‘Dance While You Can’— A personal recount on Parkinson’s
World Parkinson’s Day is on 11 April 2023, when we recognise the 14,000 Australians who are diagnosed with the disease each year. A disease categorised by both motor and non-motor deficiencies, it has no identifiable cause.
Resthaven Clinical Nurse Workforce Development, Julie Tansing, says, ‘Parkinson’s Disease is a complex degenerative neurological condition that can affect anyone. It is the second most-common neurological condition and is the fastest-growing brain disease in the world.’
‘Currently, there is no cure, and further to this, clients often don’t know much about the diagnosis.’
While this is the case, Resthaven Paradise & Eastern Community Services client, Mr Graham Edwards, is not one to shy away from the topic—in fact, he wrote a book about his personal experience: Dance While You Can.
Graham has written several books, some on his thoughts of the world, some on poems he comes up with at 2:30am when he can’t sleep, and some on pop idioms. His seventh and most-recent book is one of his favourites, and it is the most raw for both himself, and his family.
He explains, ‘Dance While You Can, is an unsettling but real insight into what my life looks like with the disease, and not just me, but my wife, Barbara, who subsequently lives with it too.’
‘I was diagnosed with Parkinson’s Disease 15 years ago, when I entered my 70s. I certainly wasn’t the first of my family with the diagnosis. My father, grandfather and great grandfather all lived with it, although, we didn’t speak about it. In fact, I only learned of my father’s diagnosis following his death.’
‘When I was diagnosed, I didn’t want to carry on the family legacy of not talking about it. I wanted to learn all about what I was living with, and I wanted my family to have the information as well.’
‘Every day is different, and mine and Barbara’s lives are limited to what it used to be, but we talk, and we are always discovering new ways to live and to make things easier.’
‘This is the thing—you cannot live with the disease without accepting the support around you, and it’s not just for my benefit, but for Barbara’s. Ego has no place when you have Parkinson’s Disease.’
While Graham’s book shares his thoughts on most things in his world, he dedicates his last chapter to the 10 million people around the world who are living with the debilitating disease:
MY THOUGHTS TO SHARE WITH YOU.
I want you to live a good life. But most importantly I want you to live a meaningful life. That is my main view and goal in these thoughts.
And you know what?
I know you can improve your life because I did it.
Yes, I still have bad days. Don’t get me wrong. I still get depressed and confused, but that is part of life.
However, I have never been more peaceful than today, and the more I live the more I discover how to live.
Graham explains, ‘You need to have something for yourself. Writing gives me purpose, and it’s nice to know I am leaving something in the world for my family for when I cannot communicate with them anymore.’
Graham is supported by Resthaven Paradise & Eastern Community Services multiple times a week, receiving transport services, and social group visits tailored to clients living with Parkinson’s Disease.
To learn more about Parkinson’s Disease and understanding those who are affected, please visit the Parkinson’s website or visit our Specialised Services page for helpful resources.