ALS Celebrity Patients: Stephen Hawking

Stephen Hawking

Stephen Hawking became known in the 1970s for his research in the field of cosmology and ever since he has continued to publish worldwide recognized studies. But one of his greatest achievements has been his fight against amyotrophic lateral sclerosis (ALS). Against all odds, the physicist is now 74 years old, while the average life expectancy for a patient with ALS is about two to five years from the time of diagnosis.

Born in Oxford, England, Hawking started his academic studies in the University College Oxford, where he pursued physics because mathematics was not available at the time. After that, he moved to Cambridge to study mathematics and conduct research in cosmology. After earning his Ph.D., he became a Research Fellow. However, during this time, when he was just 21, Hawking began experiencing symptoms of a disease later diagnosed as ALS.

“In my third year at Oxford, I noticed that I seemed to be getting more clumsy, and I fell over once or twice for no apparent reason,” Hawking wrote about the diagnosis. “But it was not until I was at Cambridge that my father noticed, and took me to the family doctor. He referred me to a specialist, and shortly after my 21st birthday, I went into hospitals for tests. It was a great shock to me to discover that I had motor neuron disease,” which is a group of disorders that includes ALS.

shutterstock_158393354Difficulty walking or doing normal daily activities, weakness in the legs, feet or ankles, hand weakness or clumsiness, slurring of speech or trouble swallowing, muscle cramps and twitching in the arms, shoulders or tongue, and difficulty holding the head up or keeping a good posture are common symptoms of the disease. However, Stephen Hawking did not let the ALS diagnosis slow him down.

His doctors told him he would live for two to five years, but 50 years have passed since then. In 1973, he left the Institute of Astronomy and six years later he entered the Department of Applied Mathematics and Theoretical Physics, where he spent 30 years as a Lucasian Professor of Mathematics.

In between, Hawking authored ,amy publications, including “A Brief History of Time,” “Black Holes and Baby Universes and Other Essays,” “The Universe in a Nutshell,” “The Grand Design,” and “My Brief History.”

“He is exceptional,” said Dr. Nigel Leigh, professor of clinical neurology at King’s College London, to the British Medical Journal in 2002, the year when Stephen Hawking turned 60. “I am not aware of anyone else who has survived with [ALS] as long. What is unusual is not only the length of time but that the disease seems to have burnt out. He appears to be relatively stable. … This kind of stabilization is extremely rare.”

Despite the unexpected life of Stephen Hawking, the disease has caused him numerous problems. While in his 20s, he lost the capacity to walk and started to use a wheelchair. In 1985, Hawking started using a computer communication system. For almost 20 years now, this system has consisted of a tablet computer mounted on the arm of the wheelchair that he controls with his cheek and enables him to communicate and continue working.

On Stephen Hawking’s website, it explains that “In spite of being wheelchair bound and dependent on a computerised voice system for communication Stephen Hawking continues to combine family life (he has three children and three grandchildren), and his research into theoretical physics together with an extensive programme of travel and public lectures. He still hopes to make it into space one day.”

His life has inspired numerous fiction and nonfiction movies, including “A Brief History of Time” (1991) by Errol Morris; “Hawking” (2004), a BBC drama by Philip Martin; “Hawking” (2013), a documentary by Stephen Finnigan; and most recently “The Theory of Everything” (2014), by James Marsh.

In Stephen Hawking’s case, it is impossible to dissociate the public man from the disease. And while he is most often recognized for his professional achievements, he is also an inspiration for the ALS community and advocates for the disease.

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