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A Moveable Feast

004-1It’s hard to know which events inform our reality and which only mark the passing of time.

Waking up in the hospital with a brand new feeding tube on board was clearly one of the former.

But there I was.

I had resisted repeated proposals from medical professionals to have a g-tube inserted. They warned of the worsening dysphagia I faced due to the effects of radiation for throat cancer I’d had years earlier. continue reading →



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A Newfound Meaning to Life

Byline: Steve Clark from Camp Verde, AZ

In the years since I was first diagnosed with head and neck cancer I have come to one realization. There is no such thing as a “typical” case. So many delicate and complex systems pass through that part of the anatomy that every survivor tells a different story. This is mine. Glean from it what you will. I hope that it may be of help to someone. continue reading →



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I Love You Even If This Is Forever

Three years ago this month, Julia Tuchman wrote one of our most read patient stories titled “The Hunger Games.” She has gone on to publish an updated story in Elephant Journal that has received over 20,000 views since its publications in May 2016. Julia is an active member of the National Foundation of Swallowing Disorders and an inspiring advocate for dysphagia awareness. At the end of her article, the NFOSD Swallow Documentary has been included to allow those not familiar with swallowing disorders to gain perspective into the lives of those living with dysphagia.

Link to Article: http://www.elephantjournal.com/2016/05/i-love-you-even-if-this-is-forever-a-tale-of-chronic-illness-and-chronic-longing/

 



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Imagine

Byline: Lisa Ingrassia, daughter of a head-and-neck cancer fighter who recently passed away due to complications of dysphagia. Lisa is the author of other NFOSD articles including, “Eat, Drink, and Be Merry…Or Not.”


I challenge you to think of your favorite food or beverage.  The one thing you cannot live without.  Is it your morning cup of Joe?  Or maybe it’s an ice cold beer on a hot summer day?  Or perhaps you love pasta like me?  Pasta with tons of parmesan cheese on top.  Can’t you just taste the deliciousness?  Mmmmm.  Well, sorry you can no longer enjoy those things anymore. continue reading →



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When Breath Becomes Air a book by Paul Kalanithi

When Breadth Becomes AirBy: Ed Steger, President, NFOSD

[Note. Why I’m writing this book review. Plain and simple, Paul’s story resonated with me in so many ways. The book was given to me as a gift by my daughter in January, this too has special meaning.]

This book, for those of you not familiar with it, is a book about death and how death gives meaning to life. It is the new “darling” of The New York Times and NPR. It is written in a genre similar to The Last Lecture and Being Mortal. This isn’t a spoiler as it is on the book’s inside jacket cover, Paul Kalanithi, the author and a neurosurgeon, contracted lung cancer and died in March 2015 at the age of 36. continue reading →