Robert Paulson, A.L.S. long-term. Survivor, died aged 86

He has lived with the condition also known as Lou Gehrig's disease much longer than most and has spread the word, said a admirer, that disability was "just a different way of life. ”

Long after being diagnosed with amyotrophic lateral sclerosis, better known as Lou Gehrig's disease, Robert Paulson published his autobiography. He couldn't move, let alone type, so he created the book in four months from his wheelchair using a text-generating device that uses the eye as a cursor to select letters.

"A million clicks from his eyes," his wife, Maureen Paulson, said in a phone interview. “He has become quite competent in this area.

In his book, "More in Kansas: Memoir of the Farm, New York, and Life with ALS." (2009), Mr. Paulson wrote: “The diagnosis of this disease does not necessarily mean a death sentence.

Later in the book he observed, “Life is everything. And what is the ability to feel, think and communicate? Thanks to today's technologies, A.L.S. I can't take anything from you. »

Mr. Paulson, who spoke through a voice synthesizer, built a public reputation as the face of the ALS. – with his book, with the interviews he gave and with the appearances he made, with his wife, before audiences including students at Sacred Heart University, in Fairfield, Connecticut, and prisoners of Rikers Island. His messages, Ms Paulson said, centered on resilience and coping when "terrible things happen". ". ,'" she added. "That was a great message for the kids to hear."

Mr Paulson spoke in 2018 during a class of Disability Studies taught by Allan B. Goldstein at New York University's Tandon School of Engineering.

"What he brought, c 'is the knowledge that the disability was it's not a tragedy, it's just a different way of living,' Mr. Goldstein said. "And they got it viscerally."

Kailey Blount, who took a literature and disability class at Sacred Heart that Paulson appeared in, said said he helped her cope. with the effects of ulcerative colitis. "At a time when I was frozen by disability," she said via email, "Mr. Paulson paved the way. His brilliant mind, kind heart and worthy soul guided me to a better future."

Mr. Paulson died Aug. 8 at his Manhattan home, his wife said, 30 years after experiencing the first symptoms of the disease from which he eventually succumbed. He was 86.

Thanks to crucial interventions at various times after his diagnosis – including a tracheostomy, a ventilator and a feeding tube – Mr Paulson lived an unusually long period with the disease. The survival time is three years, according to the Association A.L.S., and only 5% of people with the disease live 20 years or more. Physicist Stephen Hawking was an exception: he was diagnosed with ALS at the age of 21 and survived with the disease until his death in 2018, 55 years later.

Robert Edward Paulson was born on June 27, 1937, in his mother's bedroom on the family's wheat, soybean and alfalfa farm in Lindsborg. , Kan., a small town founded by Swedish settlers. His father, Nils, died before Bob was 2 years old. His mother, Ellen (Karlsson) Paulson, who had immigrated from Sweden, took over management of the farm after her husband's death.

"It was my three older brothers and me to make a living growing up," Paulson told the website of Bridging Voice, an organization that helps people with neurodegenerative disorders communicate through training and equipment, in 2021. “My childhood was made up of courage and fierce determination. »

Bob...