‘Parkinson’s disease didn’t stop me having a baby’

By on February 23, 2018

‘Parkinson’s disease didn’t stop me having a baby’

‘Parkinson’s disease didn’t stop me having a baby’

Sarah Marinos bodyandsoul.com.au

After a shock diagnosis at 28, Nerissa Mapes refused to let Parkinson’s take away her dream of becoming a mum.

Photo: Lachie Millard

"In 2005, I fell while playing netball and badly bruised my hand. Typing became hard and using a knife and fork was tricky. It took me an extra hour to get ready for work as I was slower showering and drying my hair, and I took forever to get dressed and do up buttons.

An osteopath strapped up my wrist and I thought, in time, that it would heal itself. But my GP was worried I had some nerve damage and after a few months of seeing no improvement he sent me to a neurologist for blood tests and an MRI scan of my brain and spine.

I went home to Queensland for Christmas, and friends and family who hadn't seen me for a while were concerned that when I moved I seemed a bit robotic and slow. But I wasn't worried. I was only 28. I was living in Melbourne and working for a large company in a senior communications role.

I had a busy social life and loved travelling … Surely it couldn't be a serious problem. I trusted that my body would heal itself.

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I didn't think I had any reason to be worried, so I went to get my test results from the neurologist alone. I was meant to be going on a date afterwards and I remember sitting in the clinic all dressed up.

It was January 12, 2006 – what became 'D-day'.

The neurologist looked at me and bluntly said I had Parkinson's disease. I remember not being able to speak. I was too shocked.

Then I thought of my grandmother, who had Parkinson's and who was bedridden and couldn't walk or feed herself.

I vaguely remember leaving the neurologist's office and trying to call Mum and Dad, but I couldn't get through. I walked through the city in a daze before hailing a cab.

I started crying. The cabby looked at me and said, 'He's not worth it, darl.' I went home to my flat, curled up on the floor and cried all night.

My parents were worried and asked me to move back home to Queensland but I wasn't ready.

I went through a grieving period for about a month. On the worst days, friends came over with ice-cream.

But gradually I learnt more about the disease and realised everyone is affected by it differently. My grandmother's destiny wouldn't necessarily be mine. I couldn't change that I had it, so I had to learn to live with it.

My neurologist prescribed a medication that he said was my 'cruise control' and I also started taking synthetic dopamine – it's a chemical messenger in the brain that I lack. Without it, messages to your muscles are disrupted.

I continued working and living in Melbourne until 2013, when I went home to be closer to Mum and Dad. My symptoms gradually became more difficult to live with – I moved slowly and had problems with my fine motor skills and gait, so it would often take me longer with everyday tasks like cooking, housework and dressing.

More medication helped smooth things out but I stopped working several years ago; I never knew if it was going to be a good or bad day and I didn't want to be unreliable.

I always wanted a baby but my neurologist advised me against it because I'd have to come off some of my medication during pregnancy and my Parkinson's symptoms could worsen.

I'd fallen in love when I moved to Queensland and we began talking about having a family.

A friend in the UK with Parkinson's had given birth to a healthy little girl and I thought if she can do it, why can't I? Mum and Dad were worried and I had moments when I felt nervous, but I wanted to be a mum and I really believed that everything would work out.

Pregnancy wasn't easy and my relationship ended about four months in, so I lived with my parents. They were so supportive, particularly towards the end, when it became difficult to move and I could no longer drive.

Lachlan was born at 8.56am on July 15, 2016, weighing 3.69kg.

He snuggled into me immediately and was perfect. He was such a good baby who rarely cried. As he grew a little heavier and I could no longer hold him in my arms, I'd lay him next to me on pillows to feed him. I have an army of 'change table toys' that keep him amused when I take a little longer changing his nappy. We've learnt to manage together. Lachie's dad sees him regularly, too.

I moved into my own apartment when Lachie was six months old.

We have a park and a beach nearby, and he's always happy.

I think he'll be a patient person because Mum hasn't been able to jump up and do everything for him.

At the end of last year I had deep brain stimulation surgery as my medication wasn't working so well anymore. Fine wires were inserted into my brain, down my neck and into a battery that's in my chest. It sends a current to stimulate affected areas of my brain. It's still being tweaked but it looks like it will make every day as good as my 'best' on medication.

I'm doing it for Lachie, so I can do things with him. I'm determined to be the best mum I can be."

For more information on Parkinson's or to donate, visit shakeitup.org.au.

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