It's extremely difficult as a patient to watch the limited progress made against ALS by the medical community. Almost 150 years since the disease was identified and only one lousy, very expensive medication (Riluzole) that may extend life only 60-90 days on average in some patients. If you believe the past predicts the future, we are doomed. If you think linearly and look at the experts constant reference to how puzzling and difficult ALS is to understand, you become disheartened. If you understand it takes 12-15 years on average for a drug to make it from concept to shelf, that is many times the average ALS patients lifespan after diagnosis.
Although an individual like a scientist or a researcher is an expert in his or her field of ALS Research, that does not mean they are an expert at technology-based forecasting. The common wisdom is to think linearly, and assume the pace of development and change will continue based on his or her expert knowledge of what is known "today." I am not a scientist, but am a technologist and a mathematician. Also
like to explore new ways of thinking and challenge conventional wisdom.
Thankfully in the past, some overcame the linear thinking that the world
was flat, that blood letting was a great medical treatment, or even
that women should not be treated equal or even vote. I believe
that technology is just beginning to revolutionize modern medicine, and
we are at the cusp of some major breakthroughs in the months and year to
come. There is now almost monthly news of new discoveries, advances in Stem Cell research, promising new clinical
trials, a recent FDA approval of the Diaphragmatic Pacer, an attempt to
better mine data via the new ALS CDC Registry, etc. All cause for hope.
I have written elsewhere in this blog about the many technological advances that we have seen just in my lifetime. We math guys believe in Moore's Law, which says essentially that processing power doubles every 12-18 months. This makes the progression not linear (2/4/6/8/10), but exponential (2/4/8/16/32/64). It has been the basis for the incredible advances in Computers, Communications, and other areas too numerous to list. But it has not seemed to touch Medicine as quickly as some other areas. I believe that many factors, not the least of which will be the convergence of technology with economic potential, will conspire to ramp up discoveries and ultimately cure disease very rapidly in the future. It's been less than a decade since the Human Genome Project, and many believe that it will ultimately open the door to some incredible advances to come.
When you have been diagnosed with a terminal illness that runs heavily in your family, like me, it obviously colors your view. You are consumed with three things: 1) Trying to live every day to the fullest because literally some day in the not too distant future could be your last. 2) Hoping there will be a treatment and/ or cure that will be help you personally. 3) Hoping there will be a prevention, treatment or cure that can impact your immediate family and any relative that might get the disease down the road.
On the subject of hope, I recently finished reading The Singularity Is Near, by Ray Kurzweil, probably technology's most credibly hyperbolic optimist. Link Here. His first book, The Age of Intelligent Machines,
written from 1986 to 1990, put forth his theories on the results of the
increasing use of technology and very notably accurately foresaw the explosive growth in
the Internet, among other predictions. He also forecasted the demise of the USSR due to new technologies, predicted computer chess software performance would allow a computer to beat the best human chess player by 1998. It occurred in May 1997.
Two decades later, many will view his newest book as wild speculation. Others will be consumed
with the potential for negative outcomes to outweigh the positive. I view it as a potential road map of how technology and biology with intersect to cure all disease within the next three decades. By a guy that is a renowned futurist with a track record of amazingly accurate predictions.
In Singularity, Kurzweil says that humankind is
at the threshold of an epoch ("the Singularity," a reference to the
theoretical limitlessness of exponential expansion). Moore's Law is frequently quoted, and at the core of all discussion. We will soon see the
merging of our biology with the staggering achievements of "GNR"
(genetics, nanotechnology and robotics) to create unrecognizably high intelligence, durability, comprehension, memory and
so on. The word "unrecognizable" is not chosen lightly. Kurzweil's argument is twofold. He argues that there will be virtually no
constraints on our capacity, and he also tries to convince readers that such
developments are desirable. In less capable hands, his speculative and bewildering variety of
charts, quotations, playful Socratic dialogues and sidebars, would be
easier to dismiss. But Kurzweil is a true scientist—a large-minded one
at that—and gives due space both to "the panoply of existential risks"
as he sees them, and the many presumed lines of attack he was certain to entertain. What's exciting and intellectually stimulating at the same time isn't the degree to which Kurzweil's heady
and bracing vision fails to convince—given the scope of his projections,
that's inevitable. It's the degree to which it all seems downright plausible.
Believe Mr. Kurzweil or don't. Agree with my views, or don't. Choose to be optimistic, or choose to be cynical. Be futuristic and hopeful, or linear and fatalistic in your views. Be optimistic and challenge conventional wisdom, or be dismissive and tell all that will listen that history repeats itself. It's all up to you and you are absolutely entitled to your opinion. I choose hope.
Just one man's opinion.
