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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 →



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Tough to Swallow

Kate

Byline: Kate Kelsall is an award-winning blogger about Parkinson’s Disease and co-hosts a Deep Brain Stimulation (DBS) support group she started in Denver, CO. Her experiences as a social worker, combined with living with Parkinson’s Disease for the past 20 years and having DBS for the past 10 years, make her well-suited to viewing Parkinson’s from both of the perspective of patient and professional. She is dedicated to guiding individuals and families through the DBS experience. Check out her blog at: http://katekelsall.typepad.com/my_weblog/


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Eat, Drink, and Be Merry…Or Not

Written by Lisa Ingrassia, daughter of a head-and-neck cancer fighter and author of “A Daughter’s Thoughts – Happy Father’s Day, Dad,” published by the NFOSD in 2013


December 23rd. It’s the most wonderful time of the year. Every time we turn around there’s all sorts of delicious goodness surrounding us. You just cannot escape it.

But for our family, it’s a constant reminder of what has been taken away from us. My father, Al Ingrassia, is a Stage 4 throat cancer survivor. He’s my hero, my best friend, everything a daughter could ever want in a father. He beat tongue cancer and 3 years AFTER his treatments he lost the ability to eat or drink orally. He lives on a PEG tube. He’s constantly choking on thick phlegm, always spitting in his red Solo cup. I now hate red solo cups. They have become the symbol of my father’s struggle and no longer represent what they mean to so many other others.

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