EVERY PRACTICING NURSE has a mental album filled with memorable patients. One of our most remarkable patients was a young man named Joe, whom we cared for in the early 1990s. Joe was 16 years old, smart, social, and mischievous, with a wicked sense of humor. Joe was diagnosed with a severe and progressive neuromuscular disease when he was a toddler. Now at age 16, Joe's disease had progressed to the point that he had minimal strength and motor function below the level of his chin. He required a tracheostomy tube and ventilator to support his breathing. Joe was able to make good use of facial grins, grimaces, and eyebrows to communicate with others. To support Joe's remaining strengths, his brothers devised a very large and unwieldy—but clever—plywood communication board. Two people struggled just to hold the board in an upward position. In the center was a basic alphabet. Around the perimeter were drawings and pictures, common phrases, and some choice words not meant for polite company. One person (usually a nurse) held the board and would take on the role of “interpreter”. The nurse would follow Joe's eye gaze and figure out which letter, phrase, or “curse” that he wanted to communicate, and then vocalize it for him. This primitive augmentative and alternative communication (AAC) tool was a trial-and-error process, but it served the intended purpose. No matter how awkward the board was to use, the nurses supported Joe's efforts. This reciprocal exchange of words, feelings, jokes, and frustrations were how our nursing team came to know Joe as a person, and how he achieved personal dignity when he had little control of his world.
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Published online: July 23, 2012Column Editor: Karen Goldschmidt, MSN, RNC
© 2012 Elsevier Inc. Published by Elsevier Inc. All rights reserved.