Share this post: ×

The Shaking Man (A Prose Poem), Part 1

The Shaking Man (A Prose Poem), Part 1

By Reinfred Addo

(For Terri Beamer Shelor and Karen Gaines–incredible instructors, mentors, and speech-language pathologists)

continue reading →



Share this post: ×

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 by no means 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. continue reading →



Share this post: ×

Faces of Dysphagia 2018

Meet our 2018 Faces of Dysphagia

June is recognized as National Dysphagia Awareness Month. The following photos show our brave volunteers: patients, families, and caregivers who don’t let dysphagia hold them back.

Thank you to our volunteers and generous donors who sponsored our social media campaign to help raise funds for dysphagia advocacy, support, education, and research!

continue reading →



Share this post: ×

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

 



Share this post: ×

Essential History: From My Mom, To the World

By Diane Wolff

I am an author who gave up the writing life in the big city to return to the family and take care of my mother. The late, great Cathie G was one of a kind: energetic, spunky and independent. She had a great sense of humor and she ruled her children with an iron hand. She was a great mom for me and when she asked me to take care of her, I could not refuse. continue reading →