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How a year in lockdown, taking 7,280 tablets with a lack of exercise and social interaction, has affected my Parkinson's




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

Next year I hope that the Parkinality column can finally become about parking and my diary for April is empty.

Confused? April is Parkinson's Awareness Month. This is my ninth year of living with Parkinson's disease (PD) and it is getting very dull. After the unbelievable work of the medical professionals over the past year surrounding Covid, it would be amazing if a cure could be found for other conditions such as Parkinson's.

If PD was cured this column would need to be repurposed. It would also mean that a PD awareness month would no longer be required, leaving April free to mark Edible Book Day (which is exactly as it says) on April 1 and Peanut Butter and Jelly Day on the 2nd. I would finally have time to mark (non-dairy) Cheese Fondue Day on April 11 instead of International Parkinson's Awareness Day (national days courtesy of Wikipedia).

When 'they' release me back into society, I imagine emerging blinking and shuffling, wearing a neon tabard with a scrolling LED display to alert people to my mood: Grumpy, Happy, Dopey, Bashful or Smelly.

Confused? Much of our personality is communicated through body language and facial expressions. Taking 7,280 tablets over a year in lockdown and a lack of exercise and social interaction means my movement and speech have deteriorated. The tabard would be to alert people to my emotional state when external symptoms are sending out confusing messages.

Parkinality columnist Julie Walker, pictured shooing photographer Vikki Lince away from her door, is continuing to shield
Parkinality columnist Julie Walker, pictured shooing photographer Vikki Lince away from her door, is continuing to shield

During summer 2020, in lockdown, I was sitting in the garden, my brain super-busy; an interesting human on the inside. Gradually I realised I had been sitting unmoving for about 20 minutes. I started to worry about how I must look from the outside. Still, silent and expressionless could equal boring, dull and uninterested.

One of my many fears with PD is becoming invisible and being ignored. I don't mean invisible in a superhero 'Invisibility Girl' way and I don't mean ignored as in 'not being chosen for the netball team'. I worry that my external appearance could be misunderstood and I could look unapproachable, be ignored and thus feel excluded from society.

In the garden, I imagined I was frozen in a busy office. I tried to force my mouth into a smile. I tried to wink, raise an arm, anything to let the outside world know I was still present.

So when we are finally released back into society, if you spot me sitting at the bar silent, still and staring, please don't assume I am grumpy and want to be alone. Please come over (and buy me a drink).

I shielded for the first 11 months of 2020 despite the Government telling me I didn't need to. In January 2021, the Government wrote to me telling me to shield. I have now received a letter informing me that I no longer need to shield.

Confused? I asked if PD could be added to the shielding list, but the Government didn't consider PD a condition which required shielding. I decided to shield because of my concerns about Covid and my complex Parkinson's symptoms and medications.

I was advised to shield in the new year because I was prescribed a course of medication which will make me officially extremely clinically vulnerable. Ironically, in the week I started that medication I received a letter from the Government informing me that shielding is ending due to the declining number of infections.

However, there is still uncertainty surrounding Covid and the future, so I will continue to shield. However, I might tentatively venture out wearing my mask, waving my walking stick.

A Glimmer of Hope by the Parkinality Poet

Janet's waited so long, been as patient as she could, she's eaten more cake than she probably should.

Bob's Zoomed so much he's broken the web, he's had to resort to writing letters instead.

They've homeschooled Ralph, their first and only son, which has made them decide to stick with just one.

The news is out 'they' have made a breakthrough, we're crossing our fingers, our eyes and ears too.

We need some normality and we need it quick, our hopes are all focused on a tiny pin prick.

I hope that next year it is safe to celebrate Hug a Friend Day on April 26 in a world free of both Covid and Parkinson's. Stay safe.



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