Hello, thank you as ever for your messages of support, laughter and inspiration, it’s been a mad few weeks! A special hello to the new folks here 👋🏻

Right, I’m going to be honest with you here. Brace yourselves; swearing ahead…

I am losing my bastarding mind over the relentlessly cheerful, super-motivated exercise crew.

I need to clarify. I am NOT having a go at you folk who are grabbing Parkinson’s by the parkies and going for it. Exercise is the only vague hope we have of making this disease manageable and functioning. You guys are my heroes.

I am expressing a degree of frustration at the bombardment of exercise advice and jollying along from the wider community and professionals. It’s not that this message isn’t important. Exercise really does help PD. Truly. Scientifically.

But, I’d bet my non-shaky left hand, that everyone with Parkinson’s knows this fact. Everyone. If they don’t, I doubt they are in the loop where this information pumped out by charities and the like will be reaching them.

‘Ok, Emma why the tirade?’ Oh, dearest reader, I am so glad you asked.

I have been a physically active person most of my life. I’m reasonably sporty and spend much of my free time in the wilds, hillwalking, camping and so on. But the day-to-day challenge of exercise is increasingly hard with Parkinson’s.

I have a few restrictions which are not due to PD. A small flat in the city centre means I have to get out to exercise nor can I afford a gym membership.

These aren’t really the problem though, the issue is motivation. Or the lack thereof. Motivational crapness is one of my major non-motor symptoms. I spent almost 40 years in hyper motivation; driven, ambitious and super bouncy. Then it went away.

Almost overnight. However hard I beat myself up (and I do) it’s just not there. The will to do anything is just an empty void. Then every now and again my brain finds a scrap of dopamine, like a forgotten dollar in your jeans pocket, and whoooosh! I get 5 seconds of my old motivation back. It’s like a glimpse of the old Emma.

When I get bombarded with exercise info and events I feel as if I’m being accused of not taking control of my illness. If only Emma would just help herself…she’d stop being a whiny bitch. There is a lot of pressure to get better.

There is a tendency for the delivery of the information surrounding illness to be overly jolly or depressing as fuck. The tone is hard, of course. And god knows, you can’t please everyone. I think I’d appreciate a more honest and open tone. Perhaps these campaigns need to be written by people who are going through the challenge or at least better consultation.

There is a strange assumption that we will miraculously get better if it’s all a happy, clappy singalong. Encourage by all means. Be loving and compassionate, please. But don’t assume we are all able and not just trying hard enough.

And please, for the love of cockwombles, don’t begin correspondence with a chronically ill person ‘Hope you are well…’

With love

Emma xx