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

By Ron Camier

Andy, Ron and family

On Friday 1st December 2017, despite extreme weather warnings, about 400~450 people gathered at Eternity Church in Morwell to celebrate the life of Andrea Camier. Her extraordinarily loving and caring nature, beaming smile and sparkling personality had impacted many people.

As well as adoring her husband, three married children and seven grandchildren, she had been like a mother to many. This was through her work supporting families as a speech pathologist, through her fun engagement with people in our 4WD tour business, through her enthusiastic organisation of community festivals and church outreach events, through caring for young people living in our home, and through simply meeting and greeting people in the streets, schools and shops around our town. It didn’t matter to her whether people were rich and famous, or poor and needy, everyone was of value. Andy lived out her Christian faith through everyday practicalities.

Her MND journey began after noticing difficulties with slurring speech. Medical investigations led to a local neurologist in May 2015, who suggested motor neurone disease as a possible cause. A quick search on the internet led me to the realisation that her symptoms ‘ticked all the boxes’, and I probably alarmed all the family with the information that the likely survival time would be 2~5 years. (In fact she had 2½ years from this date.) The diagnosis, by elimination of other possible ailments, was confirmed at Bethlehem Hospital, the state centre for neurological diseases in Melbourne, in November 2015. We learned that there was no known cure or cause, although there was suspicion of anti-cholesterol medication prescribed a few months earlier.

We were linked with MND Victoria, LRH allied health, LCHS palliative care and DHHS funding support. So with additional help from family, friends and her employer we were well looked after through this terrible journey. I was given information on what to expect in stages: 1. Diagnosis – loss of our future, 2. Physical decline – loss of function, 3. Death – loss of life partner, and 4. Emptiness – loss of activity.

We were advised to have a good holiday because it would be our last, so a campervan tour of New Zealand was undertaken. This was like a second honeymoon and a great adventure with many amusing episodes brought about by Andy’s communication difficulties and my interest in ‘getting off the beaten track’.

Immediately upon our return in April 2016, Andy was admitted to the Austin Hospital to be fitted with a ventilator to assist breathing, and a PEG tube into her stomach to assist nutrition. Although confronting, she happily accepted that this was necessary to ‘see her grandchildren growing up’. As her speech disappeared she began using an iPad with voice synthesiser to communicate.

Over the next 18 months her arms, hands and neck muscles stopped working, and care requirements increased to 24/7 with professional carers coming 5 days/week, and tremendous help from family and friends. So she was still the centrepiece of our home, with numerous visitors, in sickness as she had been in health. Australia Post, local florists and our internet service had a pretty heavy workout. The night before she passed away she had breathing difficulties and was taken by ambulance to LRH. The following morning, 25th November, she had a far-away look in her eyes, then peacefully closed them.

Judging by the avalanche of tributes received, Andy’s selflessness inspired many, and she will be greatly missed by family, friends and the communities she touched.

/An%20Ode%20to%20MND%20-%20Poetry

A poem about daily life whilst living with motor neurone disease by the late Joy Blakely ...

/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. Nana was diagnosed 8 months earlier.

/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 ...