Patent Lawyer Who Lived With ALS for Decades

Long after being diagnosed with amyotrophic lateral sclerosis, better known as Lou Gehrig’s disease, Robert Paulson published his autobiography. He could not move by then, much less type, so he created the book in four months from his wheelchair by employing a text-generated device that uses the eye as a cursor to select letters.

“A million clicks of his eye,” his wife said. “He got pretty proficient at it.”

In his book, “Not in Kansas Anymore: A memoir of the Farm, New York City and Life with A.L.S. (2009), Mr. Paulson wrote, “The diagnosis of this disease need not be a death sentence.”

Later in the book, he observed: “Life is everything. And what is it but the ability to feel, think and communicate? Thanks to today’s technologies, A.L.S. alone can’t take any of those from you.”

FAMILY BACKGROUND

Robert Paulson (RP) was born in his mother’s bedroom on his family’s wheat, soybean and alfalfa farm in a small city in Kansas. His father died before RP turned 2. His mother, who had immigrated from Sweden, took over the running of the farm after her husband’s death.

“It was up to my three older brothers and me to scratch out a living as we grew up,” RP said. “My childhood was all grit and dogged determination.”

EDUCATION

RP hated farming, so he followed the example of his brother Arnold, a nuclear engineer: He studied nuclear engineering at Kansas State University, graduating with a Bachelor’s degree. The coach of his debate team there suggested that, given RP’s ability to deliver an argument, he would make a good lawyer.

While hired to work on classified matters for the U.S. Atomic Energy Commission as his day job, RP attended Georgetown Law School at night, eventually earning his law degree (now awarded as a J.D. – Juris Doctor – in recognition of completing three years of graduate level education after college.)

CAREER PATH ADAPTED TO PHYSICAL CHALLENGES

With his background in the science of engineering, RP concluded he was best suited to focus his law practice on issues involving intellectual property, specifically patents. 

Editor: A patent is a government authority or license conferring a right or title for a set period (usually at least 20 years), especially the sole right to exclude others from making, using or selling an invention. Once obtained, the patent owner has the legal right to exclude others from making, using or selling an invention for a limited period of time. Under the World Trade Organization (WTO) TRIPS agreement, a patent is available for any invention, in all fields of technology, provided the application is new, involves an inventive step and is capable of industrial application. 

“My life as an attorney, before A.L.S., entailed standup up and speaking in federal court,” said RP. “I used my voice in every part of the law.” He also sang in opera workshops, glee clubs and church choirs. 

But RP’s ability to stand, speak and sing began to erode about 30 years before he died, as his fingers, arms, legs and stomach muscles weakened. He went from using a cane to a walker and eventually to a wheelchair. For the first five years following his disease diagnosis, RP continued to work as a law partner in an intellectual property law firm in New York city. He retired from the firm when he could no longer use his limbs and keep up with the billing requirements of any law firm partner or associate (aspiring partner). 

Five years after being confined to a wheelchair, RP developed pneumonia, leading to the failure of his lungs, requiring a tracheotomy and breathing and feeding tubes. “I can do this; I’m already in a wheelchair,” recalled RP of his reaction to the latest change in the state of his health.

Over the next 20 years, with help from his wife and 3 sons and friends, RP continued to adjust how he accomplished his tasks involved in representing clients seeking patent approval from the U.S. government. 

He started his own patent law firm with a client list that included the U.S. Chamber of Commerce, wrote his autobiography and compiled a synopsis of more than 200 decisions in trademark and copyright law from 2013 to 2020. 

RP’s wife said that despite his condition, her husband retained a largely positive disposition. “He was willing to face the day. He’d wake up, maybe you’d see a few tears in his eyes, but he’d charge ahead. I’d get him in the wheelchair and off we’d go.”

Editor: The average survival time following a diagnosis of A.L.S. is three years, according to the A.L.S. Association, and only 5 percent of people with the disease live 20 years or longer. The physicist Stephan Hawking, like RP, was an ‘outlier.’ Hawking was diagnosed with A.L.S. at age 21, surviving with it until his death 55 years later. 

All praise and honors are due A.L.S. patients who decide to forge ahead, not knowing their future physical path while they pursue their chosen career path. 

CAREER SATISFACTION

After RP spoke to a disabilities studies course taught by Allan Goldstein at the New York University Tandon School of Engineering, Professor Goldstein said, “What he brought was the knowledge that disability was not a tragedy, that it’s just a different way of living. The students understood that viscerally.”

A student who attended a disability and literature class at a college where RP spoke to her, said that he had helped her cope with the effects of ulcerative colitis. “In a time where I was frozen by disability, Mr. Paulson lit a path forward. His brilliant mind, kind heart and dignified soul guided me towards a brighter future.”

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This career story is based on an obituary written by Richard Sandomir, published by The New York Times on August 27, 2023 plus internet research.