An inspiring story of a family’s battle with Parkinson’s and Jordan’s fundraising initiative to help find a cure.
My initial experience of Parkinson’s Disease was through my Grandfather. He had had PD for as long as I can remember and right up until he passed away (from an unrelated condition) when I was 15. I suppose I never really understood much about it back then, I just accepted that he was old and shaky. His last days in hospital were the only times I ever saw his body completely still. In my young mind, I figured that the Parkinson’s had finally given him a break and let him rest, when in reality it was probably the palliative drugs he received in his final days.
When my dad, Jack, was diagnosed at the age of 51 with PD, I was halfway through a two year backpacking adventure in Europe and although my Grandfather had died seven years previous, I still knew very little about PD except for the main characteristics of shaking and shuffling. Wikipedia and YouTube were still years away from being created so sources of information were not as easily accessible as they are now and although it affected me greatly, in a way, being so far away from my family, I was removed from confronting or thinking about it too much.
When I returned home however, PD had taken its toll on my Dad. While he was able to hide it well at the beginning like all PD sufferers, it soon caught up with him. But rather than feeling sorry for him like I thought I would, I felt proud of him for the way that he had accepted it and was still able to continue working and get on with his life without letting it hold him back. He didn’t let it affect his work and still does all the jobs around the house that he needs to, including some of the jobs that should probably be left to someone else! He stubbornly likes to do things himself, a genetic trait that has been generously passed down to me.
PD has made me contemplate genetics many times since Dad was diagnosed. Many of my better traits I can see are from my parents as I get older and am very thankful for them. Other traits probably come from them as well, but I choose not to attribute them to anyone! I have been told different things about Parkinson’s and whether it is passed down genetically or not. I think the general consensus is that if it is in your family history then you have a higher than average chance of getting it at some stage in your life but it doesn’t necessarily mean you will get it. One question I finally decided to ask of my parents while writing this story, was about my Grandfather. I am the third child in my family (with an older brother and sister). My Dad is the third child in his family and as my parents confirmed, my Grandfather was also the third eldest of all his siblings. While people tell me that this doesn’t necessarily increase the probability of me getting PD, it does weigh heavily on my mind sometimes.
If I do end up with Parkinson’s Disease I can only hope for two things. One, that enough money has been raised for Parkinson’s research to have found a cure, and two, that I can confront it head on with the same strength as my father has done.
My dreadlocks are a couple of years old now, and I have grown quite attached to them, but I have decided to cut them off to raise money for the Shake It Up Foundation and PD research. Not only that but to entice people to donate I offered the possibility of my dad to be the hairdresser. I’m not entirely sure how I will end up afterwards but I’m sure it will be worth it! Wish me luck!
The diagnosis 7 years ago, that I had Parkinson’s, was not a complete shock. My father lived with Parkinson’s for 13 years (dying of an unrelated condition) and there was some recognition, an echo of my father in the way I had begun ‘carrying’ my right arm and my deteriorating writing.
Timing for the diagnosis was not good. (Is it ever?) We were about to move from the city back to the country, to take up a new position as a Bank Manager in regional Victoria.
Fortunately for me, medical research had progressed since my father’s time, and I was able to undergo Deep Brain Stimulation surgery. This operation allowed me the capacity to continue working for several more years.
It is an ironic twist of fate that I now have a movement disorder, having been so physically active in my younger years – basketball (playing A grade, coaching), playing football and tennis, football umpiring and even playing ‘vets’ basketball as I got older. However, in spite of PD, my retirement has been busy (I don’t know how I really found the time to work), with lawn bowls and Rotary involvement and social coffees on Fridays!
Unfortunately the tyranny of distance means a regular six hour drive to see our neurologist. (There is a current campaign to have the state government make more PD specialist nurses available in country areas – presently only one covers the whole of northern Victoria – and this would I’m sure, alleviate the necessity of so many of our long haul trips.)
Given the possible genetic connection to Parkinson’s, and our three adult children, along with my wife Pep, have a vested interest in helping to further research into PD. We are quite pleased (on more than one level!) that our youngest son, Jordan, has been motivated to loose his beloved ‘dreadies’ on the 19th May, in order to raise funds via sponsorship for the Shake It Up Australia Foundation, to further vital research. He has decided that I should do the honours in cutting his hair – let’s hope my meds have kicked in!