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‘Why I hope this was the last World Parkinson’s Day’

The Indie’s Parkinality columnist Julie Walker, from Bishop’s Stortford, writes not about parking, but about living with Parkinson’s disease in her 50s.

By the time you read this, World Parkinson's Day (WPD) will be done and dusted forever. Well, that is the hope for me and the other 145,000 people living with the condition. Parkinson's disease (PD) has the dubious honour of being the world's fastest growing neurological condition. There are a lot of very clever people working tirelessly for a cure and we need a cure now. Once PD is cured, April 11 will no longer have to live with the stigma of being associated with a disease. It will be released and renamed something groovy, such as International Jelly Balancing Day.

Why has April 11 got the short straw? It is the birthday of James Parkinson, a medical doctor born in 1755. PD was named after him. Up until then it was known as the shaking palsy.

It is now 2023, there is still no cure and April 11 is still constrained by being affiliated with PD. I can now report back with authority about what went on in the build up to WPD and the day itself.

On Thursday April 6 we held a quiz night at the Wheatsheaf pub in Northgate End. From the entry fee to the quiz, heads and tails game and the raffle we raised an astounding £420. The winners were a team called Deranged Haddocks from the support group. I heard a rumour that the name was arrived at as a result of mishearing the suggested name Grange Paddocks, the Everyone Active centre where we meet for the support group.

Our team was called Taxi for John and we came a (dis)respectable seventh out of 11 teams. Thank you to Michelle at the Wheatsheaf for hosting and writing the quiz and thank you to the Coach and Horses for donating the main raffle prize.

Julie Walker's quiz team, Taxi for John, at the Wheatsheaf
Julie Walker's quiz team, Taxi for John, at the Wheatsheaf

WCD (World Chocolate Day) came and went and WPD arrived.

Tuesday April 11 was an upside-down day PD-wise. Confused? I am usually at my worst after 2pm because food from lunch inevitably interferes with the absorption of my medication. However, after breakfast, unusually my fingers were completely rigid and my walking awful.

Initially I only recalled having my usual breakfast of a banana and yogurt. Then I remembered I had eaten copious amounts of WCD chocolate which had whole nuts in it. Despite consuming this whilst standing up which, as we all know, doesn't count, it still affected my tablets. Nuts are a source of protein which is the main culprit in interfering with absorption of the medication.

During the day I bombarded social media with my Parkinson's poems. In fact, the poem below was used on more than 2,000 electronic billboards donated to Parkinson's UK for the day.

I stumble when I walk

I find it difficult to talk

I tremor once in a while

Julie Walker's poem on a digital billboard in Sunderland
Julie Walker's poem on a digital billboard in Sunderland

After a bad morning I knew I had to try to be as good as possible for the evening event. With this in mind I only had a small, protein-free lunch. My medication appeared to be absorbed okay. I had a bit of dyskinesia, but this was better than the alternative of not being able to move. So an upside-down day in the end worked out to my advantage, despite me having to be a grown-up and put up with the inevitable hunger pangs of having a smaller lunch.

On the evening of April 11 we held a poetry and music evening at the Castle pub. Thank you to everyone who braved the elements to come and support us. The Wise-ish Man sang, I read some poetry and Paul spun some vinyl. It was a good evening and we raised £150. Thank you to Joe at the Castle and Paul and Jane for coming along and playing the vinyl.

And thank you again for all your support. If anyone would like to donate to Parkinson's UK then please visit www.parkinsons.org.uk/donate. All the money raised will go towards funding the charity’s indispensable support line and its work into finding a cure.

Now, bring me a stick and some jelly and I will begin my practice for April 11, 2024…

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