Richelle Fowler, 23, Adelaide, SA
Tripping over my toes, I stumbled, fell onto my face and slid down the hill. 'Ow!' I cried.
I often fell, and was always covered in bruises, but this was a particularly nasty fall. We were on a school excursion and my mum, Teresa, now 47, had to come and get me. 'Something's not right,' my teacher told Mum. 'Take her back to the doctor.'
I'd always had problems walking. I dragged my feet and walked with a sway. 'Here comes Penguin!' the kids would tease.
At home I woke with agonising muscle cramps during the night. 'It hurts,' I'd sob as Mum and my dad, Peter, now 54, took turns massaging my legs.
I'd been to several doctors but no-one knew what was wrong. After my fall on the hill Mum took me to another doctor.
Finally, at 12, I was diagnosed with L-dopa responsive dystonia, a lack of dopamine in the brain – dopamine is what sends signals from the brain to the muscles.
'The messages aren't going from your brain to your legs properly,' Mum explained. I was put on medication and within weeks the cramps disappeared and I was walking better. I started riding bikes and rollerblading. I felt so confident I even joined the netball team.
But then puberty hit. It was a battle to get my medication right as my body went through growth spurts and other changes.
Mum tried to keep my spirits up. 'You're physically different but it doesn't make you any less of a person,' she said.
At 17 I met Andy* and I was smitten. One day, we were at the local shopping centre and, as usual, people were staring. 'I'm sorry Richelle, but I have to leave,' he said.
'Why?' I asked, confused. 'Because they're looking at us,' Andy said.
'I don't care!' I said – but Andy did, and we stopped going out.
A month before I turned 18 my hands began shaking and I found it difficult to write. I saw a new neurologist who didn't believe I had L-dopa responsive dystonia.
'I'm 90 per cent certain you have early onset Parkinson's disease,' he said. 'Isn't that what old people get?' I asked.
The doctor said it was rare, but young people did get PD. He explained that PD affects an area of the brain that causes a reduction in dopamine – the same chemical I'd been told I was deficient in six years earlier.
I was so shocked I don't remember much of the appointment. Mum led me out and took me for a milkshake. 'Am I going to be like Muhammad Ali?' I asked, picturing the former champion boxer shuffling and shaking.
'Don't panic,' Mum said. 'We'll find out more about it.' We learnt it was very rare to have PD at 17, but I was comforted when I read Michael J Fox's book and Parkinson's South Australia gave me lots of support. Gradually I came to terms with it.
One night at the pub a guy smiled at me. I grinned back. He started doing the chicken dance, so I went over to him. 'Why are you doing the chicken dance?' I asked.
'Because it's making you smile,' he replied. James, now 27, and I soon became a couple.
I was up-front about my disease and warned James I frequently fell over and would probably end up in a wheelchair.
'You can get out now if you want. I don't want you to get into something that's too hard for you to deal with,' I said.
James wouldn't hear of it. 'Your disability is not what I see, it doesn't matter,' he said. 'I love you.'
Four months later we were engaged. By now I was using a walking frame but I was determined to walk down the aisle on my big day. I started intensive physio and learnt to walk unaided. James also came along and we learnt to dance.
At my wedding, I walked down the aisle and when we waltzed at our reception I felt amazing and completely in control.
Living with Parkinson's is a struggle every day. I plan my life on the basis that I have PD and it will eventually progress. I don't pass up any opportunities in case I don't get another chance.
Parkinson's is just a bit of who I am, but it's also shaped me. I would be a different person if I didn't have it and I've grown to like the person I am.
Each day I wonder if there'll be some new symptom, but I'm prepared to face every change. It will not beat me.
*Name has been changed.
About Parkinson's Disease - PD is a progressive, degenerative neurological condition which affects the control of body movements. It is not contagious and is not fatal. PD affects approximately one person in every 1000, and most sufferers are over 60.
- Fewer than five people per 100,000 develop PD before the age of 40.
- Actor Michael J Fox was diagnosed with Parkinson's disease at age 30.
- World heavyweight boxing champion Muhammad Ali first showed signs of Parkinson's disease when he was 36. Despite having extensive tests, doctors only confirmed that Ali had the disease six years later when he was 42 years old.
For more information about Parkinson's Disease, visit Parkinson's Australia.
Do you live with Parkinson's Disease or know someone who is? Share your experiences by commenting below. |
