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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 They have become the symbol of my father’s struggle and no longer represent what they mean to so many other others.

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My Failed Swallow: A Disability, Not a Mindset

Byline: Samantha Anderson, AustraliaSamantha working at an instore event in one of her galleries

I could have written this from so many different angles. The fear I faced waking up in an unfamiliar body. The frustration of struggling to find help in a medical system so geared to common ailments and diseases and learning that there is no one who can help. The disgust at how women are treated and pigeonholed as “emotional” or “depressed” – being told “Sweetheart, you’ve just forgotten how to swallow” is so demeaning and disrespectful. Being an outsider in your own life – not taking part in family meals or celebrations. Work functions and events that all center around food and champagne. Friends that don’t know how to catch up if not over coffee, and family that can’t come to visit without planning a barbecue. Or how to deal with food, food and more food being shoved in your face everywhere: magazines, billboards, TV, in the streets, friend’s houses, supermarkets, restaurants, cafés, even in your own home. And how when you’re starving, it’s pure torture.

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Facing Fears and Finding Hope

My name is Fay and I am married to Gordon. I am 80 years old. Gordon is 88 and the patriarch of the Longstaff clan in Australia.

Until early in 2014, life for us had largely been a very comfortable existence, with a small, but close family, a few good friends, many friendly acquaintances, a few crafty hobbies, and basic good health. Gordon and I spent many years taking long caravan-based holidays around our vast island, and when finances permitted, a few overseas journeys, as well. We both took for granted our ability to plan the next adventure without ever anticipating a time when this would no longer be possible.

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EAT, DRINK, BE MERRY AND MAKE A TOAST WITH A NEW VOICE

My name is Alistair Baillie. I am 68 years old and live in Laguna Beach, California- a paradise.

I have been married for 27 years to my savior wife Jennine and have 2 beautiful daughters, 3 dogs and 1 cat named Balthazar.

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