Julie Walker gets ready for Parkinson's Awareness Month and World Parkinson's Day
April is Parkinson’s Awareness Month and next Thursday (April 11) is World Parkinson’s Day, when the world catches up with the Bishop’s Stortford Independent, which publishes my column fortnightly, thereby ensuring that Parkinson’s awareness is in the news locally throughout the year.
I have written more than 25,000 words about my day-to-day life with early on-set Parkinson’s disease (PD). Regular readers will nod sagely when I say that as a result of the unpredictability of PD and unreliable medication, I switch ‘on’ when I am ‘normal’ and ‘off’ when PD symptoms re-emerge.
For those readers who prefer to recycle my column in the bin, when I switch ‘off’ it happens without warning. I describe the feeling as powering down. Movements slow, I stiffen up and it takes huge concentration to move. You may have seen me switched off and not realised it, thinking ‘thank goodness she’s quiet for a while’ as I sit quietly with a frozen scowl on my face.
They say a picture paints a thousand words, so this year I have put together a short awareness film. I have a selection of symptoms to choose from which vary in severity and duration, some visible/invisible and some motor/non-motor. Movement problems and switching ‘off’ whilst shopping might not be a blockbuster, but they are more watchable than apathy and constipation.
Entitled ‘The Big Switch Off (And On Again)’, it should be easy to get footage as it happens so often. However, have you ever approached a passer-by whilst staggering and shaking and asked them to take a video of you? Me neither.
However, last week, when I switched ‘off’ whilst shopping in Bishop's Stortford town centre, after my usual ‘fiddlesticks’ expletive, with dystonia starting to twist my foot, I dragged myself into a nearby shop. ‘Fortunately’ I remained ‘off’ for long enough for one of the sales ladies to get a short video. When watching, do not adjust your set as there is no sound – feel free to hum your own tune.
Please, no sympathy, no head tilting and no touching my arm. I wasn’t trapped on a rock face with no safety net in a howling gale, I was in a warm shop with lovely ladies surrounded by dopamine-creating shopping opportunities. I was in the shop for over an hour, gradually switching back on, using medication and music. The film is edited but its content happened over the course an hour.
I get frustrated when meds are low or decide not to work. Especially when simple, everyday activities become difficult, such as walking down the street, clearing the dining table or brushing my teeth. Obviously, PD would make bigger challenges more difficult too, but climbing Kilimanjaro doesn’t put tea on the table.
In an ideal world, I would wait calmly for motor skills to start working again. However, watching someone else wipe the kitchen counter effortlessly when I am switched ‘off’ is ridiculously frustrating. Strangely, when I switch back ‘on’ again, my first thought is not to clean the house.
The next column will update you on what the wise-ish man and I have been doing for Parkinson’s Awareness Month. PD permitting, I plan to go to a conference about women and Parkinson’s, to send my poetry book to be published, to share the awareness video and also, excitingly, the film of our Write Here! Write Now! heat-winning play These Three Words, about being diagnosed with early onset Parkinson’s.
Awareness month over, the wise-ish man and I will be performing at the Bish Bash 2019 musicfestival in Stortford on May 4-5 – Andy will be performing songs from his album Long Hard Road, Affinity Formation on the main stage and I will be performing my poetry as the Parkinality Poet.
During April I make no apologies for over-awarenessing. If the only reason scientists decide to direct money and expertise to find a cure is to shut me up, then that is fine. I don’t care how or who does it, but for all of us living with PD, we need a cure now.