We’re just you’re regular, run of the mill sort of people who have been diagnosed with Parkinson’s disease. Some of us at a tender young age!
First our reaction was shock, then a whirlpool of thoughts of future disability and the horror of being a social outcast – a bit like being a leper or having AIDs. Once we calmed down and decided we couldn’t just sit here and do nothing. We had to find out about the disease and DO something.
We decided to create a voice and establish a platform for people living with PD to tell their stories so that others living with the condition could see that there is a bright future despite the condition. We do this by holding events, create social media campaigns and publish a book.
An increasing number of people are being similarly diagnosed – even though you may not know it, someone in your family or group of friends knows someone with PD.
Once we started to talk to people about doing interviews and photoshoots, more people have come out of the woodwork, offering their help because of old grannie Edith who has the shakes or their friend George who like me has early onset PD.
So now we feel like it is all making sense. There is some awareness of PD but so much more still needs to be done.
We are working with a group of dedicated friends – see our website for their biographies www.itsnotfunny.com.au – and we are also in collaboration with many wonderful allies in generating global awareness for PD.
There is a wealth of people with whom we have already made contact with who are eager to jump on board and get involved.