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.

IMMIGRATION And EDUCATION

Maureen, The Times ran an article this weekend on the problems of educating immigrant kids with no English, and that separate classes teaching immigrant kids in their native languages ( "a school within a school") are counterproductive, since the immigrants are isolated from homegrown kids and feel that much more stigmatized by their culture, dress, ethnicity, etc.


I have a solution. The details would need to be worked out for individual situations.

I propose adding a half hour -45 minute period each school day for a workshop strictly on English that would be operated by the older kids, preferably one-on-one. The older kids would be either homegrown kids or other immigrants who have become reasonably proficient in basic English. In general, 6 graders would work with first graders; 7 graders with 2nd graders etc to 12th graders working with 6th graders. The work sessions would be simple --merely going over the day's work covered by the teacher that day.

I have found that each child masters a particular task in his or her own way, learning memory shortcuts or techniques for learning that often come from a different perspective than the adult teacher. Secondly, for the younger student, merely trying to explain to the older student what the day's lesson covered would be a reinforcing learning step. Thus, each work session would start with the question: "Okay, what did you guys go over today?" "Okay.show me your workbook and what you did, or show me the pages in the text you were assigned.' The conversation will flow from this point on, and shortly will extend to sports, TV shows, favorite music, family, chores at home, etc. All of this is good --the young will ask, "how do you say . . . ." and the older will say, "No, this is how you say , . . . or, this is how you write . . "

The work sessions will be productive even if nothing academic is accomplished --they will inevitably create a form of bonding between the students , if nothing elseUsing older, largely home-grown students to tutor/mentor young immigrant children will, inevitably, ease the social -ethnic-cultural barriers, no matter what else is accomplished by the conversation between the two students. Surely, however, the young students' grasp of English undoubtedly will be improved.

Without question, the better one's grasp of English in America, the better the potential for an improved level of employment and living standard. In my experience, no matter the level of intelligence, without an immersion in the English language and its grammatical rules at an early age, a foreign-born person will never be able to write or speak English effectively. The program I propose will inevitably close this gap in English usage between foreign-born and American-born children.

Establishing my proposed "one-on-one" student program will likely require some incentive for the older student. That incentive may vary from one student body to another. It could range from an outright payment of money from the school budget (comparable to babysitting pay); college or vocational school tuition credit at any in-state post-high school educational program --perhaps at the rate $1000-1500 /year up to a total of $ 6000-9000 for the hypothetical six years a student could partake in the program (i.e.,from grade 6 through grade 12); special recognition at junior high and high school graduation ceremonies, or at sports performance recognition events; college credits in basic English course(es); etc.

The one-on-one sessions could be instituted at each school on a trial basis, perhaps scheduled only twice a week, and then evaluated after a month or two to determine the respective students' views. Or, the sessions could be twice a week for grades 1-3 and three times a week for grades 4-6.

Another possible option would be start the program much later, beginning with the seventh grade --i.e., 10 graders on 7th grade, 11 on 8 and 12 on 9th graders. However,this may be too late from the standpoint of both assimilation and gaining an early foundation in basic English. The premise of my one-on-one program is that the foreign-born student will have enough foundation in English by the end of the sixth grade to move forward on his or her own. Also, i believe the youger the better with regard to both a willingness on the part of both students to cooperate in the learning process and also with regard to a less likehood of an ingrained prejudice by either child against the other.


Bob Paulson
525 East 86th Street
New York, New York 10028
bobpaulson@rcn.com

Energy Policy for America

The following paper is a proposal submitted by A.E. (Jake) Paulson to Democracy for America (DFA) on February 15, 2009, as a possible energy policy for that organization. It has not been endorsed by the DFA as of this date.

The Paulson energy proposal notes that the problem of what to do with spent-fuel assemblies has been solved by a recently published reprocessing technique that does not produce pure plutonium, and therefore does not violate the ban on nuclear proliferation. This advance will permit reprocessing of the approximately 100,000 spent-fuel assemblies currently sitting under water all around the country. Each of these fuel assemblies contains approximately 30% of the original fuel unused. Reprocessing of current and future fuel assemblies would eliminate the Mt Yucca storage issues.

The beauty of fission energy is its ZERO carbon emission and the ability to run at constant "baseload" capacity, producing electricity for commercial/business needs by day and to charge battery-driven cars at night for urban/suburban travel, also with ZERO carbon emission.

Energy Policy for America
by Democracy for America (DFA)
(updated 2-15-09)
Thesis: The DFA proposes a 10 year energy program that will establish the path to energy independence for the USA.

Proposed Program:
Build 150 1000 Mwe or greater fission powered electrical generation units using current advanced light water reactor technology.

Benefits:
Proposed program will:
Provide for 50% electric power generation from fission power (zero CO2 emissions),
Dramatically reduce CO2 emissions by phasing in fission power and phasing out older coal fueled electrical power units,
Provide for use of electric cars for urban travel,
Provide thousands of high paying jobs, establish the USA as the leader in fission technology, and keep our economy growing at a 3 to 5%/year!

Implementation of Program:
Congress must pass legislation that provides for the
following items:
The program is in the National Interest,
Construction permits, when approved, must be final and unit construction can proceed without interruption,
Government incentives shall be provided to the extent that all major utilities will agree to the program and promise to immediately start the construction permit process (unless they have already done so).

Utilization of Discharged Fuel Assemblies:
Recommended Solution:
Request President Obama to rescind the executive order that bans commercial reprocessing of discharged fuel assemblies in the USA,
Provide legislation that promotes and permits the reprocessing of spent fuel assemblies and provides assurance that the granting of reprocessing licenses is under Federal jurisdiction,
Note: The 100,000 plus discharged fuel assemblies have enough fissionable isotopes to provide the initial reactor core fueling for all 150 units if only we would reprocess and recycle this energy source!
Building three to four reprocessing plants that use the COEX processs. COEX provides for Uranium-Plutonium mix that is turned into MOX fuel for use in LWRs. COEX meets the nonproliferation requirements of GNEP by not producing pure separated plutonium. Adopting COEX would reduce or eliminate the need for the Mt. Yucca storage unit.

Discussion: Democracy for America has a golden opportunity to enhance the expanded use of fission power. It would give America a plan to achieve
Energy Independence in our lifetime – the program will find many Republicans ready to join this program making it a bi-partisan program.
AE Jake Paulson, BSNE KSU 1957
President PIMS, Inc.
434-385-9085
e-mail address = pims@pimsva.com

Fission Energy vs. Fossil Fuel

Some Salient Background Facts
Re: Fission Energy vs. Fossil Fuel
vs. Alternative Non-CO2 Energy Sources


General Information

1. Today, electricity in the US is produced from the following sources:
· 20% fission energy
· 50% burning coal (fossil fuel)
· 20% burning natural gas (fossil fuel)
· 6.5% hydroelectric
· 0.5% wind and solar power
· 3% burning oil (fossil fuel)

2. Except for wind-driven turbines, solar electricity provided by photovoltaic cells and hydroelectric dams, electricity is generated by creating heat, turning water to steam, which drives giant, magnetized turbines which generate electricity.

3. In the case of a fission reactor, uranium pellets (typically including the radioactive isotope U-235 enriched to a concentration of 3-5%), encased in fuel rods, undergo a controlled chain reaction in the core, releasing energy in the form of heat, which turns pressurized water into pressurized steam, and the steam drives the turbines to generate electricity.

4. All fossil fuels emit carbon dioxide when burned to create heat; the fission reaction does not.

Fission Energy

1. Today, there are 103 active nuclear reactor power plants in the US – supplying 20% of the nation’s electricity. In addition, there are 337 working reactors producing electricity in 30 countries outside the US. France obtains 78% of its electricity from fission power plants (59). The other leading nuclear powered electricity generating countries are: Japan (55); Russia (31); UK (23); South Korea(20); Canada (18); Ukraine (15); India (15); and China (10).

2. Worldwide, an additional 27 new fission power plants are under construction, another 38 are in the planning stage and another 115 are proposed. Of these plants, it is notable that India proposes 24 new reactor plants, China proposes 19 and South Africa 24.

3. Today, before construction of a nuclear power plant can even begin in the US, three certifications are required from the Nuclear Regulatory Commission (NRC): a site permit; an approved reactor design; and a construction/operating license. Such an application can involve up to 30,000 pages of drawings, calculations, environmental studies, seismology studies, etc.; the review process alone consumes approximately three years.

4. Safer, less complicated, cheaper designs for fission energy power plants are evolving from Westinghouse, GE, the French-German company Areva, and others. The NRC should approve/standardize 6-10 designs for 1000 Mwe and/or 1500 Mwe (“base load”) output – with the goal of reducing the regulatory process time to 1 year (for previously certified designs); construction time to 5 years and cost to no more than $2-3 Billion, respectively.

5. The main safety features of most reactors are inherent - negative temperature coefficient and negative void coefficient. The first means that beyond an optimal level, as the temperature increases the efficiency of the reaction decreases (this in fact is used to control power levels in some new designs). The second means that if any steam has formed in the cooling water there is a decrease in moderating effect so that fewer neutrons are able to cause fission and the reaction slows down automatically.

6. 18-27 new permits for fission powered electric utility plants are now pending before the NRC – most are near existing reactor sites. If the foregoing goals were adopted (i.e., legislated by Congress), at least 25 new fission power plants should be operating by 2020. An additional 50 new plants should be brought online by 2030 and another 75 new fission reactor plants by 2040. Combined with the current 100+ fission power plants (refurbished and re-licensed), the country realistically could anticipate fission energy providing 50% of its electrical power needs by the year 2040.

7. Between global warming, largely caused by burning fossil fuels, and US dependence on unstable/unfriendly foreign oil supplies (e.g., Mid-East and Venezuela), the economics of fission energy can no longer be treated as an obstacle. If necessary, construction must be subsidized by the federal government – in particular, the construction of the critically needed spent - fuel reprocessing and recycling plants for recovering fission fuel.

Fossil Fuel

1. Today, the US produces carbon dioxide emissions that are 50% greater than that of any other country; these emissions are a major contributor to global warming. In 2002, the US, China, Russia,Japan, India and Germany emitted some 3.9 billion metric tons of carbon into the atmosphere. Carbon emissions from these countries have continued to rise each year since 2002.

2. If the world is to avoid potentially devastating climate changes, it must stop the current upward trajectory of greenhouse gas emissions within the next 10-20 years.

Alternative Non-Carbon Dioxide Energy

1. Wind, solar and hydrogen fuel cell technologies are not practical/not developed/not proven for large-scale production of electricity in the near-term, i.e., in the next 10-20 years.

2. For example, a recent proposal to build 40 wind-turbine generators off Long Island’s south shore in a grid covering 8 miles, each windmill being 440 feet high (the Washington monument is 550 feet) would produce only enough electricity for 44,000 homes - at a proposed construction cost of $400 Million. By contrast, a 1,000 Mwe fission power reactor produces electric power for 1 million homes at a construction cost of $2-3 Billion.

3. For another example, today, ethanol accounts for 5% of automobile fuel in the US, and yet, to achieve this meager reduction in gasoline usage, the country is already diverting some 25% of its current corn production away from animal and human food consumption. Considering the amount of fossil fuel burned in planting, cultivating, harvesting, transporting and processing the corn into ethanol, there is little gain, if any, to be realized in the reduction of carbon emissions. Much the same is true for soybean, switch grass or other crop conversions to ethanol.

LETTER TO PAUL

Hi Paul,

Thank you very much for your kind notes. I hadn't realized that intelligence skips generations --sort of like twins, huh?
Anyway, I like your father's sense of humor. I reviewed the website; if tough, he had an engaging smile that hid it very well.

My game was tennis, although not quite to the level of a scratch golfer.

I see that your father's sister also was afflicted with ALS. So sad for your family -- I assume that means they inherited the disease from their parents, each being a carrier of the defective gene. But maybe not. I learned just a few years ago that my parents were second cousins; however, I'm the last of seven children and none of my siblings has had the disease. As Dr. Lewis Rowland of Columbia -Pres once said to me, "stop blaming your parents ". We all grew up on a farm in the middle of Kansas and drank the same well water as our cows. As one of my brothers likes to say, our mere survival is a , alone, a miracle!

I, too, have now lost my voice and, except for the computer (which I only use at home), also communicate by means of a letterboard, which is so frustrating. If not for the computer, I think I would lose my sanity. And now, the researchers are starting to put "chips" in the head, which somehow can run the computer by the brain's thought processes. That may be a little more than one needs!

My wife, Maureen, and your mother sound like kindred spirits so I'm sure we will meet in the near future. Thanks again for sharing your experiences with me.

Best regards, Bob.

SOLUTIONS TO DUST STORM

Hi Frank,

Thanks for the extra input for the conditions contributing to the dust storms of the '30s. The development of machinery enabling the planting of greater acreage is certainly a significant element leading to the dust storms. And, of course, wheat was the leading cash crop, so most open fields were planted in wheat.

Prior to the development of the tractor and combines to harvest the wheat crop, its hard to imagine how much back -breaking work was involved in bringing the crop to market. My mother often talked about the mules my grandfather used to pull the plows, disks, and harrows, then the ripe wheat was first cut and tied into bundles by a machine called a binder; the bundles were then stacked into separate little tepee-shaped "shocks " in the field and, finally, the bundles were fed into a
"thrasher" which separated the wheat kernels from the stalks. There were "thrashing crews" of up to 15-18 men who followed the harvest season, moving north from Texas to the Dakotas, to pick up the wheat bundles and feed them into the thrasher. My mother's job was to bring lunch to the field, then afternoon coffee and, finally, supper at the end of the day for the entire crew.

At about the time of my high school years and continuing pretty much to the present time, the state governments began to limit the acreage that could be planted in wheat, encouraging farmers to either let the extra land lay fallow and/or plant in other crops such as sweet clover, which actually is a wonderful plant, providing great food for cattle and also returning nitrogen to the soil. Planting wheat in the same acreage year after year does deplete the soil of certain nutrients, such as nitrogen, which can be replenished with commercial fertilizer or by planting other crops , or simply permitting the land to lay fallow for one or more seasons. These restrictions had the two-fold purpose of holding down the possibility of dust storms, propping up the price of the wheat and re-enriching the soil.

Today, there is a new problem looming, caused by the desparate push to create ethanol for auto fuel : farmers are planting every available acreage in corn, which is now a higher cash crop than wheat. While corn formerly was primarily a food crop for cattle and pork, now farmers must pay a unrealisticly high price to feed farm animals corn supplements, causing a ripple effect in food prices for beef, pork and poultry prices at the grocery store. At the same time, the decrease in the wheat available also will cause wheat prices to rise, and less wheat available to ship to starving populations around the world.Its a sad day when food for animals and the human population is diverted to auto fuel.

Enough pontificating. Best to you. Bob.

MY BOOK AND MY COMPUTER

FIRST, YOU ALL SHOULD KNOW I MISSED THE COMPUTER AGE IN SCHOOL AND FOR A LARGE PART OF MY CAREER AS A LAWYER PRACTICING PATENT AND TRADEMARK LAW. AS COMPUTERS SLOWLY BECAME A MORE PROMINENT PART OF OFFICE LIFE IN THE EARLY 1990s, OUR PRIMARY USE OF COMPUTERS BEGAN WITH WORD PROCESSING AND I LARGELY LEFT THE DETAILS OF COMPUTERS TO THE SECRETARIES, LIBRARIANS AND RESEARCH ASSISTANTS. 


I SAY THIS TO LET YOU KNOW THAT I NOT ONLY HAD TO LEARN TO TYPE WITH MY EYE, I ALSO HAD TO LEARN THE BASICS OF COMPUTER WORD PROCESSING LINGO. I WANT YOU TO KNOW THAT MY EYE RESPONSIVE COMPUTER CAN BE SUCCESSFULLY USED BY ANYONE WITH DIFFICULTY USING THEIR HANDS OR HAS NO SPEECH,. I CAN DRAFT, EDIT, SAVE AND RETRIEVE DOCUMENTS. I CAN EMAIL AND SURF THE INTERNET PRETTY MUCH THE SAME AS EVERYONE ELSE. 


HERE IS HOW MY COMPUTER WORKS. A CAMERA IS MOUNTED UNDERNEATH THE SCREEN AND IS TRAINED ON ONE EYE --EVERYONE HAS A FAVORITE EYE. THE IMAGE FROM THE CAMERA APPEARS ON THE SCREEN SO THAT THE CAMERA THEN CAN BE FOCUSED SHARPLY. THEN THE POSITION OF MY EYE IS CALIBRATED TO THE SCREEN BY LOOKING AT EACH CORNER AND THE CENTER TOP AND BOTTOM --NINE POINTS IN ALL. BASED ON THIS CALIBRATION STEP, THE CAMERA IS SO SENSITIVE THAT IT KNOWS EXACTLY WHERE MY EYE IS LOCATED ANYWHERE ON THE COMPUTER SCREEN.

AFTER CALIBRATION, A KEYBOARD APPEARS ON THE BOTTOM HALF OF THE SCREEN AND THE TOP HALF IS BLANK. WHEN I LOOK AT A LETTER ON THE KEYBOARD FOR JUST TWO TENTHS OF A SECOND IT APPEARS ON THE TOP HALF OF THE SCREEN.
THE TIMING CAN BE ADJUSTED SLOWER OR EVEN FASTER. THERE ARE INTERCHANGEABLE KEYBOARDS --ONE FOR THE ALPHABET, ONE WITH NUMBERS AND ONE FOR PUNCTUATION.THE USUAL FUNCTION ICONS AND TOOL BARS APPEAR AT THE TOP AND BOTTOM OF THE COMPUTER SCREEN. 


 THE PROCESS I USED FOR WRITING THE BOOK WAS AS FOLLOWS: I DIDN'T ATTEMPT TO SEE THE FINAL PRODUCT IN MY MIND BEFORE STARTING TO WRITE. INSTEAD, I JUST WROTE SHORT VIGNETTES, LIKE A SMALL CAPSULE, OF EVENTS OR EXPERIENCES THAT I REMEMBERED OVER THE YEARS --ANYTHING THAT HAD STUCK IN MY MIND. I DID ATTEMPT TO DATE EACH STORY, EITHER BY MEMORY, PHOTOGRAPHS THAT I COLLECTED FROM MY FAMILY AND EVEN THE RECORDS AT ELLIS ISLAND --THE FAMOUS ENTRY PORT FOR IMMIGRANTS TO THE UNITED STATES IN THE 18th AND 19Th CENTURIES, AND THE FIRST HALF OF THE 20th CENTURY. 


AS IT TURNED OUT, MY LIFE STORIES BEGAN TO FALL INTO A NATURAL CHRONOLOGICAL ORDER --THE FAMILY HISTORY FIRST, THEN FARM AND SCHOOL LIFE IN KANSAS, THEN LAW SCHOOL IN WASHINGTON D. C., THEN COMING TO NEW YORK CITY IN 1963 AND MY INDOCTRINATION TO BIG CITY LIFE AND HOW THE CITY HAS CHANGED IN THE PAST 40 YEARS. I THEN DESCRIBE SOME OF THE COURTROOM DRAMAS, SOME OF WHICH ARE HUMOUROUS, THAT I EXPERIENCED IN MY LAW PRACTICE. I ALSO CAME ACROSS MANY INVENTORS IN MY LAW PRACTICE, AND I WRITE ABOUT TWO OF THEM WHO WERE PARTICULARLY INTERESTING CHARACTERS. 



FINALLY, I DESCRIBE MY EARLY SYMPTOMS WHICH FORETELL THE ONSET OF ALS --LOU GEHRIG"S DISEASE, .THE STOMACH CRAMPS, LEG WEAKNESS, THEN STUMBLING AND FALLING FOR NO APPARENT REASON. AFTER NEARLY TWO YEARS OF THESE DECLINING PHYSICAL ABILITIES, WHICH BY THEN HAD ME LEANING ON A CANE AND THE ARM OF ANYONE WHO WAS NEAR, I WAS OFFICIALLY DIAGNOSED WITH A L S. I RELATE MY EMOTIONAL DEVASTATION, THE INDIGNITIES I INITIALLY FELT WHEN A WHEELCHAIR BECAME THE ONLY OPTION..BUT I ALSO DESCRIBE MANY FUNNY MOMENTS AND COMPASSIONATE EXPERIENCES AS I MOVED THROUGH THE STAGES OF IMMOBILITY. 



I WROTE MY BOOK FOR TWO REASONS.FIRST,SO MY FAMILY WOULD HAVE AN ENDURING MEMORY OF THEIR ANCESTORS AND ONE MAN'S JOURNEY THROUGH LIFE FROM THE FARM TO THE CITY.SECOND, I WANTED TO ENCOURAGE OTHERS WITH PHYSICAL HARDSHIPS THAT A GOOD QUALITY OF LIFE IS POSSIBLE, PARTICULARLY WITH TODAY"S ASSISTIVE TECHNOLOGIES. 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.

ENJOY IT FOR ALL ITS WORTH!

MAUREEN'S SPEACH IN WINNIPEG

March 19, 2009

NOT IN KANSAS AMYMORE: A PRAIRIE BOY'S LIFE
A New Voice and A New Beginning

I was brought to my knees the day my husband Bob was diagnosed with ALS, It was 12years ago. After we spoke with our doctor, a social worker sat us down and said it short and NOT so sweet. "You are on a downhill ride and there is NO WAY OFF. " She also said, "Bob will first lose all function in his arms and legs, then his hands, and then his lungs. He will die of respiratory failure --but then, we all die of respiratory failure."

We both abruptly left the doctor's offices, stunned by the devastating prognosis. I thought to myself, "How are we going to go forward?" There was really nothing either one of us could say at the time. It was such a shock.

But then we began to read about ALS, we read, read, and read some more. Then we talked and talked. Bob approached his diagnosis like everything else . . . as a scientist. He studied medical journals and textbooks, and searched for medical school websites. And asked lots of questions. And forward we went --one day at a time. 

 The losses come every day with ALS. Sometimes subtle, and sometimes knocking you on your back.

Bob's changes came from the legs up. First, he became fatigued walking five or six blocks, then his fatigue came after only half a block. Then he could not go up or down stairs, or jump and then came the stumbles and falls. After that, a cane, then a walker and then, a wheelchair. Next, Bob lost the use of his arms, so that he could not lift even a book or bring a glass of water or food to his mouth. Not yet finished with the losses, ALS then took away Bob's use of his hands. No longer able to hold a pen, he no longer could write or sign his name. A profound loss to his lifelong career as a patent lawyer --writing, dictating, editing --all day, everyday. And yet, Bob continued his law practice throughout all these losses. We found a medical student to shower and dress Bob in the morning and another young nurse's helper to be his hands and legs at the office. 

 

How did we handle these losses, you might ask? Not particularly well at the time. We grieved, cried a lot, and then couldn't cry anymore. At that point, we just put away our dreams and put our lost capabilities in lockup. We refused to dwell on the "what might have beens." If we did that, the future would be hopeless. 

Instead, we dreamed new dreams -- by this time, Bob was totally disabled, SO --where could we go or do what, all in a wheelchair? Well, we found lots of possibilities. We have flown to Puerto Rico and Las Vegas, cruised up the Alaska coast and the Mediterranean, visited museums, seen all the movies and a few Broadway shows. Plus, lots of window shopping and time in the park with our dog, Opal.

As foretold by that social worker in the doctor's office, ALS was not done yet. 5 years ago, Bob did, indeed, suffer a respiratory failure. But the social worker hadn't known of Bob's determination to live or of the lucky streak that has followed him throughout his life. Even though we were in a Boston hotel room, Bob's caretaker was with him when Bob stopped breathing, called 911, and the technicians managed to get an emergency tracheostomy into him in the nick of time to save his life. From then til now, Bob survives on a life-support ventilator and a stomach feeding tube. 

He spent 3 weeks in the well known Helen Hayes Rehabilitation Hospital so that our caretakers, our 3 sons and myself could learn the operation of the ventilator equipment so Bob could continue living at home successfully, and not in a nursing facility.

Even with the tracheostomy, Bob was able to use his voice quite well for almost 3 more years. As with everything for the ALS patient, however, his voice also slowly faded until he no longer could speak. That was probably the most devastating loss of all. Not only for communication, but Bob had enjoyed a lifetime hobby of singing. So --another wall to climb. But, thankfully, there is one thing ALS does not affect --and that is the brain. Bob thinks and understands as well as ever.

And that brings us up to date -- the eye-responsive computer became Bob's new voice. With this technology, he wrote his memoir "NOT IN KANSAS ANYMORE," telling his life story in his own words. It took Bob 13 months to write --each letter of each word produced by a separate eye movement. With drafts, edits and rewrites, more than a million eye clicks. 

 

I hope you will read and enjoy Bob's fascinating, life affirming and inspiring life story. Thank you.

Response to book

Dear Bob:

I just finished reading your book. Congratulations! You have written an engaging story of your rural past and your urban success. You are a great testimony to the perseverance needed to overcome huge obstacles in life. This book encourages everyone who reads it to never give up.

I am so honored to know you all these years. You have inspired my life.

Praying for you always.
Sincerely, Pastor John and Irene Smucker

A lovely and treasured letter I received

Your book arrived in the mail yesterday, and I stopped everything to read it right through, nonstop -- couldn't help but. I've read through any number of books in one sitting of course, but only one other comes to mind in which I definitely should have been doing something else, as was the case here, and that was Fitzgerald's "The Great Gatsby," so you're in good company.

The book was wonderful and I hope it will be a best-seller. Modest in tone, but wonderfully vivid and uplifting, and wonderful stories that reflect your personality so well, I chuckled many, many times, remembering all the similar good laughs we had during our high school years. I hadn't realized you were so close to your brothers all those years, nor that you had had to work so hard on the farm. You've really had a most interesting life, and, I liked the emphasis on good luck, which Liz and I have also appreciated over the years -- but it was a great way to start the book, setting the tone for the book and reinforcing it throughout.

I remember how thorough you were in learning the material in the one rigorous course we had in high school -- biology. So, the intensity you brought to your profession in patent law was but a continuation of that resolve. We actually had to study in that class and you were a master. Also, I was pleased that you mentioned Jaderborg, our English teacher, who made a huge difference in our lives. Many of his significant passages still reverberate in my mind and the wisdom they conveyed have been unforgotten.

I liked the three quotes you used at the beginning of each section, particularly the Einstein quote. It's been a hard lesson for me, because I've always felt I could do anything, and that's been the cause of alot of disappointment and depression. But it's so true; once you realize you're limitations, life can open up and you can get a perspective on what's important, and can accept other people much better as well.  The other quotes were very apt too -- you meet life where it is, and that's what you choose.

Congratulations again on a beautiful book, and on getting it reviewed in The New York Times -- no small thing! We hope to buy lots of copies and give them to friends as gifts -- and so proud to have been part of your life and can claim you as a lifetime friend. I wish everyone in our class could write such a memoir -- everyone has an interesting story I expect -- though your life has really been exceptional. Liz is reading the book now; it's spawned so many conversations, and we again are so thankful for all the good luck we've enjoyed -- an important attitude to carry into old age (so many are embittered).

Loren

Kindness

For Bob, October 21st 2007

Before you know what kindness really is
You must lose things,
Feel the future dissolve in a moment
Like salt in a weakened broth.

From “KINDNESS” by Naomi Shihab Nye


As you all know, I lost my sister Diane a few years ago. She had not been ill…she just died… suddenly…drowned while doing work with the Guatemalan people. I’ve come to know the acute woe you feel with sudden death. I’ve also come to know what it is like to live with a catastrophic prolonged illness…through Bob.

In March of 1998 Diane said... “Where is God in all of this…I don’t know…but He has promised to be with us always in the darkness and in the light…In the darkness we cannot see or feel…Know that you are surrounded by people that do love you both and your family as well...” And here we are with YOU… our family and friends.....thank you.

ALS has made our old dreams die…but new dreams emerge…We have learned to mourn each loss and move forward…And this Bob has done with elegance and undying courage...I love him for this.

Bob is a sophisticated man…even though he hales from a wheat farm in rural Lindsborg Kansas. But, he draws his contentment from simple things…a ride in the van to the boardwalk in Brighton Beach, the dinners and lunches and movies with you...our friends, watching Tiger Woods play, being glued to a Yankees game or CSI, listening to opera. Because of your KINDNESS, Bob is at home and can enjoy all these simple things.

A mixture of emotions sweeps over me tonight…High on this list is JOY, LOVE and GRATEFULNESS.

Herman Melville, a New Yorker by the way, said “We cannot live for ourselves alone. Our lives are connected by a thousand invisible threads”… You all are those threads.

Thank you again for your KINDNESS.

I would like to leave you with a quote from James Baldwin…”The moment we cease to hold each other, the moment we break faith with one another, the sea engulfs us and the light goes out” but you all know this already ….you have kept on our light these past years…



Love and Thanks, Maureen

…

New York Times Article

NEW YORK REGION / THE CITY | February 01, 2009
Reading New York: The Bagel, the Lobster and the World's 'Luckiest Man'
By SAM ROBERTS

Robert E. Paulson’s “Not in Kansas Anymore: A Memoir of the Farm, New York City and Life with A.L.S.” (Gemma B. Publishing, $19.95) is an inspirational must-read record of one man’s indomitability with the support of his wife, his family and his friends.

Mr. Paulson, a former patent attorney, began suffering from amyotrophic lateral sclerosis, or Lou Gehrig’s disease, when he was an adult and the father of three sons (one still a teenager). He recalls his first view of New York in “the bad old days” of the early 1960s and his later move to Yorkville, where Lou Gehrig, the ballplayer who gave his name to the disease, grew up.

Along the way, Mr. Paulson offers some intriguing arcana regarding patent law, but the most moving passages involve his discovery, beginning in 1993, that “something was wrong with my body.” He chronicles his metamorphosis from a vigorous former farm boy an amateur singer into an invalid unable to speak, one who breathes through a mechanical ventilator and is dependent on a feeding tube. “I was essentially entombed in my own body,” he writes.

But he lived and wrote this memoir on an eye-responsive computer keyboard. The “diagnosis of this disease need not be a death sentence,” he concludes, adding: “Life is everything. And what is it but the ability to feel, think and communicate? Thanks to today’s technologies, A.L.S. can’t take any of these from you.”

Echoing Gehrig, Mr. Paulson, who is 71, writes: “I am a lucky man.”