Connections | Issue 1 2018

At 44 Ronald Jansen was surprised by his diagnosis with Parkinson’s Disease, in this issue of
Connections, he recounts the tale and how it has impacted his life.
At 44, I was a happily married man with 3 young children
and a good job.
MY STORY
I’m 44! Are You Sure It’s PD?
But an unwelcome intruder came into our lives - a progressively worsening
tremor in my left hand. After two years of ignoring it, the tremor had gotten
to the point that I felt I needed to see our Doctor.
Any one of a vast menu of diseases could have caused the tremor and my
wife and I were getting more and more concerned as we read about the
possible causes prior to the appointment.
When I was asked to get an MRI scan, we really became worried.
My first appointment with a Neurologist is one that is etched in my mind.
After a few simple tests, he asked me to sit down and it was just after 5.30pm on 8 March, 2004, that the he informed
me that I had early-onset PD. It felt like a hammer had hit my chest. Shocked, I barely recall what else he said.
I drove home and tearfully told my wife. We both barely slept that night.
We told the children at dinner the next day, my son who was eight years old dubbed it “the dinner from hell” and I
couldn’t have agreed more. It broke my heart to see the hurt I felt I had inflicted on my whole family. It still does.
A big black cloud had descended over me and over our previously happy family.
Acceptance of my diagnosis was hard. I did not ask to be “PD-man” and at the time I really had no idea what the
diagnosis would actually mean for us. I avoided telling most people at first, partly because I was
embarrassed and partly because I did not know what I would say to them.
I skulked around for a week or two after diagnosis. I think I had read and re-read everything available about PD at least
three times! It focussed mostly on older people, loss of mobility, balance, rigidity and tremors, medication, side effects,
deep brain stimulation, that it was progressive, could cause dementia, and that there was no cure! Great stuff for an
ignorant, newly diagnosed early-onset PDer.
I became more and more sullen until my wife saved me from my gloomy self.
She gave me some articles that focussed more on what PD meant for those who were diagnosed at a younger age.
They collectively highlighted that many early-onset PDers continued to work and live with their families for many years
after being diagnosed. She also arranged a chat with the son of a 70 year man who had lived with the disease for 40
years. Apparently, he was still riding a scooter in his European home town.
We also attended a few “Parkinson’s At Work” meetings. That gave us a little more hope as we met people who were
diagnosed young but who had continued on with employment for many years, one for 17 years post diagnosis.
What was interesting to me was that it was hard tell which of the group’s participants had PD and which ones did not.
They were all relatively normal! That really was good to see for someone, ie me, who was ignorant of PD and uncertain
as to whether they had symptoms that made others stare, stay away or pass some sort of disparaging comment.
A decade and a half has passed since that time. I have survived the symptoms and stares! I am 58, my kids are now
adults with university degrees and we have our first grandchild!
The symptoms of PD are without a doubt a pain in the butt. They frustrated me to no end. It is not easy to live with and
nor am I when the grumpy old man within me breaks out. But I now know that life goes on post a PD diagnosis. I didn’t
suddenly age thirty
or so years, get dementia overnight or lose my ability to walk, talk or work the day after diagnosis. Apart from the shock,
nothing much changed the day of my diagnosis, the week and months after. Life kept keeping on.
10
Parkinson’s Queensland Inc.