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/
By: 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 →
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/