Living with ALS ... One Letter at a Time

by Amy Madsen on Wed, 2009-07-01 12:05
Bob Paulson wrote his memoir using an ERICA eye-tracking computer system.

By all accounts, 72-year-old Robert “Bob” Paulson has led an interesting and accomplished life. His is the tale of a Kansas farm boy conquering the Big Apple and creating a beautiful family with whom he’s shared the best life has to offer.

Some might say a diagnosis of ALS in 1996 rendered his good life bad. But Paulson will tell you, using the eye-tracking device that’s become his voice, that’s definitely not the case.

Paulson’s memoir, Not In Kansas Anymore, about life on the farm, in New York City, and with ALS, currently is available online at Amazon, Target, and Barnes and Noble. It was written entirely “by eye,” and is testimony to Paulson’s belief that life with ALS still has plenty to offer.

Bob Paulson, pictured with wife Maureen and the couple’s dog, Opal, wrote his memoir using an ERICA eye-tracking computer system.

From the country to the Big Apple

Born in 1937 and raised on a farm near Lindsborg, Kan., young Paulson milked cows, fed pigs and gathered eggs. He climbed trees, studied by the light of a kerosene lamp, and attended school for his first five years in a one-room schoolhouse. He and his mother sold eggs and cream to pay for his music lessons.

In 1959, Paulson earned a B.S. in nuclear engineering from Kansas State University, went to work for the Atomic Energy Commission and started classes at Georgetown University Law School.

Studying law was “delightful,” Paulson writes, after the math and science of nuclear engineering. He especially enjoyed the “real people with real problems and practical, common-sense (most of the time!) solutions for governing their conduct towards each other.”

Upon graduation in 1963, Paulson hired on with the New York patent law firm Morgan, Finnegan, Durham and Pine, where he would eventually be made a partner and where he remained for more than 40 years.

Paulson met and married Maureen Dowling, and they had three sons. The family bonded over a mutual love of tennis, spring breaks in Florida, and summers in Westhampton Beach on Long Island where they kept a vacation house.

“Those moments with the family on the beach or playing tennis are the fondest of my memories,” Paulson says.

Enter ALS

Around 1995, experiencing unexplained leg and stomach-muscle fatigue, Paulson found himself unable to jump, and stumbling and falling. Walking became increasingly difficult.

ALS was diagnosed in 1996, and Paulson began using a cane and then a wheelchair. An aide helped him shower, dress and get to his office, and another assisted him at work until his retirement in 2003.

Six months later, pneumonia and respiratory failure necessitated an emergency tracheostomy, ventilator and feeding tube, and Paulson spent the next several years getting used to his new life-support equipment. In 2007, he lost his ability to speak, and looked for a new way to communicate.

A technological fix

Paulson’s fondest memories center around his family. He’s pictured here with wife Maureen, sons Luke, Jake and Josh, and daughter-in-law Tammy.

Paulson obtained an ERICA eye-tracking computer system from Eye Response Technologies in 2007.

He wryly notes that he “missed the computer age” and had to learn even the basics of “computer word processing lingo.” His success has convinced him that eye-tracking devices “can be successfully used by anyone [who has] difficulty using their hands or [who] has no speech.”

Eye tracking takes a while to master he says, noting that the most important concerns are proper position of the computer screen, accurate calibration of the camera, and ensuring the device is set up for the user’s strongest eye.

At first he thought of his computer as “a simple communication device,” on which he spent time “slowly typing out rudimentary needs, questions or answers.” He soon learned, however, that it’s “much, much more.”

Paulson’s system allows e-mail communication and Internet access to “news, research, stock market portfolios and, as I did with my book, drafting, saving, editing, sending and receiving documents.”

Now, he says, “I almost have to say that my computer has become my best friend. I interact with it nearly six hours every day. I ask questions and get phenomenal answers. It sends mail to me and delivers my letters anywhere. My computer alone has been largely responsible for giving me a quality of life that makes life definitely worth living.”

Writing and publishing

Around the end of 2007, with prodding from Maureen and friends who had heard his stories about growing up on the farm, Paulson began to organize his thoughts for the book that eventually would become Not in Kansas Anymore.

The writing was relatively easy, Paulson recalls. “I was simply writing down thoughts I had kept in my mind throughout the years.”

At first he wrote about individual events in no special order. After completing about 40 such “vignettes,” he consulted with an editor friend who helped him organize and edit.

Paulson then began collecting pictures, while Maureen put together a team of family members and friends to manage the business end of the publication.

Friends who own a small publishing company recommended self-publishing as the fastest, easiest and least expensive way to proceed. Not in Kansas Anymore eventually was self-published through Gemma B. Publishing of Winnipeg, Manitoba, Canada.

Paulson notes that although most of his team worked “long distance and solely by computer,” they were able to put the final product together “with little difficulty.”

It took about 14 months from the time he first began writing to the finished product. He worked on it “four to six hours most every day.”

Life lessons learned and shared

Paulson encourages readers “to take advantage of any and all opportunities that present themselves, as … no one knows where or how high these building blocks will take us.”

As he has learned, and as he shares with his readers through his memoirs, “A diagnosis of ALS need not be a death sentence. With the technology available today, mobility and communication are virtually unimpeded, even for those on life-support ventilators. I say that, at its core, life is the ability to understand and communicate, and ALS leaves those abilities intact.

“I have no use of my hands, arms or legs and cannot speak. But I understand as fully as ever, and with my computer I can communicate as well as the next person.

“Life is good.”

Amy Madsen
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