Everybody with Parkinson’s remembers the anniversary of the diagnosis or ‘parkiversary’. I am no different except that I have had more than a few. I was diagnosed with Parkinson’s on 11 December at Pembury Hospital at Tunbridge Wells. In itself the diagnosis was unremarkable, being delivered in a brisk no-nonsense kind of way by a female German neurologist on secondment from Hamburg I believe.
“You have Parkinson’s disease, Mr Stamford” she said, instantly reducing my wife to tears. “Dr Stamford” I said “that’s Dr Stamford”. She looked bewildered for a moment before countering with “but you are not a medical doctor”. “No” I said “I am a neuroscientist” before giving her a brief summary of my prior research career. My wife, quietly sobbing into a handkerchief in the corner, brought this sparring to an abrupt halt. “But you started it” she said as we walked back to the car. “No I didn’t” I offered in a feeble attempt at humour “she invaded Poland”. My wife’s raised eyebrow indicated that the conversation was over. We briefly compared notes before setting off back to work.
All this was the work of a single lunchtime, exactly 18 years ago today. The neurologist, Dr Panzer*, did not invite questions. I just simply became a number, a new manila folder to be filled with shaky spirals, samples of handwriting, and all the usual scans. For that lunchtime, the folder had my name, address and GP. Dr Panzer referred me for an MRI scan and the pages began to fill up further folders (and this is a real folder, not a computer icon).
Before levodopa, life expectancy was poor. Six years from diagnosis to death. And if we are honest, six rather shitty years at that. To reach 18 years of Parkinson’s is, though I say so myself, something of an achievement, albeit a largely passive one, achieved through some 60,000 tablets, potions, salves, balms, and implanted electrodes to stimulate deep brain structures. Oh and exercise of course.
Eighteen years. If it was a lodger, and I sometimes think it is, albeit a largely unwelcome one, the notion of it occupying the spare bedroom in perpetuity would be decidedly unappealing. Even if it was one of one’s own children, 18 will usually be the point where it would be packed off to university with student loan and armfuls of books.
Okay Parkinson’s, it’s time to go. That’s you to go, not me. They have even demolished my local hospital and built a new one in the time you have been occupying my brain, bouncing around in my basal ganglia, lolling on the loungers of my limbic system. 18 years is too long to occupy anyone’s brain. You have wasted enough of my life. I would like to say it’s been lovely but it hasn’t. Take a hint. You are the worst kind of houseguest. If I could kick you out and change the lock, I would do so.
*You didn’t really think that was the neurologist’s full name?