It has been 200 years since Parkinson’s was given it’s name. And it was 4.5 years ago the name was spoken to me in a neurologist’s office and my life changed forever.
No-one is ever ready to hear that the vision they had for their future might not be achievable, that their day-to-day life would be filled with unending uncertainty, that everything from brushing their teeth to holding down a job would become a challenge. It would be unwelcome at any age. I was just 29 years old.
But I decided to hit Parkinson’s head on and not let it take me down. And I was confident that medication would be a vital and reliable part of the arsenal that would help me maintain my independence and quality of life.
I couldn’t have been more wrong.
I discovered the medication I would be reliant on to help me live a busy and modern life hadn’t changed in 50 years, that there had been no new medication advances since way before I was born. Not to mention the side-effects that they brought with them, some more terrifying and frustrating than the condition itself.
So I find myself 4.5 years later sticking on, swallowing and injecting a carefully balanced cocktail of medication that leaves me still unable to hold a cup of tea without spilling it, walk without stiffness or write my own name unaided.
It’s not good enough.
Just like every other person with Parkinson’s I hold my breath for the day when we find a better treatment or a cure and I’m hopeful that these things will come within my lifetime. To those whose support makes progress possible and the brightest minds working tirelessly to make our dream a reality – thank you for helping to bring forward the day when no-one speaks the name Parkinson’s. We’ve waited long enough.
This is the speech Emma gave at Number 10 Downing Street last week, marking the 200th anniversary of the first published description by James Parkinson of the disease that would come to bear his name.
Emma will be speaking about her battle with Parkinson's at MT's Inspiring Women conference on 23rd November. Come and meet her. Book your tickets here.
If you're interested in how you can partner with Parkinson’s UK, please contact Lisa Gill at firstname.lastname@example.org