Reflecting on 2017

Sunday 31 December 2017

It is tempting for me to think of 2017 as a tale of three “ologies”: neurology, ophthalmology and cardiology.

My year was dominated firstly by my Parkinson’s diagnosis, the associated medication and the subsequent journey of discovery; secondly by my double vision problems and the eye surgery I had to fix them; and thirdly by my heart issues in the autumn. I won’t repeat it all here, except to say that happily, two out of these three things have been successfully resolved although of course I still have a long journey ahead with the Parkinson’s.

In spite of all the medical concerns, the year has had many positives. We went on a lovely summer holiday to the US to see the total solar eclipse and had a series of enjoyable short trips: to Paris, to Barcelona, to Stockholm, to Malta, to Venice and, most recently, to Norway (I am writing this from the most northerly point in Europe aboard the Hurtigruten; fingers crossed for a Northern Light show tonight to end the year on a high...).

I got promoted at work. Clara’s parents moved across the road from us. Rosa turned thirteen and, far from being a difficult teen, is growing into a delightful, intelligent and happy young woman.

I also started writing this blog.

At the beginning of the year, seemingly out of nowhere, I felt the urge to start putting miscellaneous thoughts down on paper. Shortly after I started writing, I was diagnosed with Parkinson’s which gave me a natural topic for contemplation.

It was Clara who suggested putting my writings into a blog to share with family and friends, which I started doing a couple of months later. Needless to say, Clara’s support through the year has been boundless.

I still don’t really know what the objective of this blog is, but early on I decided to let two principles guide me: to make the posts relevant (however tenuously) to Parkinson’s Disease; and to avoid simply writing a mundane diary about all the day to day stuff. I have also realised that, because people may find my blog through a search engine and therefore dip in and out, within reason each post needs to stand on its own.

I only studied English at school until the age of 15; after that it was sciences all the way. My previous writing experience is limited to penning a series of short stories about cats for Rosa when she was eight.

You won’t find this blog sprinkled with thought-provoking literary references or enriched with emotive quotations from philosophers or poets. Honestly, I don’t know any. Much to Clara’s embarrassment, I have only read perhaps a few dozen novels in my life and barely any poetry. Instead I live in a world of business, science, technology and mathematics. My mind operates in the realm of facts and objective analysis. At work I write emails, proposals and reports; I build spreadsheets and PowerPoint slides. There is little scope for flowery prose.

So publishing this blog has been a learning experience for me, and at times perhaps a self-indulgent one. It took me a few posts to find my voice. I don’t suppose it is a voice that is to everyone’s taste. But it is my voice, and it speaks unadulterated.

As I introspect, I also begin to appreciate how fascinating the process of writing is.

First an idea will come out of the blue, typically in response to a recent event. Occasionally I have written in real-time as events unfolded, but more normally I stew over the idea for a day or two: I think it through on the way to work or when I am making a cup of tea for example. Then I write the post quickly and in a single sitting. Most of the time the words seem to have a mind of their own and simply flow naturally. Finally, there is the process of editing to improve the language and eradicate as many errors as possible. As well as posting online, I periodically print and send the posts to my mother who seems to enjoy reading them.

I find it surprising quite how many words I have produced in a year. Perhaps 30,000, halfway to a book. There is no timetable and the story very much writes itself. I don’t know how the story is going to end or whether at some point I will simply run out of things to say. But I have thoroughly enjoyed the experience so far and hope that, whilst I am far from a great writer, in some small way I have given a few people something interesting to read.

And so, I will finish the year by saying that, medical woes aside, there was one very unexpected outcome of 2017. I discovered the pleasures of writing and acquainted myself with an altogether different “ology”.

Orthology: “the art of correct grammar and correct use of words.”

I am looking forward to continuing to post next year. In the meantime, I wish whoever is reading this, whatever your story and wherever you are, a very happy – and healthy – 2018!

Addendum: shortly before midnight

Virtually all of the passengers and much of the crew of the Hurtigruten are out on the back deck. The joy and excitement are palpable as, wide-eyed, they stare upwards to witness one of nature's most sublime spectacles.

High above us, waves of charged particles that have travelled 150 million kilometres from the sun are being funnelled by the Earth’s magnetic field towards the North Pole. Occasionally one of the particles smashes into an oxygen atom in the atmosphere and excites its electrons. The oxygen glows green as it releases its energy.

Ethereal and majestic, the Northern Lights dance in the night overhead, creating an endless variety of forms and contortions.

Surely a good omen for 2018?

Going public

Tuesday 19 December 2017

I used to be nervous that people at work could tell there was something wrong with me, and cautious about revealing the truth that I have Parkinson’s.

As the end of the year approaches, I am now learning to get over these psychological barriers.

Actually, for the most part, people don’t notice that my right arm behaves strangely, or that I sometimes tune in and out of meetings, or that my speech occasionally gets slurred.  If they do notice, they probably just put it down to my individuality. We live in a diverse world and thankfully most people at work are very inclusive and tolerant.

I’ve now told quite a few people I work with about my “condition”, including a couple of my clients. Each time it gets a little easier.

Whilst I am not surprised by anything anyone says, it’s worth noting that the correct response to being told that someone you know has an incurable progressive disease is along the lines of:

“I’m very sorry to hear that. If there’s anything I can do to help, just let me know.”

To which I then say:

“Thank you, that’s very kind of you. There’s nothing you can do, but it helps to be aware that I do get quite fatigued from time to time because of the disease.”

The most irritating response goes something like this:

“Well don’t worry about it. I hear there’s lots of great research and there will be a cure in the next couple of years.”

To which I reply:

“What the fuck do you know about it? This disease has been known about for 200 years and there is still no cure and no way of stopping its progression. I struggle every day with it. I’ve met people my age who are in a really bad way only two years after being diagnosed and I’ve heard of cases of people dying within five years of diagnosis. And most of the promising drugs that work in the lab turn out not to work on humans.”  And so on.

Actually, I don’t say that, I hold my tongue and thank them for their opinion. I realise they mean well, but you get my point.

A derivative of this that is particularly annoying is well-meaning friends or relatives at Parkinson’s meetings who spout on enthusiastically about how to keep positive and how to live with the disease. I tend to ignore them and turn and talk to the people who are actually living with the disease. A bit rude I know, given that the sentiment is meant kindly.

Fortunately, in a work context I have not yet had this type of reaction.

In fact, bit by bit I am also starting to get involved in diversity initiatives with my employer. 

I’ve offered my services to an initiative to raise awareness of flexible working (more on this later), and am now getting invited to meetings of my firm’s disability network. I’ve flagged my willingness to tell my story in diversity training so that it may be of benefit to others. And I’ve ticked the box on the HR system that says “Disability” so I am now officially in a minority group.

I don’t now how comfortable I will be with my situation being public knowledge across the office. I don’t want or expect sympathy or special privileges, and I don’t mean to unduly draw attention to myself.

But I’ve lit the blue touch paper now and there is no going back. I don’t know where this will all lead, but I hope that “going public” will only be a good thing. 

A family affair, part 3: 100,000 genomes

Tuesday 5 December 2017

Yesterday I had blood taken to sequence my entire genome.

All 23 chromosomes.

All 20,000 genes.

All 3.2 billion nucleotide base pairs.

My entire DNA, the blueprint of what makes me unique, will be decoded and analysed.

I went for a routine check-up with The Professor and, given that my previous genetic tests, targeted at the most common mutations known to be associated with Parkinson’s, had come back negative, he put me forward for the 100,000 genomes project. 

Conveniently they were able to fit me in the same afternoon, and a helpful research assistant walked me through the project, including the inevitable questionnaire and consent form. It only took about half an hour.

The 100,000 genomes project is a flagship medical research initiative that was launched in 2012 by then Prime Minister David Cameron. It aims to build a database of around 75,000 people (for technical reasons some people are sequenced multiple times, hence 100,000 genomes) with rare diseases and certain cancers, or their close relatives. The database will then be used to identify genetic variations linked to the diseases and cancers.  They are up to over 40,000 genomes so far. 

The clever part is that, because this is done for NHS patients, they have (anonymised) access to all your medical records, both in the past and in the future, even after you die. So the project is also able to identify genetic links to things like reactions to medications, and correlations between seemingly unrelated conditions. 

I qualified for the project both because my Parkinson’s is familial and because it is young onset. I also referred my mother for testing and spoke to her about it later in the day.

Needless to say, genetics is a fascinating topic. As well as the science, there are the tricky ethical considerations. I will no doubt wax lyrical about it all another time, but for now I will just say I was pleased to take another step forward in understanding my disease.

It wasn’t all good news, however.

The Professor told me that it could take up to two years to get my results back, not because it takes that long to do the sequencing, but because of the specialist analysis that needs to be done of any interesting genetic anomalies.

As I’ve said before, the NHS is a wonderful institution - as long as you’re not in a hurry.

The mystery of sleep

Saturday 2 December 2017

Warning: this post goes on a bit and may make you feel drowsy; if affected, make sure you are sitting comfortably...

We spend about a third of our lives doing it. We would die without it. It is believed that all mammals, birds, reptiles and fish, and many invertebrate animals do it.

Sleep is thought to be essential for the well-being of any living creature with a brain. It is so important that a number of species from blackbirds to dolphins are known to alternate sleep on each side of the brain, so that they can keep an eye out for predators at all times. This is called unihemispheric sleep. 

Yet sleep is one of the greatest mysteries in life: nobody knows why humans, or any other creatures, need to sleep.

The biggest challenge I currently have with Parkinson’s is the fatigue and this is closely related to my sleep being very disturbed. Although I am typically in bed for nine hours each night, I usually sleep for no more than three hours at a time and my slumber is fragmented after the first sleep cycle. 

I simply don’t get enough good quality sleep and I’m knackered a lot of the time as a result.

Sleep problems are very common in people with Parkinson’s and there appears to be no simple solution. Medications, like a dose of melatonin, can help some people in the short term but are not recommended for long term use.  

So-called sleep hygiene is often advised. This is stuff like building an association between the bedroom and sleep (for example avoiding reading in bed) and getting into a pre-bedtime routine. In my case, this misses the point. I have no problem whatsoever getting to sleep; staying asleep is the issue, and I frequently lie awake in bed for long spells between 3am and 6am. I guess this is simply because the chemical balance in my brain is messed up, with either too much dopamine or too little dopamine causing me to be too alert to stay asleep for long periods.

But why do we even need sleep in the first place?

I have my own ideas, unsubstantiated and no doubt naïve, and they go like this…

The first thing to understand is that there are two types of sleep: Rapid Eye Movement or “REM” sleep and non-REM or “NREM” sleep. REM sleep is the sleep where we do most of our dreaming and NREM sleep is deep sleep. They show completely different patterns of brain activity and arguably are as distinct from each other as from being awake. You can tell the difference when you are woken up suddenly. When awoken from REM sleep you quickly adjust, but with NREM sleep you are groggy and disorientated for a while.

The big clue for me is that NREM sleep seems to be universal in pretty much all organisms with a nervous system whereas REM sleep is confined mainly to birds and mammals. I think, therefore, that NREM and REM sleep have very different purposes.  

My preferred theory is that NREM sleep is associated with the removal of neurotoxins built up from the daily activity of nerve cells whereas REM sleep occurs when long term memories are being formed.

To use an analogy with a computer, NREM sleep is like switching the processor off for a while to let it cool down, and REM sleep is a little bit like running a defragmentation tool to tidy up storage on the machine when the disk space is getting full (on an older PC; these days computers come with so much disk that they rarely need to be defragmented).

In terms of the neurotoxin removal, this is a well-established theory. It is thought that free radicals (certain highly reactive chemicals) accumulate during normal neural activity and these get cleared away during sleep when the neural activity is suppressed. This is by no means the only viable theory in town. For example there is the idea that sleep allows glycogen supplies (which fuel the neurons in the brain) to build up again after being depleted when awake.

As for the memory formation, the idea is that the brain needs to enter a special state for long term memories to be hard-wired into neural connections; dreaming is a side effect of watching all these memories being processed.

I often dream about recent events, all jumbled up. It's as if there is a sentient observer in the brain trying to make sense of a lot of random stimuli and stitching them together into a story. Using my computer analogy, it's like watching all the file names flash up on screen as the defragmentation tool scans through the disk and trying to interpret them into something meaningful, when in fact they are just a random replay of stuff stored on the machine.

There is quite a lot of evidence that learning is impacted by the quantity of sleep and it is well known that children and teenagers need more sleep than adults.  Moreover, there is growing evidence that new memories of events and facts first form in a central region of the brain called the hippocampus and from there get transferred to the rest of the brain. In Alzheimer’s disease, often the hippocampus is affected first, impacting short-term memory and from there the disease spreads to the rest of the brain, gradually degrading long term memories as well.

I have grossly over-simplified matters and am probably incorrect in a number of areas. For example, there are three stages of NREM sleep in humans, all with slightly different characteristics. There are other types of memory like knowing how to ride a bike: these “procedural” memories that control motor skills are in the domain of the cerebellum. And there are other effects of sleep like letting the body rest and repair itself. 

The truth is that nobody knows for sure why we all need to sleep, but I hope the essence of my theory is not too far off the mark.

The regulation of sleep is a whole other story, though somewhat better understood. It is linked to the concept of circadian rhythms, following the clock of nature, so that we sleep during the night when it is dark, and are stimulated to be awake by natural daylight. There are various chemical messengers involved, like melatonin, but, again, the jigsaw has yet to be fully assembled.

So, following my argument through to its conclusion…

My natural sleep rhythms are disrupted by my Parkinson’s due to the imbalance of dopamine in my brain; which means I don’t get quite enough sleep; which causes me to be less alert during the day (too many toxins) and struggle with memory (I sometimes forget people’s names and recent conversations, perhaps because they haven’t transferred effectively to my long-term memory).

My situation is not the same as everyone else who has sleep problems with Parkinson’s, but it is common enough.

I have asked a number of medical professionals including The Professor and the Parkinson's Nurse for advice but they haven't been able to offer anything useful.

In fact, the most effective remedy I have found for my own issues is the afternoon power nap. Twenty or thirty minutes in la-la land during the early afternoon works wonders for both my mind and my body. Afterwards I feel energised and mentally sharp again. If only there was somewhere to snooze in the office...

I suppose this is not unlike men and women who sail around the world single-handed. Ellen Macarthur slept for no more than twenty minutes at a time during her 71-day world record solo circumnavigation of the world in 2005.

Maybe there’s another clue here somewhere.  If we could understand why power naps are so effective, perhaps we could better understand the nature of sleep itself.