From Marathon to 5K

Sunday 26 February 2017

Today is a black hat day.

I will try to stay positive but I’m sure there will be many other days like today in the years ahead.

I was feeling grumpy this morning after having a headache most of the night.  I also feel nauseous again.  Given that I am scheduled to be on four times my current dose of pramipexole in a couple of weeks’ time, this is a little worrying.

I went for a 5K run around the park this morning.  It was a thoroughly unpleasant experience.  My left leg still felt strong and true but I felt like I was dragging a lame right leg around.  The overall pace was a plod, not unlike my pace at the end of a Marathon. And there was a complete lack of enjoyment, despite the fresh air, the happy families taking their Sunday walks in the park and even a little winter sunshine.

It has been like this on the last two or three runs I have done but today it seemed worse, despite now being on medication.  Previously a meticulous recorder of all my training runs, I now simply write in my log: “Gentle run once per week.” I could claim this is because the time is not important on a gentle run, but the truth is I am too embarrassed to see the minutes per kilometre.

For non-runners this might not seem like a big deal.  But I was a keen runner for over 30 years, competing in numerous track events, cross country races, road runs and half and full Marathons in that time.  I used to love the feeling of being “in the zone” on a training run as the endorphins washed through my body, not the mention the benefits of being outdoors and the general fitness.   Running was my thing, my one major hobby, the only extra-curricular activity I was moderately good at.

Granted I have not been running much in the last three months, though I have been on my exercise bike at least twice per week.  But the fact remains that I ran the New York Marathon in November and I think now I would struggle to complete 10K.  Of course I now know that I ran that day with Parkinson’s, which explains the terrible finishing time.  Nevertheless, the precipitous decline in my running performance comes as a shock.

I am uncertain whether I will continue running at all, let alone compete in the Vitality London 10K which I have signed up for in May.  Why bother doing something I no longer enjoy?

I also have a Monday morning of client meetings to look forward to, and an afternoon of more back to back meetings in the office.  I wonder: will I feel tired and sick all day?  Again.

I remind myself I have much to be happy about but today it doesn’t wash.

Definitely a black hat day.

Little white pill

Saturday 25 February 2017

On Tuesday this week I swallowed a small white pill with my breakfast.  An act that was simultaneously mundane, momentous and remarkable.

Mundane because it was just like popping an aspirin.

Momentous for me personally because it marked the start of the rest of my life spent relying daily on medical science.

And remarkable because of what the innocuous small tablet does.

Thanks to Wikipedia I understand that Parkinson’s is caused by the death of cells in a small, presumably primitive, region deep in the brain called the substantia nigra.  Nobody knows why the 400,000 or so cells start getting overrun by unwanted blobs of protein called Lewy bodies, or how to stop their inevitable depletion, but what science does know is that the dopamine manufactured by these cells gets sent to the striatum from where it gets sent to other areas of the brain via a series of dopamine pathways.

The dopamine thus supplied is used to control a number of functions, most notably motor control (hence the tremor and mobility problems with Parkinson’s and in my case double vision problems), the digestive system (hence my constipation), the olfactory system (hence my loss of smell), and the pleasure systems of the brain (hence my recent lack of enjoyment exercising, despite having been a runner for many years).

The remarkable thing is that these symptoms can be substantially controlled for several years by relatively simple chemicals that can simply be swallowed.

Dopamine itself can’t be taken because it is stopped by the blood-brain barrier, a membrane surrounding the brain that stops neurotoxins getting in.  So the normal treatment is with a chemical called levodopa, which can cross the blood-brain barrier and is converted into dopamine by the cells in the substantia nigra.  My mother has been taking levodopa since she was diagnosed last year, and has responded well.  Levodopa also comes naturally in broad beans and cephalopod (squid and octopus) ink but in that form usually gets broken down by the liver before it can get to the brain.

The only problem with levodopa treatment is that its efficacy fades after a few years as the dopamine producing cells continue dying, and unpleasant side effects start to take over.  For an older person with Parkinson’s this doesn’t matter so much but for someone like myself with decades to go, a different treatment is needed.

Dr T prescribed a dopamine agonist for me.  This is a sort of artificial dopamine that locks onto the receptors in the nervous system, tricking them into thinking they have been triggered by the real thing.  The effect is somewhat similar to levodopa: the brain behaves as if it has enough dopamine to control motor function, but again, the drugs don’t work forever.

I had wanted to wait until I saw the professor before starting treatment; I have an appointment with him next week.  However, my symptoms were getting too difficult to manage with at work, most significantly feeling shattered every day due to disturbed sleep, and I felt I had to start taking something.

There have been some side effects.  I sometimes feel nauseous and light-headed and I get the occasional headache.  Paradoxically the medicine makes me drowsy, though the better quality of sleep at night means I am able to now function better at work.  Clara and I are both worried about other potential side-effects, namely over-excitation of areas of my brain responsible for “reward” behaviour.  This could lead to gambling addiction (bankrupting the household finances…) and hypersexuality (chasing young girls around the office…), but thankfully there are no signs of either so far!

Right now I am not sure how I feel about the pramipexole tablets that, despite being generic versions manufactured in Slovenia, cost me £300 for eight weeks’ supply.  They have already started to improve my quality of life, but I also read on Wikipedia about the nasty effects of Dopamine Agonist Withdrawal Syndrome, which can even result in the desire for suicide…  It’s not dissimilar, I imagine, to being a cocaine addict, or worse.

So, for now I am doing well but, in time, I may come to resent my dependency on the little white pills…

Living in an odourless world

Sunday 11 February 2017

About a month ago I lost my sense of smell.

Of course, this is one of the classic early symptoms of Parkinson’s.

I can no longer smell flowers in the house and will no longer be able to enjoy the aroma of spring.  When I hug Clara after coming home from work I am no longer greeted by the pleasant scent of her perfume (j’adore).   I can no longer detect the smell of chicken roasting in the oven.  Or of bacon sizzling in the frying pan.  Or Marmite on toast.  Or fresh fruit.  Or a glass of wine.  There is no point in buying expensive scented candles.

There are more prosaic consequences too.  I can’t tell when the milk is off – in fact this morning I put milk in my tea that was two days past its sell by date without realising.  It seemed to taste fine but I can’t be sure.  I can’t tell if I have BO and I can’t smell the deodorant I put on in the mornings. And I won’t be able to tell if the gas is leaking.

There are some advantages: work colleagues with bad breath, smelly public toilets, emptying the bins?  Not a problem.

I imagine olfaction is one of the more primitive functions in the brain, but also one of the first to be let go when the brain is starved of the dopamine it needs to function: something to discuss with the professor perhaps.  I am still waiting for an appointment time to come through before I start my medication.

More difficult to deal with than the loss of olfaction are some of the other early symptoms of the disease.  Every night I wake up after every sleep cycle: typically at midnight, at 2am, 3am, 4am and so on.  Often I am uncomfortable with constipation in the night despite eating a healthy diet with the occasional dose of mild laxative.  It’s a particular type of constipation (I think it’s called gastroparesis) where the waste seems to sit in the middle of my lower intestine and not move – because my brain is not sending messages to the muscles in my gut.  The upshot of all this is frequently being exhausted at work due to lack of sleep.  It reminds me of the sleep deprivation with a new born baby, though thankfully I get to catch up at the weekends.

Then there are the subtle motor problems with my right hand and arm: difficulty writing on whiteboards at work; fastening buttons; a stiff shoulder that makes it too uncomfortable to sleep on my right-hand side.

The good news is that many of these symptoms are due to abate when I start the medication.

But Dr T told me that my sense of smell is now lost forever.

Diagnosed with Parkinson's

Sunday 5 February 2017

This weekend I finally cried.  I can’t remember the last time I cried properly.  Certainly years ago, probably decades. 

January 2017 was undoubtedly a month to forget, but not just because of my own diagnosis.

Firstly, and more pressingly, poor Clara went through the mill over the last month sorting out a full-time carer for her mother who suffers from Alzheimer’s and her frail 90-something father.  It is not long before a more permanent solution (i.e. a care home) will be needed and now Clara has to deal with that too.  As I write she is up North visiting her mother in hospital and her father at home.

Then, a week ago, my ex-wife Tania asked me to look after Rosa whilst she had a stay in hospital to remove a large lump suspected to be related to ovarian cancer. 

I almost cracked on Thursday morning.  Having got up at 4:30am to drive to Tania's house in Surrey, dropped Rosa off at school, and seen Tania head to the hospital, it was standing room only on the train to Waterloo. I had a busy morning of work meetings to look forward to but more importantly the big meeting with Dr T at the hospital at 2:30pm to tell me officially what I already knew. 

Coming off the platform and making my way towards the underground, I was astounded to be greeted by women collecting for ovarian cancer.  Whilst hundreds of commuters streamed onwards obliviously, I stopped to get a £10 note out of my wallet and struggled to squeeze it into the collection bucket.

“Do you know someone who’s affected?” asked the white-haired lady kindly.

“Yes,” I grunted, somewhat muffled, avoiding eye contact.  I felt the urge to unload my woes on the unsuspecting charity volunteer there and then: my ex-wife in hospital having a tumour removed, my Parkinson’s diagnosis, my wife’s battle with family crises, and – you really couldn’t make this stuff up – my daughter’s cat having died yesterday.

But stoically I kept silent, moved on, held back the tears, and went to the office.

The meeting with Dr T was as expected, early onset Parkinson’s, described as idiopathic, but almost certainly related to my family history of the disease (most notably my mother was also diagnosed about six months ago), giving me around 20 years to live.  He was sympathetic but also put a positive spin on things: I could expect at least five years of working normally and there was no hurry to change my life arrangements.  The suggestion of brain surgery sounded a bit scary and is something I will need time to get my head around, if you can excuse the pun!  But more of that later.   Clara joined me at the appointment and, needless to say, was very supportive, despite her own ongoing travails.

One strange aspect of the meeting was my rapid adoption of medical terminology.  I already talk about olfaction rather than sense of smell, and diplopia rather than double vision.  L-dopa, substantia nigra, deep brain stimulation, dopamine pathways – I’m all over it. 

Dr T referred me to a Professor in London.  I looked him up and he sounds like the guy: a specialist in young onset Parkinson’s and an active researcher into genetic causes of Parkinson’s.  So the next step is to arrange a consultation which could be the start of a long journey with him.  Perhaps it will also be the start of a symbiotic relationship: he can use me for his research and I hopefully get the best medical advice.  In a perverse sort of way, I’m actually looking forward to it – as Clara said to Dr T, I’m a scientist at heart….

There was better news that evening as I took Rosa to visit her mother in hospital: the operation had been successful and it was probably just a cyst and not cancer after all.  Rosa seemed pretty down, understandably given the situation with both her cat and her mother.  I gave her a few hugs and encouraged her to go to bed reasonably early.

I slept badly on Thursday night in Surrey and Friday was a tough, tiring day, despite working from “home”.  Tania came home around lunchtime and I told her about my diagnosis.  We didn’t really need to speak about the long-term implications for me as a father, as these were fairly obvious.

By the time I drove from Surrey to my actual home in South London on Friday evening I needed a release.  And so, listening to Magic FM, I had a good cry whilst crawling through South London traffic. 

As I’m sure many others will relate, when all is said and done, for most people it’s their family and friends that matter more than achievements.  I reflected on the gloomy, rainy streets of Merton and Mitcham of the limited “active” time I have left with Rosa, the thought of maybe not surviving long enough to see her (first!?) wedding day, and the thought of what all this means for Clara in the later years. 

There are a hundred other practical questions to deal with too: what do I do about work (I already kicked off a referral to occupational health), when do I start treatment, will I need to move house, how long will I be able to drive, what should I do about my finances, should I seek out a support group, when do I tell Rosa, and so on?  Of course, being the scientist, I wrote a list that I have started to systematically work through…

These problems and questions won’t go away but for now, as I write on Sunday evening, I feel so much better for the simple cathartic act of having had a good cry.