Parkinson’s diagnosis is just
Charles Gilbert is an eloquent orator and a social soul, so much so that you would not realise that each day represents a challenge for this Mansfield resident.
“At home the kitchen floor is timber, and there is carpet in the lounge room, and for some unknown reason this difference in surface becomes an insurmountable obstacle,” Charles said.
“It’s almost as if there is an invisible barrier between the two rooms, and I physically can’t cross through the doorway between the two rooms.
“I have to sit and actually address the issue, and talk myself into walking through the doorway.
“It has ceased to be a natural movement, and is now very much a conscious choice.
“I have had to create new coping mechanisms and physical cues to complete daily tasks.”
Charles has Parkinson’s disease - a progressive nervous system disorder - and for him it manifests in the loss of automatic movement.
He effectively freezes in spot at times.
“When I was first diagnosed with Parkinson’s in 2014, it was both a relief and a time of anguish,” said Charles.
“There was the relief at knowing what was wrong, so that I could begin the process of dealing with it.
“And then there was the anguish on losing the ability to do things that were previously second nature.
“What was I going to do now?
“The neurologist that I went to see couldn’t really tell me much either.
“It was along the lines of take these tablets and I’ll see you in six months, and gauge how you are responding.
“For a Parkinson’s diagnosis is really just a process of elimination.”
With Parkinson’s disease, certain nerve cells or neurons in the brain gradually break down or die, resulting in a decrease of dopamine.
Dopamine acts as a chemical messenger in the brain, and when levels decrease the result is abnormal brain activity, leading to impaired movement and other symptoms.
“One of the problems with Parkinson’s is that they
are unsure as to exactly what causes it, and though symptoms may be similar from sufferer to sufferer, the diagnosis is based on ruling out any other possibilities first,” Charles said.
“So there is an MRI to check that your brain is okay.
“Then there are the blood tests and the nerve continuity test to see if there is anything wrong with your nervous system.
“When they find nothing significant, you are prescribed a course of Parkinson’s medication,
and if you show an improvement, you are diagnosed with Parkinson’s.”
Charles suspected he had a problem but initially he put it down to anxiety, and it was only when an old school friend commented that he was
dragging his left leg that he took his concerns to his GP.
“Most sufferers have a similar story,” Charles said.
“There is a slow build-up of symptoms and often you are completely unaware of them.”
June Mathieson reiterates this experience.
She started experiencing symptoms about two to three years ago, and she attributed it to the beginnings of arthritis and just getting old.
She found that she was struggling to do up her buttons, or even shampoo one side of her head.
She wasn’t aware that her posture had become a little stooped, and she found herself unable to slice a loaf of bread.
“I just couldn’t get my body to do these tasks,” June said.
“And I noticed as time passed that things were getting worse.
“It was on consulting my doctor, that I eventually was diagnosed with Parkinson’s.
“When I found out, I just sat on my bed and cried and cried.
“But since that moment, I haven’t really looked back.”
Within weeks of June taking the prescribed medicine, her husband began to notice a significant change in her symptoms, and June has embraced the medical advice to just keep moving - that exercise is essential to combat symptoms.
“Apparently dancing is incredibly beneficial for people who have
Parkinson’s,” June said. “And I love dancing.” It was through specialist exercise classes that June began to meet more people within the community who had also been diagnosed with Parkinson’s, and was introduced to members of the Parkinson’s Support Group.
“This has been particularly great, as it’s meeting other people with the disorder, which is just what I have wanted to do,” she said.
Charles Gilbert is the co-chairperson of the Parkinson’s Support Group in Mansfield, a role he shares with Jenny Heron.
The group offers social support, information and resources to people with Parkinson’s disease, their family and carers, and is an off-shoot of Parkinson’s Victoria, the overseeing organisation.
Charles can’t emphasise enough the importance of this social connection, as the isolating nature of the illness can be quite insidious, with depression and anxiety both byproducts of the disorder.
“This is an illness that really benefits from a support group, with the diagnosis only the beginning of the journey,” Charles said.
“To have members discuss their ailments and be reassured by other sufferers that these are completely normal symptoms, and then to have them give tips on how to deal with it.
“There can be a general lack of information and medical understanding on Parkinson’s, and this is when creating a sense of community is integral.
“You just need the tools to move forward.
“When I was first diagnosed we were in Melbourne, and I would sit around and just do nothing and my health declined rapidly.
“It was on joining the Parkinson’s Support Group in Ringwood and building that sense of community that my head space began to improve.
“And then on moving to Mansfield and embracing a more active lifestyle like mowing and painting, I got my body working again.”
And though there is currently no cure, keeping active and especially swimming along with physiotherapy and an anti-inflammatory diet all improve symptoms and improve quality of life.
“Everything helps,” said Charles.