Monday, March 30, 2009

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.

Wednesday, March 25, 2009

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

Sunday, March 15, 2009

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.

Friday, March 13, 2009

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.