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

By Carolyn Hutchison, Bendigo

Carolyn Hutchison

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 while my son was having his treatment. During the time from 2003 to 2012 I went back to TAFE to study Information Technology, Business, Business admin, Project Management and Education Support completing all courses with Qualifications. I was accepted into Diploma of Children’s services for 2013 however could not afford the fees to study and was attending compulsory Job Network Training as well as working 3 days a week in a Pizza shop washing dishes, taking orders and doing some kitchen work.

I first noticed symptoms while working in the pizza shop, I was having difficulty holding things like the pen to write orders. My fingers would cramp while stirring food on the stove and it was becoming difficult holding dishes to wash and dry them. My legs would cramp numerous times of a night when I was trying to sleep and I would get tingling and numbness in my fingers, especially in my dominant right hand. Visits to my GP proved fruitless as every test came back fine.

In August 2013 I secured a permanent part time job at Brumby’s bakery and my hand deteriorated more. The muscles were wasting away and I lost the use of my thumb. My GP sent me to the local Neurologist (who I had seen for Ulnar Nerve issues previously) and the more invasive tests began. I had EMG’s which showed no blockages, I went to Cabrini for a second opinion which determined I did have muscle atrophy which was clearly visible and it was slowly spreading into my forearm. Both neurologists agreed to try IVIG (intravenous Immunoglobulin) treatment for 3 months looking for Multifocal Motor Neuropathy (MMN). This treatment did not help and I was sent for an MRI and a Lumbar Puncture which also provided no insight. I visited my local Neurologist again on June 1st 2016 and was diagnosed with Progressive Muscular Atrophy (PMA) which is a slow progressing form of MND. I left the specialists confused and not knowing what I was meant to do next.

I got home, started searching the internet for some answers and was coming up with very little, when I found MND Victoria’s site and decided to message them. If it were not for you I would have had no idea where to go or who to speak to. I gave up working on August 22nd 2016, 3 years to the day from when I started as it was the repetitive twist tying bread bags that had affected my hand.

My PMA still remains slow but it is spreading to my other limbs. I am still able to do most things, it is just more awkward now and very frustrating. I can’t express how grateful I am to MND Victoria and especially Eric my Regional Advisor for all the support, care and invaluable information you have provided me since my diagnosis.


Gary has been involved with MND Victoria since the 90s. He has been converting MND Victoria Newsletter into online news for worldwide audiences for 10 years...


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.


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 ...


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.


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.


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.


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


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


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


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.


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 ...


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.


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.


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


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 ...


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.


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 ...


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 ...


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.


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?


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

"It’s the understanding, knowing that when I phone you, MND Victoria always understands ...
I remember the first time I ever heard the words “Motor Neurone Disease”.
On March 28 this year my partner of 21 years died in my arms. She was 54 years old when diagnosed in June 2016
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.
My husband dances with me, but not as often as he used too, and he doesn’t like the fast songs.
Being a good brother he said nothing about the change but assumed that little brother, at age 77 had taken up the booze.
Neither John nor I expected this ... when the future with MND was explained it felt like we’d been hit by an express train.
When Cheryl received the diagnosis of MND in 2002 she was 32 years old, married and had a 3-year-old son, Mark.
I have been let’s say, "fortunate" enough to have had MND for nine years, instead of the average two ...
As Brett’s disease was progressing very fast, his life expectancy was about nine months.
Carol and I had retired from a lifetime of farming and were planning to grow old together ...