Many of you would be aware by now that I was diagnosed with motor neurone disease (MND) in April, and I thought I might take this opportunity to highlight what this disease is and why you might be hearing a lot about it lately during the Big Freeze campaign, spearheaded by Neale Daniher and FightMND.
MND is a degenerative disease of the motor neurons, the nerve cells which control our body movement. With MND, something goes wrong with the motor neurons, they stop working and eventually die, so the messages from the brain can’t get through. This means the muscles that help us to move, speak, breathe and swallow stop working normally, and with no nerves to activate them, the muscles gradually weaken and waste.
The cause of MND is unknown and there is currently no effective treatment and no cure. This is why MND is known as the ‘Beast’.
For me, it started in my right fingers, then hand and then arm. I now have significant weakness in my right hand, but I am in the early stages. It took 14 months to diagnose as we looked at many possible causes. Because there is no single test for MND, diagnosing it is a process of exclusion. After many nerve conduction tests, blood tests, CT Scans, MRIs and physiotherapy, where I was tested for every possibility, unfortunately I have ultimately ended up with this diagnosis.
Over 500 Victorians are living with this disease and in Australia two new people are diagnosed each day and two people pass away. The average life expectancy is 27 months, but it is a disease where the patterns of weakness and rate of progression vary from person to person, so every individual living with it has a different story to tell.
FightMND have done a marvellous job raising awareness and funds to search for effective treatment and a cure. In the ten years since they began, they have raised over $100 million dollars, funding research work to find treatment and a cure. Over this time, FightMND has funded 15 clinical trials in Australia and supported 30 drugs in the drug development pipeline, giving sufferers and their families much hope.
Researchers tell me this is an exciting time as they are making progress all the time toward the goal of finding better treatments and a cure – but we aren’t there yet.
As well as the major Big Freeze at the ‘G, there have been so many amazing events locally and in surrounding areas of late to raise funds and awareness.
I want to thank and give a shout-out to the many local Big Freeze events, the Pakenham Lions Netball Club, Beaconsfield Junior Football Club, Officer Football and Netball Club, Berwick Springs Football Club, Beaconhills College, the bake sale at Pakenham United Football Club, the Hills MND Big Freeze in Emerald and so many more.
It is amazing how the entire community has got behind the fight against the Beast.
