PERSONAL STORY

In 2001 I was 31 years old. I had three children, none of them yet at school, and a shaky hand. I really didn’t have time for a shaky hand. I was working as a Clinical Trials Administrator, caring for my girls and as every mother does, putting myself way down the list.

My GP phoned me after my MRI and requested an urgent appointment. Fairly certain I had a brain tumour I took my referral on to the neurosurgeon, who suggested, in the absence of any other ideas, shunting fluid from my brain. Now cleared of the possibility of a tumour, and not at all impressed with the possibility of a doctor sticking a tube in my skull, I requested a referral on to a neurologist. Within three weeks of my MRI I was told I had Parkinson’s Disease.

 

Fairly sure, that I had had my scan mixed with that of an old man or Michael J Fox, I did not, at that point, believe I had Parkinsons. I just trusted the professionals and started medications.  This was great. My hand stopped shaking.

 

Within three weeks of my MRI, I was diagnosed, on medication and accepted into tertiary studies. Of course, what else could I do – I really felt at that point that if I stopped living, I would surely die. So I went to university.  Within 3 weeks of being diagnosed, I began my studies, took my meds, cared for my family and put my head in the sand.  Over the next 6 years, it stayed there.  As I experienced debilitating side effects and drug reactions both physical and psychological, I continued as I had begun - afraid to stop, afraid to think about it and frantically busy.

 

Until one day, I simply couldn’t pretend anymore.  I was increasingly scared, feeling incredibly isolated and knew I had wished it away long enough. On that day, I began again. I phoned Parkinsons Victoria and said hello. I phoned a support group and said hello.  I phoned my GP and then a counselor and said hello to them all. I could not have felt lower, and knew change was imminent.  I had to face 6 years of denial, and that wasn’t easy.

 

But using my new support network, I found that a new energy that I could use to help others, with the hope that their time in the sand wouldn’t be so long. About the same time, I finished my teaching degree and I stumbled across a video competition being run by the World Parkinson’s Congress to tell your PD story.

 

Making a film about my life with PD changed my outlook completely. I went from denying my condition even to myself, to telling the world. Within weeks of the video hitting You Tube, the film won an honourable mention, I was liasing with media and packing my bags for the Congress in Glasgow.  I learnt in Glasgow  that I am the best advocate I have to help bring a voice to those affected by PD and decided to dedicate my time to supporting others with early onset PD. Recently, I became an ambassador for the next World Parkinsons Congress in Montreal in 2013. I believe that everyone with PD has a duty to support each other, for no one understands your journey quite like someone on the same road.