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Dysphagia in the News: Hard to Swallow

The Spring 2018 online publication of the Pittsburgh Quarterly featured an article titled, “Hard to Swallow,” focusing on the prevalence of dysphagia and its treatment options. The article emphasizes the important role that speech-language pathologists have in treating patients diagnosed with dysphagia and outlines novel assessment approaches under investigation by researchers, including Dr. James Coyle.

Click Here to Read the Article



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Webinar Recording: International Dysphagia Diet Standardisation Initiative



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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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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 →



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Kindness, a Powerful Force: During our Darkest Moments There is Light

Byline: Lisa Ingrassia

On Sunday, February 19th with the love and support of great friends I hosted my first “Paint It Forward” event at Pinot’s Palette in Red Bank, NJ.  The energy in the room was electric, you could feel the love.  52 beautiful people came out to celebrate my father’s life and help raise awareness for swallowing disorders!!!  We had a packed house and are grateful to everyone who came out to support the Albert J. Ingrassia Fund! It was a fabulous night of laughter, kindness and love.  To learn more about what prompted this event, please continue reading. continue reading →