The C word

Saturday 25 February 2023

The C word has only 4 letters but it’s a big word. A word that used to be used in open conversation but is now taboo. These days, if it is said at all, it is said in hushed tones with an air of embarrassment. It’s no longer acceptable to throw it into serious talk, let alone casual chatter. Dare I actually spell it out here?

Finding a ‘cure’ was once everyone’s objective. And not just a cure for Parkinson’s. As neuroscience evolved there was confident talk of curing Alzheimer’s and Motor Neurone Disease, and various other neurodegenerative conditions.

But now we speak of ‘therapies’ and, if we are feeling really bold, ‘disease modifying therapies’ which stop or slow down progression. The  consensus amongst other Parkies that I sit on various advisory committees with is along the lines of , “it would be nice if we could make the disease get worse a bit more slowly…”

The reality is that Parkinson’s (and Alzheimer’s and MND and others) have turned out to be way more complicated that anyone anticipated and, after decades of research, we still don’t actually understand what’s going on. My personal view is that we need to understand the underlying biochemical mechanisms if we are to be successful in turning the tide on these conditions.

I also believe we should never give up. Given enough effort, we will figure this out and prevail. We are too smart as a species not to. Sure, a ‘disease modifying therapy’, or two, would be a big step in the right direction, but the ultimate objective should remain the same: like smallpox, wipe it off the face of the planet. 

It may take a long time. It may not happen in my lifetime. But I firmly believe we should keep striving for the day when humanity can proudly announce: 

“We’ve found a cure for Parkinson’s. Now, what’s next?”

Making a difference

Saturday 11 February 2023

Two years ago I set in motion a radical career change. I applied to do a Masters degree in neuroscience, handed in my notice at the company I’d worked at for nearly a decade, and set about venturing into the world of medical research, hoping in some small way to make a difference.

To some extent my hand was forced as I simply couldn’t manage the workload of a fast-paced corporate job any longer. But I decided that rather than slide quietly into early retirement, I would try to put my remaining years - and brain cells - to some use. So, as I approach six months since completing my MSc, have I actually achieved anything?

The answer is mixed.

Firstly I’m super proud of the YouTube channel I’ve been helping develop. Working with a charity called LivedHealth, I’ve fronted around 30 videos, talking to a variety of people about their experiences with Parkinson’s and a number of experts about different medical aspects and areas of research. Initially I was sceptical about whether we would add anything useful to the content already available, but I think the short and succinct, professionally edited clips give a refreshing set of perspectives. At the time of writing, we have nearly 1,000 subscribers and almost 250,000 views so clearly others agree. I’ve had PWPs from places like Canada and Switzerland contact me for advice based on what they’ve seen on the channel.

The thing I’ve spent most of my time doing is working with various research initiatives and charities mostly as an advisor giving a patient perspective on the disease, but I’ve also done some more substantive IT/data science work. I’m fortunate to get paid for some of this though much of it I’m happy to do on a voluntary basis.

It’s been interesting moving into the non-profit sector. As expected, it has its fair share of bureaucracy and inefficiency, but there are also a lot of highly motivated people working hard and striving to make a difference. Many of these people have a personal connection to Parkinson’s; often they have a close relative with the condition. 

I’ve been particularly impressed by the Michael J. Fox Foundation. Everyone I’ve come across there is affable, highly professional and motivated, but also smart and objective. The ethos is one of spending the hard-earned donations (now around a remarkable $1.5 billion) judiciously, in the research that is most likely to result in genuine disease-modifying therapies. Their tag line is “Here. Until Parkinson’s isn’t“ which to me sums it up nicely. They run a pretty slick operation. I’m very proud to have had the privilege of working with them.

So far, all well and good, but the original intention was to actually do proper research, to apply my data science skills in the quest to better understand what's really going on Parkinson's, to be at the coalface. I made a decent enough start getting a distinction for my MSc project on using machine learning to identify subtypes of Parkinson's. But I failed to get any ongoing support for my research beyond the degree and I've made little further progress on it. To be honest I flip-flop over whether I should pursue research at all: I'm not formally part of a research group and only loosely affiliated to King's College London and the University of Plymouth, so I have little academic credibility. And, given my age and my condition, the younger academics are all sharper than me anyway. In short I wonder whether trying to do research is really the best way to spend my limited productive time and energy.

So, I'm making a difference, but it's only a small difference, and not quite the difference I anticipated. Nevertheless, it's better than the alternative of playing online Scrabble and watching Netflix all day...

‘Tis the season to be jolly

Sunday 18 December 2022

Last night I saw a fabulous performance of Handel’s Messiah in the beautiful 16^th century Scuola Grande dei Carmini, and this morning I woke up to blue sky and radiant sunshine in Venice. What’s not to like?

After a couple of weeks of cold, rain, fog and empty backstreets, Venice has suddenly come alive in the run up to Christmas. A funfair has appeared near our apartment, the Christmas tree is sparkling in Piazza San Marco, magical decorations adorn the shopping streets, and the bars and restaurants are now buzzing with banter and laughter. Every morning I go for a short, gentle jog along the waterfront with sights such as the Basilica di Santa Maria della Salute, Palazzo Ducale (Doge’s Palace) and Campanile (bell tower) laid out majestically in front of me. I pinch myself that I am in this amazing place.

As a bonus, my daughter Rosa came out to visit for a couple of days last week. She is taking a year out before going to university to study theology and philosophy, and has a job in the local Paperchase shop to get some experience – and money – under her belt before doing some travelling in the spring. Needless to say, we had a fantastic time exploring Venice together, and enjoying some great Italian cuisine.

Clare comes out again next week to join me for Christmas and New Year before I return to normal life at the end of the first week of January. I had mixed feelings about trying to live in a foreign city on my own for a few weeks, but it’s turned out to be a great experience. Although I’ve all but given up trying to learn Italian, with my brain seemingly unable to retain the simplest vocabulary, I’ve managed to survive in a foreign country without any major challenges. Shopping can be a bit tricky as can doing simple things in the kitchen like opening bottles and jars. Food packaging in general is a bitch. But I take my time and find creative ways to do things. And I pump myself full of medication every day.

So for now, la vita è bella. Life is good. It won’t always be like this of course. But the positive news is that listening to great music and enjoying the warmth of the sun on my face are two things I will still be able to do even when I am in the advanced stages of Parkinson’s.