My Journey with MND Victoria

Hi my name is Ailish, and I am a social work student at Deakin University. For the past three months I have been completing my Field Placement at Motor Neurone Disease Victoria and by the time I finish I will have been working here for approximately five months.

I knew of Stephen Hawking’s journey with ALS before I started my placement but I would say I knew very little about the disease. When receiving my placement agency, as any student would, I researched the disease extensively. I was taken aback by the immense struggle I imagined would be faced by people with MND, their friends, family and carers.

In my time at MND Victoria so far I have had the chance to engage with individuals whose resilience in the face of adversity is inspiring. The strength of the human spirit can know no bounds. Very quickly I developed a passion to help those whose journey in life encounters MND and advocate on behalf of their needs. I feel blessed to be a part of an organisation where every worker demonstrates an intense dedication to their work and, no matter the challenge, they show up each day to help in every way they can. Until there is a cure, there is care.

Cosmologist, space traveller, hero!

On the 14th of March this year, one of the greatest scientific minds of our time passed away. Stephen William Hawking was born on the 8th of January 1942 (exactly 300 years after the death of Galileo). At the age of 21 (in 1963), he was diagnosed with a rare, slow-progressing form of Amyotrophic Lateral Sclerosis (ALS)- also known as Motor Neuron Disease (MND) and was given two years to live. An astonishing 55 years later and Hawking has left quite a legacy.

Academic Life

In October 1962, Stephen arrived at the Department of Applied Mathematics and Theoretical Physics (DAMTP) at the University of Cambridge to do research in cosmology, there being no-one working in that area in Oxford at the time.

After gaining his PhD (1965) with his thesis titled ‘Properties of Expanding Universes’, he became, first, a research fellow (1965) then Fellow for Distinction in Science (1969) at Gonville & Caius College. In 1966 he won the Adams Prize for his essay 'Singularities and the Geometry of Space-time'. Professor Hawking moved to the Institute of Astronomy (1968), later moving back to DAMTP (1973), employed as a research assistant, and published his first academic book, The Large Scale Structure of Space-Time, with George Ellis. During the next few years, Stephen was elected a Fellow of the Royal Society (1974) and Sherman Fairchild Distinguished Scholar at the California Institute of Technology (1974). He became a Reader in Gravitational Physics at DAMTP (1975), progressing to Professor of Gravitational Physics (1977).

He then held the position of Lucasian Professor of Mathematics (1979-2009). The chair held by Isaac Newton in 1663. From 2009, Stephen was employed as the Dennis Stanton Avery and Sally Tsui Wong-Avery Director of Research at DAMTP and founder of the Centre for Theoretical Cosmology at Cambridge.

Professor Hawking received over a dozen honorary degrees and many awards, medals and prizes including: the Commander of the Order of the British Empire (1982), the Wolf Foundation prize (1988), Companion of Honour (1989), Copley Medal (2006), the Presidential Medal of Freedom (2009), and the Fundamental Physics prize (2013). He was a fellow of the Royal Society and a member of the US National Academy of Science. Professor Stephen Hawking is regarded as one of the most brilliant theoretical physicists since Einstein.

Professor Hawking has written at least 19 books. In the book My Brief History he turned his gaze inward for a revealing look at his own life and intellectual evolution. The book recounts Hawking’s improbable journey, from his post-war London boyhood to his years of international acclaim and celebrity. Writing with humility and humour, Hawking opens up about the challenges that confronted him following his diagnosis of MND aged twenty-one. Tracing his development as a thinker, he explains how the prospect of an early death urged him onward through numerous intellectual breakthroughs, and talks about the genesis of his masterpiece A Brief History of Time – one of the iconic books of the twentieth century.

Motor Neurone Disease

In 1963 Stephen was diagnosed with ALS, a form of Motor Neurone Disease, shortly after his 21st birthday. In spite of being wheelchair-bound and dependent on a computerised voice system for communication, Stephen continued to combine family life (he has three children and three grandchildren) with his research into theoretical physics, in addition to an extensive programme of travel and public lectures. Thanks to the Zero-G Corporation, he experienced weightlessness in 2007 and always hoped to make it into space one day.

Over 420,000 of the world’s people are living with MND and approximately 140,000 cases are diagnosed worldwide each year. That’s 384 new cases every day. Closer to home, more than 2,000 people are living with MND in Australia, 58% who are under the age of 65.

Assistive Technology

Since 1997, Stephen Hawking’s computer-based communication system was sponsored and provided by Intel® Corporation. A tablet computer mounted on the arm of his wheelchair was powered by his wheelchair batteries, although the tablets internal battery kept the computer running if necessary. 

His main interface to the computer was through an open source program called ACAT. This provided a software keyboard on the screen. A cursor automatically scanned across this keyboard by row or by column. Characters could be selected by moving his cheek to stop the cursor. His cheek movement is detected by an infrared switch that was mounted on his spectacles. This switch was his only interface with the computer. When a sentence was built, it would be sent to a speech synthesizer.

Professor Hawking you will never be forgotten!

We are comforted by knowing you live on in many alternate futures according to the many-worlds interpretation of quantum mechanics!

~R.I.P.~