One step forward, two steps back

In my world, one step forward and two steps back is still three steps to celebrate. Or a half-decent cha-cha-cha. Here’s my round-up of the wobbly progress ParkyTracks has made this year.

This meme is doing the rounds again:

Maybe my wobbly progress wouldn’t merit a 10 from Craig Revel Horwood. But I don’t think it’s been a ‘disaaaaaster, dahling’ either. Since I launched ParkyTracks in March, I’ve written 43 blog posts about my life with Parkinson’s to educate, encourage and entertain.

I’ve covered a wide range of topics, including:

• Support – husband, daughter, drivers, friends, pets, and my lovely sports bra
• Activities – Nordic walking, Kickboxercise, running, table tennis, Argentine tango
• Preparation – for holidays, safe fell walking and stress-free rail travel
• Problem solving – asymmetric gait, fiddly fastenings, tiny handwriting

It’s this last one, problem solving, I’ve enjoyed most. Parkinson’s presents a number of irritating challenges. I’ve shared my own solutions, most of which sit in that comfortable anecdotal zone between randomised trials and snake oil. Disclaimer: Even though I’ve learned lots of stuff, remember I’m not the doctor. Please see your own doctor if you have any worries about your meds.

Fan base

I am surprised and delighted at the response from people without experience of Parkinson’s. I’ve built up quite a fan base from my previous life as a copy editor and proofreader. I left my professional network – the Chartered Institute of Editing and Proofreading (CIEP) – but they didn’t leave me, and many followed me out into social media. Bless them, they don’t pull me up on the issues of spelling, punctuation and grammar (SPaG) that have inevitably crept into my work. Instead, they give me regular and positive feedback and help me spread the Parkinson’s message through Twitter and Facebook.

I asked two of them which posts have:

• made you laugh?
• made you cry?
• made you think?
• told you something you didn’t know?

Riffat Yusuf  is an editor from West London. We haven’t met in real life but it’s only a matter of time as we have a date at Sassy Nix, the local lingerie parlour that featured in Lifted. I have met Chris Lindop, a now-retired editor living in Bristol. She has been my ‘glamorous assistant’ on a number of memorable conference occasions.

Both of them laughed most at Lifted – my quest to find the perfect fitting sports bra. Riffat said:

“Anything about boobs is funny, but your pre-bosom was lol. I also learned about trombones, where your boobs sans lettres were actually A-Flats.”

My account of giving up the trombone was a trigger for Chris’ tears. To be honest, she can dry her eyes because I’m making much nicer noises on the tenor horn.

Riffat pleaded:

“Do NOT write about your husband or your daughter. I mean, do, but be as clinical as you can, please. In My Baby Just Cares for Me I looked at Robin and cried. Just. One day, he’ll be here and you won’t. Or vice versa. And any mention of a child (Hakuna Matata) sets me off.”

Making you think

Chris said:

“There’s always something that makes me go, ‘really? I didn’t know that.’ And that makes me think. Whether it’s the multiple effects of Parkinson’s, or the cunning ways of dealing with them. I didn’t know about the postural slump, for instance.

I love the ‘OK, so here’s a problem, what do we do about it?’ flavour of your posts. I am busy applying the same approach to my senile keratosis. Since so many of my friends seem to have it as well, I’m currently thinking of forming a support group to be named The Glorious Company of Barnacles.”

Riffat said:

“The thing about all of your posts is that the proper learning (which I feel I ought to make more of an effort to remember) is secondary to learning about you. I like getting to know you; learning about Parkinson’s is a bonus. Perhaps when I read your posts, I’m also learning about myself. Every single post makes me reflect on the lovely hand I was dealt and how randomly that might be wiped or eroded. We all have to die, and when I read your posts I want to live more – am irritated at myself that you put more into a day than I do into a week. Month.”

Thank you, Riffat and Chris, for being so kind and constructive. I’ll try not to make you cry, but I promise I’ll go on educating, encouraging and – most of all – entertaining.

Favourite lines

You’ll have your own, but these are my top three:

• “First we take St Neot’s, then we take Berlin.” (table tennis)
• “Believe me, there’s a great deal of frustration you can let go if you shout out stations on the London Underground’s Piccadilly Line. Especially #1 and #10 from the top.” (dual tasking)
• “Smethwick Galton Bridge station is the work of the Devil. Or if not the Devil, then MC Escher, he of the illusional staircases.”(rail travel)

What’s to come?

Who knows which letter of the Greek alphabet COVID will be up to by this time next year? If we run out, maybe – like Only Connect –we will have to move on to Egyptian hieroglyphs. Twisted Flax, anybody? 

One immovable feast is that I have a birthday-with-a-nought-on-it coming up at the beginning of March. Later in the year, I’m thinking about getting a dragon boat racing team together. Some fundraising opportunities, for sure.

And be assured that I haven’t yet run out of ideas to educate, encourage and entertain. Thank you for reading!

 Play > Crazy Country Fool > Rob Heron and the Tea Pad Orchestra

At last, the chance to feature a local star – Rob Heron grew up in Penrith, where his talent was nurtured by the community music project Blue Jam Arts. Then he met up with a bunch of other talented musicians at Newcastle Uni and the result is a delightful mish-mash of genres. “One step forward and two steps back” is the chorus of this song, and I’ve been singing it all week. Another favourite of mine is the “Drinking Coffee Rag”.