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I was diagnosed with Parkinson’s at 28

That didn’t stop me from becoming a mum!
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Told she shouldn’t have kids, Nerissa faced a difficult decision.

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Here, Nerissa Mapes, 41, tells the story in her own words.

Fingers fumbling, my frustration grew as I struggled to do up the buttons on my shirt. Why is this taking so long to heal? I thought.

I’d hurt my hand playing netball a few months before, but it should have been better weeks ago. Visiting my GP, he suggested the injury may have caused some permanent nerve damage and sent me to a neurologist who did a brain scan. It was a few months before the results were due back and during this time I went to see my parents, Pam and Barry, for Christmas. They noticed I was moving a lot slower than usual.‘We’re worried about you, love,’ Mum said one day. But I brushed off her concerns. I was only 28 – what could be wrong with me?

Then my neurologist told me the unthinkable. ‘You’ve got Parkinson’s,’ he said. I couldn’t even respond, I was so shocked. My mind immediately jumped to my maternal grandmother Delma who’d had it. She’d been bed-ridden and couldn’t even feed herself. Would that be me? Phoning Mum with the news, my heart broke as I heard her sob down the line.‘It’s my fault. I must have passed it on to you,’ she wept. Devastated by my diagnosis, I cried myself to sleep. Meeting with my neurologist, he talked me through how my life would be. ‘There’s no way of slowing down Parkinson’s, but medication can mask symptoms such as shaky hands,’ he explained. And he said something that filled me with huge sadness. ‘I advise against you having children. Pregnancy might make your condition worse.’ I’d always envisioned being a mum, so being told that I couldn’t have kids was such terrible news.

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Mum and son
I was determined to become a mum! (Credit: Supplied)

Determined to not let the illness take over my life, I researched case studies of mums with Parkinson’s. Excited to come across a woman called Becky in the UK who had a second bub after diagnosis, I contacted her on Facebook. I really want to be a mum, I told her. Go for it, she wrote. Pregnancy didn’t affect my Parkinson’s. At the time I wasn’t in a relationship so put it to the back of my mind. Living in Melbourne, I managed to continue working, but by the time I was 37, my tiredness had overcome me. Moving slowly, my fine motor skills were declining and it was taking longer to do simple tasks like use a knife and fork. So I moved to live with Mum and Dad on the Sunshine Coast. Hanging out with old mates, it was through them I met Brendan, 48. Falling in love, we set up a life together. Brendan already had four kids and knowing how much I wanted to become a mum, we decided to try for a baby. My parents were worried that pregnancy would worsen my condition. ‘I’m determined to become a mum, it’s all I want,’ I told them.

In November 2015, I was overjoyed to discover my dream was about to come true – I was pregnant! I’m finally going to have a baby, I thought. Sadly, Brendan and I split four months into the pregnancy, so I moved back in with my parents. It was good to have them around as by the end of the pregnancy, I could barely move and couldn’t drive. To ease the risks, I was booked in for a caesarean and on July 15, 2016, Lachlan was born, weighing 3.69kg. As he snuggled into me, I knew it was going to be okay. Hands shaking, I would change his nappy. As it could take me quite a long time, I always had a selection of toys on hand to keep him amused. The only thing I couldn’t do alone was give him a bath so Mum would help me. ‘I’m so proud of what you are doing. You’re a wonderful mother,’ she told me.

Lachlan and I are a great team!
Lachlan and I are a great team! (Credit: Supplied)
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lachlan
Lachlan (Credit: Supplied)

It wasn’t always easy though. Sometimes I was so zapped of energy that I had to feed Lachlan while he lay in his cot. But my boy was so patient and his beaming smile told me he was happy. When Lachlan was six months old, we moved out to our own place. Then, at the end of last year, I had an operation called deep brain stimulation.Surgeons inserted fine wires into my brain, down my neck and into a battery placed in my chest.This then sent regular pulses to the affected areas of my brain. Having this means even when my medication wears off, I’m still able to do most things.‘Mummy can even cuddle you while she feeds you,’ I told Lachlan.

Lachlan’s now 21 months old and me being a bit slower means he’s growing into a kind and patient child. As for the future, I try not to think about it. I’m just focusing on taking each day as it comes and enjoying life with my happy little boy.

Read more in this week’s issue of that’s life!

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