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.

The in-laws

Saturday 25 November

I last saw my mother-in-law about a year ago.

"I haven't met you before,” she remarked as I walked through the door.

"Yes you have," I offered politely. "I'm Clara's husband."

She looked a little embarrassed but also seemed pleased to realise that her youngest daughter was married, and periodically smiled at me for the remainder of my visit.

Her Alzheimer's was already reasonably far progressed at that time but sadly has moved on to an even more advanced stage since then.

I have been spared the ordeal of watching someone gradually deteriorate both physically and mentally but Clara and her stoic father have tackled it head on. Clara has been nothing short of legendary in the support of her parents – as well as dealing with the emotional side, she has organised everything from carers, hospital beds and hoists to weekly grocery deliveries, roof repairs and plumbing.

Throughout the year, she has faithfully visited them at least fortnightly, sometimes twice in one week, each time an eight-hour round trip to the house where they have lived for the past 30 years.

Until now.

For Clara has arranged for her parents, and their live-in carer, to spend their remaining years in a flat a few doors down the road from us. There are still a lot of logistics to sort out but the aim is to complete the move in time for Christmas.

Clara’s mum and I both suffer from incurable neurodegenerative diseases. Thankfully mine does not (at least not yet) involve any dementia. Once she moves down the road, she will struggle to recognise her own daughter, let alone her son-in-law. For myself, as far as I can tell, I still have all my memories – and marbles – intact. 

After the move happens, Clara’s mum is likely too far gone to even notice the difference, but the hope is that for Clara’s dad the move south will give him a new lease of life. Clara and I should be able to see him regularly and take him to the local park, or a nearby art gallery, or the occasional meal out.

The situation reminds me that more important than myself are those around me. The focus now is on making Clara’s dad’s remaining years as joyful as possible and I am looking forward to being part of that.

Similarly, I am starting to think ahead about how I can avoid my later years becoming all about me; instead I want them to be happy ones for Clara, Rosa and others.

Mini Marathon

Friday 3 November 2017

A year ago this weekend, I ran the New York marathon, two months before I was diagnosed with Parkinson’s.

This was the culmination of a target I had set myself a decade earlier to complete all six marathon majors.  Having run London in 1998 and Chicago in 2006 I had narrowly made the qualifying time for the prestigious Boston marathon, which I completed in 2008.  I followed this with runs in Berlin (2013), Tokyo (February 2017) and finally New York (November 2017).

My rush to complete the series last year was strangely prescient. I think I subconsciously knew my body was in rapid decline and was spurred on to get the remaining physical challenges in my life out of the way.

In truth, I was not a very good marathon runner.  My best time was 3:12 in Chicago, decent by most standards, but I should have been comfortably a sub 3-hour runner in my day as I had a best half marathon time of 1:20 and I was consistently a 35/36-minute 10K runner.

I really struggled to make the distance in New York, completing the race in 4:18 which was way below what my training had suggested and over half an hour slower than in Tokyo only a few months earlier.  The crowds, particularly in the last 3 miles around Central Park, were incredible, the loudest of any of my races.  But even they couldn’t lift me from my painful plod to the finish line.

During the previous two years, I’d had a string of injury problems: mainly in my foot, but I also had problems with my hip and my Achilles tendon.  Always on the right-hand side.  I went for a number of sports massage and physio sessions but the problems kept recurring. 

Of course, now I know why.

It’s odd to think that I was running a marathon with Parkinson’s.  Ironically, I had been tempted to raise money for Parkinson’s as my mother had been recently diagnosed at the time, put I plumped instead for Alzheimer’s Research in support of my mother-in-law, bringing in over £3,000 thanks to the generosity of friends and colleagues.

Despite my struggles on the streets of Queens, the Bronx and Manhattan, I was proud to have completed my odyssey and proud to have raised a decent chunk of money for a good cause.

I am now back to running twice a week (and I try to use the exercise bike at other times). The Professor and the Parkinson’s Nurse have both stressed to me the importance of exercise. Although you will find many other anecdotes online, I’m told that exercise is the only thing known for sure to slow progression of the disease. 

These days I can only manage 5K, but in some ways running 5K reminds me of running a marathon. During a marathon, you go through phases and have good and bad patches. When I run my 5K round the local park, it’s a similar feeling.

The first two kilometres are relatively smooth and steady as I am energised and my legs feel good.  In the third kilometre, I start to struggle a little with a tightness in my chest and a lame feeling in my right leg. The gentle hill in the middle of the park feels much steeper than it actually is. In the fourth kilometre, my right foot starts to trouble me and my breathing is heavy but I push on. And in the final kilometre I force myself to the finish, but it is now that I also have to be very careful.  My right leg is sluggish and I can easily twist my ankle on a kerb or trip on an uneven pavement. 

I have completed my mini marathon and treat myself to a bath and a snack.

On a good day, I can just about manage 25 minutes, but more commonly I run 26 or 27 minutes.  Again, to some people this might sound quite reasonable, but for me it is a world away from my 5K best of a little over 16 minutes.

Occasionally I can’t manage a full 5K and I just run a 3K loop close to home. Fortunately, I have come to terms with my new limitations and am no longer disappointed at being overtaken by faster runners.

Although I now get minimal pleasure during my runs, I feel better for them afterwards and I know my efforts each week are good for me, both physically and psychologically.

I make a promise to myself to keep running, whatever the pace and whatever the distance, for as long as I can still put one foot in front of the other.

Professor P

Wednesday 25 October 2017

Professor P, the cardiologist, was jolly from the outset, enthusiastically shaking my hand and asking me how I had been as we walked to his consultation room.

I took this as a positive sign and, sure enough, he confirmed that my cardiac MRI showed that there were no problems at all with my heart. This reinforced the results from the X-rays, the ultrasound and the angiogram.

So the only possible explanation for my recent heart issues is the Parkinson's medication. I had reduced this a few weeks back and the symptoms have since steadily subsided.

Professor P seemed too young to be a professor, so presumably he is highly regarded in his field. Certainly I was impressed by his manner as much as by his medical knowledge. He seemed to rapidly build a rapport with me and instill an almost infectious positivity.

"It must be nice to be able to tell a patient they have the all clear," I suggested.

"Cardiology isn't like some other areas of medicine," he replied. "We can fix most things and the worst I have to do is tell someone they need a heart bypass."

"Well I didn't enjoy being on the acute ward."

"Neither did I," he said, smiling.

"So if I feel pressure in my chest again for example when I go for a run, is it safe to push through it?"

"Yes, it might feel strange but it will be fine. There is nothing wrong with your heart and you don't need any more follow ups. You should focus your energy on dealing with the Parkinson's."

I thanked him as I left and once again was filled with admiration for the medical profession. I almost felt sad that I wouldn't be seeing him again.

When I got home later in the day I went out for a 5K run.

As the evening darkness drew in, there was still some tightness in my chest but I pressed on.

And afterwards I felt just fine.

The whole cardiac episode was an unwelcome distraction. As Professor P advised, just having Parkinson's is enough for anyone to deal with.

The road to diagnosis

Saturday 14 October 2017

About a year ago I went for a routine GP check-up. This would set in motion a chain of events that would change the rest of my life and impact the lives of those closest to me.

However, like several other people I have spoken to who have Parkinson’s, the story started about two years earlier, back in the autumn of 2014 when I had just turned 45.

It was then that I first noticed two things at about the same time: firstly, I was having some slight difficulty with my right hand; and secondly, I started to develop vision problems.

I assumed the problems typing and writing, and the associated discomfort, were Repetitive Strain Injury (RSI) from decades of using a keyboard and mouse.  I soldiered on for a while but gradually things got worse so I went to see my GP.  She agreed that RSI was the most likely explanation, and suggested I get an ergonomic mouse.  This I duly did (buying my own one as navigating approvals at work for a £20 piece of equipment proved too complicated) and for a while things improved.

Gradually the symptoms returned and by this time I was also having trouble fastening buttons in the morning and with similar tasks requiring fine motor skills.  I switched to using the mouse with my left hand and, again, for a while, things seemed to improve. Then the symptoms worsened, this time to the point where my writing was micrographic and largely illegible, even to me.

It was a similar progression with my eyes.  At first, I thought I had normal degradation of eyesight consistent with my age.  I went for a routine eye test and started wearing both reading glasses and mild prescription distance glasses.

But I struggled more and more to see things across the other side of the room, either with or without my glasses, making daily life progressively more difficult.  I went for several eye tests and eventually the diplopia (double vision) problem was identified along with a referral to an ophthalmologist which would be followed by a visit to an orthoptist (a specialist in things like squint and eye movement disorders).

I had battled for fully two years with both of these problems which, on face value, seemed unrelated.  In the second half of 2016, I also started to experience other issues like frequent constipation and sleep difficulties, again seemingly unrelated.

So when I had a general GP check-up through my employer’s private medical insurance it was a great opportunity to take some time to explain all my issues.

It felt somewhat lonely in the surgery; just me and the softly spoken General Practitioner in a plain, almost austere, consultation room.  There was little background noise as she patiently listened to all my concerns and did her routine tests.

I had no inkling at the time but, now that I reflect upon that cold and misty autumn morning, I think she had a strong suspicion what the problem was and duly gave me referrals to a neurologist and cardiologist in addition to a referral I already had for my eyes.  She probably realised how much my life was about to change but I suppose that, rather than speculate, she preferred to leave me in the hands of the specialists.

I was working abroad for most of 2016 so it would be a further three months before I would get around to following up on all the referrals, in January 2017.  From barely having seen the inside of a doctor’s surgery, let alone a hospital, in my life up to that point, at the start of this year I would rapidly become all too familiar with a new, sometimes wondrous, world of clinical medicine.

My path to Parkinson’s diagnosis is not uncommon, though some people have taken even longer to get to the correct conclusion. This is partly because many GPs don’t have enough experience in young onset Parkinson’s - hardly surprising given its frequency and nebulous nature.

When I think back to a year ago, I realise what a relief it is to have finally been correctly diagnosed.  A diagnosis that immediately explained all sorts of disparate ailments which I had collectively put down to middle age.

I still have day-to-day struggles. In particular, I am still working through further tests following my somewhat scary cardiac experience (see previous posts Heart failure, Heart failure part 2 and Living and dying). Thankfully the symptoms are settling down now after reducing the daily dose of my dopamine agonist.

But as I write this text, it dawns on me that, not only am I touch typing fluently, I am doing so without wearing any glasses at all.

I travelled the road to diagnosis and now, having on the whole received good medical attention, including some very successful eye surgery, I am in a much better place than where I started a year ago, on that grey and gloomy October morning.

However, despite all that has happened in the past 12 months, despite all the ups and all the downs, I realise that the real journey is only just beginning.

Joining the dots

Monday 9 October 2017

This morning I am on a train speeding north to see a client for the day in Manchester.  Back in normal work mode, the only obvious reminder of the dramatic events of last week is the bruising I have in my wrist where a catheter was inserted to inspect my heart function.

Since my two day stay in hospital I reduced my medication and am now experiencing only mild symptoms of the heart problems.  The flip side is that I get a little more Parkinson's symptoms.

Clara and I spent Saturday night in Paris on a long-planned weekend away.  We are determined to carry on living our lives to the full in spite of the respective issues that we are dealing with.

A lot can happen in a week.

But I'm not out of the woods yet.  I still haven't got to the bottom of the cardiac problems and they are still reminding me occasionally that they haven't gone away.  To complicate matters I am now dealing with four medics: my neurologist, The Professor; the cardiologist (let's call him Professor P); the Parkinson's nurse and my GP surgery.

I will attempt to join the dots across all these people as well as across my symptoms and medication.

Living with Parkinson's certainly keeps me busy.

Living and dying

Wednesday 4 October 2017

I often admire medical professionals.  What they do every day is so much more worthy than what I do for a living.

They also hold an awesome power in their hands and I'm not sure I would want the responsibility that comes with it.

I just overheard a conversation between the weak, bed-ridden man lying in next to me and his consultant.

"Is this what you want?" the doctor asked.

"What do you mean?" was the frail, husky response.

"For us to keep resuscitating you. Some people don't want that and would prefer to be left alone. Do you want me to keep helping you to breathe or to let you be?"

"I'm not ready to die," came the emotional retort.

"So you have more living to do?

"Yes, there are places I still want to see."

"Then that's absolutely fine. I just wanted to check because doctors don't normally ask and it's not always what the patient wants."

"Do you still think I have living to do?"

 "Yes. Of course you do... "

But that was at best optimistic and at worst a white lie.  Still I admired the doctor enormously for having the balls to ask the ultimate question.

My time for that question is still far away. The coronary angiography procedure I am to have shortly, whereby a catheter will be inserted into my heart via my arm or leg to determine if I have coronary heart disease, seems trivial by comparison. If I have the disease it can be mitigated. If I don't have it, my Parkinson's medication is likely to be at fault and I can change that.

I still have a lot of living left to do, and that's no white lie.

Addendum - later that afternoon 

So the coronary angiography was about the weirdest experience I have ever had. Not at all painful beyond the initial pin prick, but a strange feeling to have a tube pushed up my arm and into my heart, followed by all sorts of chemicals being sprayed into my body. I watched on the screen as the blood flowed through my arteries and my heart pumped. I had a good chat with the doctor as he went through the procedure - it turned out we both went to the same university and had a few other things in common.

The good news is that my arteries are squeaky clean and I don't have heart disease. 

The bad news is they don't know what is wrong and my ECG is incompatible with what they saw in the angiogram. I will be discharged in the morning but still need to have a cardiac MRI scan at a later date.

From the research I have done, I'm pretty sure this is all down to a rare side effect of my Parkinson’s meds which will settle down when I switch to something else. I started reducing my dose and already feel better for it. Now I just need to convince the various doctors and professors I have encountered recently about my theory.

Not surprisingly, despite their many great qualities, medical professionals are far from perfect at getting a diagnosis right first time.

Heart failure, part 2

Tuesday 3 October 2017

The nurses and doctors are chattering away seemingly oblivious to me lying on the bed with my body covered in electrodes.  

They told me that I will be strapped to the heart monitor for observation for the next two hours. 

I got myself to Accident & Emergency following gradually increasing chest tightness throughout the afternoon at work. There is something wrong with my heart - the ECG is showing up various anomalies - but they don't know what yet.

The staff are courteous and professional as always but they are not cardiac specialists. 

I need to stop writing now as my IV has arrived - something about a blood test for a heart attack....

Addendum - later in the evening.

After five hours, several blood tests, a chest X-ray, some tablets I can't remember the name of, and a change of shift for the staff, they are sending me home.  

The discomfort in my heart has subsided now but I will need to have more tests. Almost certainly it will be something to do with my medication, which will now need to be adjusted, despite the confident words of The Professor.

Seems like my Parkinson's is still very much in charge...

Addendum - 1am on Wednesday

So I spoke too soon. They are keeping me in overnight for a CT scan and possibly a slightly scary coronary angiogram in the morning. The cardiologist finally arrived and gave a different opinion from the duty doctor - a possible blocked artery, though nothing showed up on his ultrasound, hence the further tests.

They are looking for a bed for me right now. To be honest I will be glad to get out of the emergency ward. Listening to all the late night screams in the neighbouring cubicles is quite unpleasant.  Though the attention surrounding the major trauma patients reminds me that I still have it pretty good as I sit quietly typing this on my iPhone...

Addendum - 5am on Wednesday 

I am on an "acute" ward, one with constant supervision.  I am strapped to a heart monitor all night as the tightness in my chest ebbs then flows again.

I look at the old man next to me, frail and diminutive, more dead than alive, sucking irregularly on his oxygen mask and occasionally moaning. At the end of his life in a decrepit state I wonder what kind of great and good man he was in his prime.  How far he must have come.

The man opposite, perhaps in his sixties causes a fuss throughout the night as he keeps trying to get out of bed, to the annoyance of the nurses. He too saps oxygen from a mask, his lungs spluttering as he does so. Although he is irritating I empathise with his desire to escape.

How on earth did I get to this place?  And how is any of this fair on the wonderful Clara?

I am tempted to start questioning how I deserve this. I stop myself. 

Fuck all of it. I will get through this. And the next challenge. And the ones after that.

Check-up

Thursday 28 September 2017

Earlier this week I had an appointment with The Professor.

It felt like a long time since the last appointment, and it was: almost six months.  A lot has happened in that period but I suspect check-ups every six months or so will become the norm from now on.

The Professor was half an hour late and seemingly in a hurry to make up time.  He rattled through the routine checks on my movement and I told me I was doing well on my medication.  He was amused about my Candy Crush addiction, though thankfully, having reached level 1,000 (which starts with a cool "M" formation of green candies in case you're interested) I am finally bored of it and have largely stopped play.

On the more important question of my possible heart failure, he agreed the symptoms were most likely due to the pramipexole but he was not overly concerned. He told me he had come across cases of tightness in the chest which had settled down. So we agreed that I should continue with my current dosage and drop down a level if it didn't improve within a week or two. Nevertheless he recommended following through with ECGs and so on just in case.

Although he came across as almost dismissive, I found it comforting to hear from the professional. If he's not worried then I feel I have no need to worry either.

I reminded him about my genetic quest and he confirmed that the initial testing he had done corroborated the negative result on the LRRK2 gene. He said he would follow up with further tests on other genes using the blood sample that I had already provided, and let me know the results. So I may not need to fork out for private genetic testing after all.

Finally we talked a little about the future. Fatigue aside, I should still have many active years ahead and he talked about me potentially participating in clinical trials in a year or two.  Once again, he painted a bright picture of many drugs under development, as well as more invasive treatments like stem cell therapy, that are likely to result in a breakthrough in a timeframe that is meaningful to me.

Let's hope he's right. The clock is ticking - for both my mother and me - and I imagine the next six months will fly by in no time at all.

Heart failure

Sunday 24 September 2017

After the gloominess of my last two posts, perhaps brought on by the autumnal weather, I was in the mood to write something positive.

Despite the ups and downs of everyday life, I was starting to feel like I was winning.  Take control of Parkinson's, don't let Parkinson's control you, so I have heard people say on some of the online forums.

So it is annoying that I have started to develop symptoms over the last 2-3 weeks that are consistent with heart failure.

First the good news: heart failure is not the same as a heart attack. A heart attack is when you have pain in your chest, your heart can stop working and you can die.

Heart failure is when your heart has weakened and has to work harder to do its job.  Some of the symptoms which I have felt coming on gradually over recent weeks are a tightness in the chest, shortness of breath (especially when exercising), fatigue and palpitations.  I had my first significant palpitation when I was sitting in a meeting: a very rapid pulsation on the top right of my chest that lasted a minute or two. I could feel it with my hand. PFS at the time, though I am learning to take these things in my stride now.

I did some research and discovered cardiac failure is a rare side effect of my dopamine agonist, pramipexole.  Medical opinion is not conclusive on the subject but there seems to be growing evidence of a link, and it seems that the symptoms subside when the medication is stopped.

I went to see a GP at my local surgery this week and, although she referred me for a blood test and an ECG, I think she was of the same view that this was most likely due to my Parkinson's medication.  The simple reason is that nine months ago I had comprehensive set of cardiac tests that showed essentially nothing, and the only thing that has changed in the last 6 weeks is that I upped my dose of pramipexole by 50%.

By coincidence I am due to see The Professor tomorrow so I will discuss all of this with him along with my genetic testing results. I guess there are two possible outcomes:

(a) I stop the medication and move onto something else;

(b) I keep going, keep a close eye on things, and hope that the symptoms subside.

As I write I can feel a tightness on the top left of my chest and a slight gurgling of something inside. Relatively minor, and I remain upbeat.

But enough to remind me that, right now, my Parkinson's is definitely controlling me.