When first diagnosed with Parkinson’s disease I was given a prescription for medication, a piece of paper with a handwritten prognosis of what my life will be like over the next 10 years or so, told to go home and get my life in order, and take any future-planned holidays sooner rather than later.
Parkinson’s disease comes with no reassurance or even the offer of the possibility the disease can be controlled, let alone its progression stopped, and absolutely no suggestion of a cure. Basically it’s just all bad news. Very quickly you are robbed of some important human elements that are necessary in our lives… Hope and belief. It can be very easy to retreat and isolate yourself, trying to protect yourself by hiding your condition not only from other people but also yourself.
There was also no offer or suggestion of where I might find support and additional information. I knew very little about Parkinson’s disease and even less about what to expect in the future, when and how would new symptoms impact on my life, and also the pre-existing symptoms. Did you really just have to wait and accept the progression or was there something that could be done to ease the progression.
After 12 months I had become as frustrated and disillusioned knowing I had Parkinson’s. I was living with symptoms impacting on my life with no real diagnosis as to the cause for five years. I needed to make changes, find answers and take some sort of control of my life. I needed to move forward. I was in my early-50s, still working full-time, but the only information online seemed to support the elderly or those living for a number of years with Parkinson’s. Then I found Parkinson’s Victoria and everything started to change.
Within a matter of weeks, I no longer felt alone and lost. I now had real support and access to much more information than I had hoped for. I even learned that I had a different form of Parkinson’s — young (early) onset Parkinson’s — and was able to join a specific support group for people living with my type of condition. Best of all my family was also finding support.
Soon after becoming a member of Parkinson’s Victoria I was encouraged to participate in their annual fund and awareness raising event ‘A Walk in the Park’. This would not be an easy decision to attend as, like most people with Parkinson’s, I had limited to ‘absolutely need to know’ to protect yourself from embarrassment, prejudice (workplace), stigma, questions you couldn’t answer, questions you didn’t want to face or answer. Having Parkinson’s was like being a member of a secret society. To go from secrecy to publically supporting Parkinson’s Victoria would be a big step and thankfully it is one I took.
This veil of secrecy is very real even when you look at notable people with Parkinson’s. Alan Alda of M.A.S.H television series fame had Parkinson’s for five years and has only recently spoken up about it. Robin Williams kept it a secret for many years and only came to light after his death. Mohammed Ali never declared he had Parkinson’s. Neil Diamond revealed his Parkinson’s and then immediately cancelled concerts and has seemingly withdrawn from the public eye. Very few like Michael J Fox and Billy Connelly openly share their journeys.
‘A Walk in the Park’ allows people like me, living with Parkinson’s; the people that support me; and just people that care to come together, support and celebrate taking on the challenges of Parkinson’s, whatever that may be. Sometimes it’s the only day of the year that I can truly relax and be me. It’s a great day to catch up with friends in the Parkinson’s community, share stories and laugh, enjoy life. It’s a day I now look forward to and will never miss. The walk means so much to me and my need to help raise awareness and encourage others to participate and continue to live their life, that I am now proudly an ambassador for Parkinson’s Victoria.
I have seen the walk grow in numbers, though there are still a large number of people living with the disease who are hiding away. The funds and awareness generated go some way to providing much needed support and education, but it is never enough. My hope is that more of the 30,000 sufferers and/or their families, friends and support people will step out for a stroll with new friends and find real support.