Am I a fraud?

Saturday 7 December 2019

When I meet old friends that I haven’t seen for a few years and tell them I have Parkinson’s, they are usually surprised that I seem perfectly normal. For the most part, I look normal (if a little greyer), sound normal and move normally. I still work, drive, travel and do all the things most people do. I write this blog about all my ailments and travails, and yet there appears to be nothing wrong with me.

Often I feel like a bit of a fraud.

Overall, I’m not doing too badly. It’s about five years since symptoms were first obvious and I’m still in what is sometimes called the “honeymoon period” of Parkinson’s: in the early stages where the symptoms are relatively mild, and the drugs that help compensate for the lack of dopamine in my brain, are largely effective.

On the other hand, most days are a struggle. Occasional shakes, mysterious sharp pains my legs, croaky voice, painful shoulder. Terrible handwriting that I can’t read myself. Struggling to button my shirt, open bottles, enter my PIN number.

And then there’s the biggest problem of all: being tired all the time. Sometimes just a regular sleepy, yawning tired. But increasingly, feeling desperately tired; a tiredness that consumes the whole body and mind: mustering all my will power to stay awake in a work meeting; sneaking off to a study booth for a two-minute power nap that will give some temporary respite. On the commute home I am so fatigued that, even standing up on a crowded underground train, I can close my eyes and slip into dreamland for a few seconds.

So I’m not a fraud. And I’m not alone.

This week I went on a training course about managing your career when you have health challenges. There were some participants with obvious physical disabilities, like a woman with Cerebral Palsy (who, incidentally, is one of the most upbeat people I’ve ever met) or the instructor who has lived with Rheumatoid Arthritis for 25 years since being diagnosed at age 24. However, most of us had hidden conditions, like a young man recently diagnosed with Multiple Sclerosis. Outwardly calm and confident, he was nevertheless like me two or three years ago, trying to make sense of it all and what the future holds for him and his family.

Something Parkinson’s has taught me is not to judge a book by its cover. People live with all sorts of invisible challenges. Some choose to tell the world. But most just quietly get on with it.

A blog for everyone

Saturday 23 November 2019

Do an online search for Parkinson’s blogs and you will find hundreds. There are also several sites listing blogs. It took a while but this blog is now featured on sites like Feedspot’s top 60 Parkinson’s blogs, Parkinson.FIT and Parkinson’s Journey.

Who are the people behind all these blogs?

I’ve managed to meet a few of them and I can report that, like me, they are ordinary folk inspired to write by extraordinary circumstances.

But then again, they are all different.

For example there is Twitchy Woman, real name Sharon Krischer, from Beverly Hills, California, whom I met at the World Parkinson Congress in Kyoto. She writes about her personal experiences with the disease but also provides a huge amount of advice for others.

In contrast there is Jelly Woman, who is British but, like me, chooses to remain anonymous. She writes beautifully though not a lot about Parkinson’s. Mostly she just talks about her day to day. “Wobbling through life with Parkinson’s” is her tagline.

Something of a legend in my local area is Brian Lowe who writes a blog for the South London Younger Parkinson’s Network. Brian is full of positivity and pens a lot of motivational pieces. It was Brian who encouraged me to go to Kyoto and I can’t thank him enough for doing so.

The blogger I met most recently is Simon Stott, an affable Kiwi based in London who maintains the excellent Science of Parkinson’s site. Simon doesn’t have Parkinson’s himself but is one of the lead researchers at the Cure Parkinson’sTrust. I had the privilege of meeting him at a drinks event for donors to the charity. Earlier in the year, I was proud to have raised almost £3,000 from family and friends towards their research programme.

These are just a few of the many Parkinson’s blogs out there. It seems that one positive side effect of Parkinson’s is this vast amount of creative and informative output.

Every cloud has a silver lining.

Lucky or unlucky?

Sunday 27 October 2019

Am I lucky or unlucky?

On face value I’m pretty unlucky, right?

In my mid-forties, when I should have been in the prime of my career and my contribution to society, my life was turned upside down by the onset of an incurable degenerative disease of the brain. I am a 1 in 5,000 victim of young onset Parkinson’s.

But I considered the question in a broader context. Am I lucky or unlucky in life?

In the course of a typical lifetime we experience many ups and downs. Perhaps these offset each other.  Average out. Net to zero. Or perhaps some people really are very unlucky whilst others lead a charmed life? And to what extent do we make our own luck? Over the course of my life so far, am I lucky or unlucky?

Ever the analyst, I considered the evidence.

First the bad stuff:

1. I have Parkinson’s

2. I have been divorced. I’ll spare the details but it’s safe to say I didn’t do much wrong and I was well and truly shafted on a number of levels. 

3. As a result of (2). I only have one child, a daughter, that I currently see about once a month. I always wanted a conventional family but it didn’t work out that way.

4. There are many things I’m not good at. I’m awful at pretty much every ball sport. I have no musical or artistic ability whatsoever. I’m not socially very competent.

5. I had crazy Bohemian parents, who I think would agree were not the best role models. My Dad on the run for many years for a plethora of fraud, theft and other white-collar crimes. As a result, I had a fragmented early education, and was brought up with an attitude of screw what you can out of the system rather than work hard to earn living. 

Now I considered the good list, which is a little longer.

1. I was born in a first world country in an age of unparalleled prosperity and peace.

2. I was born relatively brainy in an age when cognitive ability is valued over brawn. As a result, despite my early educational challenges, I went to a prestigious university, I have a good career and earn a decent salary.
   


3. I’ve been happily married for nearly ten years.

4. I have a wonderful daughter.
   


5. I’ve seen much of the world, and had many wonderful experiences.
   


6. I was a good runner (before I had Parkinson’s).
   


7. I live in a lovely house surrounded by interesting artefacts.
    
8. I have some great friends.
   


9. I’ve never experienced significant physical violence, or sexual harassment, or mental abuse, or been in prison, or been persecuted for my beliefs or been denied a voice.
   


10. My parents loved me. My wife and daughter love me. The cat tolerates me.

So overall, it seems, I’m pretty lucky.

But, is it all actually down to luck?

Obviously some of these things, like being born in the twentieth century in London to slightly whacky parents, I have no control over. But most of these things, when you peel back the surface, can be influenced.

Take my first wife as an example. The uncomfortable truth is that the relationship had run its course and we should never have got married. And, moreover, at times I could be an arrogant dick. In short, whilst I didn’t deserve what happened, perhaps some of it was my fault.

As another example, Clara often says how lucky we are to live in a lovely house in a nice part of London and go on amazing holidays. And have cushy office jobs where we get to drink as much free coffee as our stomachs will bear.

I point out that these are all things we’ve earned. By studying hard when we were children, getting good grades to go to a good university, then landing good careers and sticking at them. For 30 years and counting. Working hard to pay the mortgage and to send my daughter to a good school.

This leads me to a Forrest Gump style metaphor.

Life is like game of Scrabble.

In Scrabble, you start off by drawing seven letters from a bag of a hundred. In my analogy, this is what you’re born with: your genetics, your parents, your environment. You might get a bingo (50 point bonus) on your first move. This is equivalent to being born intelligent, good looking, healthy, affluent and with a stable, loving family. Alternatively, if you’re really unlucky, you might get all consonants and not be able to score any points at all, though this is rare. You can make up your own dark life analogy for this one…

But there are 93 letters still in the bag (OK, 86 once your opponent has drawn theirs) and, over the course of a game, you’ll almost certainly get your fair share of good and bad ones.

So at first sight, Scrabble is a game of chance: who gets the best letters wins.

Yet it is remarkable how the better player almost always wins, regardless of the letters they draw. In reality, Scrabble is overwhelmingly a game of skill.

There is lot of skill in using and managing your rack of letters. There are often many clever ways to score highly with a seemingly bad draw, and to set up opportunities for later moves. It’s not always best to go for the highest scoring word; frequently its better to use up the bad letters and play the long game for a combination of good letters that will score a bingo.

And this brings me to the crux of my argument.

The real luck in life is not the stuff that happens – not the letters you draw from the bag – it’s how well equipped you are to deal with them.

In life this is analogous to being an optimistic, active, self-confident, can-do person as opposed to a pessimistic, passive, insecure, “I’m unlucky; it’s not my fault” person.

I consider myself to be very lucky, not because of the stuff that has happened to me in life, but because I am generally a positive person with an attitude of getting things done. To paraphrase an inspirational speaker I heard at the World Parkinson Congress in Kyoto earlier this year, when you get diagnosed with Parkinson’s, you make a list of all the things you can still do rather than the things you can’t do, and you focus on those.

Sure I have bad days, but overall I feel happier now than I’ve ever been. And that happiness is largely something I’ve made for myself, regardless of the Parkinson’s. I’m a firm believer that, like managing the Scrabble letters, you make your own luck in life.

Whilst I’m brimming with optimism, there’s one more piece of good news.

Some people are naturally more gifted at Scrabble than others, but everyone can learn to be better player.

And so it is in life too.

Slow progression

Thursday 26 September 2019

I saw The Professor last week for my six-monthly check up. It turned out Rachel, who has been researching my case, was on holiday so I had the privilege of catching up with the main man again.

He was in a good mood.  Upbeat and welcoming, presumably he had been on an enjoyable summer break himself.  

“You look well,” he started. “How have you been?”

“Well I might look well but I don’t feel great. I have a couple of new symptoms since last saw you. Orthostatic hypotension: I felt like I was pretty close to fainting in the office a few times. And problems with my speech. I trip over my tongue sometimes and occasionally even lose my voice. But the biggest problem continues to be fatigue. I have very disturbed sleep most nights meaning I’m tired much of the time. I have no problem getting to sleep. Staying asleep is the problem. Though I think sleep problems are par for the course with Parkinson’s.”

I was on a roll and decided to continue my brain dump so that he had the full picture.

“But I must say the Madopar is very effective. I like the flexibility of being able to take the tablets when I need them. On balance, I don’t think there’s any need to change my prescription.”

He did his routine movement tests and then we discussed each of my new symptoms in turn. 

The orthostatic hypotension - low blood pressure causing fainting - is often associated with the hot weather and dehydration, he told me. This seemed on the money... I had experienced several bouts during the summer hot spell, but nothing recently.

He told me my speech sounded fine, though suggested a visit to a speech therapist nevertheless. I fumbled my words a little (perhaps accidentally on purpose) as I acknowledged the idea.

And as for the sleep disturbances, as I suspected, he could offer no remedy. As I told him, the fatigue is part of the package and there’s nothing much anyone can do about it.

My condition had undoubtedly developed since my last appointment, but only slightly. Thankfully my progression is slow. He concurred with my view of leaving my medication unchanged for another six months.

Medical research is painfully slow too.

There was no further news on my genetic analysis, only confirmation that it was in progress, along with a vague prediction that targeted drug treatments are just a few years away. Much as his words were well intentioned and no doubt well informed, I can’t help feeling that the identification of a genetic factor in my family history of Parkinson’s is still a way off.

As for the holy grail of a cure, that feels to me a bit like the promise of nuclear fusion (the process that powers the sun, as opposed to nuclear fission which Is very different). Back in the fifties, nuclear fusion was about thirty years away from solving the world’s energy problems once and for all. Sixty years and billions of research dollars later, it’s still a promising technology - and still about thirty years away from being a reality.

So the theme of the day was slow progression: slow progression of my condition, slow progression of my genetic analysis, and slow progression of the search for a cure.

On the last point, I related to The Professor my ideas following my visit to Kyoto. That, once I retire in a few years’ time, I could offer my data analysis experience to research on a voluntary basis.

“That’s very interesting,” he mused. “A lot of our research involves bioinformatics. Crunching through large volumes of data. And something we find is that it’s hard to retain good people. They all get lured into jobs in The City or with software start ups.”

“You wouldn’t have that problem with me. I’d work for free for say three days a week. I would just need any expenses to be covered.  I might also need to be restricted access to some data like my own results. Anyway, I just wanted to sow the seed in case you had any bright ideas about how I could be useful.”

Later that day I sent him my CV. He acknowledged receipt with a thank you and a request to talk again when the time is right.

I don’t know if I can really be helpful in the search for better treatments. But I’d like to try. And perhaps the most useful thing I can contribute is the one thing that was lacking in my visit today. 

A sense of urgency.

The economics of Parkinson's

Thursday 5 September 2019

How much does Parkinson’s cost?

The Michael J Fox foundation recently published a study claiming that in the US the cost is $52 billion per year. That sounds like a big number but what does it actually mean?

Well, there are two types of cost: direct costs and indirect costs.

Direct costs are the money that is actually spent on Parkinson’s including hospitalisation, medical appointments and medication. According to the study, this part is $25.4 billion per year or an average of about $25,000 for each of the million or so PD sufferers in the US.

Let’s sanity check this figure. I pay £18 in prescription charges for my medication about six times per year. But the actual cost of that medication, for which the National Health Service foots the bill, I reckon is more like £250 a time or £1,500 per year. And, in the future, this figure will only go up as my prescription increases. In addition, I probably have an average of three medical appointments per year at a total cost of £1,000 or so, giving a total cost to the taxpayer of £2,500 per year.

Not so bad?

Not so bad right now, but in my later years I may need full time care. That typically costs something like £60,000 per year. If I assume I live 20 years with Parkinson’s and need significant care for the last 5 of those then we arrive at an average figure of £ 17,500 per year. This is pretty much in line with the Michael J Fox estimate, especially bearing in mind that healthcare in the US is more expensive than the UK.

The indirect costs are harder to estimate. These are things like lost income through time off work, early retirement and the cost of family members giving up their income to act as carers. The Michael J Fox study gives a figure of $26.5 billion for this or again roughly $25,000 for each PwP in the US.

Of course, loss of income is highly variable. If, like most people, you get diagnosed over the age of 65 then you are probably already retired anyway. In my own case I will most likely retire 4-5 years earlier than I would otherwise have done and because I am a relatively high earner the impact is significant. For each year that I could have been earning the taxman is losing tens of thousands of pounds and I am losing a lot more. In fact, both the taxman and I are already losing out because I currently work a 4½ day week due to the Parkinson’s fatigue.

Other factors, like the lost income of a spouse who chooses to go part-time to spend the rest of their time caring, are harder to estimate. And then there are other considerations like the fact that I have reduced life expectancy. Parkinson’s won’t directly kill me, but it will increase the risk of me choking, or put more pressure on my heart. My early death might in turn actually reduce the burden I place on the welfare state.

So the indirect costs are highly variable but the Michael J Fox number, as an average, seems reasonable.

In summary Parkinson’s costs about $50,000 or roughly £40,000 per person per year. These numbers don’t sound too bad until you multiply by the number of PwPs.

In the UK, that comes to around £5 billion a year. That’s enough to build perhaps 25 new hospitals.

However...

Thinking about it another way, if we cured all the diseases, we wouldn’t need so many hospitals or doctors, or nurses anyway. Or the medicines. Or specialist carers. Or the medical equipment. Or PhD students searching for answers. Or medical conferences that bring people together from across the globe.

Taking a broader view, a condition like Parkinson’s arguably stimulates economic activity that offsets much of what it takes from the public purse. These sorts of big dollar headlines need to be read with a sceptical eye.

So perhaps the most important financial impact is a personal one. I will be retiring early and maybe spending a chunk of my pension savings on care in later life, leaving me a lot less to live on. This is not such a big deal for me, given that I probably want to spend my twilight years watching endless boxsets and documentaries on Netflix rather than travelling around the world or driving a Jag. But, unfortunately, it does affect those closest to me.

Exponential decay

Saturday 24 August 2019

“What’s wrong? Is there something you want to talk about?”

Clara had a look on her face that I have come to recognise. We had just returned from an overnight trip to Sussex for my birthday and she looked concerned.

There was silence for a while. She seemed reluctant to speak but eventually came out with it.

“It’s your driving. You were driving too fast and there were two or three times…”

I interrupted with the typical male response.

“There’s nothing worse than a passenger seat driver. I wasn’t driving too fast. Maybe just over the speed limit, but not by much.”

But then I reflected on it for a minute and put my ego to one side.

"Actually, you're right," I continued. "I'm not safe any longer. At least not on long journeys."

We were only talking about a 1 hour 40 minute drive, but in that time I’d had to stop twice because I had been feeling pretty out of it. Tired and dizzy, I even had a brief nap at a service station. At times I had been driving in a bit of a daze, too fast and with slow reactions.

“From now on, I won’t drive for more than an hour,” I concluded. “Next time we go on a similar journey, either you can drive or we can take the train.”

Currently on a 3 year medical review licence (see previous post cleared to drive), I am legally allowed to drive only until the spring, after which I need to apply to renew my licence. I’m confident it will get extended, but I need to stay safe and that means limiting my time behind the wheel. I’m pleased that I got a couple of driving holidays, in the US and Canada, completed in the last two years, because I don’t think I could manage them now.

I expect that in another two years’ time I will again still be driving but perhaps even shorter distances – maybe I’ll be capping myself at 30 minutes by then. It’s a similar story with other activities, for example running. A year ago I was regularly running 5K. Now I still run once or twice a week but 3K seems to be the comfortable limit.

So I can still do many things, just less and less of them each year. In mathematical terms, this is called exponential decay. It’s the same concept as a half-life. For example, I reckon the distance I can drive and the distance I can run both have a half-life of about 2 years. This means that in 2019 I can do roughly half of what I could do in 2017, like running 3K instead of 6K.

Projecting forwards, I can expect to still be running in 2021, but perhaps only for a mile (1.6K) or thereabouts. Possibly I have got this wrong and the half-life is more like 3 years, meaning I can still run a mile in 2022.

At least, that’s my hypothesis. The term exponential decay sounds bad but, if my hypothesis is correct, this is actually a very good thing. I will still be active for quite a few years yet, just limited in how much I can do.

And with the running, because my mileage is so low and ever-diminishing, I probably never need to buy a pair of running shoes again…

How are you?

Thursday 8 August 2019

The lift doors are about to close but I squeeze in just in time. It’s 7:50am and I am on the way to the fourteenth floor to start my day.

A work colleague is standing in the back corner and she smiles at me. In her early thirties, she is someone I know by name, but not particularly well.

“Good morning,” she enthuses. “How are you?” 

It’s a rhetorical question, one for which a standard response is expected rather than an actual exchange of information. But her manner is earnest, as if she has a genuine interest in my well-being today and I hesitate in my answer. A series of options races through my mind. 

Option 1. I can lie and tell her I’m fine.

Option 2. I can tell her that I had five hours sleep last night, awake since 3am tossing and turning until 6. Again. That I am dreading the day ahead and the thought of another bout of orthostatic hypotension like I had yesterday, almost fainting several times and needing to lie down in the first aid room in the early afternoon. That I am afraid of losing my voice in a client meeting, as has started to happen occasionally. That I’m anxious about the heart palpitations that have returned recently. That I simply want to keep my head down all day and avoid any human interaction until I can slip away home quietly.

Option 3. I say something in between and put a positive spin on it. Something along the lines of: 

“Well actually I’m a bit tired; haven’t been sleeping well this week. But I can’t complain. The sun is shining and I have some holiday coming up soon. How are you? Did you go anywhere nice this summer?”

Option 4. I can invoke a little black humour:

“To be honest I’m feeling pretty crap today.” (Smile.) “I have this disease called Parkinson’s which makes me really tired. But it’s the perfect excuse for leaving work social events early. How about you? Do you have a tale of woe today?”

Option 5. I can babble on like an idiot:

“I can give you the real answer to that question if you like. It’s funny how we all say that but don’t really expect an answer. It’s a kind of ritual isn’t it? Like commenting on the weather. Or talking about pets. A way of making human contact….”

I snap out of my reverie. The initially momentary pause is now starting to become awkward. Decision time. Should I tell her the truth? Should I unload my woes?

But in the end, my response is – of course – the predictable one.

“I’m fine. How are you?”

The octopus has nine brains

Saturday 27 July 2019

Rosa has been vegetarian for a couple of years now. She used to be pescatarian, which I was quite happy with as I enjoy a lot of fish and seafood, but having a vegetarian daughter is fairly irritating when you’re a carnivorous parent.

That said I do respect her decision - and her resolve as I mischievously sizzle bacon in the pan for breakfast. I know that is the one thing she craves. Evil dad she sometimes calls me…

I, on the hand, have no such culinary morals. I readily eat veal for example and have no qualms about eating foie gras (though I rarely do as I don’t particularly like it).

But there is one thing I refuse to eat - octopus.

I did used to enjoy a bit of pulpo in a tapas restaurant occasionally. Then I read a book called “Other Minds” by Peter Godfrey-Smith which opened my eyes to the remarkable intelligence of the eight-tentacled cephalopod and its cousin the cuttlefish.

The most fascinating thing is that octopuses (or should that be octopi?) have developed an intelligence that is completely independent and quite different to ours. 

We have to go back 600 million years to find a common ancestor between us and the octopus, probably some sort of worm, only a few millimetres long and perhaps with primitive eyes. It also had simple neurons. These two evolutionary branches diverged greatly, leading to molluscs (including octopuses) and arthropods (insects etc.) on one branch; and vertebrates, mammals, primates and ultimately humans on the other branch.

It seems the primitive nerve cells developed in very different ways down the two branches. On the one hand we have mammalian brains - a central processing unit connected to most of the body via the spinal column.

The octopus, however, has a sort of distributed intelligence - eight semi-autonomous brains controlling each arm, connected to a central brain. Chop an arm off and it will continue to function independently for a time, feeling its way over rocks and so on. So, the octopus effectively has nine brains.

An octopus in a jar will quickly learn to unscrew the lid from the inside and escape. Octopuses in a laboratory tank are well known for playing pranks on the scientists, for example squirting water at them as they walk past. But they also exhibit intelligence in ways we barely understand. Many octopuses and their relatives cuttlefish, put on spectacular colour shows, rapidly changing the pigments in their skin, sometimes for camouflage but also as a way of communicating. But we have yet to decode their language. You can find clips of this on YouTube, for example: https://www.youtube.com/watch?v=IXhwmpsdKwg.

In addition, octopuses have three hearts, have blue copper-based blood, can smell through their suckers and squirt poisonous ink, to name just a few features.

Somehow it just feels wrong to eat such a remarkable creature. Or to perform experiments on it.

When it comes to Parkinson’s research, experiments are not performed on octopuses, but they are commonly performed on rats and occasionally on monkeys. Rats are the laboratory animal of choice because they can be chemically induced with a form of Parkinson’s in order to perform initial trials on new drugs. Incidentally, I suspect this is not a very reliable model because nearly all of the drugs that show promise in rats fail in humans.

Is this morally justifiable? If deliberately crippling and then cutting open the brains of animals can help lead to treatments to end the misery for 10 million people worldwide, is that a sacrifice worth making?

Many people can come to terms with performing experiments on rats, which seem to be far simpler creatures than us, but struggle when it comes to other primates, which demonstrate more human like behaviours. However, what the octopus teaches us is that animals we take for granted may be sentient in ways we have yet to understand.

There are no easy answers here. No black and white, no right or wrong. Only shades of grey and difficult choices. 

Returning to the octopus, there is something else surprising. The dense mass of neurons in each arm, and the associated cephalopod ink, carry rich concentrations of levodopa, the main drug used to alleviate the symptoms of Parkinson’s. Luckily levodopa can be artificially manufactured. But suppose that wasn’t the case and the best source was octopus. Then, for me at least, that really would be a dilemma.

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.