Life With ALS: The Stephen Hawking Story

Stephen William Hawking is one of the most influential and inspirational figures of modern times. Diagnosed with a neuromuscular disease called amyotrophic lateral sclerosis, or ALS, at the age of 21, he was told he had only a few years left to live. Despite his prognosis, he defied the odds and went on to become one of the world’s most renowned physicists. Let’s take a look at Stephen Hawking’s story.

Early Life and Education

Dr. Stephen Hawking was born in Oxford, England, in 1942 and lived a good portion of his life without a disability. His father, Frank Hawking, was a medical researcher, while his mother, Isobel, worked as a secretary. He studied math and physics and earned a Ph.D. in physics. Stephen found school difficult as a child but excelled in maths and science. He studied physics at University College Oxford, graduating with honors in 1962. He then completed his Ph.D. in cosmology at Cambridge University in 1966.

While in graduate school, at age 21, Dr. Hawking was diagnosed with Amyotrophic Lateral Sclerosis (ALS), commonly referred to in the US as Lou Gehrig’s disease. He was getting more clumsy and fell over several times without knowing why. As ALS progresses, the degeneration of motor neurons in the brain interferes with messages to muscles in the body. Eventually, muscles atrophy and voluntary control of muscles are lost.

People with ALS typically maintain intelligence, memory, and personality, even in the late stages of the disease. Dr. Hawking became a professor at the University of Cambridge in England. Although some physicians expected his life to be short, he died at the age of 76 after living for more than 50 years with ALS. He published many articles and several books on theoretical physics and the Big Bang theory. His most popular book, A Brief History of Time, was published in 1988.

What is ALS?

Also referred to as Lou Gehrig’s disease, ALS is the most common type of MND, involving the degeneration and eventual loss of the nerves that relay signals to the muscles. To clarify, MND is the widely used generic term in Australia, the UK, and parts of Europe. ALS is used more generically in the United States, Canada, and South America.

The damage can happen in the brain, the spinal cord, or peripheral nerves, which connect the brain and spinal cord to the rest of the body. It causes involuntary muscle contraction, also known as spasticity, alongside weakness and muscle wasting.

The disease affects men and women equally. It usually begins in mid-to-late adult life and gets more common with age, although more people appear to be developing MND in early adult life.

We don’t know what causes the majority of cases of motor neuron disease. About 5 or 10 percent of cases are inherited, and about 60 percent of the genetic link is now known in Australian families.

As the condition progresses, the symptoms worsen, more areas become involved, and function is progressively lost. Eventually, paralysis strikes the throat, diaphragm, and chest muscles, causing difficulties swallowing and breathing. The senses of eyesight, hearing, taste, smell, and touch aren’t affected, nor are bladder and bowel functions. Distressingly, the patient remains fully conscious and aware as they become progressively paralyzed. Death is usually caused by respiratory failure or pneumonia.

Who gets ALS?

Doctors aren’t totally sure what causes ALS in most cases, though it does appear to have a genetic component in some people. It’s usually diagnosed in people between the ages of 40 and 60, and men seem to be more likely than women to develop the condition, at least before the age of 65.

How did Hawking live so long with ALS?

Researchers aren’t sure as well. ALS is a complex disorder, and every journey is so incredibly variable. Experts are working with teams globally on these very big data efforts, trying to understand each person’s clinical journey, their genetics, and what they were exposed to. These scientists and medical researchers are still trying to figure out the puzzle.

With only a few cases of extreme longevity on record, the sample size is too small to draw concrete conclusions about the factors that allow people like Hawking to live so long. However, it’s probably some combination of genes, environment, and clinical care. The kind of motor neurons affected by a person’s disease may also matter, noting that motor neurons that control eye movement often resist ALS far longer than those in the brain and spinal cord. Understanding how those cells stave off death may help scientists understand long-term survival.

Achievements and Awards

Despite being given little chance to survive due to his illness, Stephen Hawking lived for more than 50 years after his diagnosis. During that time, he made several breakthroughs in theoretical physics, which have been credited with revolutionizing our understanding of the universe and its origins. He also wrote several books aimed at helping others understand science, including A Brief History of Time which has sold more than 10 million copies worldwide.

Hawking made groundbreaking advances in our understanding of black holes, relativity, and quantum mechanics. He proposed many theories that pushed the boundaries of what we knew about these concepts, including the idea that black holes emit radiation—now known as “Hawking Radiation”—and that they can eventually evaporate over time. His work also contributed to advancements in other branches of physics, such as thermodynamics and particle physics.

For his work, Stephen won numerous awards, including 12 honorary degrees from various universities around the world, as well as being awarded the CBE (Commander of the Order of the British Empire) by Queen Elizabeth II during her New Year Honours List in 1989. In 2009 he was presented with an Honorary Fellowship from The Royal Society of Arts, while in 2013, President Barack Obama presented him with The Presidential Medal Of Freedom—the highest civilian award available in America.

Stephen Hawking’s Legacy

Stephen Hawking is an incredible example of what it means to never give up, even when faced with seemingly insurmountable obstacles. Dr. Stephen Hawking continued to be active in his research and personal life because he developed effective strategies for personal care, speaking, writing, and research activities that compensated for functional limitations imposed by ALS. His experiences illustrated the following:

People can acquire a disability status at any age, from birth to advanced years.
Accommodations change over time for those with degenerative conditions.
Assistive technology can compensate for limitations relative to mobility and speech.
Having a disability does not exclude people from discovering and pursuing their passions in life.

Through sheer determination and hard work, he achieved far more than anyone could have expected, given his circumstances, inspiring generations along the way. His story will continue to be shared for many years, making him an everlasting symbol of hope and perseverance!