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ALS Worldwide

Keeping Communication Open

November 29, 2017

Has ALS/MND impacted your ability to speak or otherwise communicate?

Father Sophronios from Chania Crete offers his perspective on how to keep communication open.  In his words, “Although I may have lost my voice, I have not lost my ability to communicate. Thanks to my computer system I am in regular communication with friends and loved ones. I feel alive through this communication. I have meaning and purpose. I don’t feel closed in or cut off. Please don’t shut down; open up and communicate.”

Being able to communicate with family, colleagues and friends helps maintain independence and positive feelings. Muscle weakness, atrophy and paralysis cause speech to become difficult or impossible for someone living with ALS/MND. However, communication can be continued through other means.

Many clinics provide access to a speech therapist who teaches strategies to combat slurred speech, improved breath projection and strengthening exercises for the tongue, lip and palate muscles. Exercises can be as simple as practicing exaggerated enunciation by reading a book or newspaper out loud for a few minutes each, pronouncing each syllable slowly and loudly and taking deep breaths to assist projection. Even though a person’s ability to speak may be diminished, continuing to speak helps maintain the ability to speak. Fortunately, technology has advanced significantly so that alternative forms of communication are available to help express ideas, thoughts and needs. 

Computers offer tracking and eye gaze interaction programs today that are both affordable and easy to operate.  Tobii Technology and DynaVox EyeMax are two of the more popular systems available.  Complete operations are possible through an eye gaze system or one that functions through a small dot on the forehead. Light touch switches, such as the Micro-Light or NeuroSwitch are also available alternatives. Improvements to these systems are constantly being made. Some clinics have samples available so that deciding which type of system is preferable can be made through a hands-on experience. Many products are covered by Medicare and private insurers as well.

Software developer Julius Sweetland, whose aunt had ALS, developed OptiKey, a new program that allows patients to utilize a computer keyboard using only their eyes for just a fraction of the cost of traditional eye tracking software.

Many Apps for mobile devices, like phones and tablets, offer portability, are easy to use and provide a less expensive option. Direct links to all of these opportunities are available through the article attached to this podcast.

The Waisman Center at the University of Wisconsin-Madison—dedicated to research about developmental disabilities and neurodegenerative diseases—has created a series of free training videos in Augmentative and Alternative Communication on their website, an excellent resource for communication exploration.