Jim next door has Parkinson’s. They’ve suspected it for a while, Jim and Ann, and given his symptoms – asymmetrical pill-rolling style tremor; writing gone very small – I suspected it too. But they had to wait ages to see a neurologist and finally got confirmation last week.
Ann came round to tell me and asked how long it was since I’d been diagnosed. Just over four years, I told her, and tried to look jolly and bouncing with health. Which, actually, I am. Pretty much.
So I’ve been gathering together some bits and bobs to share with them: things I wish I’d known when I was diagnosed. In the process of which, I came across this email, saved years ago in the corner of a Parkinson’s folder on my laptop and gathering dust ever since.
“Sorry to hear this – what a shock for you. But there are many degrees of Parkinson’s, and many treatments, so the outlook for you may be brighter than you first think. Best wishes, Margaret. 3rd June 2012.”
Now, I didn’t know Margaret well so it was jolly decent of her to write. At the time of my diagnosis, I belonged to the Flowerdew Woodwind Ensemble, where, every Tuesday night, we rehearsed, working towards a termly concert. Margaret was a confident first clarinet whereas I sat on the opposite side of the rehearsal room from her, miming with the second flutes.
I’m not being modest here – just honest. I do have a history of musical deceit, reaching from miming the bugle in the Girls’ Brigade band through to miming the alto part in a choir singing the Carmina Burana at the Albert Hall. There’s nothing like miming to get you a really good seat in any musical experience: I can thoroughly recommend it – as long as there are a reasonable number of non-mimers around. If everyone mimes, you’re stuffed. Unless you’re playing John Cage, of course.
I started learning the flute in my forties, scraped through Grade One and then blagged my way into the Ensemble when, on a good day, I could play a proportion of any slow bits and, perhaps, the first note in each the bar of the rest. Luckily, there were so many flutes in the group that my sporadic playing was either not noticed, or people were too polite to mention.
Anyway, the week after my diagnosis, I resigned from the group. My understanding of Parkinson’s was such that I was pretty sure that soon I’d not be able to play even at my lowly level. Before long, the only instrument available to me would be the maracas. Best quit before things became embarrassing.
Within a couple of days, I’d received Margaret’s email: very, very welcome at a time when I really needed glimmers of hope. I returned to it many times. And, of course, she was quite right: things have been much brighter than I’d thought. Nowadays, I play my flute with a handful of friends every couple of weeks for the sheer fun of it and, to the possible disappointment of the neighbours, none of us mime. I rest my right elbow on the arm of the sofa if I get tired and when my hand shakes – well I prefer to call it tremolo.
Last week, I was at a committee meeting at the Royal Free with a couple of inspirational ladies who have had Parkinson’s for longer than me and, rather than using it as an excuse to wimp out of flute practice, have positively embraced new challenges. Sally has, since diagnosis, learnt the saxophone – is, in fact, about to go on a week’s holiday playing every day. What’s more, she has now also taken up the drums, with a full drum kit installed in the shed where she used to store her teenage children. She is, like myself, a woman of a certain age and made us laugh describing the reaction of those around when she turns up for her lessons with her young, tattooed teacher. She is convinced that the challenges of co-ordination in learning the drums is a positive thing for the old neural pathways. Definitely worth a study by someone, I feel.
Jeannie is equally inspirational. An ex-physio, she’s built herself a really broad and interesting exercise program, including rowing, yoga and Pilates. It must be working because, in all honesty, you’d never know she had PD. Among other things, she’s also interested in exploring how dance can enhance co-ordination.
I positively skipped out of the room, after spending time with these women. If I can pass on a fraction of this spirit to Jim when we meet for a chat, I’ll be well pleased. In the meantime, I’ve decided to start learning the piano in the autumn and am looking for a kind teacher, tattoos optional. I’ve bought a digital instrument off Gumtree and, usefully, you can plug in headphones so no-one else can hear you practise. I can see that being a real boon when it comes to miming.
If you’re in need of further musical inspiration, the Guardian had a link this week to Michael J Fox joining Coldplay onstage in New Jersey to play along with some songs from Back to the Future. Twenty five years since diagnosis and still rocking like a good ‘un.
My friend Michael Mears is taking a one-man show to the Edinburgh fringe in a week and a half. It’s inspired by the story of some conscientious objectors in the First World War and Mike is blogging about the process of getting it ready to perform, which I’m finding really interesting, so you might too.
As we’ve gone all musical this week, I’ll mention the story he tells of a piano tuner who’d applied to register as a C.O. The panel turned him down on the basis that some of the pianos he’d tuned might have been used to play military marches or patriotic songs, so he couldn’t possibly be a conscientious objector!
[…] I’ve been thinking about Jeannie, who’s on the same committee as myself at the Royal Free. She, you’ll remember, is a passionate advocate for exercise and is living proof that it works: you’d not guess she was a Parkie unless she chose to tell you. The message is coming at me […]
[…] is also on the committee, which is great because she’s an inspirational cove; particularly a testament to the benefits of exercise. One of the activities we were asked to do yesterday, was to write a short description of our PD […]
[…] It was our first meeting; most of the faces were new to me but it was great to meet up again with Jeannie who I’ve worked with on other committees and is really inspirational; among other things, a powerful testament to the efficacy of […]