Amyotrophic lateral sclerosis, better known as ALS, has received a lot of media attention as of late. The Ice Bucket Challenge that swept the nation was designed to not only raise money for ALS research, but to raise awareness of the disease. The challenge itself echoed the debilitating symptoms of the progressive disease, which causes nerve cells and motor neurons in the brain and spinal cord to die off, leading to loss of muscle control and eventual paralysis.
In addition to the Ice Bucket Challenge raising awareness of the disease, ALS played a role in a major storyline on the hit television show Empire. On the show, recording mogul Lucious Lyon (played by Terence Howard) is diagnosed with ALS and given three years to live due to the progressive nature of the disease. Keeping his diagnosis a secret, he makes plans to take his company public with stock investors and to leave his company to one of his three sons. As it turned out, the character of Lucious Lyon was misdiagnosed and had myasthenia gravis, a disease that causes muscle weakness, but is not fatal nor does it lead to total paralysis like ALS.
Famous People Who Have ALS
Famous people aren’t immune to ALS. Celebrities and the media have raised awareness for ALS, but they’re not immune to the disease, either. Here are a few famous people diagnosed with ALS and their inspiring stories of living with the disease, facing its challenges, and leading full lives with the condition.
ALS is sometimes referred to as Lou Gehrig’s disease. Its namesake, Lou Gehrig played first base for the New York Yankees between 1923 and 1939. He was known as “the Iron Horse” for his batting average and longevity in the sport, having lead the team to six World Series championships. He held the record for 23 grand slams until it was beaten only recently by Alex Rodriguez. His achievements on the diamond were so amazing that he became the first MLB player to officially have his number retired.
In 1939, Gehrig’s batting average had dropped from .343 to an uncharacteristic .143. He had been feeling weak and unsteady. Fans and teammates noticed that even his coordination and ability to run the bases was off, too. That same year, Gehrig went to the Mayo Clinic and received his career-ending diagnosis that he had ALS. On June 21, 1939, Gehrig retired from the game and made one of the most poignant, eloquent speeches ever made in front of a packed stadium. He was also inducted into the Hall of Fame that same year.
Following his retirement, Gehrig was appointed by New York’s then-mayor, Fiorello LaGuardia to serve as NYC Parole Commissioner. He accepted the position until he was physically unable to keep up with the demand of the job. Yet, he remained positive, saying “I intend to hold on as long as possible and then if the inevitable comes, I will accept it philosophically and hope for the best. That’s all we can do.” Lou Gehrig died in 1941 as a result of ALS.
Perhaps the most famous person living with ALS is noted British physicist Stephen Hawking. Hawking’s life, career, and struggle with ALS was recently made into a movie, The Theory of Everything, earning actor Eddie Redmayne an Academy Award for his portrayal of the scientist.
Hawking has a rare form of the disease that is very slow to progress, He was first diagnosed when he was still attending Oxford University in the 1960s. As the decades and his condition progressed, Hawking’s condition deteriorated. He went from using crutches to get around, to eventually a wheelchair, having been paralyzed by the condition. Hawking is one of the rare individuals who has lived with ALS for more than five decades.
Currently, he is able to communicate using an electronic device operated by a single, functioning muscle in his cheek. Despite his physical limitations, Hawking’s mind has gifted the world with numerous scientific and mathematical theories, earning him numerous awards, including the U.S. Presidential Medal of Freedom, and membership as an Honorary Fellow of the Royal Society of arts and the Pontifical Academy of Sciences. For 30 years, Hawking served as a Professor of Mathematics at Cambridge and his work has served as the basis for many documentaries, books, and more that he’s had a hand in producing, including A Brief History of Time.
Musician Jason Becker is another famous person who is still alive, fighting ALS, and staying active in creating a body of work. Born in 1969, Becker is currently 45 years old. He was diagnosed with ALS in his early 20s, shortly after touring with legendary Van Halen frontman, David Lee Roth, on his solo tour and winning industry recognition for his guitar prowess.
Following his diagnosis, doctors gave him roughly three to five years to live. Becker defied expectations and is still living and creating music decades after he was told he had ALS. To compensate for his condition, Becker switched to thin guitar strings and was able to continue recording. As his ALS progressed, Becker became paralyzed and unable to speak. However, his father developed a device that allows the guitarist to communicate using his eyes. Although he’s bound to a chair by ALS, Becker’s mind is still as sharp as ever, as is his ear for creating music. He continues to compose music to this day, working with other artists to produce their work as well as his own. Becker has released five original, full-length albums since his diagnosis, the most recent being 2008’s Collection and a 2012 album collecting rare music the guitarist recorded in his teen years.
These are just a short list of famous people who did great things while battling ALS. And there is no shortage of everyday people living with ALS who are accomplishing equally great things. Do you know someone with ALS who inspires you?