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You Could Have Fooled Me...

On this April Fools Day, I cannot help but being reminded of the day I was diagnosed with Parkinson's Disease. A date etched in my brain alongside my Parkinson's. You could have fooled me with those words - You've got Parkinson's.


I was 46 and three months pregnant after a long journey to get pregnant with our beautiful little girl. But Parkinson's only affects white older men and I don't have a tremor? I'm a young woman and I'm pregnant, surely this must be a mistake?


Unfortunately, it wasn't an April Fools Joke. Unlike April Fools, you cannot say 'only joking' you don't have Parkinson's. I wished that could be so.


There was doubt though. Due to being a young woman whose symptoms were subtle, small handwriting and a sore arm, my neurologist sent me for a DatScan to confirm if it indeed was Parkinson's.


As I was pregnant I couldn't have this scan until my daughter was born and I had finished breastfeeding her 8 months later. That should have been a precious time, and it was except for the 'is it Parkinson's cloud hanging over me'. But there it was on the screen in full colour, the lack of dopamine. I couldn't argue with hard evidence, this was no April Fools joke, it was now very real.


We were going on holidays a week later and what should have been a celebration of our expanded little family was marred by the black cloud post diagnosis, a background hum of sadness as we splashed in the pool, ate lovely meals and paddled in the sea. Why me, they must have got it wrong, I just couldn't get my head around it.


Fast foward 6 years and now I know many women are experiencing the same journey to diagnosis, the one of disbelief by both the neurologist and the woman herself. You are the complete opposite of the image taught to medical students. In fact, the branding of Parkinson's is adding to this April fools journey......so many women are misdiagnosed for years due to this branding. They are put on antidepressants, told its the menopause or simply dismissed.


The reality is that 40% of the 10 million people living with Parkinson's world wide are women and in some countries, such as Japan and Korea, more women have Parkinson's than men. In addition, up to 30% of people living with Parkinson's are under the age of 60. Considering the fact that the branding of Parkinson's is leading to misdiagnosis or delayed diagnosis, perhaps these figures are on the low side. In fact, a recent research in the USA found that Parkinsons disease is 50% more common than previously thought.


So today, on the first day of World Parkinsons Month, somewhere in the world women are experiencing symptoms of Parkinson's and it is no joke that their diagnosis may be delayed due to inherent bias of an image that needs to change.



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