Saturday 14 October 2017
About a year ago I
went for a routine GP check-up. This would set in motion a chain of events that
would change the rest of my life and impact the lives of those closest to me.
However, like several
other people I have spoken to who have Parkinson’s, the story started about two
years earlier, back in the autumn of 2014 when I had just turned 45.
It was then that I
first noticed two things at about the same time: firstly, I was having some
slight difficulty with my right hand; and secondly, I started to develop vision problems.
I assumed the problems
typing and writing, and the associated discomfort, were Repetitive Strain
Injury (RSI) from decades of using a keyboard and mouse. I soldiered on for a while but gradually
things got worse so I went to see my GP.
She agreed that RSI was the most likely explanation, and suggested I get
an ergonomic mouse. This I duly did
(buying my own one as navigating approvals at work for a £20 piece of equipment
proved too complicated) and for a while things improved.
Gradually the symptoms returned and by this time I was also having trouble
fastening buttons in the morning and with similar tasks requiring fine motor
skills. I switched to using the mouse with my left hand and, again, for a
while, things seemed to improve. Then the symptoms worsened, this
time to the point where my writing was micrographic and largely illegible, even
to me.
It was a similar progression with my eyes. At first, I thought I had normal
degradation of eyesight consistent with my age. I went for a routine eye
test and started wearing both reading glasses and mild prescription distance
glasses.
But I struggled more
and more to see things across the other side of the room, either with or
without my glasses, making daily life progressively more difficult. I
went for several eye tests and eventually the diplopia
(double vision) problem was identified along with a referral to an
ophthalmologist which would be followed by a visit to an orthoptist (a
specialist in things like squint and eye movement disorders).
I had battled for
fully two years with both of these problems which, on face value, seemed
unrelated. In the second half of 2016, I also started to experience other
issues like frequent constipation and sleep difficulties, again seemingly
unrelated.
So when I had a
general GP check-up through my employer’s private medical insurance it was a
great opportunity to take some time to explain all my issues.
It felt somewhat
lonely in the surgery; just me and the softly spoken General Practitioner in a
plain, almost austere, consultation room.
There was little background noise as she patiently listened to all my concerns
and did her routine tests.
I had no inkling at
the time but, now that I reflect upon that cold and misty autumn morning, I
think she had a strong suspicion what the problem was and duly gave me
referrals to a neurologist and cardiologist in addition to a referral I already
had for my eyes. She probably realised how much my life was about to
change but I suppose that, rather than speculate, she preferred to leave me in
the hands of the specialists.
I was working abroad for most of 2016 so it would be a further three months
before I would get around to following up on all the referrals, in January
2017. From barely having seen the inside of a doctor’s surgery, let alone
a hospital, in my life up to that point, at the start of this year I would
rapidly become all too familiar with a new, sometimes wondrous, world of clinical medicine.
My path to Parkinson’s
diagnosis is not uncommon, though some people have taken even longer to get to
the correct conclusion. This is partly because many GPs don’t have enough
experience in young onset Parkinson’s - hardly surprising given its frequency
and nebulous nature.
When I think back to a
year ago, I realise what a relief it is to have finally been correctly
diagnosed. A diagnosis that immediately explained all sorts of disparate
ailments which I had collectively put down to middle age.
I still have
day-to-day struggles. In particular, I am still working through further tests
following my somewhat scary cardiac experience (see previous posts Heart
failure, Heart
failure part 2 and Living
and dying). Thankfully the symptoms are settling down now after reducing the
daily dose of my dopamine agonist.
But as I write this
text, it dawns on me that, not only am I touch typing fluently, I am doing so
without wearing any glasses at all.
I travelled the road
to diagnosis and now, having on the whole received good medical attention,
including some very successful eye surgery, I am in a much better place than
where I started a year ago, on that grey and gloomy October morning.
However, despite all
that has happened in the past 12 months, despite all the ups and all the downs,
I realise that the real journey is only just beginning.
