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Bishop's Stortford Independent Parkinality columnist Julie Walker on why the Covid-19 pandemic has made 2020 the year of the Hokey Cokey




Parkinality columnist Julie Walker, of Bishop's Stortford, writes not about parking, but about living with Parkinson's disease in her 50s...

2020 has been the year of the Hokey Cokey (bear with me).

The whole world, at various times, has been instructed to be either 'in' or 'out'. Although I believe that people with Parkinson's disease (PD) have been the only ones to truly enter into the spirit of things by actually 'shaking it all about'.

Covid-19 has caused so many cancellations and restrictions that, for many of us, our greatest achievement this year has been booking a supermarket time slot. However, I have managed to pick out a personal highlight, challenge and lowlight from 2020.

Highlight

No highlights – hairdressers shut. Although thank you to Ian from Brookes hairdressing who came out to do an emergency haircut in the garden in the summer.

Challenge

Hand washing. Washing hands is similar to walking – both involve a message originating in the brain being transmitted, using dopamine, to the body to move.

Regular readers will know that for people with PD the area of the brain which produces dopamine is dying.

My brain might be saying 'wash your hands now, wash them thoroughly, both sides and between your fingers'. However, when dopamine levels are low and symptoms are kicking off, the message from my brain to my hands is likely to get lost.

Hand washing becomes a real struggle with my fingers increasingly rigid. The more I try, the more stressed I get, the more dopamine depletes and the less I'm able to move.

Lowlight

Lockdown. The restrictions on going out have been difficult for everyone. For me, personally, I see socialising as part of my 'medical toolkit'. This isn't just an excuse to go to the pub, honest.

Julie and partner Andy Johnson in the Star (43199268)
Julie and partner Andy Johnson in the Star (43199268)

Pre Covid, when PD symptoms started to kick off I would often go out. From experience, staying in doesn't present many opportunities for dopamine production, having already squeezed all the fun out of vacuuming.

That is a joke. I don't vacuum. On the other hand, although I know that it will be a struggle, going out usually has more dopamine-producing opportunities.

Chatting with friends and laughter all make me happy and feel positive which can help boost dopamine production, in turn reducing PD symptoms.

Looking ahead to 2021, and putting corny jokes aside, my PD symptoms have deteriorated during lockdown and life is becoming increasingly challenging. I was struggling to find positivity for the new year when the PD Avengers website popped into my inbox.

The PD Avengers' ultimate aim is to end Parkinson's disease. Inspired to take action by the book Ending Parkinson's by four of the leading Parkinson's experts in the world – Bas Bloem, PhD, MD, Michael S. Okun, MD, Ray Dorsey, MD and Todd Sherer, PhD – the PD Avengers are a global alliance of people with PD, partners and friends, standing together to demand change in how the disease is seen and treated.

One of their aims is to get one million voices to sign up to become PD Avengers and show their allegiance. After four months they've already reached 38 countries.

One of their strategies is to 'think local, go global'. So, in the same way as I write this local newspaper column for the Indie in the UK, through the power of social media that one local voice can reach around the world.

You might live with Parkinson's. I include not only the person diagnosed with PD, but also their friends and family – there is more than one victim. Or your only connection with PD might be reading this column. Please take a look at their website and my short video. If you would like to add yourself to the list, please join us at www.pdavengers.com.

PD Avengers (43199238)
PD Avengers (43199238)

I look forward to 2021 with renewed enthusiasm that one day the world could be free of PD.

I wish you good luck in creatively creating Christmas and look forward to a more positive new year.

Fingers crossed and stay safe.

P.S. Wouldn't it be odd if the Hokey Cokey is really what it's all about?



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