It is indiscriminate, and every diagnosis affects a much larger circle of family and friends. From there, caring people will push for a continuing focus on research. (already five decades!) People in the technology sector work to create and develop solutions to every-day challenges faced by people with MND, as they wait for a breakthrough.
MND kills one third of people within a year and more than half within two years of diagnosis, although progress and survival times vary, according to the symptoms. It attacks the nerves that control movement so muscles get weaker and waste away until they no longer work. All kinds of MND damage nerve cells in the brain and spinal cord. It does not usually affect the senses, such as sight, hearing and feelings.
MND can leave people locked in a failing body, unable to move, talk, swallow, and eventually breathe. About one third of those diagnosed will experience mild cognitive change causing difficulties with planning, decision making and language.
Although the brain and nervous system is complicated and there is still a lot to learn, there is increasing confidence that scientists are on the brink of discovering effective treatments. This is due to a far greater knowledge of the roles that genes play in both health and disease. There is a need to speed up the progress of trial opportunities so people can access effective new treatments as quickly as possible.
In the meantime, they need high quality care and support. MND has a devastating impact on those diagnosed and those who look after and love them. It affects each person differently, causing many differing needs.
We all have a 1 in 300 lifetime risk of developing MND. In Australia, two people will be diagnosed every day and two will die with it. At any one time, around 2,100 people are living with MND. A cure is out there and researchers in Australia and around the world are working hard to find it.
Whether you are an AFL fan or otherwise, it would be very difficult to not be aware of former Essendon great and Melbourne coach, Neale Daniher’s relentless fight against MND. For eight years he has been leading the fight and raising awareness and funds for research -- $50 million so far! Of course, the football community has supported his efforts over that time but gradually, the larger community has been inspired by Neale’s determination and many now wear ‘’Big Freeze’’ beanies after donating to the cause. Watch Channel 7 this weekend to see celebrities taking the plunge into an ice pool at the MCG on Monday – a fun fundraiser!
Mary Pianta, Disabilty Contact Coordinator
