As a science fiction writer, I usually find in necessary to keep up with much of the ground-breaking work that goes on in the fields of astronomy and particle physics and cosmology and all that other astronomical stuff, among others, and in many cases I wind up either reading the work of Stephen Hawking, or at least hearing about the latest research he’s done. He’s in his 70’s now, and has been afflicted with ALS since he was 21. At the time of his diagnosis, he wasn’t expected to live much past 25. But for some unknown reason, he’s lived with the disease for an almost outrageous number of years. I’ve been curious for a long time, how does he do it? Is there a specific reason why he hasn’t succumbed to the disease? Does he have some variant of the disease that lets the afflicted person live a long time? The vast majority of people with ALS (amyotropic lateral sclerosis) die within three to five years. So I looked up a little about ALS to see if there’s something to his longevity.
In the US we call it Lou Gehrig’s Disease after the baseball player who died of it in 1941, but in the UK, they call it motor neurone disease. ALS affects the motor neurons in the brain and the spinal cord which transmit impulses to the voluntary muscles throughout the body. It’s those voluntary muscles that do all the things we want to do, such as telling each finger what letter to press on a computer keyboard. Motor neurons also innervate the diaphragm, which is a part of breathing. That’s why we can take a voluntary deep breath. ALS can kill off the nerves that affect the diaphragm, and that results in breathing difficulty, and can be one of the contributing causes of death. Eventually, ALS begins to affect other neurons other than the motor neurons, and that can also be a cause of death.
But it seems there are various life expectancies within the general diagnosis of ALS. Most with the disease die within three to five years, but about twenty percent live five years after diagnosis, ten percent live ten years, and five percent can live twenty years or more. But Stephen Hawking has lived for almost fifty years with the disease, and, as far as I could tell, no one knows why. It may be that he has had excellent nursing care over the years, though no one really knows whether that’s an important factor in his longevity or not. Maybe it’s due to force of personality; he just refuses to give in to the disease. That seems unlikely, though. It’s doubtful that patients can voluntarily affect the course of the disease. In any event, he’s certainly an outlier; most patients don’t have any chance of living that long at all. He still does research and publishes papers, and has still made important contributions to cosmology. I wish I could do the same, even without the diagnosis.