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.
Welcome to the NFOSD Community Forum! The purpose of this online discussion board is to connect those impacted by dysphagia with others – this includes patients, families, caregivers, friends, and professionals who help treat swallowing disorders. This forum allows you to easily share your stories, resources, questions, answers, and support with others.
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By: Elizabeth Lipton, CCC-SLP
Picture this: It’s your first day as a clinical fellow in the Speech Pathology department. You look up the information on your first patient; 55 year-old male with base of tongue cancer experiencing difficulty swallowing 4 weeks into his radiation treatment. You review his swallow study results and consider the best plans for swallowing treatment.
Breaking news – The Swallow Expansion Device (SED) – a potential game changer for patients with profound oropharyngeal dysphagia. In early January 2015 the SED was implanted into Jeff Mauerman, a cancer survivor who is feeding tube dependent due to oropharyngeal dysphagia. This is the first FDA Approved Clinical Trial that allows a Medical Piercing to Control a Body Sphincter (Part 1 of 2)
Byline: Ed Steger, President, National Foundation of Swallowing Disorders
Disclosure: Dr. Peter Belafsky is the Medical Director of the National Foundation of Swallowing Disorders.
[Editor’s note. This story is based on an interview between Jeff Mauerman and Ed Steger that was conducted on February 4, 2015. This is five weeks after surgery and two months before he will know the extent, if at all, to which he will be able to swallow again.]
Laura Michael, nutritionist and NFOSD board member, shows us various ways to thicken your liquids. Watch the video below!