THE BLOG

Coming Out With Parkinson's

22/04/2016 16:38

Parkinson's is something that has been a big feature in my life, my late father had the condition, as did my mother's father and my father's aunt and in 2014, I got my own Parkinson's diagnosis.

This week, Parkinson's UK revealed in their survey that more than two fifths of people with Parkinson's (37%) have felt the need to hide their symptoms or lie about having the condition.

The findings, released in time for Parkinson's Awareness Week, unfortunately did not surprise me as my dad and I took very different approaches when it came to telling people.

Dad was diagnosed around 2008 when he was in his early 80's. He didn't want to tell anyone and told the immediate family not to tell anyone else either. I think it was because he wanted time to get his head around the diagnosis himself so we all respected his wishes because it was his body.

We all had to be careful not to let it slip in conversation as we didn't want to upset him. He died in 2012 and I remember there were family members at his funeral saying they didn't know he had the condition.

I took a very different approach to my dad and told people straight away when I was diagnosed. I have met many people since within the Parkinson's community who have delayed telling people for years but I don't understand it, there shouldn't be a stigma attached to having Parkinson's.

Both my dad and I lived with the symptoms of Parkinson's for a while before health professionals knew what it was. In dad's case, it took years and he went through a lot. He had problems with profuse sweating but nobody put that together with his posture and immobile face. I went to the doctor a year before I was diagnosed and my tremor was put down to my 'nerves', and I also felt very low in mood. It ended up being a relief when I was diagnosed, at least I could explain to my family why I hadn't been myself.

My symptoms have improved vastly since diagnosis, I take the approach that now I know what it is, I can deal with it. I am involved with Parkinson's UK, I attend research lectures and help with research projects, support others living with the condition and I have donated my brain to the charity's brain bank.

I feel that by telling people I have the condition I'm raising awareness of how it affects everyone differently, so less people will have to wait as long for a diagnosis.

I understand it can be difficult to come out with Parkinson's, but we shouldn't have to brush it under the carpet and it shouldn't be treated like a dirty secret.

I knew straight away that I wanted to be honest about my diagnosis. If we don't talk about it, how will we make people realise the importance of finding a cure?

Parkinson's Awareness Week runs from 18th - 24th April

Parkinson's UK is the UK's leading charity supporting those with the condition. Its mission is to find a cure and improve life for everyone affected by Parkinson's through cutting edge research, information, support and campaigning.

For advice, information and support, visit www.parkinsons.org.uk or call our free, confidential helpline on 0808 800 0303.

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