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Meet May Roberta Roméy – She has Dysphagia

[Editor’s note: I had the opportunity to interview this wonderful woman recently. She also traveled from the NYC area to join NFOSD at our meeting with NIH (pictured at left) in mid-May 2013. Here is her story, as told beautifully in her own words. We thank May for the courage to share her story.]

Tell me a bit about yourself before your stoke?

I assisted students who were preparing to enter college, helping them select their Major and emphasizing the importance of starting and finishing school.  I was known as having impeccable enunciation and pronunciation.  I wrote, directed and performed in radio skits for a NY Radio Station and at one time was scheduled to be a TV spokesperson.  My written communication skills including: grammar, spelling and punctuation were excellent.  At one time I freelanced as a Publicist/Marketing Specialist for community theatre, small business and celebrities.  I was published in an anthology and wrote for a couple of magazines, once upon a lifetime ago.

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The Hungry Games – A True Short Story of Life With Dysphagia

juliashaybiopicByline: Julia Tuchman is a writer and photographer living in New York City. Having dealt with chronic illness and dysphagia for much of her life, Julia now writes and teaches about self-love in the face of any circumstance. She teaches this because it is a lesson she herself is here to learn. Julia is currently busy working on her memoir and taking care of her six-pound rescue dog Bellie, who in turn offers lessons in unconditional love. www.juliatuchman.com

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A Daughter’s Thoughts – Happy Father’s Day, Dad

Byline: Lisa Ingrassia

I have always been a “daddy’s girl”, so when my father was diagnosed with Stage IV base of the tongue cancer in late December of 2008 my entire life changed.  The days following my Dad’s diagnosis are forever etched in my brain.  Our family prepared for the fight of our lives. I quickly learned that when a cancer patient said he was “battling” cancer, he certainly was.  The weeks of my Dad’s intensive radiation and chemotherapy treatments were grueling and often times testing.

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Jack is Back – Two Week Swallowing “Boot Camp”

A Daily Log of my experiences by Jack Eadon

[Editors note. The NFOSD published Jack Eadon’s story in mid-November. He has a website, www.jacksgettingback.com where he has chronicled his medical and personal journey. On January 14, 2013 he began an intensive two week “Boot Camp” to try and regain his swallowing ability. As President of the NFOSD, I communicate with a lot of people suffering from dysphagia. One of the pleasures of this position is meeting other people, like Jack, who are determined and committed to do what they need to succeed. The NFOSD wishes Jack the best and hopes this intensive approach to therapy opens a new avenue in our arsenal for fighting dysphagia.]

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Bittersweet Nectar – The Journey of a Mom and Her Son

By Jaime Bailey (Eli’s mom)

[NFOSD note – Jaime shares the 5 most helpful tips for families experiencing a similar experience at the bottom of this article.]

The NFOSD shared my son’s story with you recently; I thought it might be helpful to others if I shared my story.  My beautiful, energetic, happy, 2 year old baby boy, the joy of our life, has severe dysphagia.  I know there are lots of other mothers out there just like me.  We are not alone!  Raising the awareness of swallowing disorders is a small step that can help millions.

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