‘So, where do you see yourself in ten years’ time?’ If I’d been asked that question in 2006, I would have seen a me very different to the one that sits, laptop atop lap, slowly tap-tapping out the words you are reading. I had recently handed in the draft of my PhD thesis to my supervisors, and awaited their approval. It was a long time coming as they were both ill – sadly they are both now deceased – and this delay meant I ended up submitting late, thus missing the cut on several jobs. Unexpected event no. 1. Two years later, I drove home clutching a bag of pills and a brand new diagnosis. Unexpected event no. 2. I wrote an article for the Independent – sadly now deceased – called ‘The Longest Wait‘. Here’s an extract:
My New Year was somewhat blighted by the revelation that I had acquired Parkinson’s disease. That’s how I put it. Acquired. Like experience. It just creeps up on you.
But here’s the rub: I don’t look ill; I don’t act ill; I don’t even feel ill, yet I am. And this is what’s strange. My life hasn’t been ruined by this disease – I’m not about to die – but it certainly has changed. The problem is that I don’t know what’s going to happen: all I know is that something will.
Moving swiftly on to 2013, I published a book called Slender Threads: a young person’s guide to Parkinson’s disease. In this I considered the fact that I did now know pretty much what was going to happen to me, and why. I merely lacked a ‘when’ and a ‘what it feels like’. Parkinson’s was, for me, a disease of anticipation. That was its ‘exquisite torture’, the inevitability it brought to the table. Of course, coming to terms with the inevitability of our decline is at the heart of the human condition. We all have our ‘Mistah Kurtz’ moment. A diagnosis like Parkinson’s casts this inevitability in a different light, however. It makes it visceral. It makes it come eversomuch closer. It makes it real.
In the three years since Slender Threads, my condition has deteriorated markedly. This deterioration was nowhere more obvious than in my gait. I walked – if my zombie shuffle deserved the name – on the balls of my feet, forever falling forwards until breaking into the inevitable scuttling semi-run. People started to make comments, as described in mental as fuck and you can tell by the way I use my walk, but would even shout out ‘learn to fucking walk properly’ as if this were the height of wit. I began to use a stick, partially to stop me from falling over, partially to scupper the comments. So, I finally felt disabled. Not good. It did have its upsides, of course. Passport control. Seats on the tube. No twatty comments (though the looks continued).
I realised I was under-medicated, so tried to get an appointment with my neurologist. Two months passed: nada. Back from Florida, I phoned the department, only to be told they had no record of me. I pointed out they’d diagnosed me, and eventually I was located. The conversation went something like this:
‘You’ve been discharged.’
‘Oh, I’m cured! How fabulous! Er, why?’
‘You missed an appointment.’
‘Well, I didn’t, but if you thought I had, why didn’t you call to find out why?’
‘It’s not policy.’
‘And you didn’t tell me I’d been discharged?’
‘It’s not policy.’
‘Let me get this straight. You have a patient with a chronic, incurable disease that can lead to falls and cognitive difficulties, and if they miss an appointment you don’t think to enquire as to why, you just discharge them?’
‘That is correct.’
‘Do you think that’s intelligent?’
So, they finally give me an appointment, 8 weeks away, and the letter they send (twice) is one of the ‘you might find it comforting to bring a friend or family member’ letters … I’m being sent for diagnosis! It reminds me of when, in hospital years ago, a nurse came to tell me I had a phone call. From Pete Langman.
Reader, I went private.
Within a week, I was re-medicated. Within two, I had hung up my stick. That’s right, I can walk (almost) normally again. But this bombshell comes with caveats.
I reckon that in most ways my body is back to 2012 functionality. Which is awesome … but
In 2012 I knew my body would at some point reach (and sink below) the lows of, say, this February, when I must have looked as if I were eighty years old as I shuffled and clattersticked my way around town. I knew it would come to that, but I didn’t know what that would feel like.
Now, I know. I have felt my future. Parkinson’s no longer operates by a nod and a wink, no longer is it a stick with me and I’ll grind you down disease, a disease that invents new symptoms that it slides stealthily between your ribs. Parkinson’s has shown me my future. It’s allowed me to experience it. As I wrote in Cogito, ergo amo,
what they had just witnessed was beyond special, beyond even unique; it was the future. And it didn’t seem to like them that much.
I’m still unsure how that makes me feel, but I can promise one thing: I’m not sitting here waiting for the knock on the door.
Nice one Pete. I think of you lots.
Cogito ergo amo is a great line. I only wish it were true!
In the meantime Noli Morbus Parkinsoniae Carborundum.
The sparkle returns , may it remain as long as is possible 🙂
Brilliant! Matches my experience of the NHS exactly.
The only additional experience you may have to look forward to is that, due to the
excessive and specific movements caused by a particular brand of pd, you will get
pd + another unwelcome visitor (i.e. pain-in-the-ass).
I’ve had pd for 14 years and in that time have had DVT (deep vain thrombosis) as
well as a trapped spinal nerve, to accompany my pd. The former led to a course of self-injected warfarin – which, in addition to throwing my pd-drugs timings out of the
window caused my leg to swell somewhat alarmingly. The latter was so impossibly
difficult to organise on the NHS (‘but I cant walk!’) that, like you, I went private for
release of a trapped nerve and spinal decompression. £10000 later I can walk
again and ONLY have to deal with pd. Oh well….just another 9 months to my next NHS appointment!
After watching you hit every one of those 61 runs….and keep wicket! I recognised the ‘parkinsons’ tremor as my great uncle had it too.
You are truly inspiring and it was a pleasure to meet you.
Katie (scorer and Matts mum) 🙂