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Jon & Kay’s Journey With Parkinson’s

Jon was diagnosed with Parkinson’s disease in October 2017, but was living with symptoms for at least two years before then.

He recounts his experiences with a Software Engineer’s scientific dispassion; his descriptions interspersed with amusing anecdotes and delivered with a quiet self-possession. He and his wife Kay have a wonderful energy between them, her lyrical Welsh accent peppering his tales with her own humorous comments and light-hearted observations.

Yet, beneath their wry humour and scientific interest in the symptoms Jon is displaying, lies a resigned (well-hidden) sadness. There is no cure for Parkinson’s Disease and Jon knows his symptoms will not go away. He describes the things he has had to sacrifice – including live football matches and using a computer mouse – with calm detachment, frequently studying the trembling right hand laid on the table in front of him.

As he tells his story, his hand movements are a vivid illustration of the point he is making – violently shaking as he describes more poignant experiences; quieting down at less emotional points.

Suspicious Symptoms

His journey to a diagnosis was a tough one, going without medication for years after he first experienced symptoms. Only after a visit to a private neurologist did he eventually get DAT scans to confirm his condition. Despite the series of missed opportunities, at no point does he speak ill of any of the professionals he saw.

Jon and Kay are a grounded, kind and composed couple – with only Kay’s occasional glances into the distance suggesting any regret at the slow road to treatment and how tough it must have been for them. Jon’s symptoms started with a burst of something that “felt like 240v of electricity” down his right side whilst yawning. After the third time this happened – and having noticed a slight tremor in his left leg – he visited a GP for another ailment and mentioned his symptoms. The GP expressed no concern. A second visit with back pain followed and, despite now having a slight hand tremor alongside worsening leg trembling, there was no follow-up.

His back pain led to treatment from a physiotherapist and again he described his tremors. The physiotherapist sympathised and shared personal experiences of ‘knee-trembling’ due to ‘strain’ or fatigue, reassuring Jon that it was normal. Not satisfied, Jon returned to the GP with his wife Kay, who – he explained with a wry smile – wouldn’t hold back. Kay recounted how she insisted on a referral and they were finally sent to a neurologist.

Not a betting man

At this point in his story, we see a glimpse of the formidable character that lies beneath Jon’s relaxed and calm composure. When the neurologist tries to give Jon the ‘if I was a betting man’ line, Jon had none of it. He explains how, as a Software Engineer, he wants binary answers to simple questions. The frustration is evident in his voice, so when he is told to return six months later for a better answer, it is no surprise to learn that they decided to pay privately to see a neurologist at University College London.

The neurologist at this point was fairly certain of a diagnosis of Parkinson’s Disease and Jon was finally offered the scans he needs for confirmation. The prohibitive cost of the scans was a challenge, so the neurologist wrote to Jon’s GP, requesting the scans and a referral back to him via the NHS. Jon describes undergoing a DAT scan as ‘interesting’. Despite Jon’s nonchalance, the glance that passes between him and Kay implies a challenging experience…

Lab Rat

Following DAT and MRI scans, Jon receives a positive diagnosis: he has developed Parkinson’s Disease, for which there is no cure.

This was sadly not the end of Jon’s turbulent road. With a diagnosis confirmed, they set about dealing with the news with their characteristic aplomb. Not wanting to miss an opportunity, Jon signed up for clinical trials. He was – as he puts it – “a fresh, lab-clean rat!”: he was newly diagnosed and had taken no medication.

Heart-breakingly, just two days before the trial was due to start, it was cancelled. It is Kay’s turn in the interview to give us a glimpse beneath the self-assured poise – this was clearly a tough time for them both. The cancelled trial meant the referral process had to start all over again and Jon waited another year for medication. Their faces both betray the strain this must have placed on them – Jon quietly contemplating his trembling hand for a few moments in reflection.

Of course, once the medication was in place and Jon knew what he was dealing with, their scientific analysis of swirling wine vortexes and ‘bouncing until take-off’ takes precedence over any self-pity. They describe in detail amusing incidents: Jon can clear the garden fence with a Champagne cork and Kay describes how their teamwork on cocktails is ‘really quite good’! Jon explains how he merely has to hold a bottle and his vibrating hand pops off the top, while Kay struggles with osteoarthritis so is the ‘pourer’ in the duo!

Aren’t you worried?

It is clear that they have come to terms with the diagnosis – both between them and in their minds – with an amused and practical tolerance; their interest in the mechanics of his symptoms (‘it is deteriorating’, he quietly admits at one point’) as well as their ability to find humour in the darkest of statements is incredibly inspiring. Even as Jon states wistfully that he probably won’t be going to any more live football games, Kay interjects with a chuckle to suggest that the stress, excitement and cold would likely send him bouncing everyone into take-off. In fact, one of Jon’s favourite lines of Kay’s is delivered when they greet friends and acquaintances… She jokingly suggests that they might not want to shake hands with Jon as they’ll be there for 20 minutes!

Jon’s attitude towards his condition can be summed up with this quote he shares with us:

‘One thing I get asked from time to time when discussing Parkinson’s is “Aren’t you worried?”

And I think of the movie Bridge of Spies where James Donovan asks the same question of Rudolf Abel (the Russian spy).

Abel replies, “Would that help?”

Thank you Jon and Kay for sharing your story.

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