Those five words from the neurologist will live with me forever. But, strangely, I had started writing about my disease before I knew I had it...
Sunday 8 January 2017
This morning I
realised that, aged 47, I am already three quarters of the way through my working life.
Presumably it is the same for many, perhaps most, other people but mid-life largely crept up on me. In our twenties and thirties, we are physically and mentally at our strongest (though emotionally it may sometimes be a different story). Turning forty didn’t seem particularly significant for me, but in retrospect it marked the start of a long gradual decline that I simply didn’t see coming at the time.
First to go was my athletic performance. I used to run well inside 40 minutes for a 10K every year off the back of training only three times per week. As the early forties ticked on I scraped progressively closer to the magic 40-minute mark to the point where, aged about 45 I finally failed to cross it.
Presumably it is the same for many, perhaps most, other people but mid-life largely crept up on me. In our twenties and thirties, we are physically and mentally at our strongest (though emotionally it may sometimes be a different story). Turning forty didn’t seem particularly significant for me, but in retrospect it marked the start of a long gradual decline that I simply didn’t see coming at the time.
First to go was my athletic performance. I used to run well inside 40 minutes for a 10K every year off the back of training only three times per week. As the early forties ticked on I scraped progressively closer to the magic 40-minute mark to the point where, aged about 45 I finally failed to cross it.
My last decent run was
in early 2013, aged 43, when I clocked 1:25 for a half marathon. I was pretty chuffed that day as the time
compared very well to my best of 1:20 from 15 years earlier when I was training
five or six times per week. But even
then I didn’t fully realise what was happening to my body. Wind the clock forward by only three years to
February 2016 (aged 46) and November 2016 (aged 47) and I put in two marathon
performances, in Tokyo (3:47) and New York (4:18) respectively, that were way,
way below the 1:25 half in terms of performance despite doing a similar amount of
training. A 1:25 half-marathon equates
to around a 3:00 marathon so I had declined massively in three years. I had various excuses for my poor marathon
performances, such as jetlag and diet (Tokyo) or foot injury (New York) which
were all valid, but the truth of the matter was that athletic decline had
kicked in with a vengeance and I was slow to realise.
Then my eyesight
suddenly deteriorated in a big way (aged 45/46), I started to get RSI in my
right hand (aged 46) making writing difficult and even typing this much harder
than it used to be. So much for my long-term
desire to play the piano! And more
recently (aged 47) I have been referred to see a cardiologist following an ECG
as part of a routine health check at work.
Individually these are all relatively small things and generally easily ameliorated,
but collectively they mark the slow but inevitable decline in my physical
capabilities. Playing badminton with
my daughter Rosa last week it was evident quite how awful the cumulative effect of all
this ageing can be - I could barely see the shuttlecock!
More worryingly there
is the decline in cognitive ability. Fortunately,
brain power seems to be slower to fade and, a bit like endurance athletes
peaking later in life than sprinters, what we start to lose in mental sharpness
we make up for to some extent in experience – perhaps leveraging all those
hardwired neural connections as it becomes harder to make new ones quickly on
the fly. But I still notice the decline
at work and at home in a variety of ways: harder to learn new things
(particularly noticeable with languages); poorer short-term memory (finding
myself upstairs having forgotten what I came up to get); more difficulty in
grasping both complex arguments and tricky abstractions; and, perhaps related
to all the above, a generally decline in mental dexterity.
Finally, there is the
general fatigue. Long gone are the days
when I could go out a couple late nights in the week as well as have a boozy
Friday and/or Saturday. Now it’s more
like bed at 10:30 in the week and a weekend spent recovering from the
exhaustion accumulated by Friday. My
50-something friends tell me it only gets worse.
The irony is that I am
perhaps happier and more emotionally satisfied than I have ever been. I have a job that (notwithstanding the
general exhaustion) I enjoy; I earn a higher salary than ever before that pays
for a lovely house, nice holidays and most of the material stuff I
ever dreamt of as a child; I have a wonderful wife, Clara, and a great relationship
with my daughter; and I have a plan for the end game.
The way I see it, if I can afford to retire at 55, I
have ten productive years from 55 to 65 to pursue projects, travel the world
and spend time looking after family, ten so-so years between 65 and 75, and then
it’s time to relax, regardless of whether I live to 76 or 106. I won’t
be rich financially if I retire at 55 (and my family won’t be set to inherit
much) but I see it as the route to the richest possible end of life in every
other sense, given that mid-life crept up on me so stealthily…
Addendum – Thursday 12 January 2017
When I went to work
this morning, I didn’t think I’d end the day looking at images of an MRI scan
of my brain having been diagnosed with probable Parkinson’s disease. My visit to the neurologist does explain a
lot of things I listed above and put down to simple ageing plus a few others
like my difficulty sleeping in recent years.
How weird that I noticed all the symptoms but didn't put two and two together. Just natural ageing, or so I thought. And to think that my mother was recently diagnosed with Parkinson's...
So, although I need to have a few more tests, I suspect the diagnosis is right, and of course of the rest of my life could be impacted significantly. Indeed, those five words from Dr T, “I think you have Parkinson’s,” will live with me forever.
But I feel surprisingly upbeat, almost as if I had subconsciously planned for such an event. I think my new disease is just another problem to be worked through and life over the next few years is going to be just fine…
Addendum – Sunday 29 January 2017
As I write this on Sunday evening (albeit finding my touch typing ever more challenging), I still feel surprisingly positive. The last couple of weeks have been up and down as the enormity of reduced life expectancy, and the various practical challenges to come, sinks in. I am 47 years old and, statistically, I have about 20 years to live. The later years will be difficult for me and for my family.
There is also some frustration that, having had the tests (MRI, blood tests and a DaTscan), I have to wait until Thursday to see Dr T for an official diagnosis and a discussion of next steps. Having self-examined my symptoms and test results, there is little doubt. The only question is what type of Parkinson’s I have (almost certainly involving genetic factors) and whether there are any additional complications.
But as I set out my “to do” list this evening of things to get done before it’s too late, I realise the list is really very short. I have already had a rich and rewarding life and, whilst there are still a few research projects to do, I feel pretty pleased with my lot so far. In fact, if I die tomorrow, there will be essentially no regrets. Let’s hope my mindset continues like this. I read that depression is a common issue with Parkinson’s, presumably all related to the lack of dopamine, but that’s one symptom I don’t yet have…
