Rob Eichler: An ALS Journey of Communication and Connection

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Rob Eichler and his wife Martha have an actual piece of history stored in their basement; something created by Rob’s father and of enormous significance for the ALS community. It’s also a piece of history that would gain a new personal significance for Rob decades after it was created when he would learn he had ALS.

Rob’s introduction to ALS came when he was just 13 years old. His father, an engineer, had a colleague who was living with the disease. “I visited him a few times with my dad,” Rob said. “I was somewhat daunted by the hospital bed in the dining room, the immobile father surrounded by his wife and several sons around my age.”

As his friend lost the ability to speak and the use of his arms, Rob’s father put his engineering mind to work and with his friend, developed the ETRAN Communicator, a groundbreaking tool that allowed individuals with ALS to communicate using only their eye movements.

“My dad and his friend were devising a way for him to select letters with a glance of his eyes,” Rob explained. “The importance to these two engineer designers was to enable the selection of the most frequently used letters with a single glance.”

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The first ETRAN Communicator—that piece of history from Rob’s basement—was a simple, see-through board marked with letters, enabling communication through eye glances. It was simple on purpose, designed to be easy to learn, and use. “A recipient communicator could have the system explained to them in about two minutes and then converse with the patient immediately,” Rob said. “The name ETRAN was simply a pronounceable word made up of five of the eight most-used letters.”

Although more advanced, high-tech options are now available to help people living with ALS and others with disabilities communicate, ETRAN is still used today.

The world has taken the original ETRAN design and improved upon it for specific uses and patients. I recognize two descendent lines of the ETRAN. One is the low-tech see-through board that connects patients and caretakers with eye glances. The second line is the use of technology to capture eye-gaze to direct computer input.”

Rob’s father never saw any financial benefit from developing the device and, in fact, never sought any. “I was proud of my dad for developing the board, and more so because he intentionally sought no patent, recognizing its high value to people who would require its use and for whom any price would be a barrier,” Rob said.

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Long after his father developed his device, ALS would again touch Rob’s life but in different ways. In 2009 a college drama professor of his would face the disease and then in 2012, the brother of a work colleague would as well. But in 2023 Rob’s connection would become intensely personal. His speech began to slow and slur. Months of testing and doctor visits would lead to an August 2023 diagnosis of ALS.

Before his ALS diagnosis, Rob’s life was a combination of creativity, learning, and service. He enjoyed a decade-long career in professional theater, working as a director, playwright, stage manager, actor, and designer. Later, Rob moved into health care management information systems while he and his wife raised two daughters.

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As he approached retirement, Rob had hopes of reviving his stage career. “I was finally old enough to play all those character parts that I was cast in during high school and college,” he said. But his ALS diagnosis forced him and his family to alter those and other plans.

The disease’s progression—unpredictable for each person—brought new challenges. For Rob, who has bulbar onset ALS, the loss of speech has been particularly challenging. “Lost are the opportunities for right-moment deep conversations—and too the light-hearted banter around the house,” he said.

And to bring his ALS story full circle, during a clinic appointment Rob’s communications specialist would demonstrate augmented communication options by pulling out an ETRAN device.

ALS robs one of so much, generally measured in years. But it's not the count of years so much as what one had hoped to do in those years.”
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Yet, even amidst these losses, Rob has found different ways to live a life full of meaning. His decision to take part in ALS clinical trials has become a significant part of his journey. “I find participating in trials and studies gives me a sense of purpose,” he explained. “Any understanding that may be gained to move medical science toward a cure is meaningful, whether it becomes available in my lifetime or only for others. It also gives me a sense of belonging to a larger community of people working toward a cure.”

Despite the challenges of ALS, Rob continues to celebrate life’s small joys in whatever form they may now take. “The hikes along the Appalachian Trail of my youth are now circumscribed to a half-mile amble along a local trail by a reservoir, or even to stand in the backyard and watch the chickadees and nuthatches come and go to the birdfeeder,” he said.

Reflecting on his father’s creation of the ETRAN Communicator, Rob sees the connection between the original device and today’s advanced communication technologies. From low-tech eye-gaze boards to high-tech computer interfaces, the goals remain the same: enabling human connection and preserving dignity for those living with ALS.

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So many years after his father’s efforts to help a friend facing the challenges of ALS, Rob is continuing that legacy of connection, creativity, and hope. “ALS is more than a clinical disease,” Rob said. “It’s a change in lifestyle. Learning how to be willing to place your trust in other people, and to be able to receive their help, care, kindness, and love.”

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