Nikki Shares her Parkinson’s Story

Monday, 9th September 2019

I’m 36, originally from Scotland and live in Frenchs Forest with my (Aussie) fiancé Adam and our 22 month old son Brodie. I work as a Vice President with an investment bank, having moved to Sydney with work 3 years ago. I’ve been with the firm for almost 12 years and held a number of different roles in Scotland and then Hong Kong before moving down under. My daily life is the normal, hectic challenge of managing a demanding full time job and being a mum. Things changed for us last year when we were faced with an extra and very daunting new challenge.

My Parkinson’s Diagnosis

I was on maternity leave and I mentioned a few strange things I’d noticed happening to my doctor. The first was the involuntary curling of my toes and arching of my right foot. I’d notice it when I was standing doing the dishes and I would correct it but then five minutes later it would happen again. The second thing was brushing my teeth – my arm just wouldn’t move the way I wanted it to and, without realising, I’d started using my left hand to help move my right arm. Then I was aware of a change with my writing – it had become a real effort to write in my usual style. It was slower, took a lot of concentration and had become much smaller. I put it down to lack of practice from being on maternity leave and expected it would get better when I returned to work but, instead, it got worse.

My doctor had initially thought I was a sleep deprived new mum but, after a few visits with my son where I also mentioned my symptoms and showed him the loss of dexterity in my fingers, he agreed something wasn’t right and referred me for a brain MRI. A couple of weeks later, the scan results came back “normal”, which lulled me into a false sense of security, despite the next stage of the process being a neurologist referral. I went to the neurologist appointment on my own expecting to be told I had a trapped nerve and was completely blindsided to hear the words “I suspect we’re looking at a diagnosis of Parkinson’s”. I was referred for a second opinion because even the neurologist had never seen PD in someone so young and the second neurologist confirmed the diagnosis.

My Symptoms

In addition to my earlier symptoms, I also now have issues with slow and stiff movement in my right hand, arm and foot, tremors on my right hand/arm and leg, cramping in my foot/leg and weakness in my right arm. I struggle to write legibly or quickly and to type, which impacts my work and slows me down somewhat. Changing nappies can be a challenge! It’s difficult enough with a wriggly toddler, never mind the addition of a hand that sometimes freezes.

Positivity with Parkinson’s

I can’t change the diagnosis or make it go away, so I try to deal with it as positively as I can and just get on with life because, after all, this isn’t a dress rehearsal. I joined a local support group called Parkinson’s Divas and have met some beautiful, kind and inspirational women there who are all living with Parkinson’s. The group is co-ordinated by Jennifer Ley and there’s over 30 women now aged between 36 and 88 who meet monthly for lunch in Balgowlah and we support each other through the highs and lows. There is much laughter, exchange of information and experience from a diverse group of women who are all fighting the same PD fight and hoping, one day, for a cure. New friendships are forged by the ladies who are supporting, motivating and encouraging each other.

Raising Awareness of Young Onset Parkinson’s

Myself, Jennifer and Larissa Richards (another friend from the group) are sharing our story in an advertising campaign for the Shake It Up Australia Foundation as part of their Pause 4 Parkinson’s campaign to celebrate World Parkinson’s Day on 11 April. The focus of the campaign is to make more people aware of young onset Parkinson’s (people under 50) which affects over 20,000 Australians. This year I will be Pausing 4 Parkinson’s because I want to help find a cure for this progressive degenerative disease and look forward to a positive future with my family. 2018 certainly taught me to be kind because you never know the silent battles people are facing.

It also reiterated that life isn’t a dress rehearsal and we need to enjoy it!