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Dysphagia: What's food got to do with it?

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dysphagia_swallow_disorders_swallowing_problems.JPGBy Ed Steger

Ed Steger is a head and neck cancer survivor. He was diagnosed in 2005 and, after rough patches in 2006 and 2007, has been in remission. He is president of the National Foundation of Swallowing Disorders and blogs about his cancer experience at www.hncancer.blogspot.com.

A hot dog at a football game. Ham and mashed potatoes at Christmas dinner. Popcorn at the movie theater.

These are experiences that a person with dysphagia may never again enjoy.

Dysphagia is the medical term for difficulty with swallowing. It's not a disease; it's a disorder.

Our society revolves around food and meals. When you're diagnosed with dysphagia, life as you know it ceases to exist.

Dysphagia can cause depression, low self-esteem, lost wages, poor social performance and increased health risks. Working through the disorder's mental aspects can be as challenging as the physical limitations.

I know because I was diagnosed with severe dysphagia in 2007 after numerous life saving head and neck cancer treatments.

My level one dysphagia diet
On the National Dysphagia Diet scale, I have a level one disorder (out of three). This allows me to consume food defined as "Dysphagia-Pureed (homogenous, very cohesive, pudding-like, requiring little chewing ability)." I'm not on a feeding tube, but 95% plus of my nutritional intake is vanilla Boost (or Ensure) thinned with milk.

In many ways, I consider myself fortunate. If my disorder was worse, I would be classified as nil per os (NPO), a Latin phase which translates to "nothing by mouth." I'd need a feeding tube to eat.

Coping with the psychological impacts of dysphagia
It's common for people with dysphagia to experience feelings of isolation, anxiety, guilt, and depression. I know this from both personal experience and others who are all too familiar with this disorder.

In September, I became president of a non-profit foundation for swallowing disorders. We communicate with the dysphagia community daily, and the stories are similar: abandonment by friends and family, social awkwardness, isolation and depression. It's tough on everyone.

Hope for those with dysphagia
But, there's hope for people with dysphagia. There are evaluation techniques such as Endoscopic exams and modified barium swallow tests; treatments such as dilations and VitalStim; physical therapy exercises and Speech-Language Pathologists who specialize in swallowing disorders.

Taken together, these measures can alleviate the symptoms and even cure dysphagia in many patients. I know because they've helped me.

I've had Endoscopic exams, four modified barium swallow tests, a dilation procedure and consultations with Speech-Language Pathologists. I also perform daily exercises to help with my swallowing and speech functions.

I also follow the latest research on alleviating dysphagia, which gives me more reasons to be hopeful.

Find help through a dysphagia support group
There are also swallowing support groups and in-patient and outpatient clinics across the country for dysphagia sufferers.

MD Anderson recently brought together swallowing clinicians from five medical facilities in the Houston area. It's hosting an initial support group meeting around mid-January. The group is open and free of charge to all dysphagia sufferers and their caregivers.

Participating in a support group has provided some with new coping mechanisms and has been a part of our healing process. Learn more about this group and others around the country.

It's hard to imagine a world which is food no longer exists. But, for those suffering from dysphagia, it is the world in which we live. For those who are healthy, be thankful for life's simple pleasures.

2 Comments

God Bless you!!!!

I am 5 weeks post radical tonsillectomy to remove cancerous tonsil, and have now been able to swallow since, in spite of exercises, swallow studies, etc. Allegedly my epiglottis is not inverting and therefore not blocking my airwave to allow ne to swallow- instead I silently aspirate. Does anyone have experience with the epiglottis or other swallowing issues and also has anyone had proton therapy rather than radiation for oral cancer, to avoid or alleviate the swallowing problems?

Thanks

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