MDA/ALS July magazine article

Living with ALS... One Letter at a Time

by Amy Labbe

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.

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.”

Another Article in the Lindsborg News

MAY IS ALS AWARENESS MONTH

Tomorrow begins the 18th annual ALS Awareness Month. As part of MDA's nationwide outreach efforts to educate the public about the disease, we have launched “ALS: Anyone's Life Story,” an online series featuring individuals with ALS. This week's features:

May 1 - Brig. General Thomas Mikolajcik, Charleston, SC  May 2 - Loren Dils, Albuquerque, NM  May 3 - Robert Paulson, New York, NY  May 4 - Phil Kelleher, Cherry Valley, CA  May 5 - Laura Woodall, Davidson, NC  May 6 - Alex Grausnick. Shoreview, MN May 7 - Scott Lew, Van Nuys, CA May 8 - Patrick Guide, Channelview, TX  May 9 - Robert Murray, Bethel, CT  May 10 - Susan Fox, Kansas City, MO

NOT IN KANSAS WINS BESTSELLERS IN WINNIPEG

ADDRESSING THE ILLEGAL IMMIGRANT ISSUE

Robert E. Paulson
April 11, 2009


The following thoughts on the issue of illegal immigration were first written in December, 2007. Nothing has changed since then. The issue was never raised during the campaign and, as of April 10, 2009. has not been mentioned by Congress or President Obama. All the following ideas and proposals remain valid today. 


In addition, I do not believe the country can effectively deal with the proposal for a national health care program before resolving the illegal immigrant program. The numbers are said to be 37 million Americans without health insurance and from 12-20 million illegal immigrants who obviously also are without health insurance of any kind. So, as the following discussion points out, there are up to 57 million people in the USA who must pay cash for doctor visits and/or rely on emergency room health care and pay nominal amounts for such services while the insured population pays exorbitant rates and are charged exorbitant prices to make up for the nominal payments received from the uninsured population. 


It would seem any national health insurance program must be tied to the SS # --the proposed IEI SS # would include the approximately 20 million illegal immigrants who would also contribute to the costs of national health insurance.

No Presidential candidate has put forth a comprehensive position paper on the issues /problems relating to illegal immigrants. The recent 2007 proposal in New York to issue driver's licenses to illegal immigrants is just the "tip of the iceberg" regarding the much larger question of how local authorities are to deal with illegal immigrants in the absence of federal enforcement of federal laws against this huge population. 

       

Today, with few exceptions, there is, in effect, a "don't ask, don't tell" federal policy concerning illegal immigrants. As a result, there exists the following inconsistent practices and anomalies at both the local and national levels: 
        

1)  city and state police make no attempt to determine citizenship status of obvious groups of immigrants, such as day workers gathered on street corners, construction sites, landscapers, restaurant workers, farm and factory workers, etc. ; 
         

2)  landlords renting to foreign language speaking tenants without any citizenship reporting responsibility; 
         

3)  national banks taking deposits of cash and issuing debit cards without citizenship proof and no reporting requirements to the IRS or federal immigration authorities; 
      

4)  hospital emergency rooms providing medical care free or at nominal cost without citizenship proof or any reporting requirement to federal immigration; 
        

5)  the use of fake social security numbers (which acts to the detriment of the illegal immigrant since monies are paid in by the employer but benefits are never paid out);  
       

6)  businesses wiring money out of the country without determination of the legal status of the person providing the cash or any reporting to any federal authority. 
       
       
These few anecdotal examples evidence the continued erosion of any distinction between legal and illegal immigrants or, for that matter, between illegal immigrants and American citizens. The near-absolute failure of the Government to actively enforce existing federal laws against illegal immigrants also raises a significant security issue regarding terrorist cells --local, state and federal authorities have no idea who is living "under the radar" in this country --the estimates range from 12-20 million. 

       
What to do with this "underground economy" and national security risk? How long can this growing illegal population be ignored or debated without resolution? Is it realistic to think these millions of illegals can be rounded up and deported and, if so, who is going to take care of their millions of children who remain American citizens by virtue of their birth in this country? In fact, the overwhelming majority of these illegals are gainfully employed and actually ARE NEEDED to support our growing economy in the face of dwindling numbers of native-born Americans entering the workforce (as in Europe and China, whether or not enforced by Government edit, the fact is that low birth rates in both the "Western world" and China have resulted in shortages of workers in those economies). 

        

One cannot answer the question regarding driver's licenses for illegal immigrants, or implementing national health insurance, without answering all the other questions posed by this population and resolving the inconsistent practices across the country regarding these immigrants. 


A NEW FEDERAL POLICY /LEGISLATION DIRECTED TO ILLEGAL IMMIGRANTS (INCLUDING EXPIRED VISA ENTRANTS) MUST INCLUDE THE FOLLOWING POINTS:

1)  A TIGHT, NEAR-PERFECT PHYSICAL AND TECHNOLOGICAL BARRIER FOR BORDER CONTROL BACKED UP WITH HEAVY BORDER ENFORCEMENT PERSONNEL;
       
2)  ALL ILLEGAL ENTRY IMMIGRANTS (INCLUDING IMMIGRANTS WITH EXPIRED VISAS) ARE GIVEN A PERIOD OF TIME CERTAIN, BETWEEN 9 AND 15 MONTHS, TO "TURN THEMSELVES IN" BY APPLYING FOR A SPECIAL SOCIAL SECURITY CARD NUMBER BEGINNING WITH THE LETTERS "IEI" (ILLEGAL ENTRY IMMIGRANT). THE DATE OF ISSUANCE OF THE IEI S.S. # PLACES THE ILLEGAL IMMIGRANT BEHIND THE LAST PERSON APPLYING LEGALLY FOR ENTRANCE TO THE U.S. FROM THE COUNTRY OF ORIGIN OF THE ILLEGAL ENTRANT;

3) THE IEI S.S. # APPLICATION SHOULD INCLUDE AT LEAST NAME, PASSPORT-STYLE PHOTOGRAPH, CURRENT ADDRESS, TELEPHONE AND CELL PHONE NUMBERS, EMAIL ADDRESS, LAST ADDRESS IN COUNTRY OF ORIGIN, ADDRESSES OF NEAREST RELATIVE IN U.S. AND IN COUNTRY OF ORIGIN , NAME AND ADDRESS OF CURRENT EMPLOYER AND NAME OF PERSONNEL OFFICER IF EMPLOYER IS OTHER THAN AN INDIVIDUAL; 
      
4) APPLICATION FORMS SHOULD BE PROVIDED IN ALL POST OFFICES, POLICE PRECINCTS, BANKS, BUILDING LOBBIES, SCHOOLS, ETC. THE VARIOUS DMV OFFICES THROUGHOUT THE VARIOUS STATES
ALSO COULD SUPPLY THE IEI SS # APPLICATIONS AND WOULD BE CONVENIENT FOR SUPPLYING THE NECESSARY PHOTO. THE APPLICATION FORM ALSO WOULD BE AVAILABLE ONLINE FOR DOWNLOADING.

5) THE DEPARTMENT OF HOMELAND SECURITY ALREADY HAS IN PLACE A PILOT PROGRAM FOR CHECKING SS ## ELECTRONICALLY. IT WOULD BE A SIMPLE MATTER TO INCLUDE THE IEI SS ## IN THIS SYSTEM., CALLED "E-VERIFY."

6)  FOLLOWING EXPIRATION OF THE IEI GRACE PERIOD, ALL EMPLOYERS MUST OBTAIN THE S.S. # OR AN IEI S.S. #  FOR ALL EMPLOYEES OR FACE A MANDATORY FINE OF $10,000 FOR EACH EMPLOYEE NOT SO DOCUMENTED, THEREBY ENSURING WITHHOLDING OF TAXES AND PAYMENTS FOR SOCIAL SECURITY BENEFITS AND NATIONAL HEALTH INSURANCE;

7)  FOLLOWING EXPIRATION OF THE IEI GRACE PERIOD, NO NEW ILLEGAL ENTRANT WILL BE PERMITTED TO APPLY FOR THE IEI S.S. CARD BUT, INSTEAD, SHALL BE IMMEDIATELY DEPORTED;

8)  FOLLOWING EXPIRATION OF THE IEI GRACE PERIOD, ALL LANDLORDS MUST OBTAIN THE S.S. # OR IEI S.S. # OF ALL TENANTS OR FACE A MANDATORY FINE OF $10,000 FOR EACH HOH (Head of Household )TENANT NOT SO DOCUMENTED; 

9)  FOLLOWING EXPIRATION OF THE IEI GRACE PERIOD, CITY AND STATE OFFICIALS SHALL HAVE THE AUTHORITY AND OBLIGATION TO SEEK IDENTIFICATION AND, SPECIFICALLY, THE S.S. # OR IEI S.S. # OF ANY PERSON SEEN LOITERING, INVOLVED IN ANY INFRACTION OF LAW, CRIMINAL ACTIVITY OR REASONABLE SUSPICION OF SAME, AND ANY PERSON UNABLE TO PROPERLY DOCUMENT HIS OR HER ENTRANCE INTO THIS COUNTRY SHALL BE REPORTED TO FEDERAL IMMIGRANTION AUTHORITIES FOR DEPORTATION;


10)  ANY IEI CONVICTED OF A CRIME MORE SERIOUS THAN A MISDEMEANOR SHALL BE IMMEDIATELY DEPORTED, WITH CANCELLATION OF THE IEI NUMBER AND NO ELGIBILITY TO REAPPLY;


11)  THE IEI S.S. # MUST BE RENEWED EVERY 3 YEARS (5 YEARS?) UPDATING ALL ORIGINAL INFORMATION, INCLUDING CURRENT PHOTOGRAPH, AND IDENTIFYING THE CURRENT EMPLOYER AND ANY PREVIOUS EMPLOYERS, WITH PROOF OF ALL TAX RETURNS FILED OR REASON IF NOT FILED;

12)  UPON COMPLIANCE WITH ALL RULES GOVERNING IEI STATUS FOR A TOTAL OF 15 YEARS, THE IEI IMMIGRANT SHALL BE ELGIBILE TO APPLY FOR GREEN CARD STATUS, PROVIDED NO PERSON FROM THE IEI'S COUNTRY OF ORIGIN APPLYING LEGALLY FOR ENTRY AHEAD OF THE IEI IS WAITING FOR DISPOSITION OF SUCH APPLICAT ION. THEREAFTER, APPLICATION FOR CITIZENSHIP SHALL FOLLOW CURRENT PROCEDURES FOLLOWING ISSUANCE OF GREEN CARD;


13)  IN THE EVENT ANY IEI LEAVES THE COUNTRY WITHOUT COMPLETING THE FOREGOING PATH TO CITIZENSHIP, SUCH PERSON SHALL BE ENTITLED TO RECEIVE WHATEVER BENEFITS WOULD HAVE BEEN AVAILABLE FOR THE PERIOD OF TIME WORKED IN THE U.S.  HAD THAT PERSON REMAINED IN THE COUNTRY.
 

14) FURTHER FINE-TUNING OF THE IEI SS REGISTRATION SYSTEM MIGHT STRETCH OUT THE RENEWAL DATES TO THE 3RD, 6TH, 10TH AND 15TH YEARS. ALSO, THERE MIGHT BE A POINT SYSTEM TO ENCOURAGE SCHOOLWORK, PROVIDING CREDIT TIME TOWARDS CITIZENSHIP FOR THOSE IEIs WHO DEMONSTRATE PROFICIENCY IN ENGLISH, OR CERTIFICATES FROM TRADE SCHOOLS, OR OTHER EDUCATIONAL OR SPECIAL TRAINING CREDITS. THE MAXIMUM TIME OFF THE PATH TO CITIZENSHIP BASED ON EDUCATIONAL CREDITS SHOULD BE FIVE YEARS.


The foregoing rules /requirements are intended to encourage registration of the vast majority of illegal immigrants now in the country and to discourage employers and landlords from not rigorously complying with immigration regulations. 
        Strengthening border controls will significantly reduce the numbers of new illegal immigrants, permitting the Government to get a "handle" on the identity of illegal immigrants now in the country. There is no requirement that illegal immigrants leave the country en masse, since, as a matter of fact, they are needed to fill the gap in the country's dwindling native-born workforce. 
       

These proposed regulations are directed primarily to unskilled immigrants who have entered the country by stealth seeking only to improve their life and those of their families. Skilled and /or educated immigrant applicants, such as scientists, engineers, doctors, nurses, medical and computer technicians, are given immigration priority status and need not resort to illegal entrance. (Inexplicably, the federal immigration service is stringently enforcing immigration laws against this group of skilled workers --so this group comes to our schools, become highly educated and skilled, and then are forced to go home)

With registration of IEI immigrants, and their identity, location and origins known, there no longer should be any reason not to allow this population to receive IEI driver's licenses, if otherwise qualified. 
        The minimum 20+ year wait for full citizenship, after an unblemished record of compliance with U.S. laws, immigration regulations and payment of taxes, should be ample basis to admit this population as our fellow citizens in a country built on immigrants.

CANADA BOOK EVENT

LETTER written by lucy greenberg a dear friend

To all my friends and family:

I feel both privileged and humbled to be writing to you on behalf of my dear friend, Bob Paulson and this extraordinary book he wrote with the eyes of an advanced ALS "survivor" and the heart of a giant.

My family had the good fortune of meeting Bob, his wife Maureen, and their 3 sons, when their youngest started kindergarten with Ned in 1987. The relationship rapidly transmuted from play date exchanges to one of mutually shared joys, challenges and celebrations. We grew to a gang of 8 parents, all of whom had boys in the class of '00; and that group quickly coalesced as the days rolled into months and years. The Paulson boys are among the kindest, brightest and most musically talented I've had the pleasure to know.

And then there is Bob.
His background as a child in a large family living on and working the land in a small rural Kansas setting was diametrically opposed to the rest of us, who shared a more suburban, NY area childhood. As it turned out, his varied experience served to make him all the more intriguing. Farm boy... part-time musician and actor...nuclear engineer and ultimately intellectual property attorney. We felt almost provincial in comparison!! But it is Bob's music that ultimately set in stone relationships that became the bedrock of our existences.

A highlight of the year was the Paulson Christmas party where he held the room with his piano and his enormously amassed range of songs. We gathered around that piano; we listened, we sang along, and the world was in perfect harmony. When one of their boys joined in with their chosen musical instruments, it was icing on the festively decorated cake! There were Christmas parties going on all over NY; in offices, restaurants, and party spaces, but none were as pure and joyful as those memorable evenings. For one magical night a year, a lot of Jewish NY'ers were transformed into revelers of the first order. And when Bob and Maureen joined our family Bar and Bat Mitzvahs, they sang the loudest and danced the "hora" with gusto!

A most tender and memorable gathering occurred around the Bat Mitzvah celebration, in Israel, of Dani Goldstein. We were beyond fortunate to be included in her Torah readings, with The Dead Sea as the background, in a 10 day journey as V.I.P. tourists in that most beautiful and remarkable country. Bob was just beginning to show some muscle weakness in his legs preventing him from the archaeological digs and trip to Masada, but he soldiered on whenever possible. No one could have imagined what was to come. In hindsight, it feels as though that trip and the months that followed were, unbeknownst to us; a seminal moment in our glory days.

Bob was soon diagnosed with ALS and the insidious disease took hold with no mercy. As his conditioned worsened, it became necessary for Maureen and Jake (the older 2 boys already away at school) to help in every aspect of his life. They accompanied him to work, wheelchair in tow, for years; until work was no longer viable .Maureen, to this day, gives Bob his very life; she is a woman beyond compare. From the smallest trivial tasks of grooming and eating, to his continued socializing in restaurants and theatres, their days are long and arduous, but never does one hear a complaint. Never. And we are so blessed by their determination, to continue, for lo these many years, an unbroken chain of social intimacy.

We've lost our Christmas extravaganza but life has gone on as we have all adjusted to Bob's increasing limitations. This man's mental and physical endurance are unmatched. Bob considers himself blessed by family and friends and the circuitous twists and turns of a life well lived. For the rest of us comes the greatest blessing of all. He, along with his family's resolve, has inspired us in ways we could never have imagined.

I now reach out to you, my friends and family, to get to know the man and his story in a book you are unlikely to read the equal of. Much of the proceeds of "Not In Kansas Anymore" will go toward the enormous expenses involved in keeping Bob at home, a decision that some may have questioned but all have come to regard with admiration and validation. I urge you to partake of this book so that you can come to know this man among men that we have been privileged to.