6 minute read
LIFE ON WHEELS
FOR KOULOURAS, THERE IS NO RETREAT, NO SURRENDER IN FACE OF ALS DIAGNOSIS
Written by: DOUG HENSLEY
Initially, the changes were subtle, slowly creeping into his life, but Spero Koulouras knew something was going on with his body.
“I was coaching softball, hitting balls to players,” he recalled. “These 16- and 17-year-olds were very competitive young ladies. They kept asking me to hit the ball harder, and I was thinking to myself, ‘Something’s wrong; that’s all I’ve got.’ I was losing pop off the bat and zip on my throws. Those were the earliest indicators.”
As it turned out, those were only the first of many abilities that would be taken away from Koulouras, a former Silicon Valley engineering executive. Four years ago, his worst suspicions were confirmed when he was diagnosed with amyotrophic lateral sclerosis (ALS), more commonly known as Lou Gehrig’s disease. ALS attacks the nervous system and gets progressively worse over time. There is no cure.
“The type of ALS I have starts in the hands and works its way through the arms,” he explained. “It is documented as a slow-progressing variant. The diagnosing physician had done a study and written a paper about this particular variant in 1999. His prognosis of five to seven years made me reevaluate my priorities.”
In 1982, during his senior year of computer engineering at Michigan, Koulouras developed hardware and software allowing users with disabilities to type on an Apple II computer. Unfortunately, this effort was abandoned when he embarked on a successful professional career that started with a 14-year stint at Hewlett-Packard, the one-time sprawling information technology company headquartered in Palo Alto, California.
He rose through the engineering ranks earning an international assignment, helped develop global telecom standards and led the advanced research and development team in the company’s Telecom Business Unit. After leaving Hewlett-Packard, he continued to enjoy success working with a variety of start-ups and other business ventures over the next 20 years, including deploying millions of custom wireless phones, developing a smart home patent, solar energy modeling, running a vineyard property in Sonoma and developing artificial intelligence--driven camera systems for sports events.
“It has been a varied career, but I always loved leading technology teams,” he said.
During the past four years, ALS has attacked his motor skills, but the disease has not eroded his zest for life or his wonder for discovery. He has simple advice for anyone who might find themselves in a situation like his.
“Go watch ‘Thelma and Louise,’” he says, referring to the 1991 movie featuring two women determined to set out for adventure. “My time left is too short for bureaucracy and waiting on hold. I’ll go off the cliff at 100 mph, not gently into the good night.”
Koulouras meets ALS on his own terms, meaning he stays active and engaged in life as fully as he is able.
“It has an impact on my day-to-day life,” he said matter of factly. “I don’t run around like I used to, but my brain still works, and I am trying as hard as I can every day. I don’t really have the need to motivate myself. I have a lot of projects in the works, and there are a lot of things I want to do.”
It is those projects that keep Koulouras on the move, regardless of physical limitations.
Several of the projects he is involved with are intended to help improve the lives of ALS patients. He has started a company, Autonomous Living Technologies (www.auli.tech), that is working to develop assistive devices at an affordable price point. He founded the company about a year ago with University of California San Diego physics and math students Finn Biggs and Michael Fierro.
“In my world now, where I don’t have the use of my hands, I need a new way to control things like a computer mouse, a television or other things that people with the use of their hands take for granted,” he said. “When I was first diagnosed, I looked around at the different technologies available, like eye-gaze, I was dissatisfied. They were expensive or not very elegant.”
With a robust technological background in AI and robotics, Koulouras went to work with the team and quickly developed a small device that allowed him a greater degree of freedom. The product, named Cato, was first publicly demonstrated in New Orleans at the RESNA Conference and is now in beta testing. It is available at no cost to occupational therapists working with patients with hand and upper limb disorders by e-mailing info@auli.tech
“Now, with very simple movements of my head, Cato can read my gestures, and I have the ability to control my world,” he said.
Putting the effort into coming up with new solutions keeps Koulouras’ attention focused and gives him personal satisfaction in other ways.
“I have always thought of myself as someone who is interested in giving back,” he said. “That has always been a personal value, but this is a chance to make it real, and to finish the job I started 40 years ago. It has become a real chance to take everything I have learned and actually do something that can make a difference.”
There are still other ALS-driven everyday realities Koulouras is seeking to address.
“My biggest daily challenges are transfers and feeding,” he said. “My wife dresses, moves and feeds me every meal. She is great, and I couldn’t live without her, but she needs a break from time to time.”
He is testing an overhead track system controllable by Cato. For now, feeding-assistance devices are few, costly and not always effective.
“The existing devices are a great first step, but they don’t have cameras, and they have a small range of motion,” he said. “We’re working on a device that uses cameras and sensors to do a better job of locating food and locating your mouth, both of which are important.”
Koulouras said his focus is on devices, research and lobbying that will have an immediate positive impact on those dealing with ALS.
“Anything I can do to raise awareness or help in any way to fight this disease, that’s what I’m going to do,” he said. “The ALS Association, especially my local Sacramento chapter, has been an amazing support resource. I hope adding my voice to their advocacy efforts can help. Another key player in the ALS struggle is Team Gleason. Their slogan ‘No White Flags’ is stenciled in my doorway.”
That is how he makes every day great.
CONTACT
Spero may be reached at SPERO@AULI.TECH
