Something that I have become aware of, since being diagnosed with Young Onset Parkinson’s Disease, is that there is nobody in my life to teach me how to ‘do’ Parkinson’s Disease! Throughout my life there have been my parents, family, friends, neighbours, colleagues, employers, trainers and people I know/knew to learn from and emulate. Today, I do not actually know a person in my physical world who has any form of Parkinson’s Disease.
My lovely Great Aunt had Parkinson’s, but she is a long time gone. There is nobody to watch, to learn from, to ask questions of or who might lead the way. No role model, physically present within my life for what I am now living or for what lies ahead. This is the same for many people with Parkinson’s, all over the world.
A First Step…
It makes me wonder what Neil Armstrong felt when he stepped out of the moon lander, to take those very first steps on another world; where nobody had walked before him. Sure, he understood what his new landscape was, for educated people had taught him the science, but it was only by making those first awe inspiring steps, himself, that taught him what it would truly be like. He had no role model, in his life, who had gone before him to teach him about what it would feel like, how it would be or how to respond to the actual experience.
Back to the Present:
Fortunately, I have been aware of the actor, Michael J. Fox since I was a teenage fan of his adventures in the ‘Back to the Future’ films. His adventures in those films inspired my imagination, as it did for my generation. During my two decades of tests, scans and monitoring, it was a revelation to me when, in September 2011, I bought ‘Lucky Man’; the autobiography of Michael J. Fox. For the first time, as I read through his own story, I felt a sense of euphoria. Finally, I had found somebody who, though he was describing himself, was describing me. This confirmed my own long held suspicion that I was living with Parkinson’s Disease. Not only that, but I had a role model for this aspect of myself. It was life changing.
Over the following six years, my numerous tests, scans and the monitoring of my symptoms continued. To my astonishment, I was diagnosed with Fibromyalgia in 2015 and, while I recognised the Parkinsonisms that are experienced within Fibromyalgia, there was always so much more that Fibromyalgia did not describe. It was only in 2017 that a referral to the lead Parkinson’s Neurologist at Ipswich Hospital, here in the English county of Suffolk, would finally confirm my correct diagnosis of Young Onset Parkinson’s Disease.
From July 2017, I started my Parkinson’s medication and I have shown considerable improvement in a number of key areas, since. This has enabled me to continue working, studying and living life. The illness is degenerative. I continue to face difficulty and worsening symptoms in some aspects of my health. Getting my diagnosis and the right medication has been a lifeline, for which I am truly grateful.
My question remains, though; where are the role models for the Parkinson’s community? I can name but a few famous men known to have/have had Parkinson’s and perhaps two famous women. Of them, barely any are activists or active role models for people with Parkinson’s. Michael J. Fox has been, and remains, an extraordinary leading light for the Parkinson’s community, for which I thank him beyond what words could truly describe. I hope somehow my words of heartfelt thanks will reach him one day.
For now, people with Parkinson’s are trying hard to form links and connections, much of which through online self-help groups and online communities. That is why it is my privilege to serve as one of the team that runs an online global support community on Facebook, for whom I have written this, and many other, articles.
If you, or someone you know, is living with Parkinson’s, please help inform your community about this disease and raise awareness about the ongoing need for funding, education, medical professionals, training, support workers, therapists, volunteers, carer support services and research into a cure.
© Dean Parsons. 2018.