): 2756-2763.


June 29

Citation: Leder, Steven B., and Julian F. Espinosa. “Aspiration risk after acute stroke: comparison of clinical examination and fiberoptic endoscopic evaluation of swallowing.” Dysphagia 17.3 (2002): 214-218.


June 30

Cook Medical interviews NFOSD President, Ed Steger, about his journey with head and neck cancer and his mission to raise awareness of dysphagia, a devastating disorder.

Read the Interview