At 33, Sharon felt an ache in her leg. Within two years, she couldn’t walk or speak due to a disease that used to be vanishingly rare in young people

She was playing netball when she first noticed something wasn’t right.

‘Looking back, I do remember feeling just a little bit more uncoordinated than normal – kind of like my body couldn’t quite make the move that my brain was trying to tell me to make,’ Sharon Kirkwood, now 41, tells Daily Mail. 

Then aged 34, she was a fit mother of two young sons – Harrison, four, and Hayden, two – and loved playing tennis and squash, but especially netball. 

She was also working as a teacher, sometimes pulling 12-hour days and juggling childcare responsibilities while her husband Adam also worked full-time an hour away from their home in Canberra.

So she put the blip down to tiredness.

‘I just thought I was getting older and uncoordinated,’ she says. 

But a few months later, in September 2017, Sharon started to notice discomfort in her right leg. Soon, she was limping.

‘Later that year, we had weekend trips away to Newcastle and Melbourne where I noticed the limp more and I began to struggle to keep my sandal on my right foot.

‘I went to a doctor who gave me a referral for a scan, but life was busy and I didn’t end up having one.’

Eventually, during school holidays, she found time to make an appointment. She was sent for scans to initially check for multiple sclerosis or a brain tumour. 

These were clear, but still seeking answers, Sharon was referred to a neurologist. 

At that appointment, the neurologist immediately detected weakness in Sharon’s arms and legs. 

‘When I realised this, I actually started crying in his office because it kind of made me finally go, “S***, something is definitely wrong,”‘ she says.

But, despite the troubling symptoms, the neurologist wasn’t convinced of a diagnosis.

When tests didn’t find a cause for her weakening limbs, he told Sharon her symptoms were likely ‘psychosomatic’ and she should ‘try yoga and relax more’.

When Sharon raised the possibility of a neurological condition like motor neurone disease, he laughed and told her she was a ‘spring chicken’ who didn’t need to worry.

But Sharon was worried, so she went to see another neurologist for a second opinion.

This neurologist took her concerns seriously and referred her to an MND specialist.

MND is a progressive neurological disorder that attacks the nerve cells controlling muscles used for movement, speech, breathing, and swallowing.

As the nerves degenerate, muscles weaken and waste away, eventually leading to complete paralysis. MND is terminal, with most people dying within two to five years of diagnosis.

Famous sufferers include English theoretical physicist Stephen Hawking, American baseball star Lou Gehrig, and AFL icon Neale Daniher.

While Sharon didn’t want to believe this was what she had, all the signs were there.

She had started having fasciculations – constant, involuntary muscle twitching – which she knew was a ‘bad sign and left me feeling sick with worry’.

At her appointment with the MND specialist in April 2018, she was given the ‘very blunt diagnosis’ she had been expecting but hoped would never come: MND. 

While it was life-changing news, but Sharon was prepared for it. 

‘It wasn’t as bad as I had imagined,’ she shares.  

‘I’m quite a practical person, so it was probably more of a relief to actually have an answer and be able to start taking action. It was obviously still devastating to receive such an awful diagnosis but I thought my life would be completely ruined when I heard those words, but thankfully that wasn’t the case.’ 

MND has been described by leading neurologist Dominic Rowe, as ‘the cruellest disease imaginable’, and Sharon can attest to that, describing the first two or three years after her diagnosis as the most challenging.

‘I was still trying to live a relatively normal life – working, parenting, socialising and running the house on top of my many appointments,’ she says.

‘At the same time, I was experiencing loss after loss. I lost the ability to walk unaided, dress myself, go to the toilet myself, eat and drink, talk, drive, pick up my sons, dress them…’

Sharon was grateful her children were very young when she was diagnosed so she didn’t feel the need to sit them down and tell them what was happening.

‘It was more gradual discussions as I progressed. So I’d say, “Mummy’s legs don’t work properly anymore and that’s why she can’t walk very fast.” Then gradually we’d start actually using the term MND,’ she says. 

But it didn’t get any easier.

‘A few years ago, we were at the stage where my eldest had started to show signs at home and school that he was worried about me, but he was reluctant to verbalise what his worries were,’ she says.

‘After a few weeks, we were finally able to get out of him that he was worried about me dying.’

Now, seven years on from her diagnosis, Sharon has lost the ability to do ‘almost every single physical task’.

‘I can press buttons on my lap to operate my robot feeding machine and drive my wheelchair myself if someone puts my hand up on the control. I can also still weight-bear to stand for a short time to transfer between my wheelchair and commode or bed,’ she says.

‘Otherwise, I need help for basically every other physical task and can only be left on my own for one or two hours in the early afternoon.

‘This has been one of the most challenging parts, losing my independence and having to rely on other people. Everything taking so much longer has also been testing on my patience and it can be very frustrating. I also hate not be able to parent my kids the same way that I would have.’ 

Sharon has also lost her speech – but is able to use an ‘eye-gaze’ computer that helps her communicate by converting minute movements of the eye into spoken words. 

‘It’s not until you lose both your voice and use of your hands that you realise how important they are in defining who you are in terms of your interaction, communication and relationships with others.

‘MND is just so completely consuming. It impacts every part of my body and every aspect of my life.’ 

Sharon has a huge care team that includes her GP, neurologist, urologist, gastroenterologist, respiratory specialist, palliative care nurses, counsellor, speech pathologist and more.

‘I feel like I work more than a full-time job trying to coordinate my care and support workers,’ she says. 

Despite it all, Sharon has a remarkably positive attitude. 

‘I try to focus on finding things to be grateful for and I can find them every day. This new life really changes your perception and I find joy out of such simple things. I cherish almost every single moment with the boys and Adam,’ she says.

‘Right from the day I was diagnosed, I felt as though I had a choice, as many of us will have in our lives. I can choose to be miserable or choose to be happy. MND has taken so much from me, but I refuse to let it take my positive attitude. 

‘I just wish I could go back and experience greater appreciation for all those things I used to take for granted.’

Ducking to the shops, going through the drive-thru and eating in the car, having a walk, and playing on the trampoline with her sons – they are just some of the freedoms she misses most

While there is no cure for MND, Sharon spends much of her time raising awareness for research and clinical trials.