Motor neurone disease and Stephen Hawking 

At just 21 years old, Stephen Hawking was diagnosed with amyotrophic lateral sclerosis (ALS) in 1963. ALS, which is the most common form of motor neurone disease (MND), is a progressive neurological condition that damages the motor neurons responsible for sending messages from the brain to muscles. This eventually causes weakness, paralysis and loss of voluntary control.

How long did Stephen Hawking live?

After being given a prognosis of two years, Hawking lived to the age of 76, defying all clinical expectations. He continued his research, lectures, writing and public engagement while gradually losing muscle function and eventually communicating through advanced eye‑tracking and voice synthesis technology.

How did he live so long?

Hawking’s prolonged survival was an extraordinary medical and personal story. A number of factors played a role:

• Slow‑progressing variant of ALS, which is uncommon in typical ALS diagnoses.
• 24/7 specialised medical support and respiratory management.
• Access to cutting‑edge assistive equipment and communication technology.
• A strong personal drive to continue his scientific work.

While the average time between being diagnosed with MND and passing away from the disease is 2.5 years, Hawking’s case remains one of the most unusual MND journeys ever recorded.

Motor neurone disease support

For most people living with MND, the condition brings intense challenges — physical, emotional and practical. Fortunately, organisations like MND Victoria provide a range of services specifically designed to support people living with MND, their families and loved ones.

Comprehensive support services

MND Victoria offers tailored care and support across many areas, including:

• Personalised advisory support: Help navigating MND care needs, referrals to specialist services, and connecting with health professionals.
• Counselling services: Free, confidential counselling sessions to assist people impacted by MND in processing emotions, managing stress and building coping strategies.
• Support for carers: Programs designed to help those caring for someone with MND, including access to information, emotional support and respite opportunities.
• Equipment loan library: A dedicated resource allowing people living with MND to access essential equipment such as wheelchairs, hoists, call bells and respiratory aids — at no cost to them.

These services can make an enormous difference to quality of life, independence and daily functioning, especially as symptoms of MND progress and new challenges arise.

A legacy

Stephen Hawking’s story highlights not only the power of resilience but also the importance of tailored support for people living with MND. Whether it’s vital assistive equipment, emotional counselling, carer respite or connection with others facing a similar journey, organisations like MND Victoria are essential for the MND community.Since 1981, MND Victoria has continued to provide and promote the best possible care and support to all Victorians impacted by MND. If you or a loved one are impacted by MND, or you simply want to better understand the condition, we are here to help.