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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



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Kindness is Powerful!

The Albert J. Ingrassia fund was established to help the countless individuals living with a swallowing disorder. Swallowing disorders are poorly understood, under-diagnosed, and as a result, mistreated, even by experienced professionals.

Al Ingrassia passed away from complications due to Stage IV tongue cancer treatments on January 17, 2016. Aggressive radiation treatments damaged Al’s epiglottis so severely that he was diagnosed with severe dysphagia, unable to ever eat or drink orally again. Think about celebrating your next special occasion with a loved one who can no longer eat. No more sipping coffee, no more toasting special occasions, no more birthday cake. My father, my hero, survived on medically prescribed shakes, Gatorade and water. During his time living on a PEG Tube, my father was constantly choking on thick phlegm often telling family and doctors he felt as if he was being suffocated. Swallowing disorders not only effect the patient but dramatically impacts the entire family.

The National Foundation of Swallowing Disorders (NFOSD) became the go to place for valuable information throughout my father’s illness. Your generous donation will go directly to the National Foundation of Swallowing Disorders to provide patient support, raise disorder awareness and promote funding for promising dysphasia research.

Your donation will give hope and improve the quality of life to the countless patients like my father, enduring all types of swallowing disorders. Click here to donate. The NFOSD is a 501 (c)(3) non-profit and all donations are tax deductible in line with IRS regulations.

NFOSD is also registered on Amazon Smile. Make giving a part of every Amazon purchase. Go to www.smile.Amazon.com and chose the National Foundation of Swallowing Disorders as your default charitable organization or click here to be directed to our Amazon Smile page. Our Amazon Smile link is: https://smile.amazon.com/ch/20-5395281.

This fund was established by Lisa Ingrassia in honor of her father, Al Ingrassia.