DYSPHAGIA (dis – FAY – jah) - Swallowing Disorder

DYSPHAGIA (dis – FAY – jah): This word comes from the Latin root of “dys” which means difficulty and “phagia” which means eat or swallow. Dysphagia is the medical term for swallowing difficulties. Swallowing is one of the most complex neuromuscular movements in the human body and it affects a large and growing number of individuals worldwide. Swallowing difficulties may be due to nervous systems disorders such as stoke, brain injuries, Lou Gehrig’s disease (ALS), multiple sclerosis, muscular dystrophy, Parkinson’s disease, cerebral palsy, Alzheimer’s disease or to head and neck traumas from surgery due to cancer, other illnesses, or to accidents.

I had a Modified Barium Swallow (MBS) test this past week. This test is used to assess one's swallowing function. Highlights from my test were as follows:

·       I have a functional swallowing capability. It works at about 10% of one's normal swallowing capability.

·       My swallowing ability is highly dependent on an environment which supports my compromised capabilities. This includes: 1) consuming mostly liquids, 2) being in a reclined position to let gravity do most of the work, and 3) no distractions. Basically, I am forced anatomically to consume nutrition in a non-social environment using focused concentration to help ensure I minimize aspirating food into my lungs.

The MBS test is one of the coolest medical tests I have witnessed in my cancer journey. It is a live x-ray while swallowing slightly radiated foods and watching how one's swallowing apparatus operates in real time. I was able to upload my MBS video to the Internet and have included a link to that test below. It's 72 megabytes, so it may take a minute or two to launch.

https://dl.dropbox.com/u/77469149/2012-07-11%2015.36.17.mpg

The remainder of this blog entry is information I compiled from a number of different websites in addition to where one might turn to give or receive support for dysphagia.

The numbers: The prevalence of dysphagia is unknown, but Epidemiologic studies indicate that the numbers may be as high as 22% of the population over 50 years of age. Several studies conclude that between 300,000 and 600,000 individuals in the United States are affected by neurogenic dysphagia each year. Plus, 10 million Americans are evaluated each year for swallowing difficulties. Because this disorder cuts across so many diseases, dysphagia is poorly understood and often under diagnosed.

Social impacts: We take many of our bodily functions for granted; for example, breathing, a beating heart, and eating. The impact of breathing and heart disorders are not to be minimized, but they are relatively straightforward. The impact of swallowing disorders is more difficult to quantify. Here are two exercises to help illustrate this point.

·      Think of the number of times in the past week where you shared a meal or snack with friends, family, or even the occasional stranger. STOP HERE! Do you have a number in mind and a vision of those occasions? Now, imagine never having another meal with another human again, EVER. How would your life be different? Would you dine with your family? NO. Would you go out to lunch with co-workers? NO. Would you take clients out to meals? NO.

·      The next time you watch a movie count the number of events where there is any drinking or eating. That sip of beer by the pool, the snacks at the party, the plans made over breakfast, lunch, or dinner. On first blush in thinking about past movies, the eating fades into the background. Remember, we take it for granted. We’re not counting the number of breaths taken of number of heartbeats. The number of events where eating is taking place with amaze you.   

Our society revolves around food and meals. For people with dysphagia, life as you know it ceases to exist. Dysphagia causes depression, low self esteem, lost wages, poor social performance, increased health risk such as aspirating pneumonia and for many leads to an increased likelihood of suicide.

Dysphagia symptoms: Each person is different, but some of the common symptoms of this disorder are as follows:

·      coughing during or right after eating or drinking

·      wet or gurgly sounding voice during or after eating or drinking

·      extra effort or time needed to chew or swallow

·      food or liquid leaking from the mouth or getting stuck in the mouth

·      recurring pneumonia or chest congestion after eating

·      weight loss or dehydration from not being able to eat enough

There are diagnostic tests for dysphagia. These tests are generally run by speech-language swallowing pathologist. The most commonly used tests are the Modified Barium Swallow and the Endoscopic Assessment.

Dysphagia treatment: Treatment depends on the cause, symptoms, and type of swallowing problem. A speech-language pathologist may recommend:

·      specific swallowing treatment (e.g., exercises to improve muscle movement)

·      positions or strategies to help the individual swallow more effectively

·      specific food and liquid textures that are easier and safer to swallow

Resources: There are a few organizations whose mission it is to provide support for clinicians, patients, and care givers for people with dysphagia. Following is a partial list of top organizations:

·      National Foundation of Swallowing disorders (www.nfosd.com)

·      American Speech-Language-Hearing Association (www.asha.org)

·      Dysphagia Research Society (www.dysphagiaresearch.org)

Other Resources: There is a free app for the iPhone named iSwallow^TM. It has 15 physical exercises to help those with Dysphagia overcome (or lessen the affects of) this devastating disability. The app is intended to be used by patients after consultation with their speech-language pathologist. The app is 100% free to clinicians and patients. It allows a clinician to input a schedule of daily exercises unique to each patient. The app has a video instruction for each exercise, reminds patients of their exercise routine, helps time their exercises, and records a log of their usage.

How to Help or be helped: The National Foundation of Swallowing Disorders, a non-profit 501(c)3 organization established in 2006 is on a drive to recruit speech-language pathologists nationwide to lead regional in person and online dysphagia support groups. If you are a speech-language pathologist interested in leading a support group in your area, please visit the foundation at www.nfosd.com. If you are a dysphagia patient and would be interested in joining an online or in person support group, please visit foundation at www.nfosd.com as well. Use the "Contact" tab to send a message to the foundation. There is no fee for registering or joining a support group.