Think back: Remember those halcyon days of 2014 when we spent the summer dumping buckets of ice water over our heads and challenging our friends to do it or pay up? For some, let’s call them millennials, this was the first time they had heard of amyotrophic lateral sclerosis (ALS).
For New Yorkers, even the millennials, they knew what ALS was as soon as they learned the name Lou Gehrig. In the United States, and especially in New York, ALS is also called Lou Gehrig’s disease.
This rare disease received a lot of attention and donations in the summer of 2014 because of the ice bucket challenge. It got more publicity later that year and into the next with the cinematic release of The Theory of Everything, a film about the other most famous person with ALS, Stephen Hawking. People were suddenly paying more attention to this disease that affects approximately 30,000 Americans and nearly 500,000 people worldwide.
The name of the disease tells you a little bit about what it is. “Amyotrophic” means no muscle nourishment. “Lateral” means side, or in this case the portion of the spinal cord that has nerve cell relays. And “sclerosis” means degeneration that leads to hardening. In other words, the disease slowly robs a person of the ability to move muscles voluntarily.
Because ALS is progressive, the disease will continue to affect the individual until that person cannot walk, talk, eat, drink, or perform any other physical activity.
ALS is usually diagnosed when the person is middle aged, but some people start to exhibit symptoms much earlier. Astrophysicist and mathematician Stephen Hawking is an example of someone diagnosed early, shortly before he turned 22. His early diagnosis and the slow progression of the type of ALS he has, have enabled Mr. Hawking to live for quite some time: more than 50 years now.
Though he cannot speak and is confined to a motorized wheelchair, his brilliant mind has been left unaffected. We have all benefited from his brilliance. With the help of technology he helped to develop, Mr. Hawking can still write, make predictions about the future, and even warn the people of the world of what he thinks is going wrong.
Mr. Hawking may very well be the longest living person with ALS in history. Here’s to wishing he lives for a good deal longer.
To watch an advertisement for one of the many specials Hawking takes part in and to read a piece congratulating Hawking on his 75th birthday click here.