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?”

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.

Going to Kyoto

Sunday 5 May 2019

Inari is the Japanese fox spirit. It is worshipped in Shinto Buddhism for many things, but particularly for the success of the rice harvest, used for food and also to make sake.

The main Inari shrine in Japan is at Fushimi, a short train ride south of Kyoto. It has 4 kilometres of trails up a wooded hillside lined with thousands of beautiful orange arches called torii that lead to dozens of individual fox statues, each one regarded as a messenger of the Inari. 

A visit to the Inari Fushimi complex was one of the highlights of a holiday we took in Japan about a decade ago, and I hope to see it again in the first week of June. I’m excited to be going to Kyoto as a delegate of the World Parkinson’s Congress being held there over four days.

I haven’t been to the WPC before (the last one was three years ago in Portland, Oregon) but I gather it’s the leading global event for Parkinson’s research, therapies and awareness. Apparently, everyone who’s anyone in the world of PD is going to be there. On the registration form there were boxes to tick for researchers, students, therapists and so on, but also PWPs and their families. So on the one hand there is the opportunity to learn a lot of cutting-edge science, and on the other hand I hope to meet some fellow bloggers.

Given the cost and the long-haul flight I hadn’t been planning to go.

But then I was having lunch with three of my PWP buddies yesterday and discovered that they were all going, along with assorted spouses and family members. After a bit of persuasion, I had a look at flight options and hotels, and suddenly it didn’t look so expensive. Plus I need a “holiday” anyway after an exhausting few months at work.

Japan seems a fitting country to host the WPC. Perhaps thanks to the Inari, the Japanese are a very healthy people and Japan is the country with the highest life expectancy in the world. But with the large elderly population comes the curse of diseases like Parkinson’s and Alzheimer’s.

People pray to the Inari for many things other than agriculture. When I visit Fushimi Inari this time, I shall find a quiet shrine and say a little prayer of my own.  To help us find a breakthrough in the search for a cure. A cure for not just ten million people around the globe who currently have Parkinson’s, but the many more to still to come.

The middlegame

Saturday 6 April 2019

Following my last visit to the neurologist, already some two months ago, I am now on a three-times-a-day dose of levodopa (tradename Madopar) in addition to my dopamine agonist (Pramipexole).

A simple thing like upgrading my medication wasn’t straightforward: firstly I had to chase the neurologist for the prescription letter, then my GP surgery cocked up the order to the pharmacy, and then there were the side effects of adjusting to the new drug: daytime sleepiness, irregular heartbeat, nausea, dizziness and so on. In the meantime, my Parkinson’s symptoms were getting worse. How do people less able bodied than me cope, I wonder?

Thankfully, things now seem to have settled down.

To return to my chess metaphor, after some opening sparring where I lost a couple of pieces, I am now embarking on a long middlegame. For now, my defences are stable, but each upgrade in my regimen is akin to a pawn swap with the Parkinson’s Grandmaster: gradually eroding my front line until, eventually, he can exploit my underlying weaknesses. It is a slow process of attrition, and I need to be careful with my moves so as to prolong the middlegame as long as possible.

Indeed, I am now even more reliant on my daily drugs. I read about NMLS – neuroleptic malignant-like syndrome – in the leaflet that comes with my bottle of Madopar. This can occur if I stop taking my medicine suddenly. “NMLS can be life threatening,” it warns. “Signs include increased shaking, high temperature, sweating…” and so the list goes on. A little research reveals that NMLS comes with about a 20% chance of death.

I carry on with my daily life. But it feels like a precarious existence dependent on a global pharmaceutical supply chain. A dependency that will continue for many years until, eventually, I get to the endgame.

A year on the hard stuff

Saturday 23 March 2019

My one man experiment to see if drinking a glass of single malt Scotch every day can help with Parkinson’s has been going for a year now.

So what’s the outcome? Have I single-handedly made an astonishing breakthrough where billions of dollars of investment by big pharma have failed? Or is this yet another candidate treatment for PD to add to the reject pile?

Highly unscientific though my experiment has been, I am tempted to draw three conclusions:

1. Single malt whisky may have a small, short term effect on slowing the progression of Parkinson’s
   

Anecdotally, my Parkinson’s was pretty stable for most of the past year. And symptoms got slightly worse roughly when I started working abroad again a couple of months ago (I am back in Copenhagen two to three days every week, unable to carry bottles of whisky in my hand luggage). But I think the correlation is weak and certainly my symptoms have not improved overall.

So at best progression of my disease may have slowed a little, but in this it is difficult to be conclusive.

2. In the long run it probably makes minimal difference
   

Even if it had a small short term effect, I think in the long run things will essentially be the same.

3. I like whisky

The right thing to do now would be to stop drinking whisky completely so that I can at least compare the effects with and without my special medicine. But let’s be honest: my experiment, like so many trials for new Parkinson’s drugs in recent years, has essentially failed.

Nevertheless something good came out of it... I discovered that I enjoy a taste of Speyside or Islay every day. So in this particular endeavour the pleasures of the Scottish fire water outweigh scientific rigour.

That said, I probably will cut back my consumption a little. But not because I’m worried about pickling my liver. 

Whilst I’ve been focusing on whisky for the past 12 months, I’ve been missing out on another one of life’s simple, alcoholic pleasures: the occasional glass of red wine...

Seven reasons to be cheerful

Friday 1 March 2019

We Brits do like a good moan.

Take the weather. It’s usually either too hot or too cold or too wet or too dry, but rarely just right.

When it comes to talking about your newly diagnosed neurodegenerative disorder on an online forum, some doom and gloom is, of course, justified. But the forum on Parkinson’s UK is particularly full of negativity. If you want stories of depression and despair, serious drug reactions and family breakdowns, then fill your boots.

On one recent thread, two newly diagnosed women in their early forties both said the same thing:

“I keep searching for positive stories….”

“I too would like to hear some positive stories.”

I thought about it for a few minutes and then posted the following:

“In my first year after diagnosis I went through my fair share of ups and downs. But here are 7 reasons I’m now positive:

1.    Young onset PD typically progresses very slowly. Most people with YOPD lead a decent life for several decades.

2.    With the right medication, the motor symptoms of PD can virtually disappear - the main challenge is fatigue.

3.    I still work almost full time (4.5 days per week) in a demanding job (10 hrs+ per day, lots of travel).

4.    I still go on nice holidays, enjoy activities with my daughter, pursue my hobbies and even still run a little (I can’t run marathons any more but I don’t want to anyway).

5.    There is a huge amount of money going into research which could result in a cure in our lifetimes.

6.    I’ve got to know several people locally with PD and we are very supportive of each other.

7.    Although some days are pretty tough to get through, having PD has sharpened my focus on what matters in life. With a supportive family, I can honestly say I’m happier now than I’ve ever been.

You will likely have to make some adjustments but you can still live a wonderful life for many years to come…

Best wishes”

The responses were truly heart-warming.

“Can I just say how good it felt to read something so positive. I was diagnosed a few months ago at the age of 50 and have been struggling to find some solid ground, so to hear from somebody like you is lovely and gives me a real boost.

Thank you.”

“Your reply is exactly what I’m looking for

Thank you”

“Thank you, it makes such a change to hear something positive.”

I was probably embellishing a little, and the long-term prognosis is not so rosy, but I felt good that day.

Negativity can be self-reinforcing. But a little positivity can be infectious too.

Brexit

Friday 22 February 2019

Customs Union. Backstop. Norway model. Switzerland model. Canada model. Norway-plus. Ukraine Style. Turkey option. ERG. No deal.

What does it all mean?

I don’t really know and, like many people, I don’t really care.

The triggering of “Article 50” two years ago, setting in motion the UK’s divorce from the European Union, roughly coincided with my diagnosis of Parkinson’s. My mind was, understandably, preoccupied with things other than politics at that time.

But curiously I’ve lived in something of a news vacuum ever since.

Clara often says to me, “did you hear about blah blah blah today?” and I respond with a blank look. Sometimes I listen to the radio in the mornings but I zone out of most of it, don’t read the papers and don’t check much news online, other than business-related stuff that I need to know for work. The time I would have spent taking in the daily news is now diverted to reading research papers, posting on forums and writing this blog.

Having my condition means that current affairs, yesterday’s football results and who got voted off Strictly don’t actually matter any longer.

Except that they do matter.

Having an awareness of what’s going on in the Six Nations rugby, or the Champion’s League, or Love Island is something to talk about at work the next day. These are shared experiences that, however transient, bind us together.

To chat about stuff, to gossip, to have an opinion on the trivia du jour is to be human. And, in this, I have lost my way over the past two years.

I suspect Brexit will rumble on for a while yet. Which gives me plenty of opportunity to re-engage in the daily chat. Along with Formula 1, the latest Netflix originals, and the big cat stories that Clara sometimes emails to me. And perhaps these things will give me an edge in the long psychological battle with Parkinson’s Disease…

A family affair, part 5: the plot thickens

Monday 4 February 2019

It had been over a year since I had spoken to The Professor, and once again I today met with one of his team at my six monthly appointment, rather than the man himself.

Rachel was a new face to me but, as far as I could work out, another long-sanding member of his seemingly large research group. Though initially slightly hesitant at the pleasantries of introducing herself and shaking hands, she was earnest in her questioning and note taking.

We talked about my progress over the last six months: largely stable but with a deterioration over recent weeks. Her clinical tests reinforced my view that, after 18 months on the same medication, it was time for an upgrade to my regimen. (Indeed, I am having quite some difficulty typing this text…).

But before writing me a new prescription there were the all-important genetic test results to discuss.

For over a year since I gave a blood sample to have my genome sequenced, I had been looking forward to some answers. An explanation as to why four generations of my family have been afflicted by this incurable disease. A definitive genetic marker that my daughter and my siblings can be tested for to enable them, if they so wish, to make life and lifestyle choices if it turns out they are at risk.

Rachel cut quickly to the chase.

“Your 100,000 genomes results are all negative.”

I no doubt had a surprised expression which prompted her to explain in more detail.

“We tested your DNA against all known alleles that are associated with an increased risk of Parkinson’s and you don’t match any of them. But given your family history – with someone affected in every generation – it’s very likely there is a genetic factor. We’re now going to move onto a research phase to try and identify whether you are carrying a mutation not yet described. It could take some time.”

I was her last appointment of the day and we chatted for a long time, nearly an hour: about my family history, the contribution of my mother and uncle had made by also giving blood samples to the research programme, and my own experience with Parkinson’s. Evidently I am doing well. Over four years since symptoms first became clear, I’m still functioning pretty successfully and still on a low dosage of a single drug. There is a lot of headroom in the future to boost my medication.

Towards the end of our time, The Professor popped his head around the door for a few minutes to discuss my medication. It was good to chat to him after so long.

We agreed to keep my dopamine agonist the same (given all the cardiac issues I experienced in 2017) and introduce a small amount of levodopa.

He sounded enthused at the possibility of discovering a hitherto unidentified genetic variant linked to Parkinson’s. Perhaps some kudos for him and his team.

And I must admit, despite the initial disappointment of not having an answer to the genetic mystery, I too had a brief frisson of excitement at the thought of being at the forefront of medical science.

Unfortunately, I may now be waiting another couple of years for answers – if indeed the research team is able to find any answers.

In the meantime, the levodopa will give me a boost. But it is a boost that will be temporary as the slow death of my precious dopaminergic neurons inexorably continues.

Tough day ahead

Thursday 31 January 2019

Awake since 4am, tossing and turning in the bed, uncomfortable with constipation.

Headache as I shave and shower, not paying attention to Radio 4 droning on about the interminable Brexit machinations.

Shut the front door and venture into the darkness. Sub-zero today and I step gingerly over the icy patches on the way to the station. 

Dozing on the 7:12 to Blackfriars, too tired to check my email, but at least I have a seat.

Chest already feeling tight with the stress of another night of disturbed sleep.

Despite my recent optimism and positivity, most days in the office are tough, but today will be extra hard to see through to its conclusion.