2020: Farewell or good riddance?

Thursday 31 December 2020

What to make of 2020?

The 2020 photo album I am compiling is, unsurprisingly, a lot thinner than usual. Not a lot happened in January and February anyway, and then – boom – the Covid-19 pandemic took over the world and there was even less to put in the photobook. Just a few pictures of empty supermarket shelves and face masks fill the March and April pages. The rest of the year comprises a small number of brief highlights, like a September trip to Venice or a fun Halloween, connected by long stretches of isolation. November stands out as a month where nothing happened at all: in the last 12 years of assembling the annual photo album, this is the first time there’s been a month without a single picture on my iPhone.

Of course, if, like my neighbour Jim, or a number of people at work, your whole family came down with Covid-19, then it was a pretty miserable year. Or if your business went under. Or if one of your parents died. Or if your teenage daughter was hospitalised for several weeks with a painful neurological condition. Or if your incurable Parkinson’s got a little worse. Given that the last three of these things did happen to Clara or me, it is tempting to write off 2020 as a year to forget. An annus horribilis as The Queen once said in her Christmas speech.

However, most clouds have a silver lining. So, whilst appreciating that it was a crap year for many, here are five good things that came out of 2020.

1. Staying connected

Ironically, given social distancing, Covid-19 brought many of us closer together. I’ve seen a lot more of my siblings than ever before: we have family Zoom calls every few weeks whereas in many years previously we would see each other only at Christmas. I schedule regular video catch ups for the local PD community. I see some of my friends more than before, albeit on a screen.

Surprisingly, in a work context, whilst we miss out on the human connection from the simple act of shaking hands, we do get to see into people’s sitting rooms, studies and bedrooms. We often talk more openly about our personal lives than we would do in the office, as the boundaries between work and home have become blurred. I’ve got to know many work colleagues better over Zoom or Microsoft Teams than face to face.

2. Working from home

For millions of office workers, working from home was always an option but in many companies was seen as a privilege to be used occasionally rather than a full equivalent to showing up in person.

Perceptions have now changed. For instance, the working mother, who works from home 50% of the time can now expect her career to progress just as quickly as her colleague who produces the same output but spends five days a week in the office.

3. Local community

Our local Café Rouge sadly closed down but many local businesses are flourishing. The nearby butcher, bakery, Italian deli and various restaurants have adapted their offerings and are thriving as a result. Those who have innovated and adapted have done well. For example, many of the local eateries now offer takeaway coffees during the day gourmet delivery menus in the evening.

Similarly, local community has had a boost. Several times we’ve benefitted from the WhatsApp group for our street. Originally set up for the pandemic, it had the side effect of bringing local residents together for anything from helping with damp problems to sourcing pumpkins for Halloween.

4. Environmental benefits

From reduced carbon footprint to clear water in the canals of Venice, this is an obvious one… the challenge now is how we sustain it.

5. A sharpened perspective 

Not long before the pandemic hit, I overheard in a restaurant two men talking about the pros and cons of various airlines’ business class offerings. One said: “The problem with the new BA transatlantic business class is the holder for the mineral water bottle. It’s in the wrong place so that when you’re on the flat bed and need a drink it’s awkward to reach.” This may well be true, but, really? WTF? In the context of no longer being able to fly anywhere at all, this sort of observation seems even more absurd than it already was.

As another anecdote, shortly before the second lockdown we went to listen to a concert by the Brodsky Quartet, some would say the best string quartet in the country. It was a one-off performance of pieces by Beethoven. The leader of the group gave a heartfelt speech of how much it meant to them to playing that evening. Particularly poignant was listening to “Cavatina” from String Quartet No. 13 in B flat (opus 130). This is the final recording on the golden record of the music and sounds of Earth, on board the Voyager 1 spacecraft, currently the furthest manmade object from our planet. So this short piece of music which we had the pleasure of listening to live prior to the lockdown also represents humanity far beyond the edge of our solar system.

The point is that often it is only when things are taken away that you really appreciate them.

But when things are taken away, as with Parkinson’s, it’s also important to focus not on what you no longer have, but on what you still have and still can do.

And perhaps that is the most important thing to take forward from 2020.

Waiting for Godot

Sunday 22 November 2020

In Samuel Beckett’s seminal play, Waiting for Godot, the two main characters (Vladimir and Estragon) engage in a seemingly endless and somewhat hypnotic dialogue about the impending arrival of the mysterious Godot. After two absorbing hours, Godot never shows up and his identity is never revealed, leading to much speculation about who he really is. Over the years there have been many interpretations of this strange play, from political to religious to Freudian. Beckett himself never revealed its intended meaning, perhaps because it was deliberately written to be ambiguous.

During this month of November, I’ve been feeling a bit like I’m waiting for Godot.

First there’s the pandemic and the latest lockdown. Despite the optimism of the vaccine announcement recently, we don’t yet know how this is all going to end. We are all waiting for something to happen that will bring the whole episode to a conclusion, but we don’t quite know what. And we talk about it incessantly in the meantime.

Then there’s my work. In recent weeks this has become even more of a struggle than previously: every day it’s is an exhausting challenge to make it through to 6pm which is when I typically down tools and get on the exercise bike. So I’m looking for a way out.

I have a master plan to get involved in charity or research work related to Parkinson’s or Alzheimer’s, and have spoken to a number of organisations. I’ve also applied for three jobs for various charities, but so far, have not even got as much as an interview. The plan B is to stick with my current employer, but I feel it is a matter of months rather than years that I can keep doing my current role. Again, I feel like I’m desperately searching for something but I don’t know what it is.

And finally there’s Parkinson’s Disease itself. I had my six-monthly check-up this week. As expected, there was some tweaking of my dosage to keep up with the progression of the condition, which is a little worse now than last time. I now shake quite a lot when not medicated.

I asked again about my genetic analysis, but there was no news. There is almost certainly a misspelling somewhere in the 3 billion letters of my DNA. But it’s very hard to find a needle in a haystack when you don’t know what a needle looks like. Again, it’s a case of searching for something without knowing what you’re looking for. To some extent this applies to a lot of research into neurodegenerative conditions. For millions of people across the world, like the dialogue in Waiting for Godot, the story goes on, but salvation never comes.

So, November has an air of gloom about it. Perhaps December will bring fresh hope. That said, October was a fun month, finished off by a great Halloween. Rosa and I went to town (literally, to a costume shop) and we dressed up as a plague doctor and the grim reaper respectively. A wicked twist on Covid-19 that only a few trick or treaters twigged. We decorated the front of the house with fake cobwebs, spiders, blood stains on the windows, and, to add the icing on the cake, hung a life size skeleton down from the front bedroom window on a length of rope. With a suitably evil pumpkin and bottle of hand sanitiser by the front door we lured in around 40 terrified children.

Luckily, they all went away with sweets and chocolates.

Speaking of luck, there is a character called Lucky in Waiting for Godot who has a trembling voice.

Interestingly, according to Wikipedia:

Jean Martin, who originated the role of Lucky in Paris in 1953, spoke to a doctor named Marthe Gautier, who was working at the Pitié-Salpêtrière Hospital. Martin asked if she knew of a physiological reason that would explain Lucky’s voice as it was written in the text. Gautier suggested Parkinson's disease, which, she said, "begins with a trembling, which gets more and more noticeable, until later the patient can no longer speak without the voice shaking". Martin began incorporating this idea into his rehearsals. Beckett and the director may not have been completely convinced, but they expressed no objections. When Martin mentioned to the playwright that he was "playing Lucky as if he were suffering from Parkinson’s”, Beckett responded by saying " Yes, of course", and mentioning that his own mother had Parkinson’s.

When Beckett was asked why Lucky was so named, he replied, "I suppose he is lucky to have no more expectations..."

Reflections in Venice

Saturday 26 September 2020

This is my sixth visit to Venice, but the first time I’ve been up the campanile (bell tower) of the Church of San Giorgio Maggiore, which sits on the small island directly in front of St Mark’s Square and the Doge’s Palace.

Wow, what an astonishing view!

In my opinion (and the opinion of many others), Venice is the most beautiful city in the world. The place is ridiculously photogenic. Stand virtually anywhere in the city and point your camera in any direction, and the chances are that you will have taken a good photo. Of a serene canal, or the rich blood red façade of an old palace, of elegantly crumbling brickwork, or a shop window full of carnival masks, or perhaps an ornate lamppost.

But if it’s a panoramic view you want, then the one from this particular bell tower tops them all: amazing Venice, formerly one of the wealthiest and most powerful states on the planet, laid out in all its glory in front of you.

Clara and I came here for a long weekend because Italy is one of the few countries not subject to quarantine on return to the UK. In these Covid-19 days it’s still possible to have a beach holiday or city break, but there’s little point in trying to plan ahead; last minute bookings are the way to go.

That said, Italy has been on the safe list for a while now. And you can see why the virus is under control here. A couple of times I forgot to put my mask on: when stepping onto a vaporetto (water bus) and when popping to the loo in a restaurant. On both occasions I was immediately scolded by eagle-eyed staff. People here just take it more seriously than in the UK, though it helps to have a government that issues clear, consistent guidance.

Whilst wandering the winding streets, we stopped several times to gaze at the reflections of terracotta and salmon coloured buildings in the canals.  This (cue thinly veiled segue into discussion about Parkinson’s…) got me reflecting on my own situation now that nearly four years have passed since my first post about living with Parkinson’s.

So, here’s a sort of four-year status report.

1. Athletic decline. I went out for a ten minute run this morning and probably covered just over a mile, stopping only once. That’s about as much as I can manage comfortably and is quite a decline from my last marathon in 2016. But I feel pretty good about the fact that I can still run at all.

2. Fine motor skills. These are a problem. Writing, typing, buttoning my shirt, opening bottles. All of them are difficult even when I am loaded up with levodopa. I took a tablet an hour ago and my hand still hurts typing this.

3. Speech. Problems with my voice have started to come on in the last year or so. Most of the time it’s fine, but sometimes I am quiet and husky. Sometimes I fumble my words. It feels as though my mouth no longer does exactly what my brain wants it too.

4. Fatigue. This is by far the biggest issue, and it’s in large part due to bad sleep. Sometimes I have nights where I only sleep for two or three hours, and I’m a train crash the next day. Even after a (relatively) good night’s sleep I normally need one or two powernaps in the afternoon. 

5. Drugs and addictions. I’m on relatively mild doses of a dopamine agonist (Pramipexole) and levodopa (Madopar) and these do make a big difference, enabling me to get through the work days. The downside is the addictive behaviour. Harmless things like playing a lot of online Scrabble, and mild at the moment, but one to keep an eye on as my doses inevitably increase.

6. Other physical symptoms. These come and go, but include no sense of smell, constipation, occasional sharp pains, eyesight problems, general stiffness, tremor and involuntary twitching. Oh, and the expressionless face.

7. Cognitive decline. This is a tricky one. I’m definitely slowing down, and both my short term and long-term memory are not as good as they used to be. But on balance I think the fuzziness in my head is a result of the fatigue and normal ageing, rather than some sort of clinical dementia.

8. Work and play. Despite the above, I still work almost full time, go on holidays, do the gardening and clean the house every week. My driving licence has been renewed for another three years (though I no longer permit myself to drive for more than half an hour). I try to be a decent husband and father. 

Overall, not so bad. But every day, every week, every month, a few more of my brain cells die. There is no cure, no respite, no stopping the relentless progression. Daily activities ever so slowly get harder. If I’m honest, I am a little afraid of what the future holds.

However, the good news is that the campanile of the Church of San Giorgio Maggiore has a lift installed. So, even as my body declines, I should still be able to gaze over amazing Venice on my next six visits.

Your remarkable brain

Sunday 6 September 2020

It was coincidence that Clara and I wore black cloth facemasks, the same as those worn by the undertakers, but it seemed fitting at a funeral during the covid-19 pandemic. A sort of modern-day version of the plague.

I won’t dwell on the proceedings other than to say that my father-in-law was buried on an appropriately chilly and overcast day after a simple but moving church service attended by extended family and a number of his erstwhile parishioners. A fitting end to the long life of a thoroughly decent person.

Our trip to the Wirral for a couple of days last week was one for reflection but the long train journey also gave me time to read a book: Life Lessons from a Brain Surgeon by Dr Rahul Jandial. Written by a leading specialist in brain tumours based in Los Angeles, it’s a slightly strange mix of stories from the operating theatre, popular neuroscience, and self-improvement guide but nevertheless is an engaging and worthwhile read.

Dr Jandial presents brain surgery as an adrenaline rush along the lines of something like free climbing: one false move in a procedure lasting several hours could spell disaster. Apparently, the popular perception of brain surgery being the most elite medical specialisation, taking only the smartest apprentices, is true. Brain surgeons really are very clever, the best of the best, but they also need to be ice cool under pressure.

I always knew the human brain is an astonishing product of millions of years of evolution, but here are five remarkable things I learned from Dr Jandial’s book:

1. You can have brain surgery whilst awake

If someone cracks your skull open, you certainly feel it, but once inside, the brain itself has no pain receptors and doesn’t feel anything. This leads to the amazing possibility of waking up a patient once their brain is exposed and operating whilst talking to them. This is useful for instance when a tumour is close to the areas of the brain that process language: the surgeon can temporarily numb the areas he is thinking of removing and check that the patient’s speech or ability to understand language isn’t affected before proceeding. Once the tumour has been removed, the patient is put back under again whilst the skull is closed.

2. Left brain/right brain is a myth

Remember all that stuff about the left side of your brain being the logical, analytical side and the right side being the creative, artistic side? And that one side is dominant? Apparently this stems from a 1973 article in the New York Times Magazine and it quickly became a widely accepted truth. Only it’s been comprehensively demonstrated to be untrue. There are some specialist areas of the brain, like language processing, that are found only on one side, but the notion of “right-brained” and “left-brained” is simply wrong.

3. Bilingual children have significantly more developed brains

If as parents, you speak more than one language, then try to raise your children as bilingual. It turns out that people who are bilingual have better attention spans, learn faster and, surprisingly, are at lower risk of dementia later in life.

4. You can function with only half a brain

This one is truly remarkable. In rare cases of severe epilepsy, the electrical activity on one side of the brain is erratic and the only known cure is to amputate the troublesome side, in a procedure known as a hemispherectomy. When performed on adults, removing half the brain can have a significant impact on the ability to control one side of the body, but when performed on children, such is the brain’s neuroplasticity – its ability to adapt – that it will often rewire itself to regain full control. Yes, there are people out there functioning normally with literally only half a brain.

5. Anyone can suffer from a neurodegenerative disease but there’s a lot you can do to lower the risk

Until we find cures for different types of dementia and various neurological diseases, our best bet is to lead healthy, active lives. Exercise is well known to slow down the onset and progression of Parkinson’s for example. Keeping socially and mentally active are both connected with reduced risk of developing dementia. Stimulating and using your body and mind, and having a large social network won’t guarantee that you won’t get afflicted in later life (think of Margaret Thatcher’s dementia), but it will lower your chances.

The last point certainly merits attention. It's a triumph of nutrition and medicine that so many of us now live to our 70s, 80s and beyond. But nobody wants to lose their mental faculties, or their identity, in old age.

Clara’s Dad led a healthy life – both physically and mentally – for 94 years.

He was lucid right up until the end.

A long day

Saturday 8 August 2020

See also previous posts The call and The in-laws.

Clara’s Dad died around 2:30 this morning.

Clara was on her way to the hospital to take over the overnight vigil from her brother when her father took his last breath. In a way she was relieved not to be there when it actually happened. She had already spent much of the previous 48 hours with him, witnessing his final lucid moments, and listening to his shallow breathing as he peacefully slipped away.

His death certificate will probably say something like pneumonia (ironic on the hottest day of the year), but the truth is he simply died of old age. He was 94 and it was his time to go. He’d had a good innings as they say. And, mostly thanks to Clara, his last three years living across the road, had been comfortable ones. Clara had visited him nearly every day in that period, and I had periodically taken him for drives round the local area.

When my mother-in-law died two years previously it was sudden, and I felt a surge of emotion at the time. This time, the best word to describe how I feel is probably “content”. I’m happy that this decent, mild-mannered, erudite gentleman of the previous generation passed away gently and mostly painlessly, more or less at a time of his choosing. His children had strived to give him the best possible last few years, and were with him at the end. A fitting end to a worthy life as a college administrator and lecturer in English, but also a husband, father and loyal friend.

There’s not much you can say to your wife when their remaining parent has just died. Throughout the day, I tried to be there if she needed anything, but I also tried to give her space. I avoided talking too much, lest I put my foot in it by saying something unintentionally insensitive.

By 6pm, I suggested we go out for dinner to a local pizza restaurant. Conversation inevitably turned to funerals (how does that work with Covid-19?) and the flurry of other activity that will take over the coming weeks and months, including the grim business of sorting through the deceased’s possessions. Clara is, of course, also starting the process of grieving.

By the time we got home, we were both exhausted. It had certainly been a long day. A sad day, yes, but also a day to reflect on a life well lived, and a family baton handed over smoothly to the next generation. 

Cheesemaking

Saturday 6 June 2020

I spoke to Rosa this morning over FaceTime, as I normally do on the weekends when she isn’t visiting Dad. We generally chat about a variety of topics: school work, what her friends are up to, what’s on Netflix, how her cat is cuter than Clara’s cat, and so on. But this week there was a series of silences and a distinct feeling that there was nothing to talk about.

It's a similar story with the regular Zoom video conference calls I’ve set up with various groups of friends and family. At first it was novel and exciting to connect with people in this way and there was a lot to talk about. Two months later, it’s becoming a struggle to make conversation.

The problem is that, in the covid-19 lockdown, every day is much like every other day. Every week the same as the previous week. Time blurs into a monotonous continuum, where you start to lose track of which day of the week it is. Furthermore, because there are no markers in the calendar like holidays, or dinners with friends, or events at the school, you even start to lose track of the overall year. I was surprised to realise today that it’s a month already since my last blog post.

With all the monotony, little things take on more significance.

The highlight of this week was visiting the local recycling centre for the first time in several months, to deposit some garden waste and some old clothes. Even Clara was excited.

“How was it?” she asked as soon as I walked through the door.

“Well,” I enthused, “there are two guys manning the gate, who check the car registration against their checklist of bookings and then let you in. Once inside there are three more men supervising, though I was the only person there. There are four parking spaces and lots of signs giving instructions about social distancing. It was quite exciting but also a nice experience given that I had the place to myself. Apart from the five council employees…”

With emptying the bins being about the most interesting event to look forward to, it's easy to become lethargic in this sort of lockdown situation, and start to let life drift by without really realising. Over the last couple of months I’ve relapsed into playing a lot of online Scrabble again – harmless enough but a pretty big waste of time. I feel it’s something of a lost opportunity.

I recently started looking for useful things to do, but preferably ones that don’t involve starting at a screen for hours on end – I get enough of that from work.

So, I built a new garden shed (from a flatpack) a few weeks back, which kept me busy for a couple of days. And last time Rosa was here, we did some cheesemaking.

Making cheese is sort of like magic. For soft cheese, take milk and mix in a tiny tablet of rennet (an enzyme, originally found in sheep stomachs but that now comes in vegetarian form). Then heat at just the right temperature for half an hour and watch the cheesy curds separate from the watery whey. Take the curds, add citric acid, herbs and salt depending on the type of cheese, allow to set, and you’re done. So far we’ve made mozzarella, ricotta, Scottish crowdie and some delicious halloumi (the latter using creamy Jersey cows’ milk).

I think keeping busy like this is particularly important with Parkinson’s. Not only does it keep you sane, it makes life more rewarding.

But most of all: as I am struggling to type with painful hands now, I am reminded that I only have a few “active” years left. And I really don’t want to give one of them away for free to Covid-19.

Loving the lockdown

Friday 8 May 2019

I suspect I’m going to regret saying this, but right now I’m loving the lockdown.

I do, of course, acknowledge I’m one of the lucky ones (with the caveat that we often make our own luck – see previous post Lucky or unlucky?). I still have a well-paid white-collar job, a job that I can perform reasonably well from the comfort of a spacious house, without any screaming young children running around.

The local Tesco stocks everything needed to sustain life. (It did run out of fresh raspberries and strawberries for a couple of weeks, but the grapes were still arriving from places like South Africa and Chile... phew!)

I live in a suburban area with wide streets, so going for a Sunday walk is better than it’s ever been, with barely any traffic either on the roads or overhead, great air quality, and the lovely scene of contented parents and children sharing family time together. Even the weather has been pretty good since social distancing measures were introduced back in March.

The main reason I love the lockdown is because it makes getting through the work day so much easier with Parkinson’s. Back in February and March, every day was a desperate battle with fatigue. The morning commute was exhausting in itself and by the time I was making the journey home often I could barely stand up. Many times I felt close to blacking out on the train platform in the evening.

Working from home, having virtual meetings through a screen all day, is also pretty tiring but I avoid two hours of travelling and, best of all, I can sneak off to the bedroom for a five-minute power nap whenever I feel the need, and nobody needs to know. I do this once or twice (occasionally three times) per day and it makes all the difference.

Obviously, there are disadvantages to living like this. Eating or drinking with friends has to be via video link, there are no holidays to look forward to, no shops to browse in, and I can’t visit my mum to give her a big hug. Home haircuts were a bit scary at first but are actually quite fun now.

And then there’s the strange phenomenon that the weeks really fly by when the daily routine is the same. To understand why, see previous post: The perception of time.

But I can live with all these things for a while. Perversely, my biggest concern is that this must, somehow, eventually come to an end. At which point I’ll need to return to the office, at least for two or three days a week. Now that I’m used the routine of working from home, the prospect of the struggle to get through days in the office is not one I’m looking forward to.

So, I resolve to make the most of the lockdown while it lasts. I appreciate many people are having a tough time right now. But, three years and counting since my diagnosis, for me personally, it was just the tonic I needed.

Oh, and it also helps avoid dying from covid-19.

In search of inspiration

Sunday 26 April 2020

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

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

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

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

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

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

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

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

Shall we FaceTime?

Wednesday 1 April 2020

“Shall we FaceTime?” I asked.

Rachel sounded surprised at my suggestion. I continued:

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

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

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

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

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

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

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

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

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

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

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

Spring is not in the air

Monday 2 March 2020

It is light now when I awake shortly after 6am. The walk to the station passes by daffodils and cherry blossom. The camellia in the garden is heavy with pink flowers. Sunday was bathed in lovely sunshine. It is now March rather than February and the four darkest, wettest and coldest months of the year are over. Springtime beckons.

Or does it?

Actually, I normally get pissed off at this time of the year. There are usually a couple of mild sunny days that lure you into the false belief that the winter has finally passed. And then, sure enough, it turns cold and wet again. Work is busy as everyone kicks off new projects, but there has been no day off since the New Year.

Likewise, my Parkinson’s recently lulled me into false hope by being pretty mild for a couple of weeks, only to get worse again this week. Hands shaking on the keyboard and voice muffled in an important client meeting today. Leg stiff and foot cramping on the way home. Constipated. Struggling to focus, in both senses of the word. Desperately tired all day.

It's a similar story with my aspiration to move into medical research in the next few years. I had an idea that, rather than volunteering, I might be able to quit my current job at the end of the 2020 and do lower paid, but still financially viable work for a charity or research group. Initially it sounded promising but then I met with a few different people over the past few weeks, including The Professor, and suddenly I was no longer optimistic about it all.

Whilst I have some useful skills and experience, it’s not so easy to transition from the corporate world. Charities typically run on tight budgets and won’t carve out a role tailored for me. Research teams prefer young, hungry, intellectually sharp people with PhDs, not fifty-year-olds who claim they were good twenty years ago, have Parkinson’s, and still expect a decent salary for working part time. In this endeavour, it seems I am back to plan A: struggle ever more in my current job with the PD millstone round my neck, for three or four more years (if I make it that far without getting fired or breaking down), until I can finally retire and volunteer. Except then my investments took a pounding this week as world markets tanked thanks to the Coronavirus.

I could pretend to be positive, but, as I wrote three years ago, sometimes there are just black hat days and this is one of them.

Right now, Spring is definitely not yet in the air.

Flying first class

Thursday 13 February 2020

Today I am flying Emirates first class from Dubai to London.

It’s awesome. Some say it’s the best first class in the world but I wouldn’t know about that. This is probably the only time in my life I will fly first class on an airline like this.

The experience starts with the chauffeur whisking me smoothly to the airport in his S-class Merc. He drops me off at the separate check-in section without any queues at security, naturally.

I head to the first class lounge, a vast oasis of calm in an otherwise heaving airport, where the staff outnumber the passengers. I elect to have a la carte fine dining: delicious sashimi to start, veal saltimbocca for main, and a fruit and cheese plate to round it off. As expected, the wine is also excellent. I don’t bother with the spa or cigar room, but I do use the sleep area for a while after a glass of 15-year-old Glenfiddich.

Once on board, the beaming stewardess hands me a hefty goodie bag. Bulgari amenities, gourmet snacks galore, pyjamas for the overnight journey, slippers, moleskin notebook and pen.  She offers me a pre-take off drink. I don’t hesitate in my choice: a glass of Dom Perignon 2008 Champagne.

There’s a fresh orchid in my compartment. Enough gadgets for a James Bond movie and more bling than, well, an Emirati 5-star hotel room.  A screen as big as my TV at home, and so the list goes on.

How did I get here?

I’ve done a few business trips to the Middle East and saved up some miles. It turns out that that the Emirates loyalty scheme is not very generous. Surprisingly, BA’s Avios are much better for getting reward flights.

With my working days numbered, and business travel becoming increasingly exhausting, it made sense to use my Emirates points for an upgrade, rather than wait for a reward flight that will likely never come.

So I’m making the most of the absurd luxury while I still can. Things will start changing soon. I will need to cut back further at work, stop the travel, and retire in two or three years with a pension pot that will very much put me at the back of the plane, if indeed I’m on the plane at all.

We will be landing soon. Whilst I enjoy my scrambled eggs and cup of tea, I reflect on the best bit of my journey. 

Taking a morning shower at 41,000 feet. Obviously.

Hope fatigue: will there ever be a cure?

Saturday 1 February 2020

At the start of 2020 there was a flurry of posts on various Parkinson’s forums about all the promising research and clinical trials in progress, not to mention a few puns around “20/20 vision”.

Rather than repeat it all here (and probably get some of it wrong), I would refer you instead to The Science of Parkinson’s take on the topic, The Road Ahead: 2020. It’s a long article so I’ve attempted to summarise the drug trials referenced at the bottom of this post.

Wow. There are a lot of candidate treatments currently being tested, and many threads of more fundamental research also in progress. But we’ve been down this road before.

One thing that Dr Simon Stott alludes to in his post is the idea of “hope fatigue”. Despite the long list of therapies currently in clinical trials, the sobering reality is that the underlying cause of Parkinson’s is not understood, the different types of Parkinson’s are not fully identified or understood and there have been no significant new drugs since the discovery of levodopa and the dopamine agonists in the 1960s. In the last 50 years or so, there have been numerous headlines about promising new medicines that have all come, essentially, to nothing. For long sufferers of the disease, hope fatigue is a very real phenomenon.

Of course, eventually there will be a cure, or at least treatments to improve life with the disease. The human race is too smart, and the collective effort being put into neurodegenerative diseases too great, for us not to figure something out.

The real question is when? Will there be a cure, for example, in my lifetime?

Crystal ball gazing is a hazardous pursuit, but let’s see what the data tells us.

Firstly, let’s look at the amount of Parkinson’s research. A count of research papers on PubMed with the tag “Parkinson’s” reveals that the number of papers published has quadrupled over the last twenty years.

Compared to other neurological conditions, Parkinson’s doesn’t do too badly in terms of the amount of research published. But it is dwarfed by research into conditions like diabetes and the work across different types of cancer or even HIV.

What about funding for research? We would expect this to be correlated with the number of papers published.

After gradual reductions in real terms over recent years of the amount that governments in, for example the UK and the US, have been setting aside for research across all the medical sciences, is on the increase. For example, the United States Congress recently passed its budget for Fiscal Year 2020 which included a $2.6 billion increase for the National Institutes of Health (NIH), bringing the agency’s budget up to $41.46 billion.

However, Parkinson’s only gets a tiny slice of the government research funding pie. More significant is private funding for research. The biggest source for this is the Michael J Fox Foundation. Their annual contribution to Parkinson’s research has increased by 42% over the five years since 2014 (watch out for the slightly misleading scale on the graph). This increase in funding is consistent with the increase in the amount of research output that we saw earlier.

In summary, the amount of research into Parkinson’s is high compared to other neurological conditions and has been consistently growing over recent years, but it is still small compared to many other medical conditions.

Does it deserve more funding? Given the number of people affected, maybe. But in the majority of cases, people can still have a reasonable life for quite a few years with Parkinson’s and it’s a very different story for most types of cancer for example. Or Alzheimer’s for that matter.

What can we learn from other conditions?

AIDS/HIV is essentially resolved from a medical perspective though the antiretroviral drugs used to treat it remain too expensive for many. The total global spend between 2000 and 2015 on the disease was an astonishing $562 billion according to the Institute for Health Metrics and Evaluation (IHME) at the University of Washington. Yes, that’s half a trillion dollars. More than the annual GDP of Thailand with its population of 70 million.

Similarly, research spending on cancer, which has made great progress in the last couple of decades, runs into tens of billions of dollars per year.

The lesson is clear: finding cures for tricky medical conditions requires a lot of funding, way more than Parkinson’s or Alzheimer’s currently receive. We’ll get there in the end but at current levels of investment it will take time.

So, as I gaze very speculatively into my crystal ball, what I see is:

1. An ageing population and more people being diagnosed with Parkinson’s every year
2. Steadily increasing research funding from governments and private organisations, and a corresponding increase in research output, but at an absolute level lower than many other conditions
3. Over the next 10 years, the approval of some drugs that slow progression of the disease for some people
4. Over 10-20 years, an understanding of the underlying cause(s) of some variants, and perhaps treatments that can restore missing neurons, thereby reversing the disease
5. Over 20-40 years, science starts winning the war, systematically understanding the different variations of Parkinson’s, developing reliable screening for risk factors, and finally finding a cure (or set of cures)

Where does that leave hope?

Given these assumptions, I don’t follow every research thread or get excited at every news headline. But it’s not really a case of hope fatigue. For myself I don’t expect to be cured (and would be pleasantly surprised if this did happen). But I have every hope – indeed expectation – that the next generation won’t have to suffer from the disease that James Parkinson first described 203 years ago.



Table of current trials

Target	Drug under development or in clinical trials	Companies/ parties involved
Alpha synuclein immunotherapy (attacking the build up of alpha synuclein using either the brain’s own antibodies or artificial ones)	Prasinezumab	Roche, Prothena Biosciences
	BIIB054	Biogen, SPARC
	MEDI131	AstraZeneca
	Lu AF82422	Lundbeck, Genmab
	BAN0805/ABBV-0805	AbbVie, BioArctic Neuroscience
	AFFITOPE PD01A	AFFiRiS
	UB-312	United Neuroscience
	NPT088	Proclara Biosciences
	NPT520-34	NeuroPore Therapies
	NPT200-11	UCB
	ENT-01	Enterin
	YTX-7739	Yumanity
	Mannitol	Clinicrowd
	Anle138b	MODAG
LRRK2 inhibitors (for people with a PD-inducing mutation in the LRRK2 gene)	DNL-201	Denali Therapeutics
	BIIB094	Biogen, Ionis Pharmaceuticals
PINK1 and PARKIN inhibitors	TBA	Mitokinin
	TBA	Vincere
	iCP-Parkin	Cellivery
GBA therapies	Ambroxol	Cure Parkinson’s Trust, Van Andel Institute
	Venglustat	Sanofi Genzyme
	LTI-291	Lysosomal Therapeutics
	TBA	Prevail Therapeutics
	AVR-RD-02	AVROBIO
	ESB1609	E-scape Bio
	S-181	Surmount Bio
c-Abi and TORC1 inhibitors (boosting the body’s natural autophagy mechanism)	Nilotinib	Georgetown University
	K0706	SPARC
	FB-101	1ST Biotherapeutics, Neuraly
	Radotinib	Il-Yang Pharmaceutical
	IkT-148009	Inhibikase Therapeutic
	RTB101	resTORbio
NLRP3 inhibitors and other anti-inflammatories	Inzomelid	Inflazome
	NT-0167	NodThera
	Azathioprine	Cambridge University
	XPro1595	INmune Bio
	Sargramostim	Parkinson’s Nebraska
GLP-1R agonists (protecting further neurons from dying)	Exenatide
	Lixisenatide
	Liraglutide
	Semaglutide	Novo Nordisk
	NLY01	Neuraly
	PT320	Peptron
Neurotrophic factors (growth hormones for neurons)	GDNF	Cure Parkinson’s Trust, Brain Neurotherapy Bio, Genecode
	CDNF	Herantis
Mitochondria boosters	UDCA	University of Minnesota
	CNM-Au8	Clene Nonomedicine
	Terazosin
	EPI-589	BioElectron
	CuATSM	Collaborative Medicinal Development
	Nicotinamide Riboside
	AMX0035	Amylyx
Statins (for neuroprotection)	Lovastatin
	Simvastatin	PD-STAT
Iron reduction	Defeiprone	Apopharm
	PBT434	Alterity Therapeutics
Plasma infusion	GRF6021	Alkahest
Other neuroprotection	Lingzhi
	Ceftriaxone
	KM-819	Kainos Medicine
	DA-9085	Dong-A ST
	ANAVEX2-73	Anavex
Cell transplantation	N/A	Transeuro
	N/A	International Stem Cell Corporation
	N/A	Center for iPS Cell Research and Application
	N/A	BlueRock Therapeutics
	N/A	Aspen Neuroscience