Parkinality columnist Julie Walker, from Bishop’s Stortford, writes not about parking, but about living with Parkinson’s disease in her 50s
I have finally found a part-time job and a boss who has a working knowledge of Parkinson’s disease (PD).
So who is this boss? The boss is me. Well, I would like to think it is me. In all honesty it is usually PD.
I am locked into an unpredictable power battle as I constantly attempt to beat PD at its own game. When my brain wants to write a receipt, PD might (but might not) decide to affect my dexterity, turning my writing into a doctor’s scrawl. When I want to chat to a customer, my voice might (but might not) turn into a weak whisper.
Whatever I do, PD is constantly taunting me (unless it isn’t). Even when I am briefly tip top(ish), I worry what it will do next.
As for time off, it would be pointless completing a holiday sheet. I have to learn to accept that any attempt to give PD the slip is futile as it will follow me from my front door to the pool bar in Timbuktu.
I design and sell accessories under the name Swirl Accessories. Swirl Accessories is one of the few things I do which has nothing to do with PD. I am my own boss which means I should be able to fit work around PD. If I have a really bad day then I only have myself to ask whether I can have time off.
PD makes me incredibly unreliable and unpredictable. For example, my legs often stop moving with no warning. If I am heading out to a local chicken establishment for a team meeting with a dozen people this might inconvenience several people.
However, when the only person I have to meet is me I am sometimes understanding. I say sometimes because I have a tendency to be a tad impatient. Rather than being sensible and waiting until my medication kicks in and I can walk again, I will drag myself to my table for one, reciting a repertoire of expletives.
A lot of behind-the-scenes preparation is required when I need to do something different. For example, get up early, set up and run a market stall. I have to plan this for a few days before the event.
I, along with advice from my neurologist, must try to anticipate how I might need to change the timings of my medication and/or the settings on my DBS (deep brain stimulation) machine so that I am as good as possible for the duration of the market.
I am not trying to hide PD, that would be impossible, but I would love to be “normal”. To be able to fold a scarf without injuring myself would be great.
I try to run a market stall at the monthly Bishop’s Stortford Farmers’ Market on the first Saturday of the month from 9.30am to 1.30pm in North Street. I also try to have a stall at Little Hadham school on the last Saturday of the month from 9am to 11.30am. Everyone is really friendly and helpful and are quick to offer help if I look like I am struggling.
A note from the Bishop’s Stortford market organisers: “Calling all locals and visitors alike! Discover the vibrant Bishop’s Stortford Farmers’ and Crafts Market, a delightful gathering held on the first Saturday of every month. Join us for a day filled with the finest local produce, handmade crafts and community spirit.
“Are you a talented artisan or passionate producer? We’re always on the lookout for new traders to showcase their goods! Don’t miss your chance to be a part of this bustling market scene. Contact us today to reserve your spot and let your creations shine! Email market@bishopsstortfordtc.gov.uk.”
And a note from the Little Hadham Farmers’ Market: “A thriving (dog-friendly) monthly market which takes place at Little Hadham school with a large selection of artisan stalls, both inside and out.
“You will find the butcher, baker and, yes, you guessed it, a cheese stall. You can also pick up a hand-made gift or two. They also serve a great breakfast.”
If you see me sitting unmoving behind my stall with a blank expression on my face, please don’t judge this book by its cover. Come by and say hi. I need a tabard with a programmable scrolling LED notice with a selection of phrases, such as “I’m not hungover” (unless I am) and “I’m smiling on the inside” (unless I’m not).
Swirl Accessories can also be found at www.facebook.com/Swirlaccessories.