2.16 Parkinson’s: a personal account

Keith Emery’s story

Keith was diagnosed with Parkinson’s ten years ago. Here, he explains what Parkinson’s is like for him, and what he’d like others to understand about it.

I put my muscle pain down to work first of all… my GP was pretty sure it was Parkinson’s…a neurologist…sent me for a datscan…and on the 26 Sept 2019 he confirmed it was Parkinson’s.

I had tremors, I lost the swing in my left arm. I had a foggy memory sometimes…As time went on the shakes did get worse, and the more I tried to stop them, the worse they got…Dr Knock put me on levodopa…

I started suffering from depression and I stopped socialising…at all with anyone – for two years…always feeling I was being stared at…I used to go for walks at night because I didn’t want to be seen during the day – because my balance was off…I lost my job…Since then I have been on disability living allowance…I didn’t have the money to do anything so I never really went anywhere…My family couldn’t get their head around me having Parkinson’s and didn’t understand the non-motor symptoms: the changes to my personality and behaviour.

I am getting support from all the friends I made at the [Sports Parkinson’s] Parkinson’s event…I was still embarrassed about my condition, but then when I got there I was welcomed, and greeted by people I didn’t know. I had never spoken to or seen them before and it made me feel less uncomfortable…I had fun, something I thought would be alien for me because of my Parkinson’s and the reactions I’d had previously from people I knew. I had other friends, but one by one they were no longer there. Until there was none…After the event, that day changed everything. Everything I felt before meant nothing. It was like sod ‘em, if they want to look then look. I was not going to hide it anymore.

Afterwards I took up dancing. That was to help give me a bit of control over my balance and over my legs. If I concentrated on my dancing my balance improved. I also went along to a martial arts class, to learn how to focus…Since then I have accepted that I have Parkinson’s but I push my limits every day. I am doing things that I wouldn’t normally do – going places, getting out and trying to be normal.

I now have to deal with freezing…I can be out walking and I will become a human statue. I just stand and I laugh. I make fun out of Parkinson’s. I accept that Parkinson’s has a hold on me, but my determination isn’t going to let it control me.

I wake up in the morning and my left side doesn’t move. I find it very hard to move first thing. But I always have my medication by my bed and within 30 minutes of taking it my left hand starts to come to life again and I can do things…If I go places and if I get the shakes and people see it I don’t pay any attention. It feels good. I have made so many friends it is unbelievable.

I had an addiction for making solar panels – once that was done I started getting into collecting watches and travelling across the UK…You learn to fight the additions.

You become more confident because other people tell you their situations and what they have been through, to combat their problems – once you start having fun, that is another good medicine – fun and laughter, understanding there are limitations.