Until there's a cure ... there's care

Social work student, AilishMy 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.~

/Caring%20and%20Sharing

Maureen, one of our wonderful volunteers and a past carer of someone living with motor neurone disease wrote this poem 'Caring and Sharing' about her experience during the time.

/Spotlight%20on%20Carers

My beautiful son Robert, Robbie to all who know him, was diagnosed in May 2017 and our world hasn't been the same. At the start, life wasn't too bad as Robbie was fiercely independent ...

/28%20Years%20Making%20A%20World%20Of%20Difference

As I step back from my role as a volunteer in the fundraising area, I’ve been thinking of all the past efforts that have helped make the Association so successful.

/Letter%20to%20Mark

I find myself engrossed in wonderful, now precious, memories. I laugh at flashbacks which come to mind. I laugh, then I cry, remembering you're gone.

/June's%20MND%20Story

I am 86 years old and up until June 2018, I was a reasonably healthy person who led an active life and loved communicating/ socialising with family and friends.

/MND%20Equipment%20Volunteers

Did you know that we have two equipment volunteers who help our Equipment team supporting people...

/An%20Ode%20to%20MND%20-%20A%20poem%20by%20Joy%20Blakely

An Ode to MND is a poem about daily life whilst living with motor neurone disease written by Joy who had MND.

/Marcus%20+%20Harry's%20MND%20Mission

My two boys Marcus (10 years old) and Harry (8 years old) unfortunately lost their nana to MND in April 2018.

/Cosmologist,%20space%20traveller,%20hero!

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.

/Goodbye%20Friends

Brian was the last to go. He too died from motor neurone disease – that is the disease whereby the neurons stop working and cannot convey messages to the muscles ...

/Dean%20+%20Paula's%20MND%20Story

41 year old Dean is married to his childhood sweetheart Paula and father to two teenage boys ... in July 2015 their life came to a halt when Dean was diagnosed with MND.

/Pam's%20MND%20Story

When Pam’s son was diagnosed with MND three years ago, she didn’t know what to do. As a mother she felt so useless, she couldn’t do anything except love him.

/"Living%20the%20Dream"

Gavin McCann was diagnosed with motor neurone disease in January 2015. Being told this news is devastating for anyone. Gavin however, used this news to live out his long time dream.

/Andy's%20MND%20Journey

Andy's MND journey began after noticing difficulties with slurring speech. Medical investigations led to a local neurologist in May 2015, who suggested motor neurone disease ...

/Diagnosed%20with%20MND%20-%201%20June%202016

I was a stay at home single mum with 3 children aged 5, 7 and 9 in 2003 and my youngest was recovering from cancer treatment. I had left my husband in 2002 ...

/Kokoda%20Challenge%20-%20meet%20Beck%20Mason!

Rebecca Mason more than deserves the title of legend. Beck lives in Portland but makes the trip up to Geelong regularly to be with her best friend who has MND.

/Funny%20story!

Went to a medical appointment recently at our local medical centre in Emerald, Vic, in my Frontier Tilt in Space wheelchair supplied by MND Vic ...

/Karen%20and%20Geoff's%20MND%20Story

Not only is this disease so horrible to endure for the sufferer of MND. But the other side of the coin is the partner and family trying to cope with the emotional issues ...

/Always%20remain%20hopeful,%20fight%20and%20never%20give%20up

This experience not only significantly impacted my life, but also helped me develop as a person and become who I am today and the person I will become tomorrow.

/Dealing%20with%20Motor%20Neurone%20Disease

I can talk, I can walk, I can swallow, I can read, I can write, I can itch my head if I need to, I can laugh when I want to. I can wipe my own tears. You're thinking, what's the big deal?

/Mixed%20Emotions

A poem written by one of our volunteers about her experience of motor neurone disease ...

/Pam's%20MND%20story
"It’s the understanding, knowing that when I phone you, MND Victoria always understands ...
/My%20Story%20about%20MND%20and%20how%20it%20has%20Effected%20my%20Life
I remember the first time I ever heard the words “Motor Neurone Disease”.
/Liz%20and%20Rob's%20MND%20story
On March 28 this year my partner of 21 years died in my arms. She was 54 years old when diagnosed in June 2016
/Walking%20Back%20Home
Last year’s Camino walk was raising money for those that can’t do it and it was in memory of my husband and his father.
/Wolfgang’s%20journey%20and%20what%20to%20expect
My husband dances with me, but not as often as he used too, and he doesn’t like the fast songs.
/In%202012,%20I%20was%20one%20in%20a%20Million*
Being a good brother he said nothing about the change but assumed that little brother, at age 77 had taken up the booze.
/Joy's%20MND%20Story
Neither John nor I expected this ... when the future with MND was explained it felt like we’d been hit by an express train.
/Cheryl's%20MND%20story
When Cheryl received the diagnosis of MND in 2002 she was 32 years old, married and had a 3-year-old son, Mark.
/Living%20well%20with%20MND
I have been let’s say, "fortunate" enough to have had MND for nine years, instead of the average two ...
/Brett,%20Elizabeth%20and%20Anneka’s%20MND%20story
As Brett’s disease was progressing very fast, his life expectancy was about nine months.
/Barry%20and%20Carol’s%20MND%20story
Carol and I had retired from a lifetime of farming and were planning to grow old together ...