David Sangster

You’d think after 15 years I would get used to the spin…

After I was diagnosed with Younger Onset Parkinson’s in 2011, I spent the first few years getting my head around being diagnosed with an incurable, degenerative neurological condition – of which there was no known cause and no cure. There wasn’t a cure in 2011 and there is no cure in 2026.

During those dark days of denial and hoping it was all a mistake – I carefully and tentatively raised my head out of the dark hole I had been hiding in for the past 3 or so years and decided to share my life, my journey with Parkinson’s.. with the intention of showing the public that anyone, at any age, from any background CAN get Parkinson’s. Being in my early 30’s – I felt alone and isolated (despite the love and care of my family). It was a tough time.

Life had to carry on as normal. I was a tutor in a college. Married with a young family. Life didn’t stop yet I was getting slower – finding it harder and harder to keep up with the spin.

In late 2014 I joined Twitter and started writing short posts with a video or photograph – a kind of journal of the day-to-day with ‘#Parkinsons’ – little did I know that there was a whole world out there with people of all ages and, most interesting to me, a younger population of people living with #Parkinsons – people like Zoe in Greater Manchester and Martin in Edinburgh – they too were recently diagnosed and in their 30’s – both of whom I met in person and remained friends ever since.

One particular person I met is Tomas Gisby (we have remained in touch, meeting several times in the past 10 years, and we will be attending our second World Parkinson
Congress together in May this year – all made possible because of a single selfie in June 2015 after a radio interview with Jeremy Vine – which Tomas (and so many others) heard on a Friday lunch time – many responding with their own #1in20parkinsons. It just comes to show (even back in 2015) how social media can bring people together.

I then made it my mission to do more – to contribute to a sustainable sense of hope, realism and progress in the face of chronic illness.

2015 was a year that changed my perspective of the disease and completely turned my approach to managing it on its head.

I would go on to ‘connect the dots’ and actually meet so many people in the next couple of years who had Parkinson’s – like me.

More in my next post. >

Nobody said it would be easy : Raising Awareness of Parkinson’s in your 30’s.

DS