Developing apps for ALS: My personal journey

7 minute read

When I was about 10 years old I met a young woman, a friend of a family friend, who told exciting stories about sailing around the world with her French boyfriend. They were living the kind of life that most people only dream of. Ten years later I found out from my parents that her boyfriend, this adventurous man that used to sail the seas, had an incurable disease.

A disease that would slowly but steadily rob him of his mobility, his speech and ultimately his life. I refused to believe a disease like that existed. Little did I know that my life would later take a course in which I would not only develop close relationships with a number of people living with this devastating disease, but that I would actually be developing software to help them continue to lead a meaningful life.

What is ALS

Amyotrophic lateral sclerosis (ALS), also referred to as MND (motor neuron disease) or Lou Gehrig’s disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons connect the brain through the spinal cord to the muscles throughout the body. As ALS causes the motor neurons to degenerate, the ability of the brain to initiate and control muscle movement is lost, eventually leading to total paralysis. Arms, legs, speech, swallowing or breathing are gradually affected but the order may vary from person to person. And while the ice-bucket challenge and the ‘Theory of Everything’ have undeniably increased the awareness of ALS, relatively little is still known about its cause or cure. The one thing that I have personally witnessed over the years is that ALS typically hits people at the peak of their lives with devastating impact on the individuals and their loved ones.

My personal ALS journey

When I started AssistiveWare my goal was to develop an on-screen keyboard for a friend who had a spinal cord injury after a car accident and needed help accessing his Mac. Soon after that I was contacted by people diagnosed with ALS. Also they were looking for ways to continue to access their Mac even though they could no longer use a mouse or keyboard.

Marie-France

The first person I met with ALS was Marie-France, a mathematician and teacher who lived in Paris. She was one of our first SwitchXS users and an amazing inspiration. When I first visited her she could no longer move her limbs or speak. She used SwitchXS to access her computer with a slight twitch of a cheek muscle and thus was able to go online and take care of the family’s shopping and banking. Until a few years ago, I visited her and her husband once or twice a year in Paris and even got to know her children. In 2012 I attended her funeral after she lost the unfair battle against her disease.

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A pivotal role in the household

Walter

Then there was Walter, a German physician, living in Cologne. He used our KeyStrokes on-screen keyboard to access his Mac and Proloquo to communicate. When I visited him and his wife in November 2005 to work on a short video, he took me along to a meeting at the hospital where he worked. The next day, my wife joined us and we went to a museum in Bonn and to the cinema in Cologne. His drive to continue going out, participating in society and his emphasis on the importance of being able to communicate I still cary with me. Sadly, only three months later I was back in Cologne for his funeral.

Tucker

In 2007, I met Tucker, a sound designer and video editor, living in San Marino, California. When we met he was still in the early stages of ALS. He could speak though his voice wasn’t as strong as it used to be. He could no longer use a keyboard and used a Head Mouse Extreme to control his cursor and KeyStrokes to type and control various editing and audio tools. True to his art he worked at night so we met in the evening and he showed me some of the most amazing computer art I have ever seen. In fact, he told me that drawing and painting was a side of himself that he had discovered after becoming ill. Since that first visit, I have met up with Tucker and his family about once every year and it has been painful to see how each time I came back, ALS had further paralyzed him. The first years he would be out in a wheelchair when I visited, but these days he asks visitors to just join him on the large king-size bed on which he rests in the middle of the living room. He is as witty and brilliant as ever, but so very trapped.

Chuck

After the iPhone came out we started to focus on mobile communication solutions. After Proloquo2Go was released in 2009 it was immediately adopted by several people with ALS, including Chuck. Chuck and his wife continue to make the best of their life together and being able to communicate is a central part of that. People like Chuck were the inspiration for Proloquo4Text, the text-based Augmentative and Alternative Communication (AAC) solution we released in 2013.

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Still enjoying our time together

Our software has and continues to make a major difference in the lives of not just people with ALS/MND, but those with spinal cord injuries, autism, traumatic brain injuries, Down syndrome, cerebral palsy, spinal muscular atrophy, Angelman syndrome and many others. For each of these people and their families communication, whether in person or online, is essential. Communication, as my friend Walter said it so eloquently, “is the central thing”. Communication is the key to the world, the key to express our joys and frustrations. Without effective means to communicate all that we have left is behavior and for people with ALS, who are trapped in their bodies, even behavior is no longer an option.

Communicate with your own voice

Over the years we have worked very closely with Acapela Group, one of the leading providers of Text to Speech voices. A major milestone in our collaboration was the creation of children’s voices for young AAC users. For over 5 years we have been talking on and off with Acapela Group about finding ways to allow people with ALS and others, who are about to lose their voice, to record their own voice for Text to Speech. We are extremely excited that Acapela Group has now pulled it off. Where creating a regular Text to Speech voice costs anywhere from 40 to 100 thousand euros, Acapela has now developed an online system called my-own-voice. With my-own-voice people are able to record their own voice and, if it sounds good, generate a Text to Speech voice from it for less than 2500 euros. This is the first commercial-grade system that supports large-scale creation of personal voices at a very reasonable price, not just in English but already in 9 other languages.

Given our long-term collaboration with Acapela Group and our interest in supporting people with communication challenges we have already integrated support for these personal voices in Proloquo4Text, our text-based AAC app designed for literate individuals. Over the next months we will also add support in our other solutions, including Proloquo2Go and Pictello.

For me personally, this is like a dream come true. Where until recently people with ALS had to either turn to message banking before losing their voice, or use a standard Text to Speech voice, they can now continue to sound like themselves and say anything they want with their own voice. In fact, if you listen to the voices created by some of the beta testers you will hear that the voices really do sound identical to their own.

I never met the French sailor but can’t help but to think that if he had had access to the technology we have available today he would have been able to have more control over his life after being diagnosed with ALS. Perhaps he would have even chosen to record and use his own voice to communicate until the end.