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

Grace-Ann and her Uncle Graham

By Grace-Ann

An experience that had a significant impact on my life would be the passing of my Uncle Graham. I had never experienced a death before this, so it affected my life majorly. He had Motor Neurone Disease. The reason his death impacted me so greatly was because he had become such a large influence on me. I had looked up to him for so many years. I had admired his strengths and determination in his fight with MND.

Throughout his fight he suffered a great deal, which hurt our whole family enormously. Through this he has become a role model to me. During the pain and the suffering, he never lost his hope, his humour or his cheeky grin! That grin became his trademark and it is something we will all remember him by. He taught me that even when times become challenging, it is important to stay true to who you are and to never change.

He possessed many qualities that I aspire to have; qualities of hope, humour, strength and persistence. This has helped me develop as a person. To have aspirations of qualities that you admire and you see first hand how they help and inspire others, develops a drive to embrace these certain qualities. This circumstance helped me to realise not only how lucky I am to have the amount of love and support I have, but how much love and support I can give to others. It helped me realise my strength. That I could not only take care of myself during this tough time, but that I could help and support others during my time of grieving.

Even though this experience may have been painful and not pleasant, I have learnt from it. I learnt from Uncle Graham to always remain hopeful, to fight and never give up. I learnt to be grateful for what I have; family, friends. But I have most importantly learnt that hard times are inevitable. That everyone goes through times they want to give up; times they feel worthless, as if there is no hope. I feel that it is the perfect time to think about what we have; whether it be the time we have, the memories we have, or something as simple as; I have my family, I have my friends. I am surrounded by love and support and that's all I need. I learnt that whatever I may be going through I will always have someone to talk to, someone to help me get through the hard times, that I am not alone.

Death can be a sensitive topic and one most don't want to share or talk about, but I feel that everyone will experience deaths and although not enjoyable, through them we learn how to adapt, how to mourn, how to help others and importantly; how to help yourself. To maintain mental health and to take care of yourself is such a critical lesson to all aspects of life. When we share our experiences and feelings, we can help others to embrace it and to cope. We make it OK to be feeling the way we are feeling and not to suppress those emotions.

When I read the above prompt, I knew straight away this is what I wanted to write about. Many people will have that stand out moment in their life that they are shaped by and as a result develop as a person. This was my stand out moment. It so drastically changed my life, because I knew that my Uncle Graham was the sort of person I aspired to be. Due to this, I live everyday thinking of the qualities I long for and the inspiration I got from my Uncle. 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. 

This story was originally published in MND News: January/February 2018.

Read more MND stories:


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...


"Being as positive as possible has helped me to cope with my situation. I definitely appreciate how modern equipment contributes to making life easier."


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 ...