What It's Like to Lose Your Ability to Speak

For me and my mother, watching fall slip quietly once again into winter, we're both reminded that something is missing. That something is my dad, who died around the holidays in 2007 after a long fight with ALS.

And fight my dad did -- against a diagnosis that was completely hopeless. With the goal of watching me graduate from high school, my dad followed a strict diet and exercise routine determined by ALS experts, while trying every experimental treatment, medical device, and non-Western therapy available.

2015-12-16-1450278933-101384-dad1.jpg Just like my dad, my eyes nearly close when I smile. The cover photo is from his wedding to my mom.

Despite this concerted effort, my dad failed to reach his goal. He died before I graduated, stuck in a time before the Ice Bucket Challenge brought a surge of awareness; before new technological advances (like the Ultracortex, discussed below) try to improve quality of life; and long before the destiny predicted by futurists of a disease-free world.

One of the cruelest parts of witnessing my dad fade was losing the ability to communicate with him. As his illness progressed, the muscles weakened that allowed him to speak. It was so exhausting that in the interest of his health, I was restricted from talking to him for more than a few minutes per day. I had burning questions for my dad, but in order for him to answer, he'd have to strenuously remove his breathing mask and gasp out his words. His voice got quieter and quieter.

2015-12-16-1450279017-8146040-Gal1.jpg Programmer and ALS patient Gal Sont with his family. Photo: Gal Sont

If my dad were diagnosed with ALS today, he would want to use his technical skills to make life better for others with the same problem. That's exactly what programmer and ALS patient Gal Sont is doing now. Like my dad, Sont has a young daughter. Like my dad, he's taking every opportunity to, in his words, "hack his way back into the world" and above all, speak with his daughter.

"Communication is everything. While all other functions that are required to live, like eating, drinking, moving, and even breathing can be replaced by machines or a caregiver, no one can say 'I love you' to my daughter for me," Sont said.

With his motivation and training, Sont is key to developing the Ultracortex, a new piece of technology (full disclosure: being made by OpenBCI, where my friend Conor Russomanno is Co-Founder and CEO) that has the aim of restoring quality of life to people suffering with locked-in syndrome.

"I am a very practical person," Sont said, "and once I understood that in the future I won't be able to speak or move, I started looking into the communication means available. I learned that a good communication solution costs a lot, so I decided to develop the best solution and give it for free to anybody who needs it and can't afford the expensive ones."

The objective, if the plan works, is for the Ultracortex to translate the electrical signals that the brain sends to the extremities through the nervous system, so that ultimately, even if Sont or someone like him is completely unable to move, he'll still be able to communicate using a code.

"When I'm not in front of a computer, I have no voice and cannot express what I want or need," Sont said. "This is very frustrating and spirit-breaking. Developing the Ultracortex will make sure this will never happen."

I wish technology that facilitated communication with people who couldn't easily speak had been available (and affordable) while my dad was alive. As a technologist and human being, I can feel how excited he would've been, how delighted to be able to continue our conversations as long as possible.

Learning about these systems, I'm filled with regret for the long talks with my dad we missed before he died, that might have been possible with access to a fully realized Ultracortex. It's my hope that by sharing my dad's story, I can do a small part in decreasing the chance that Sont's daughter -- and the other loved ones and colleagues of people suffering -- will have the same regret I do.

To learn about the campaign to help people like my dad and Gal Sont, check out the Ultracortex on Kickstarter. More info about OpenBCI here as well.