In theory it’s no secret that I’ve ‘got’ Parkinsons…. but in practise, since first being diagnosed back in – what, it must have been 2018… I have found it quite difficult telling ‘everybody.’
And no, the irony of the situation I find myself in – particularly as the ‘disease’ progressed, and slowly but surely robbed me of my voice, and with it the ability to conduct even the simplest of (verbal) conversations – is definitely not lost on me. You know, the bloke who loved to talk…and talk!
Now, as I tried to explain to Johnny Reid at Motorsport NZ’s 75th anniversary Awards function in Auckland on Saturday July 30, I have to let my ‘writing do my talking for me….’
Speaking of which, when I was invited to attend the Motorsport NZ 75th anniversary Awards function in Auckland on Saturday July 30 to be presented with a special Citation Award, I figured that it was the perfect opportunity for me to ‘come clean,’ to ‘fess up’ about my ‘condition,’ whilst among friends, then follow it up with a column on Talk Motorsport and post on Facebook…
That surely, would cover the vast majority of people who either 1) needed to know, and/or 2) just plain liked to know….leaving me free to get on with living this new life I find myself living without – for instance – 1) constantly finding myself apologising for not being able to make myself heard…and/or 2) constantly apologising for mumbling and/or speaking too quietly (often in a ragged sort of whisper) when I do manage to rustle up enough energy to join a conversation.
And so it was that my wife Delia joined me on stage and thanked everyone on my behalf after explaining that ‘yep, Ross has got Parkinson’s and these days finds speaking a little difficult…’
Which is all very well. But what exactly IS Parkinson’s? And how has getting it otherwise affected the way I live my life?
Well, had her mandate been different, Delia could also have added that’ Ross is no longer as steady on his feet as he once was,’ and – before a recent tweak to his medication – ‘he was tripping over his feet and falling over on a fairly regular (at least 2-3 times a week) basis.
Otherwise?
“Ross is in generally good spirits and is looking forward to a getting back on his Mountain Bike after six months off recovering from a serious shoulder injury which,” he is happy to report, “had absolutely nothing to do with his Parkinson’s diagnosis and everything to do with going out too hard, too soon on an unfamiliar trail…and paying the price with an endo of truly epic proportions.”
According to the US-based Parkinsons Foundation, Parkinson’s Disease (PD) is ‘a neurodegenerative disorder that affects predominately dopamine-producing neurons in a specific area of the brain.’
In much the same way as you might ‘know’ that actor Michael J. Fox, singer Linda Ronstadt and comedian Billy Connelly all ‘suffer’ from Parkinson’s Disease, you might also have heard of dopamine – it’s a neurotransmitter made in the brain, which acts as a chemical messenger between neurons and is widely regarded as a ‘reward’ compound.
Elevated levels of dopamine can make you feel euphoric and – for instance – are associated with ‘runner’s high,’ the ‘buzz’ athletes get after prolonged high intensity exercise sessions.
Which, again, is all fine and dandy – as long as your brain continues to function normally.
The ‘problem,’ if you like, at the heart of Parkinson’s, is that for some (currently still very much unknown) reason, the brain simply stops producing it.
Fortunately, back in the 1960s researchers discovered/developed a compound they called Levodopa which, when absorbed into the bloodstream turns into Dopamine when it reaches the brain.
When combined with an anti-nausea compound called carbidopa in a small ovaloid pill under the brand-name, Sinemet, Levodopa has very much been the ‘wonder-drug’ for the global Parkinson’s community for the past 50-60 years.
Unfortunately….because your typical motor symptoms (tremors, slowness of movement, and falling) only really show themselves when 60-80% of the brain’s dopamine producing neurons are buggered, you are always in catchup mode to the point where, once you have reached the fifth (and usually considered the final) stage of your Parkinson’s journey, (between 7 and 15 years after your original diagnosis) no matter what dose (of Sinemet) you are on it will never be enough to keep you operating like a ‘normal person….’at which point – and let’s not beat about the bush here – you really are right, royally rooted.
So where does that place me?
To be perfectly honest, I’m not quite sure. I’m not (sure) because in the 3, 4, 5yrs that I have ‘had’ ‘Parkinson’s the one thing I have realised is that no two people who ‘get’ it exhibit the same set of symptoms. Or – for that matter – the same progression in terms both of symptoms and speed by which they progress.
For a start there is age. Once classified as an ‘old person’s (70+) disease, it is now very much a ‘disease’ (or as I prefer to think about it, a ‘condition’) of the ages, with 50 in the US and 60 here marking an artificial and arbitrary break between what has been labelled Young On-set Parkinson’s and ‘normal’ Parkinson’s.
Me? I was officially diagnosed at age 58 so sort of snuck into the ‘Young On-set’ group here, meaning I was still working and figured -at the time anyway – that I would be for the foreseeable future anyway.
As it was, my original diagnosis was based more on my non-motor symptoms (deteriorating handwriting, debilitating leg cramps, and what Dr Snow referred to as ‘emotional incontinence’ or what manifested itself in me as a ‘very un-Ross MacKay-like’ tendency to burst into tears at the slightest provocation) rather than the more usual motor ones (the basic Parkinson’s resting tremor or shakes, which – touch wood – I have never really had), muscle stiffness (ditto) and Bradykinesia (a general slowing down of body movement and including a masking of the face] which is just starting to affect me now).
So…in a way I have been lucky, in that I have been able to work around for what most people is a debilitating and deeply depressing drop down the social order from independent wage or salary earner or self-employed man or woman about town to beneficiary living an assisted life with a person society now considers is a caregiver rather than a loving husband or wife.
This then was the main reason I decided that I had had enough of ‘working for the man!’ and needed to devote all my time and energy to looking after myself rather than what was left after a 6/7-day, 70-80-hour, working ‘week.’
Don’t get me wrong. I loved the challenge of doing each job well, however I slowly but surely began to resent the ever-increasing amount of time each one seemed to be taking out of what I now saw as my ever-dwindling store of ‘good days’ left.’
I would definitely have stuck it out had the money been better, but it actually got worse for me (as a contractor rather than as a simple wage earner), especially through the long days of NZ’s first COVID-19 Lockdown in 2020.
And when I was, IMHO, (In My Humble Opinion) unfairly blamed for an issue of NZ4WD not reaching the printer on time, I resolved to hand in my notice as soon as I found an alternative source of income.
In theory, that should have come from a better paying and less stressful job. In practise, however, it came via one of those disability/job insurance policies I had been paying into for years, without – in all honesty – paying too much attention to what it actually covered.
When I did though, I realised that because Parkinson’s was one of the ‘disabilities’ the policy paid out on, and because of the issues others were apparently having with my (lack of) voice) I figured it was in my best interests to gather up the usual selection of .pdfed letters from my GP and Parkinson’s consultant re my status as a ‘Parki-ha’* then leaving it up to my long-term insurer to decide whether I indeed qualified.
Needless to say, I did (qualify) so I emailed Cathy my resignation from NZ4WD magazine and Motor Equipment News and set about finding someone to do an even better job than (I believed) I had done publicising KartSport here and around the world for the past 25 years.
When the redoubtable Ian Hepenstall agreed to join a conversation, I was having with KartSport NZ execs Graham Moore, and Robert Hutton I knew we were on the right track so I was able to walk away from that relationship confident that all the time and effort I had put in over the past quarter of a century would not be wasted.
And with that my working career was over and I was finally free to focus all my workaday energies on my Parkinson’s diagnosis.
*‘Parki-ha;’ An in-joke shared by Kiwis living with Parkinson’s in Aotearoa/NZ.
MotorSport NZ Citation Award – 2022
MotorSport NZ added a special Citation Award to its annual awards roster back in 1979 to honour, ahem, ‘those persons, who not being a member of the motorsport movement had, in the opinion of the Executive Committee, given exemplary service to the sport outside their employment and association with it.’
This year I was one of two such ‘outsiders’ to receive such recognition, for ‘a job well done,’ he other being fellow Aucklander Tony Herbert.
In my case the award was prompted by a milestone of sorts – the upcoming 20th annual SAS Autoparts MSC NZ F5000 Tasman Cup Revival Series, and the fact that I have been ‘doing the press’ for all 19 of the previous ones.
In that time, I’ve obviously written – and seen published around the world – tens of thousands of words about the absolutely iconic stock block 5 litre V8-powered wings-and-slicks single-seater racing cars -and their current generation of owners and drivers – which the SAS Autoparts MSC NZ F5000 Tasman Cup Revival Series was originally set up to showcase.
Along the way I have learned enough about the cars to be able to write about them from a position of authority; something very few of my contemporaries in the journalism game here can claim.
The bit I really like about the blurb that came with the award was contained in the final paragraph which stated that; “Ross has given stellar service and contributed greatly to journalism and PR for motorsport in New Zealand and is very deserving of this citation.”
Of course, having been very critical of the way MotorSport NZ has managed its media awards over the past 10 or so years the last thing I was expecting was an invite to attend the black tie 75th anniversary awards function at the Auckland Museum on Saturday July 30.
In fact, had my wife Delia and F5000 committee member David Abbott not come clean about their collusion with MotorSport NZ to make sure I was at the function to receive my Citation award in person I would have been at ’the Mount, lapping up the action at the final round of the 2022 Valvoline D1NZ National Drifting Championship at Bay Park Stadium.
As it was, I spent a very enjoyable evening celebrating success; something that – IMHO – we don’t do enough of!
Comments