Going grey

Saturday 29 June 2019

“Oh, I would say about 52 or 53.”

“Yes, definitely early fifties.”

My two work colleagues, tucking into their sushi and beer seemed pretty confident with their estimates.

“I’m still in my forties. Is it the grey hair?” I grinned as I gave my response.

I was quite surprised. This was, as far as I can recall, the first time in my life somebody had over-estimated my age. Always baby-faced, when I was in my youth it was harder to get a drink in a pub or restaurant, and I had gotten used to flattering under-estimates of my age. Over the years, friends going grey and/or bald envied my thick head of dark hair.

Later that evening I found myself studying the robotic face starting back at me in the bathroom mirror.

As well as sporting thick streaks of silver, my features are more gaunt: sunken, bag-laden eyes, pale skin that no longer sees much sunlight and a thinning visage. My body has atrophied a little as well. Previously muscular legs have lost much of their tone, arms are weak, hands and feet look more withered. A couple of people have commented recently that I look thinner. In three or four years, the Parkinson’s, and particularly the insufficient sleep, has probably aged me by a decade.

I think the remedy is simple: more sleep and more exercise. Sounds easy, but easier said than done when you have young onset, expending all of your energy running on life’s treadmill rather than running in the park….

Still, I can’t complain. At least I don’t look 60. Yet. And whilst I’m no George Clooney, being grey does have a certain cachet …

What would James Parkinson have made of it all?

Friday 7 June 2019

I am sitting on a bullet train speeding from Kyoto to Tokyo at 300 km/h, pondering all that I have learnt and experienced over the past 5 days (which incidentally, feel more like 5 weeks - see previous post here) at the World Parkinson Congress.

In April 1817, a progressive and talented, but nevertheless relatively unknown doctor from London's East End called James Parkinson published a study on a condition he called a "shaking palsy." In his essay he speculated about possible causes and treatments. I imagine he expected that a cure, or at least a way to stop it getting worse, would be found in his lifetime or not long after. The condition would, of course, later become known as Parkinson's Disease.

Wind the clock forward 200 years and, remarkably, there is still no clear understanding of what causes it, what different variations there are, how to cure it, or even how to slow its progression. The best that medical science can offer is drugs that give temporary relief of the symptoms and some evidence that exercise helps.

Many people complain that not enough funding goes into Parkinson's compared to say cancer or even Alzheimer's. It's true that scientific breakthroughs are frequently correlated with the level of investment and it's always desirable to spend more. And it's a shame that big pharmaceutical companies like Pfizer have recently pulled their funding.

Yet I am sure, had James Parkinson seen what I saw this week, he would have been truly astonished. Perhaps 1,500 medical professionals and researchers from every corner of the planet sharing information and ideas about neurogenetics, stem cell treatment, pharmacology, neuropathology, transcranial magnetic stimulation, microbiome studies, basal ganglia oscillations, proteinopathy, autophagy, and so the list goes on. Nearly all of these topics would have been unheard of in Parkinson's day.

There were a similar number of people with Parkinson's of all types and in all stages of progression: sharing advice, learning new therapies, making friends, coming to terms with their future or trying their best to make a difference.

I went to a variety of plenaries, workshops and round tables, some of them way over my head scientifically and some of them more focussed on the human side. I met people from the US, Canada, Australia, New Zealand, Italy, Peru and Japan and listened to presenters from many other countries: Malaysia, Germany, France, Denmark, Sweden, The Netherlands etc.

As I reflect on the week I am truly inspired by this awesome concentration of minds, hearts and souls for a single collective cause. The intellectual energy is phenomenal. The emotional force is similarly impressive. 

It turns out that Parkinson's, like other neurodegenerative diseases, is a tough nut to crack. The human brain is perhaps the most complex object we have yet to encounter, and deep inside it, very sophisticated biochemical processes are somehow going wrong, causing cells to die. There is still so much we don't understand and despite everything I listened to this week, it may be a few years yet before there is a breakthrough.

But it won't be for want of effort. 

Five days ago, I wrote that I hoped to be inspired. I certainly have been, beyond even my most optimistic expectations.

World Parkinson Congress

Thursday 6 June 2019

I think this week has already changed my life.

Wow. What a great event and what a roller coaster week.  And to think I'm only half way through the conference.

So much to talk about, but I'll focus on three themes.

The bad

Day 1 was an emotional experience and a mixture of disappointment and inspiration.

Firstly there's the shock of seeing many people in the advanced stages of Parkinson's, especially a lot of Japanese (given they don't have to travel as far).  Wheelchairs. Walking sticks. People wandering around like zombies. Severe dyskinesia (people writhing constantly like flags in the wind with a storm brewing). Cripples everywhere. The realisation that this could be my future.

Then there were some terrible presentations. I attended some sessions on patient advocacy. I won't bore you with the details, but some of the presenters were awful, the sessions tedious and rambling and self-promotional (presenters droning on about their credentials which turned out not to be good indicators of their abilities). I'm being pretty harsh of course, given that many of these people have Parkinson's, but then again I did pay a chunky fee to attend the event. And of course, there are the idiots in the audience that rather than asking questions in the Q&A, like to give a monologue about how great they are. As I've said before, Parkinson's doesn't discriminate.

The good

But then day 1 concluded with an opening ceremony that was truly inspirational.

As well as some great music and dance performances by Parkies, various awards and some fantastic videos, there were two very memorable speeches.

There was Lyndsey Isaacs, widow of late Tom Isaacs who was something of a legend in the PD community due to his relentless drive to find a cure, via his charity, The Cure Parkinson's Trust. Her tribute to his character of positivity and good humour was very moving.

The second speech that resonated with me was a woman who is a tetraplegic due to a horrific road accident when she was in her early twenties. She went on to have two children and lead a full, adventurous life. When diagnosed with Parkinson's she had the same matter-of-fact attitude. "Write a list of things you can still do rather than the things you can't do. And get on with them." Enough said.

The future

I had an ulterior motive coming to Kyoto - to figure out what I do next in life.

I do a job that I enjoy, but it's hard to put in the hours and the travel, and I long for early retirement. And, if I'm honest, it's of limited social value.

So my focus is on getting to retirement as quickly as possible, hopefully in the next two or three years. But what do next? My brain still seems to work (I went to a session on cognitive issues in Parkinson's and, fortunately, appear to be at low risk of developing dementia). And I should have a good number of "active" years still to come.

I don't really see myself as a Parkinson's advocate. There are others much better than me at PR. But I do have thirty of so years of technology, data science and management experience and I'd like to put this to better use. So I got talking to a number of people about how I can contribute.

At the end of day 2, I had a good conversation with the professor leading the Cambridge University neurodegeneration research group. And he led me to The Cure Parkinson's Trust. I met a number of people from the charity and talked to several of them about the possibilities and practicalities of using technology to further the identification of candidate treatments. They seemed excited about having a potential volunteer on their staff who brings specialist machine learning and analytics knowledge. 

I won't commit just yet, but I'm pretty sure this is my future: working part-time for a charity, not fundraising or raising awareness, but contributing in a small way to the science behind finding a cure.

This morning, at the start of day 3, I awoke at 6am to a beautiful day. From Kyoto central station, I headed on the local train packed with children on their way to school, and got off two stops later at Inari, a small town next to the enigmatic fox spirit shrine complex.

I'm not a spiritual person, but nevertheless found myself making a donation and a prayer at a small, tranquil shrine dappled with early morning sunlight streaming through the surrounding bamboo forest.

I prayed that we may all keep striving for a cure to help me, the thousand or so other kindred spirits with me at the conference, and the ten million people with Parkinson's around the world who don't have the privilege of being in Kyoto this week.

Hiroshima

Monday 3 June 2019

As Andrew Marr says in his History of the World, Hiroshima is a big word.

Today I am taking a day trip to Hiroshima from Kyoto, making use of the spare time I have ahead of the World Parkinson’s Congress which starts tomorrow.

Hiroshima is a modern, vibrant city with a hip restaurant and nightlife scene. But I am not here for fusion cuisine or trendy bars. I am here for one thing only: to visit the Peace Memorial Park and Museum that mark the world-changing event that took place on 6 August 1945.

The world’s first atomic bomb to be detonated in anger killed an estimated 70,000 inhabitants of the city (a third of its population) instantly and a similar number in the days, weeks, months and years that followed through radiation poisoning. Many of the latter suffered slow, painful, horrendous deaths.

I have been to the Peace Memorial Museum before, about ten years ago, but it has been completely revamped since my last visit. The museum now focusses more on the human element whereas previously it was somewhat more technical. In both cases there are a number of artefacts preserved from that day, the most iconic of which is a watch with its hands fused to the exact time the bomb exploded.

Among the many moving stories is that of Sadako Sasaki, an 11 year-old girl with Leukaemia, who believed she would be cured if she folded a thousand paper cranes, a Japanese symbol of longevity. She died before finishing the task but her classmates took up the challenge and her story became an inspiration across the nation. Paper cranes are still folded in her honour today.

People sometimes forget that a second bomb was dropped three days later, on the industrial city of Nagasaki, thereby bringing an early end to the Second World War in the Pacific.

The crew of the bomber Enola Gay that carried the first weapon had no doubt they were doing the right thing. It is said that the abrupt termination of the war prevented a likely invasion of Japan perhaps saving as many as a million casualties. Moreover, the Americans had no sympathy for the Japanese, with their Kamikaze pilots, surprise attack at Pearl Harbour and legendary cruelty to their prisoners of war.

Today, with the benefit of hindsight, we view things differently. It seems inconceivable that such an act of mass murder of civilians could be justified in a contemporary context. My personal view of that period of history is that whilst the first bomb was probably justified, the dropping of the second bomb so soon was unnecessarily brutal to the civilian population. 

Needless to say, the Japanese are a very different people today. The museum is packed with children in school uniform earnestly scribbling notes onto their clipboards. They offer prayers at the memorial outside the museum. An inscription next to the memorial reads in several languages: “Let all the souls here rest in peace for we shall not repeat this evil.”  As a result of Hiroshima, several generations of Japanese have now been brought up to be pacifists rather than aggressors.

A visit to the museum can be emotionally draining. The last time I was here (with Clara), a middle-aged woman approached us by the A-bomb dome, a sturdy concrete building that was close to the centre of the explosion but managed to remain standing, though badly damaged. In broken English she told us about the events of 6 August 1945, referring to a folder of photographs and diagrams. We were instinctively cautious, assuming she was a bad tour guide touting for a tip. At the end of her monologue, she explained that the reason she speaks to tourists was in memory of her father, who was a child when the bomb hit. 

Her aim, quite simply, was to help the world never to forget. Such encounters etch themselves deep in one’s memories. I see a similar woman today talking to a group of schoolchildren – perhaps it is the same person continuing to spread her message one individual at a time.

I emerge in contemplative mood from the museum and park, my mind filled with thoughts of the shocking use of science and technology as an instrument of man’s destruction of his own kind.

Tomorrow, as I join several thousand others at the Parkinson’s congress, I expect to hear many examples of how science and technology are being used for the precise opposite: to bring an end to the suffering of millions.

Although we still have many conflicts raging across the globe today, I believe we live in a far better world than two generations ago. A world where individuals matter. A world yes, with some pockets of evil, but where the vast majority people want to do positive things. A world where science and technology are overwhelmingly tools for good.

Today I gawp at mankind at its most destructive. Tomorrow I hope to be inspired by human endeavour at its most positive.