Parkinality columnist Julie Walker: ‘Thank you to the Wise Man for being there during the difficult times and for the fun times and for making living with this ‘thing’ slightly more bearable’

The Indie’s Parkinality columnist Julie Walker, from Bishop’s Stortford, writes about living with Parkinson’s disease in her 50s, having been diagnosed at 44

Sitting on one’s buttocks feeling sorry for oneself – or getting off one’s backside and writing a novel and writing and recording an album?

Not many people have the drive to write an album and a novel. But this is what Andy Johnson has done, despite living with a disease where one of the invisible symptoms, brought about by depleting dopamine, is a lack of motivation.

Regular readers of Parkinality will know my partner Andy as the Wise(ish) Man, the name I bestowed on him when I began writing the column. Why the ‘ish’, when actually he is wise and has a phenomenal memory for long-forgotten facts? I don’t want him getting too big for his boots.

Despite living with a (currently) incurable degenerative neurological condition, Andy has written the lyrics to an album of songs. He went on to put together a studio band, Affinity Formation, and record an album, Long Hard Road. If you are very lucky you might have a copy of his CD. If not then it can be found on all music platforms. Give it a listen.

You might have caught him performing at various open mic nights in local pubs or at Bishop’s Stortford’s music festival, Bish Bash, a few years ago when he put together a band and played on the main stage. This is despite Parkinson’s disease (PD) affecting his vocal cords. Even when it affects his speaking voice, he can still sing.

I was presented with the Person of Courage award at the Indies Community Awards last month for my awareness work. Andy, who has been living with PD for more than 18 years, deserves recognition for the part he has played in my receiving this award.

He has given me the confidence to write, publish and perform my two poetry books. He continues to support me in writing my column, acting as the first level of the punctuation police and spell checker. He has also encouraged me to start my first small business venture, Swirl Accessories, designing products for humans and their homes.

People often look confused when we are out and about together and a bit all over the place. When we explain that we both have PD, we feel the need to reassure people that it is not contagious.

So what have we got planned for 2024? Combining tracks from Andy’s album with my poetry, we have created a musical about being diagnosed with young onset PD.

Before lockdown we entered a shorter play version, called These Three Words, in Contexture Theatre’s Write Here Write Now playwright competition. It won its heat and was runner-up in the final. It is now a full musical script and we are starting to take the first tentative steps into putting it on as a musical. Watch this space.

Continuing in our quest to raise awareness, we are organising a Party for Parkinson’s event, in conjunction with Stortford Music Festival, at The Belgian Brewer on Saturday April 6. Money from ticket sales will be divided between Parkinson’s UK, to support its vital research and support lines, and Stortford Music Festival, a community interest company raising money to put on Bish Bash in 2025. Profits from the raffle and from merchandise sales will go to Parkinson’s UK.

I will be reading my poetry and Andy will be performing tracks from his album. He has put together a ‘supergroup’ called The Hybrids for the evening. The bands Big Door Prize and Ancient Geeks will also be entertaining us. Tickets are £10, available in advance from thebelgianbrewer.co.uk and www.wegottickets.com/event/605307.

Andy and I continue to be advocates for spreading awareness of PD, highlighting the random symptoms in the hope that people feel less alone when dealing with such an erratic condition.

To call the battle with PD a fight makes it sound like there is a winner, which there isn’t. Instead, Andy and I, and others living with chronic conditions, stumble from day to day, making the best of the hand that we have been dealt.

Thank you to the Wise Man for being there during the difficult times and for the fun times and for making living with this ‘thing’ slightly more bearable.

Our dancing may be slightly wonky, but we still enjoy the odd sherbet and continue to go out and attempt to paint the town red.