For many, the MND journey can be a rollercoaster and for Peter Chambers, his journey was no different.
Pete had symptoms for around 18-months leading into his diagnosis in December 2019. And as he explains, no stone was left unturned when investigating the cause of his symptoms.
"There were three or four things the neurologists were looking at and had to exclude. MND was always in the background, but it was never the likely diagnosis during that 18-month period,” he says. “When it was finally diagnosed as MND, there were tears, but it didn’t come as a complete and utter shock. I was kind of prepared for it, but when you hear those words, it’s not what you want to hear”.
Not wanting his diagnosis to define him, Pete has used it as the catalyst for his positive mindset and desire to help others.
“I wanted a legacy that is not negative. There’s no way I want people to look at me and remember me as being someone who couldn’t cope with this.”
I looked at my kids and my wife, and I wanted the legacy of ‘this is how you battle a disease such as this. This is how you face and cope with adversity.' I was driven by that really early on to say I know what the end result will be, but it’s not going to get me. It’s not going to define me.”
“We didn’t know MND Victoria existed, so to find it really quickly, to make a phone call and to receive a phone call back in a matter of hours and then for Fran [his MND Advisor/Support Coordinator] to be on our doorstep 48 hours later, 3 days before Christmas back in 2019, was extraordinary. To know that you’ve gone from something that you didn’t know existed to all this physical support really quickly is fantastic.”
Pete has now started what he calls his ‘MND Career’. He is using his voice to create a platform to advocate for others living with motor neurone disease.
“It means everything to me, that I can help others with my platform,” he says. “You see all the positive responses come in and it’s great to know people are thinking of you, but it also reinforces that what I’m doing is being seen by people and people are seeing it as a really positive thing for the community in general.”
“I want to make a commitment to give back to what I’m receiving. To be able to contribute in any way is not only an extension of what I’m doing, but it’s also an extension of what’s driving me to be an advocate for the work of MND Victoria and the recognition of the disease itself.”