The road to diagnosis

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.