Republished from the Motor Neurone Disease (MND) Australia website with kind permission. MND Australia is the national voice of people with motor neurone disease, their families and the countless others affected by the disease. You can make a donation to MND Australia via their website here.
On 24 February, 2016 MND NSW Board member Kirsten Harley gave a speech at Parliament House, Canberra. This is a transcript of Kirsten’s speech in which she talks about how MND has impacted her and her family’s life.
I wish to acknowledge the traditional owners and custodians of the land on which we meet today and pay respect to their elders, past present and future.
Each of the 2094 Australians living with MND has a story about the personal impact of MND. I’m Kirsten and my story starts four years ago in 2012.
Back then, I’d recently received my PhD in sociology and was in my third year of a postdoc at Sydney Uni. I was busy; researching, writing papers, applying for grants, organising workshops, supervising postgrads, and teaching about Australia’s health care system.
My daughter Kimi was in 1st class at the local primary school. Together with my husband Densil – also an academic – I juggled work with school pick ups, plaiting hair, swimming lessons, birthday parties, laundry, cooking dinner and checking spelling. I loved ocean swimming and running but was struggling with fitness. I dashed off to the gym or pool a few times each week, and attended a weekly stretching class.
The first thing I noticed was that my legs cramped when I tried to stretch my quads and calf muscles. I thought I should probably eat more bananas for potassium.
As the year rolled on I started tripping and falling; as I walked across campus, at home, once as I stepped onto a dusty street in Buenos Aires. I blamed my new multi-focals, my heavy backpack, my late nights writing and decided I’d tell my GP the next time I had to see her about something more important.
In November, I noticed my fingers twitching and cramping together. A week later, after a big conference day in Brisbane, a colleague and I set off on the 15 minute walk to dinner. I tripped and fell once, twice, three times during that walk. When I got back home I made an appointment with my lovely GP.
She carefully listened, checked my strength, and ordered blood tests. A couple of days later she rang me at work. The tests didn’t show what was wrong and she’d spoken to a neurologist whose junior colleague could fit me in the next Tuesday. I was terrified. That appointment brought more examinations and questions, more blood tests, an MRI, and nerve conduction studies. I had an appointment to see the neurologist on the first day back in the new year.
Of course, during this time I was Googling, wondering what might be wrong. The options seemed to range from vitamin deficiencies on one end, through diabetes and several serious but relatively treatable diseases, to motor neurone disease. I read that diagnosis of MND was difficult and lengthy and I also knew Stephen Hawking had lived with MND my whole life, so I didn’t focus on that yet. While we stayed at mum’s place over Christmas I read a Dawn French novel in which a character’s mother had died of MND. She called it the ‘muscle eating monster’. I paid attention to my body, alarmed to notice muscles twitching, weakness and – for the first time in my life – unexpected weight loss.
My husband came with me to that neurology appointment, on 7 January 2013. We sat in her office holding hands, in tears as she told us I have motor neurone disease. She told us that individuals vary, but typical life expectancy is 2–3 years.
My first thought was for our then 6 year old daughter. How do we tell her? How can it be possible that she will lose her mum? I spent that sleepless night online, including reading the MND Association’s excellent booklet on speaking with young children. When Kimi climbed into our bed the next morning I was better prepared to answer her questions honestly and gently. I had to tell her that MND is not the kind of disease that gets better; that scientists are trying their very hardest to understand it and fix it; that doctors don’t know why I have it but it’s not her fault; and that it won’t spread by us touching or hugging.
A very long month later I saw my now neurologist, the fabulous Dominic Rowe, who confirmed the diagnosis. His advice was to try to take a week at a time and make the most of each day.
With much support from my lovely family, friends, carers, health professionals and MND NSW I generally manage to do this, surrounded by humour and small joys every day.
I’m so proud of Kimi and Densil and how we’ve all adapted as I have deteriorated – sometimes gradually, sometimes with shocking suddenness. There’s currently no way of stopping MND’s relentless progress, so each day I know my body is as good as it will ever be.
I rarely focus on what we have lost in those three years, but here is a taste:
increasing disability and fatigue meant I had to retire decades early from work that I loved;
I’ve progressed through a walking stick, walking frame, mobility scooter and manual wheelchair;
I’ve had numerous falls, often reliant on ambos to get me up. Now I can’t walk or stand up at all;
I need others to shower me, take me to the toilet, brush my teeth, dress me and feed me;
my husband and I have had to move into separate beds;
I need two people to hoist me in and out of my hospital bed and most nights I wake him to adjust my position;
our family home and life has been taken over by disability equipment and the schedule of daily carers;
I retain full feeling, but can’t scratch my itches or move when I’m uncomfortable, cramping or in pain;
I have to ask for help all the time. My 9 year old does much more for me than I can do for her; and
two of the biggest losses for me – I can no longer swim and I can’t hug my family.
Any outing requires considerable help and planning. The logistics of getting to Canberra from Sydney today included my sister taking time off work to drive me in our wheelchair van, hiring carers to get me out of bed and ready this morning, finding a hotel with appropriate disability rooms and hiring a hoist and other equipment.
And yet, I am one of the lucky ones. My beautiful friend Bernice died last month, just 21 months after diagnosis. Three years on, I am lucky to still be alive.
Many of the 2094 Australians living with MND have lost the ability to speak. I am lucky to still have my voice. To finish, I’d like to use my voice to plead that MND be taken more seriously.
Our families need support now. We need money spent on providing proper and timely support and care for all Australians living with MND.
And we need hope for the future. More money must be invested into research towards understanding, and eventually curing, this ‘muscle eating monster’.
Thank you.
Watch excerpts of Kirsten’s speech below:
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