I landed hard on my knee and my first thought was “well that was a bit stupid”! It was a strange sensation and I initially thought I’d done some nerve damage. Possibly there may have been some muscle issues, but it didn’t slow me down. At that time I was living in Brisbane and regularly flying back and forth to Melbourne for work, plus filling in teaching extra fitness classes as I went.
But, I knew that something still wasn’t right. We started with an MRI and a range of other investigations. I was relieved when I got the all clear. Great, everything is healthy I’d thought. But no….
It’d taken 3 neurologists to figure out what was wrong. The first neurologist thought it was definitely muscle related. “I’m a PT, I kind of know my muscles!” I told him. And I knew that wasn’t it. The second, well, I don’t actually think he had the balls to tell me what he thought it was.
Back in Melbourne one week in September 2017, I met with a neurology professor who pretty quickly figured things out! “Thank the lord” I thought! But, he was quick to let me know that I was not going to like what he told me… and there it was.
It hit me. There is no cure.
Looking at the symptoms, I could not believe it! An MND diagnosis is a pretty hard thing to swallow being told on average it’s 2-5 years to live… and I’m only 53. People are affected in different ways and no two Motor Neurone patients are the same. I realise that’s what is really tricky for these neurologists, they don’t really know what to do with you. So began my worldwide search for anything that may help to slow the progression.
For me, it all started in the leg muscles – a double whammy because I loved running, burpees, cycling and basically anything that kept me on the move. Symptoms soon developed in my hands, impacting my grip. My left was the first to go which was a pain as it’s my dominant hand. It left my writing looking like I was back in kindergarten. Simple things like brushing teeth, opening water bottles and lifting basic objects soon became too difficult.
Although I’ve found the doctors along my journey very knowledgeable, their only suggestion is drugs which may prolong my life by possibly 2-3 months, but with the added bonus of horrible side effects! Plus, to add insult to injury, their advice is expensive with little reimbursement. So this pushed me to seek alternative treatments in a bid to slow the progression of this disease. Of course, these complementary therapies are not covered by any insurances, but I didn’t let that stop me!
I would be totally lost without the support of my husband Steve. He was forced to scale back on his workload to become my full-time carer, cooking all meals, cleaning and just generally being there to help me get through the day.
I decided to tell my story at the insistence of my awesome family and close friends, and in the hope that it may provide inspiration through sharing the challenges I’ve faced on my journey.