Parkinson’s disease and throat cancer are currently sharing a spotlight of sorts. April is Parkinson’s Awareness Month while April 20-26 is Oral, Head and Neck Cancer Awareness Week. Though medically on different pages, the conditions intersect in the augmentative and alternative communication (AAC) world. Adults with speech impairment or loss related to either condition use some form of AAC or can improve their quality of life by doing so. Some use simple AAC methods, as we all do, perhaps without thinking much about it. They write notes for conversation partners to read, use facial expressions or gestures. Or they rely on someone who understands their limited speech, to help them get a point across. Long (sometimes many years) after they’ve established such ways of interacting, many of these folks decide to bring an AAC device into the mix with good results, as Jim and Andy have experienced. Jim, a 25-year cancer survivor, uses a DynaWrite 2. Andy has lived with Parkinson’s disease for 20 years and has a T10.
We tend to hear stories like Jim and Andy’s much less often than those of people with ALS (Lou Gehrig’s disease), cerebral palsy or autism—groups that more traditionally have embraced AAC technology as a primary voice. The reason could be about numbers or physiology. There’s also the reality that when people are dealing with multiple significant life changes that come with a diagnosis like Parkinson’s or cancer, AAC solutions are a tiny piece of the equation.
Of the nearly half million Americans living with Parkinson’s, an estimated 60 to 90 percent have associated speech difficulties that often remain untreated. Declines in articulation, volume, intelligibility, consistency and rate of speech are characteristic of the impairment, which typically happens gradually and can vary from day to day. Development of hand tremors and a masked, or blank, look on the face are also common, making it hard for individuals to communicate through gestures and facial expressions.
Individuals with throat (laryngeal) cancer are a relative minority. The disease places at 20 on a list of various cancer types by prevalence in the United States appearing on the Surveillance, Epidemiology, and End Results (SEER) Program of the National Cancer Institute website. It represents .8 percent of new cancer cases, a small fraction of which result in removal of the voice box, or larynx. Post-surgery, patients may recover speech communication abilities with the aid of a voice prosthesis or electrolarynx. Some learn esophageal speech, a skill that involves speaking through the esophagus, as a way to communicate. Though common, these treatments are not always successful or appropriate for the person.
Enter high-tech AAC solutions, which can fill gaps when other options, even strategies that the person has been using all along, are less than optimal. Relying on written notes can be time-consuming for everyday communication. Familiar communication partners aren’t always there to help as interpreters. Scores of individuals experiencing speech disabilities later in life consider an AAC device the way to go for fluent and reliable interactions with strangers, friends and relatives they seldom see, in crowded or noisy settings or when fatigue sets in. The technology provides a wealth of language to fit their age, abilities and personal interests without fuss. Minimal programming is required to modify and store content. Some devices have keyboards (onscreen or external) for those who, like Jim, prefer to use messages typed spontaneously over preprogrammed ones.
The speech-language pathologists who recommended Tobii Dynavox devices for Jim and Andy say the men took to the technology immediately and confidently. More important, each had strong support from loved ones and friends who knew their communication histories and wanted them to succeed at this new level of self-expression.
Neighborhood kids think Jim’s use of AAC technology is awesome. He talked at a church youth group Christmas gathering using his device. Andy, a retired meteorologist, voluntarily teaches a middle school science class about weather. The students see that his spirit stays strong despite his constant challenges.
As Jim and Andy continue their separate journeys, chances are their stories and others with a similar message will meet again at the intersection of awareness and success—in communication and in life.