As a mum of three beautiful girls – Vanessa, then 20, Kathryn, 18, and Danielle, eight – and with a busy job as a teacher’s aide, it didn’t bear thinking about.
Worried, I went to see a neurologist. ‘I don’t think it’s Parkinson’s,’ he reassured me. ‘You’re too young.’ Typically, the condition affects people over 65. Instead, I was diagnosed with essential tremor, a nerve disorder which causes involuntary shaking.
I was given medication, but I couldn’t help thinking there was more to my diagnosis. ‘What about Michael J Fox?’ I said to Alan. ‘He got Parkinson’s at 29.’ I tried my best just to brush it off, but as the weeks went by, my shaking got worse. I need a second opinion, I thought as my hands trembled around a cup of tea.
So in March 2014 I went to see a specialist for further testing. ‘I’m afraid you do have early-onset Parkinson’s,’ he said. A wave of emotion hit me. What would my future hold? Would I still be able to care for the girls? But I also felt vindicated – I’d been right all along.
I need a second opinion, I thought.
Alan and the girls were devastated but vowed to support me.
‘We’ll get through this together,’ Alan said.
Sadly, there is no cure for Parkinson’s, but medication can stall its progress. I was put on a course of tablets. Although my shaking lessened, I felt like I was moving in slow motion and suffered from aches and pains. Even my speech started to slow.
I used to love going shopping with the girls, but soon I was struggling to keep up. One day some elderly ladies overtook me! I’m only in my 40s, I thought, flushing with embarrassment.
My life was slowly being taken from me. I even gave up my job when I started falling over at school. So I threw myself into fundraising for Parkinson’s Victoria. Last year I took part in A Walk in the Park – an annual community event to help Parkinson’s sufferers. Completing the four-kilometre course was tough, but meeting other sufferers was truly inspiring.
Then in March this year, my specialist told me about deep brain stimulation. It’s a process where electrodes are implanted in the brain and connected to a neurostimulator placed under the skin near the collar bone. The system blocks the brain signals which cause Parkinson’s symptoms. Like medication, it’s a way of slowing the disease, but not a cure.
‘Not everyone is suitable, but you’re a good candidate for this,’ he told me. ‘But it isn’t without risks.’ There was a chance it could damage my speech further. And I would need to be awake during the surgery so doctors could find the right spot for the implant. It was a terrifying thought, but I decided to take the risk.
First, I had to have my blonde locks shaved off. Then, in May this year, it was time for the procedure. Sitting in the theatre, I felt very uneasy. They numbed my scalp with needles, but I still felt the vibrations as the doctor drilled into my skull. It was frightening, but I had to trust the medics.
I would need to be awake during the surgery.
I was having two electrodes fitted – the first was perfect, but the second one was trickier. As it was put in place, I suddenly felt extremely emotional.
‘Something’s wrong, isn’t it?’ the doctor said as my eyes filled with tears.
‘Yes,’ I stammered. I felt better as soon as it was repositioned.
I was given a general anaesthetic while the neurostimulator was fitted in my chest and connected to my brain. When I woke up, I immediately felt better. I had so much more energy.
Since then, my tremors have reduced and I feel more stable on my feet. I’ve cut down on my medication and am hoping to go back to work.
I can go out with my daughters again and am proudly taking part in this year’s A Walk in the Park.
In time, the dial on my neurostimulator will be turned up as the disease progresses. But for now, I’m just happy to be back on my feet!
As told to Sarah Firth.
Originally published in that’s life! Issue 34, 2016.
- Parkinson’s disease is a neurodegenerative brain disorder caused by a lack of dopamine – a neurotransmitter.
- Thirty people are diagnosed with Parkinson’s every day in Australia.
- Sufferers gradually lose the ability to control their movements and emotions.
- Other symptoms include stiffness, bladder and bowel problems, fatigue, restless legs, sleep problems and communication problems.
- A Walk in the Park events will be held around Australia on August 28. For more information, visit www.parkinsonswalk.com.au