LI FE O N WHE E LS
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.
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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
