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/
(First published September, 2012) August is usually my favorite month for enjoying the warm summer days. Not this August—it was just a blur of medical appointments. I consumed a lot of barium, which is heavy in weight and sandy in texture and yucky in taste, while being zapped with radiation at two appointments during the month.
I was tested for aspiration (food, liquid, or other material getting into the “wrong tube”– the trachea instead of the esophagus) and voice and swallowing problems.
On August 3, I had the Barium Swallow. This test involves drinking barium while in various body contortions–right side up, upside down, facing right, facing left, facing back, while lying down on my back, and while lying face down. I aspirated while drinking barium in a prone position (face down). I silently wondered who drinks while lying on their stomachs, but didn’t question it.
Fortunately, since I am in overall good health, I got rid of that offensive barium by coughing vigorously. I was required to take this test without food, drink or medication for 8 to 12 hours. Without Parkinson’s meds for 12 hours, I arrived at the appointment stiff and in very slow motion. Picture the tin man without oil. NPO (nothing by mouth) after midnight can be disastrous for someone with Parkinson’s, and I should have asked if my medications were an exception to that rule.
What I learned: If something gets into the airway, it has a good chance of getting into the lungs. The worst case scenario is that it could result in aspiration pneumonia, which, for a person with moderate or advanced Parkinson’s might result in alteration in diet (thick liquids) and worse, even a feeding tube. Persons with Parkinson’s Disease who are weak from another illness or surgery are more at risk.
On August 17, I had the Modified Barium Swallow (MBS). It’s confusing in that this test has the same name as the previous test with a “Modified” in front of it. Apparently, the referring physician was also confused by this, as the MBS would have been the safer and more appropriate of the two tests to order when looking for aspiration. This test is conducted by a speech-language pathologist (SLP) in Radiology. I was asked to swallow small amounts of food and liquid such as applesauce and a cookie that was mixed with barium, and recorded on video. The results revealed no evidence of aspiration or dysphagia (difficulty swallowing). When I asked about swallowing strategies and swallowing therapy, the SLP responded that it wasn’t necessary because I was already using swallowing strategies that were effective.
What I learned: The Barium Swallow is indicated for looking at the function of the esophagus, including reflux. Although the liquid barium must pass through the mouth and throat on its way to the stomach, for persons with swallowing difficulty (known or suspected), drinking large amount of barium in positions not natural to eating and drinking may actually result in aspiration.
Make sure you are getting the correct test as ordered by your physician.
Following my swallow studies, I was evaluated again by an Ear, Nose and Throat (ENT) and voice specialist. Yet another swallowing test was completed, this time with a scope passed through my nose just above the voice box. The ENT made no recommendations for immediate medical or non-medical treatment, but suggested that I may want to return if my aspiration worsened considerably in a year. It seemed odd to me that I should “wait” for my aspiration to worsen before further medical treatment would be offered.
What I learned: I am as much of an expert on my own medical condition as any specialist. It is important for me to take charge, learn as much as possible about my health, ask why a particular test is being ordered, and seek out remedies to manage my health issues.