J May and June and the hype around Big Freeze every year is an emotional rollercoaster for me. I am so grateful that Neale, Ian.. Pat and Ange had a vision about raising awareness and money for research and how amazing Australian people support the Big freeze every year.. I have been around every year…..
Why is longevity our goal?
This week I lost one of my best mates to Ovarian cancer, she lived with it for nearly 6 years, surgery and endless chemotherapy but remained remarkably positive and stoic and was in charge of her treatment and knew when enough was enough and managed to defy expectations of many and died peacefully at home…
Righto 2020 you can fuck off now and take Rona with you…
2020… What else can go wrong… Covid19 has been an incredible inconvenience to so many people in the world. Living in Victoria, it has been extremely difficult and having been living another ‘new normal’ since March 12th. Difficulties associated with living with a terminal illness requiring 24-hour care and remaining as safe as possible has…
Fun in iso…
Isolation has been a life-saving measure this last few weeks… The decision to go into total lockdown in our family home was made early March to ensure total accountability for people coming into contact with me directly. What a scary time. While the isolation is not new to me, as I spend most days at…
Life must go on… But it’s different
Since I last posted, many things have changed… As the disease continues to do its best work, it continues to try and take away my ability to live life to its fullest. While I try to remain as positive and up-beat as possible, there are lots of low days where things become all too hard….
Telling our story
A few months back, a family friend and producer with the ABC, Roisin McCann, approached me about sharing the importance of support when going through a life-altering illness. After months and hours of recording, “Baker and the Beast” was born. An insightful and brilliantly edited program was aired on the ABC two weeks ago. A…
The Tassie Convoy
While continuing to tick of my bucket list, overseas travel is now getting a little too difficult. We were trying to work out how we could do something fun without it being too hard. Therefore, a trip around Tasmania, my home state, was organised. The Spirit of Tasmania is an easy wheelchair accessible form of…
The village comes together
A lot of people ask me how our family manages when all the day to day activities along with running a household becomes difficult because the primary organiser is physically unable to complete any tasks. A great friend of mine introduced me to a website called Gather My Crew. This can I say has been…
Research Brings Hope.
Remaining positive is something I have tried to sustain day-to-day while my body is slowly failing me. It is hard to smile some days when I feel totally exhausted and frustrated about what lies ahead. I keep myself challenged by planning and looking forward to events, milestones and celebrations with my family and friends….
And she’s off…
It seems that progression of paralysis within the many types of MND is quite random and very individual. No two cases are identical in the pattern of degeneration. Since returning from the USA last October, the continual weakness in my arms has made it virtually impossible to use my mobility scooter due to decreased muscular…
Fundraising Momentum Continues to Build
4.5 million and rising is a fantastic result from the Big Freeze 3 campaign from Fight MND Foundation. The atmosphere on Monday at the MCG was electric. With beanies selling out online and within the first hour at Federation Square, nearly 1 million dollars was raised from this initiative alone. A very tactile and practical…
There’s no stopping me…
When time is of the essence, quotes like “make hay while the sun shines” or “a rolling stone gathers no moss” remain very appropriate. Lets just say there is no time to sit idle. The way I maintain my positive outlook on life is by looking forward and making plans. Last October after I lost my…
Life is good. 