“And next on the line is Jellywoman. Jellywoman, what was your experience of being diagnosed with Parkinson’s?”
In truth, I have no idea what I said to Nicky Campbell, beyond reassuring him that only about 5% of PD is hereditary: apparently, his mother had it. By the time I was actually speaking live on air, I’d already talked about being diagnosed to the nice young man who’d answered the phone in the first place, and to the nice producer who called me back. Now all three spiels blend together under the general theme of ‘Don’t panic, Mr Mainwaring,’ which is the message I’d needed to hear on diagnosis.
It’s a strange experience, talking on a phone-in: being completely without feedback. Your words just drop into silence, so there’s no way of judging whether or not you’re making sense.
Normally, when rattling on about something, one adjusts to take account of the reactions of recipients of said rattle. So when half the front row start asking to go to the toilet, then it’s time to move on from the Minor Prophets already. Even on the phone, it’s usual to hear some sort of affirmation from the other end.
Not on a phone-in though. I’m guessing that, over the radio, it might sound odd for the speaker to be overlaid with a stream of ums and ahs, he didn’ts and you don’t says. But it is, as I say, disconcerting to be talking into silence. Perhaps I’ll be a little kinder in future when listening to phone-in-ers, in the couple of seconds it takes me to get to the wireless and change the station.
It’s been a bit of a week for rattling on about the big P. Saturday last, our local Rotary group organised a brilliant quiz to raise funds for Parkinson’s UK, in the interval of which I spoke a little about the work of PUK and managed to completely forget to thank the organisers of the quiz. Ah.
And yesterday afternoon, I rattled on to a group at a nearby church. I’ve been pretty anxious about this last one, as they didn’t invite ‘a representative of PUK’, they invited me to talk about my personal experiences, one of the group being my next-door-neighbour. It didn’t feel appropriate to give my off-the-peg PUK talk, though, of course, I plundered this for the factual stuff about PD.
Musing about what to say, started me thinking again about the effect that being diagnosed has had on the direction of my life. I know that the balance will change over time, and that this will not be true for everyone, but for me, at this present moment, Parkinson’s comes bundled with many positives.
I’ve mentioned before Auden’s line ‘O bless the freedom you never chose’. I’m pretty certain that, without PD, I’d still be hammering away at the chalk-face, balancing all the cabbages, trying to teach children not to muddle their metaphors. More money, but absolutely no time.
Preparing for yesterday’s talk drew me back to the brilliant Tom Issac’s book Shake Well Before Use. Diagnosed with PD at 27, Tom embarked on a walk around the coastline of Britain, raising both funds and awareness. Following this, he went on to found The Cure Parkinson’s Trust and is a compelling public speaker, if you ever get the chance to hear him.
Nearing the end of the walk, he says:
It was strange to think that, had I not been diagnosed with an incurable and degenerative neurological disorder, I would never have had so many good things in my life. The walk was of course one of these – I simply would never have done such a thing had I not had Parkinson’s. And this was not just about scenery and the physical enjoyment it gave me, but also about the people who had been involved […] But there was something more to it than that and I couldn’t put my finger on it; the perennial problem.
I fished out a carton of juice from my backpack and pulled the straw out of the polythene wrapper. It was a bit fiddly, but I managed, and inserted it in the hole at the top of the carton. My eyes were suddenly drawn to the words printed there: “Shake well before use”. I remembered how the words had hit me so hard on the day of my diagnosis; how I had felt doomed to a life of shaking and being of little use. I also remembered how, later on, I had laughed at the same words, realising that the instruction was somewhat superfluous given my condition. And now, towards the end of my walk, they meant something different again. Maybe before Parkinson’s, I was doing nothing particularly constructive. Could it be that the words I was now looking at were telling me that I had become useful to the world when I had started shaking?
On which note, I had better rouse myself as this afternoon’s shaking consists of a bucket at at Waterloo Station. And a happy Parkinson’s Awareness Week to you all.
This week, a whopping £1.24 has gone to the Cure Parkinson’s Trust when I bought some Hotter Shoes online, bringing a cure just that little bit nearer. Plus, I get new shoes, yay!. Whatever cause is close to your heart, chances are GiveAsYouLive will donate to it. Just saying. The link is here.