Let’s go round again

I’m shamelessly recycling and repurposing my blog content to meet the needs of a new cohort of people with Parkinson’s, and their supporters.

I’m rather partial to root vegetable kettle chips, a colourful mix of beetroot, carrot and parsnip. One evening in the eighties I was at a posh press jolly and spied a big bowl of them. “Ooh! I love these!” I said, grabbing a generous handful, and… “Bleeurgh!” as I realised I was munching highly-scented rose petals.

The Parkinson’s bowl offers up a bizarre pot-pourri of symptoms, and everyone’s bowl is different. I used to think it was all about uncontrollable movements, and for some people that is the reality. My body doesn’t do anything I don’t want it to. It does everything I do want it to, just very, very slowly.

Just when I think I’ve hacked one problem, I dip my hand in and find something new. It doesn’t always smell of roses or taste of beetroot. Early on, I realised that I would have to take these challenges one at a time, rather than fretting about them all at once. Faced with a huge amount of information (and mis-information) on Google and social media, I learned to sift and filter. What was I going to do with all this stuff?

You must write!
Early in my Parkinson’s life (summer 2019) I heard the words “must” “should” and “really ought to” a lot. Always a bit of a rebel, I tried to ignore these imperative voices unless my non-compliance would take me to A&E or the police station. Folk were well-meaning, I know, but I wanted to manage Parkinson’s my way, on my terms.

So when my friend and mentor Penny said: “You must write!” my reaction was lukewarm. I’d retired from a career pushing words around a computer screen. Eliza Doolittle in My Fair Lady sang “Words, words, words – I’m so sick of words!” and that was how I felt.

But Penny persuaded me that I have a skill with them. And, as I have absolutely no skill with camera, paintbrush, needles or clay, it made sense to keep using words as my raw material.

In those early days I was prolific. Lockdown gave me a lot of time to think, develop and build. It gave my readers time to read, reflect and act on some of the ideas that caught their fancy. And I hope, a good laugh, because I have never taken myself too seriously.

A wider reach
Although my primary aim was to inform and entertain people with Parkinson’s (pwP) my readership includes a surprisingly high number of people without. Sam, a friend from uni more than 50 years ago, says:

“Learning about it is invaluable, and fascinating. We are all aware that anyone could join the ranks of pwPs at any time, of course, so it is great to understand it a little better. But I have also found it really helpful in chatting to people who are already there, especially when meeting them for the first time, socially. Rather than politely avoiding the subject, I have asked about their experiences and then enjoyed their relief at talking about it.”

Di says:
“Your blog helps me to gain an understanding of how those with Parkinson’s feel and the issues they have to contend with. You show how we can help and support pwP without appearing patronising.”

Penny is glad she persuaded me to write. She says:

“Thankfully, some people have (and hang on to, in spite of life’s challenges) a way with words. Ali is definitely one, putting her heart and soul into ParkyTracks. Keep on informing, entertaining and inspiring us, Ali!”

Pointless, incessant barking
After a while informing, entertaining, and inspiring can become exhausting . As many other bloggers have found, life gets in the way and my posts fizzled out to a dribble, from 41 in 2021 to 6 in 2024. We moved house in 2023 after a long and complicated conveyance filled with anxiety that was not of our making. This anxiety, coupled with a long wait to connect with my new healthcare team, was not conducive to creativity. As cartoonist Alex Gregory captured in the New Yorker magazine back in 2005:

“I had my own blog for a while. But I decided to go back to just pointless, incessant barking.”

Here’s one I made earlier
Often, when people ask a question that needs a longer answer, I’ll remember: “I’ve written about that before.” In true Blue Peter style I usually have one I’ve made earlier. TV channels like U&Dave mean that on any given day I can choose to watch any of Rick Stein’s odysseys or old episodes of QI. I’ll try a new recipe, learn another arcane fact I don’t recall from the last time they were broadcast. Many repeats are better than the new stuff on offer.

Every year, around 18,000 people in the UK are diagnosed with Parkinson’s, and they are thirsty for solutions to the many different problems it presents. So I’m proud to dust off and polish my old stuff and bring it up to date with everything I’ve learned since I last wrote about it.

Play >Let’s go round again > Average White Band

Cartoon by Alex Gregory

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