Julie Walker writes 100th Parkinality column for Bishop’s Stortford Independent and is still waiting for Parkinson’s disease cure to be found

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

The first was “I live in a game show where the rules keep changing”. There was the doolally “It’s High School Musical 12: The mad OAP years” and the dramatic “Bleeding, bruised and bandaged: The fall and rise of the Wise(ish) Man”. And the most recent was “Column 99: No Flake required, just some dopamine”.

These are just some of the headlines, chosen by the Indie team, which have accompanied my regular Parkinality columns over the past seven years.

I thought it was about time I came up with some title suggestions of my own for my 100th column: “I had a pork pie and now I can't walk. “I am not a Dalek”. “Scent Cherry: 100 not out”.

For this milestone column, Janet Bric-a-Brac will be my guest interviewer. Astute (not to be confused with hirsute) readers may have spotted Janet’s name before. She is my invisible friend (everyone should have one).

Janet: What was your initial feeling when diagnosed with Parkinson’s disease (PD)?

Julie: This will probably surprise some readers - relief. Relief it wasn’t an inoperable brain tumour. On arriving home, I kept walking up and down the stairs, convinced that, like Daleks, soon I’d be unable to walk up and down stairs.

Janet: So how did a 50-year-old housewife with indecipherable handwriting, hopeless spelling and no journalism experience get to write a column in a newspaper?

Julie: I started a blog in 2017 and was asked by the chair of the PD support group to send it to Paul Winspear, the editor of the Indie. He came back with: “Love it, I want you to write a regular column.” The rest is history.

Janet: Any advice for those just diagnosed?

Julie: You are the same person as you were yesterday, so don’t give anything up. Being diagnosed with a (currently) incurable chronic degenerative neurological condition at 44 changed my outlook on life. I now don’t save up things until that very busy day in the future, “one day”. I do things now.

Janet: How has your PD developed since you were diagnosed in November 2012?

Julie: “They” say you have five good years with PD. Don’t get me wrong, I definitely had PD. Symptoms were random, diverse, annoying and debilitating, but, at the time, they didn’t stop me doing anything. Today, 12 years diagnosed and despite having deep brain stimulation surgery and taking 802 tablets a month, I am becoming more and more disabled by the condition.

Janet: Friends, acquaintances and strangers often feel helpless and ask what they can do to help.

Julie: I might ask you to look out for obstacles. Walking backwards, running or doing a silly walk is often easier than walking forwards. The Wise(ish) Man might ask you to stick your foot out so he can step over it to initiate his walking.

Please don’t judge this book by its cover. Often my facial muscles will stop moving, meaning my face becomes like a mask. Sometimes I look blank and cross when I’m not (unless I am).

“No thank you, it’s safer if I stand”. Please don’t be offended if you offer me a seat and I refuse. Balancing on a bar stool whilst doing the dyskinesia dance is hazardous.

Please be tactful if you notice that I smell. PD has robbed me of my sense of smell. “You smell a little disagreeable today” is preferable to “Cor blimey luv, you stink”.

My writing is so indecipherable that I could, almost, qualify as a doctor. I might ask you to write my shopping list. Thank goodness that, at the moment, I can still type.

Janet: Anything you’d like to add?

Julie: PD was, I thought, my thing. Then, in 2019, I was diagnosed with Crohn’s disease, another (currently) incurable chronic condition. This diagnosis sent me into meltdown. Scans, blood tests, stool tests and the awful colonoscopies meant yet more dates for the Wise(ish) Man and I at hospital appointments. Fortnightly injections are keeping it under control at the moment.

Crohn’s is an invisible condition. For example, were you aware that Strictly professional dancer Amy Dowden lives with Crohn’s (as well as having breast cancer) and was raising awareness during Crohn’s and Colitis Awareness Week?

I feel it is time I stopped burying my head in the sand and began writing more about my experience of living with Crohn’s.

With still no cure for PD, I will, disappointingly, end my 100th column as I finished my first. If you are a neuroscientist, or if your Auntie Mabel happens to be one, then please encourage them to find a cure. Although it is not essential that the person who cures Parkinson’s is you, is called Mabel or is your aunt. They don’t even have to be a neuroscientist - I’m really not that fussy.

(Still) waiting (im)patiently.