Five Years With Parkinson's

And still working...

My appointment with Parkinson’s

This week I reached an important stage in my Parkinson’s journey, the fifth anniversary of my diagnosis.  But it’s only thanks to a message from a listener to the Movers and Shakers podcast that I became aware of this milestone.

Unable to sleep one night this week - not an unusual occurrence - I got out of bed and sat in the dark in another room, scrolling through my phone. There I found an email in the Movers and Shakers inbox from someone thanking us for the advice, information and “more importantly” humour and humanity we provided. But, like many people we have heard from, this correspondent also wanted to share a terrible story about how the news of his diagnosis was broken to him.

Last August Mike, aged just 47, found himself in front of a neurologist who, after a short examination, said this:

"Well you probably already know it, but I can confirm you have Parkinson's. You have, if you are lucky, another five years before you have to give up working."

Mike was devastated and left the hospital in tears to catch a train back to his office. But he was lucky enough to have private medical insurance, and so decided to get a second opinion.

This time he found a much more cheerful neurologist who told him about patients who’d had Parkinson’s for decades and still functioned well. This set me thinking about my own progress since diagnosis and whether I fitted the pattern suggested by Mike’s first or second neurologist.

Delving back through my email I found that it was on January 2nd 2019 that I was told at St Mary’s Hospital in Paddington that I had Parkinson’s or rather “signs of Parkinsonism.” While the way my diagnosis was imparted felt a little cold and impersonal, my experience was nothing like as bad as Mike’s and I certainly was not given some gloomy forecast about being incapable of work, despite being a good deal older than him.

At CES in Las Vegas in 2019, days after diagnosis

And at that stage, I did not see why there should be much impact on my job for quite a while. Indeed, a few days after my hospital appointment I was on a plane to the United States for quite a gruelling ten day trip covering the giant CES gadgetfest in Las Vegas and then heading to Arizona to make a radio documentary about driverless cars and how they were unlikely to be on our roads soon.

On my return I wrote an email to my BBC colleagues telling them about my Parkinson’s and insisting that, while I would be less inclined to carry the camera crew’s tripod, I would still stand my round in the pub after work. And over the next three years, while I noticed that I was walking more slowly and sleeping less well, I coped fine at work and was proud of how I, along with the rest of the BBC tech team adapted to working from home during the pandemic, broadcasting from our kitchens and attics.

When I did leave the BBC in late 2021 it was not for health reasons but because my job was being moved to Glasgow, although my Parkinson’s did perhaps make me eager to try a few other things while I was capable. Two years on, I look back and realise I have been almost too busy, acting as a media consultant for technology firms, writing this newsletter, my memoir Ruskin Park and knee deep in another book, and of course helping to create a hit podcast about Parkinson’s as well as presenting another for Cambridge University.

Now, undoubtedly my Parkinson’s symptoms have got a bit worse over the last year, particularly following the bad fall I had in October. My typing, never very speedy, has now slowed to a crawl, and I find I have to allow myself a bit more time to get places as my gait is more uncertain and my energy levels are lower. But no, as the CEO and HR Director of RCJ Media I am not yet ready to lay off my one employee because he is five years into Parkinson’s.

At work at home, 2024

Of course, I’m lucky - many “Parkies” with more physically demanding jobs are likely to face pressure from their employers to stop work. Others will be all too keen to call it a day and get the most out of life while they can - like Judge Nicholas Mostyn who has retired from the bench to spend more time as an all-action hero, skiing, riding, golfing ….and podcasting to his heart’s content.

The important thing for we Parkies - and even more for our neurologists - is not to start by assuming the worst and setting boundaries on the shape of your future. Our correspondent Mike appears to have bounced back from the gloom into which his first neorologist plunged him, exploring new treatments and joining a group of Young Onset “Parkies”.

As for me, I am looking forward to at least another five years of stimulating work, including a lot more podcasting.