In search of inspiration

Sunday 26 April 2020

As the Coronavirus lockdown continued into its second month, I found myself looking for some inspiration. Something happy, something to make me feel good about the world.

I decided to watch some highlights of the London 2012 Olympic Games, notably the Opening Ceremony.

I had been in the stadium that evening eight years ago, to witness the patriotic extravaganza that marks the start of the greatest sports show on the planet, crammed into the following frenzied fortnight. It had cost me a lot for a single ticket, but the memories of the once-in-a-lifetime event vindicated my decision to go.

When you’re in the stadium, you notice different things than on TV. For example, during the spectacular re-enactment of the industrial revolution, I missed a lot of what was going on in the centre, but the thing that sticks in the memory was the incredible drumming. The rhythm was all consuming, pulsating through me from head to toe.

The most boring bit of the ceremony is, of course, the seemingly endless parade of nations. Except that when you’re there in person, it has a real buzz about it. Every country, no matter how small, gets cheered and has a set of fans somewhere in the stadium. It’s actually quite incredible to witness the diversity of the human race coming together like this, cramming in for the finale.

Something I didn’t pay much attention to on the night was the appearance of possibly the most famous person with Parkinson’s of modern times, Muhammed Ali. In the London 2012 games he had a small role in the flag ceremony but, in Atlanta in 1996 he had been given the most important role of all: the world held its breath as, with shaking hands, he lit the Olympic flame with the torch that had travelled thousands of miles around the world.

Ali got his Parkinson’s from brain injuries resulting from his life in boxing ring, but the effects are the same as for people like myself with unknown causes. He died in 2016 at the age of 74, shortly before the start of the next Olympics in Rio de Janeiro.

I had mixed feelings when I watched the brief footage of him. On the one hand it’s sad to see such an iconic sports person reduced to a trembling cripple. On the other hand, I then watched some YouTube clips of him lighting the flame in Atlanta. Now that was the sort of thing I was looking for. The defiance he showed as he held the torch aloft in front of an audience of billions was – truly – inspirational.



Shall we FaceTime?

Wednesday 1 April 2020

“Shall we FaceTime?” I asked.

Rachel sounded surprised at my suggestion. I continued:

“It will be much better if we can see each other. You might even be able to do some clinical tests.”

After some faffing we managed to connect and we both spontaneously did that most human of things: we gave each other big smiles.

“That’s much better, isn’t it?” I concluded.

I had received a letter informing me that my six-monthly neurology appointment would be by phone because of the coronavirus. It had actually been a year since I had seen Rachel as, on my last visit, I had seen The Professor. Rachel is one of his research team, and seemingly the person looking at my family case.

The conversation was friendly enough but routine. I told her that I felt I could stay on the same medication, with the levodopa tablets giving me the flexibility I need with my Parkinson’s: although I am prescribed three tablets a day, I sometimes take just one or two and, at other times take four or even five depending on the ebb and flow of the condition. Rachel said this was fine, and that I should be guided by how I feel.

There was not much news about my genetic analysis. She said they ideally need DNA samples from more family members to help isolate the faulty gene(s). My mother (who has Parkinson’s) and her brother (who doesn’t have Parkinson’s) have both given samples, but I now need to encourage my sister (two years younger, no signs yet of Parkinson’s) to donate her DNA to medical science as well.

After a convivial half hour, we concluded with some basic clinical tests, primarily some simple finger tapping, which were actually quite effective over the phone camera. I will see her again in September. Perhaps in person, but I suspect by FaceTime again.

It’s surprising how we have all adjusted so quickly to the new normal of living in isolation and communicating via video links.  Like millions of other people, I now have a mini office set up at home and spend a good chunk of my working day talking to other people on a screen.

I’m really very fortunate: I still have a good job, I get to sit in the comfort of my own home all day, eat and drink well, exercise, and I am able take a rest whenever I need it. Clara and I are “staying safe”.

I find myself thinking about the million people across the world who now have a confirmed diagnosis of covid-19. They are also doing most of their communication via a screen and video camera.

Sadly, some of them won’t ever get to see their loved ones in the flesh again.

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