The cat

Friday 31 March 2017

Clara has a black and white cat called Tolstoy.

There’s no getting around it – that’s a very pretentious name.

Actually, I vacillate between calling Tolstoy Clara’s cat and calling him our cat.  You see I have a love/hate relationship with the cat.

Some days I love his cute furry face and his little white paws and his crooked white whiskers.  And the warmth of his cuddly body asleep on the sofa. And the way he comes running when I shout “chicken” (though I may have cried wolf too many times on that one as he seems less enthusiastic these days).

But other times I find him irritating.  A pointless, stupid automaton, whose raison d'être is eating.  An expensive luxury running up food bills, and vet bills after getting into fights.  A cat that seemingly does its business in its own back garden, creating a sticky hazard when I clear up the autumn leaves.  And an apparently endless generator of black hair around the house that I have to vacuum and wipe away.

As well as being generally cute, the cat serves another purpose: there is always something to talk about, both with one another and with feline loving friends.  Dozens of “how’s Tolstoy?” conversations and hundreds of “how is the boy?” text messages.  Gigabytes of mindless photos of “the cat” and associated Facebook posts.

Tolstoy also keeps us company at mealtimes.

When chatting in the kitchen over dinner a few days ago, Tolstoy was sitting patiently by the table as the conversation moved to whether Clara would look after me in years to come when my Parkinson's symptoms get bad.

“Of course,” she said. “I’ll always take care of you.”

Clara and I got married in Italy, in the town hall in Florence, in an intimate ceremony attended by just a few friends.  Despite the presence of a so-called translator I didn’t understand much of what was going on, though I gathered the wedding vows were very practical in nature, all about setting up a house together and so on.  But the words were largely irrelevant as we both knew that what we were really thinking was “for better for worse, for richer for poorer, in sickness and in health….”

“…. As long as I can always have a cat,” Clara added, flashing a loving smile at the boy waiting patiently for treats.

I grinned broadly.

That seemed, literally, like the deal of a lifetime.  I silently thanked my lucky stars for having such a wonderful wife.

“OK. You can always have a cat,” I confirmed.

Seeing double

Thursday 30 March 2017

Now that the early mobility problems of my Parkinson’s are largely under control due to the medication, a new problem has started to take centre stage: my eyesight.

A quick Google search reveals that perhaps 15-20% of Parkinson’s sufferers have vision problems.  In many cases these are brought on by dry eyes – because of the reduced blink rate.

My problem, on the other hand, is diplopia, or double vision.  Put simply, beyond one or two metres I see two of everything.  Two sets of people walking down the street, making the morning commute tricky.  Two whiteboards in the meeting room.  And double sets of lane markers and headlamps on the motorway.  No doubt people on the tube think I’m a weirdo with my strange gaze and my expressionless, robotic face…

It started gradually about two years ago, coinciding with the early symptoms of the other thing, and got steadily worse until, around Christmas time, I realised that I really needed to stop driving.  The diplopia has now largely stabilised to a point where I pretty much have it all the time.  You’ll be pleased to know I have largely stopped driving, partially thanks to the joys of Uber.  And when I do need to drive I wear a pair of glasses I made up with the left eye obscured.  This is not amazing but it works, and as far as I know is legal.

After seeing three specialists – an ophthalmologist, an orthoptist and an eye surgeon – I have more or less got to the bottom of the issue.

Time for another quick science lesson.

There are three pairs of muscles that control each eye: three on the top and a matching three on the bottom.  When one of these muscles is slightly weak, the natural tension in its opposite member pulls the eye in one direction, leading to a squint.  My specific problem is with the left superior oblique muscle.  This means the muscle in my left eye on the inside top.  My left eye transmits an image to my brain that is out of line with my straighter right eye.

It’s actually not an uncommon problem, but typically our muscles and our brains compensate for it.  In my case I’ve probably had it since birth and always managed but now I am no longer able to adjust.  The interesting thing is that among the specialists I have seen, opinion is split as to whether this is caused by my Parkinson’s or just natural degradation with age.  As I am starting to learn, medical science is riddled with uncertainties.

Now for the scary bit.

Normally this can be solved with prisms in a pair of glasses, which can move one of the images vertically or horizontally until they match.  But in my case, unfortunately, the inside muscle also causes torsion, i.e. rotation of one of the images.  And no prism can correct for that.

So I have two options: live with it (assuming it doesn’t get better with time – unlikely) or have eye surgery…

I went to see an eye surgeon, Mr A, who talked me through the procedure.  It only takes about 45 minutes under general anaesthetic and involves cutting one of the muscles and re-stitching it in a new place.  Significant vision improvement is seen in about 75% of cases and there seems to be little downside, other than a week or so off work.  I guess in the worst case I still have my right eye to fall back on – I got Mr A to confirm he wouldn’t touch that one!

I provisionally booked myself in for surgery in June.  £3,500 but hopefully the insurance will pay.

However, I am unsure whether to go ahead.  The reason is my nervousness about general anaesthetic.  The risk of death in surgery is extremely low.  But I’ve heard a number of anecdotes about postoperative cognitive dysfunction.  For example, my own mother-in-law went in for a routine hip replacement and came out suffering from Alzheimer’s.  Presumably the surgery didn’t cause the Alzheimer’s but it certainly exacerbated it.

I did an internet scan for relevant research papers.  Postoperative cognitive dysfunction is a recognised condition but my profile is low risk.  However, I also found out that different anaesthetics are often needed for Parkinson’s patients due to their medication.  Although I couldn’t find any scientific evidence of increased risk because of my disease, I remain uncertain.

Perhaps I will opt for local anaesthetic, but will that traumatise my brain even more?

I need a second opinion from The Professor.  Luckily, I am due to see him, or rather two of him, in about a week’s time.

High on dopamine

Sunday 26 March 2017

I have been taking my "artificial dopamine", pramipexole, for about five weeks now. 

The good news is that my Parkinson’s symptoms have improved greatly.  I am now able to touch type this text fluently, write properly and even my constipation has got a lot better.  I still have a bit of discomfort in my shoulder and some occasional shudders in my right arm but overall I am able to function normally.  There have been no repeats of the pre-Paris near death experience….

I am also starting to feel like I am constantly on a high.  Several times this week I woke up suddenly at 3 or 4am and was unable to get back to sleep.  But the drugs swirling around my brain, like (I imagine) ecstasy or cocaine, kept me wired through the work days.  I felt weird at work all week: alert and able to function pretty well, but slightly detached from reality: tuning in and out of conversations and off, even more so than usual, in my own world.

The dopamine highs of this week have largely caught up with me now and the weekend has been one of trying to catch up on sleep. 

A month or so after my last run, the motivation is starting to return a little and I went out for a short plod in the bright early spring sunshine.  I felt part of a community again as I passed various men and women out doing their Sunday work out.  One young woman was wearing a pink breast cancer charity T-shirt which briefly filled me with optimism.  After a couple of kilometres, I actually felt pretty good and started to get that familiar feeling of getting into a running rhythm and, dare I say it, some enjoyment at last.

When I am in the running zone I barely look at the road beneath my feet.  Through tens of thousands of miles pounding all manner of surfaces I have become subconsciously programmed to navigate different terrains, and automatically adjust for bumps, dips and other obstacles.

So I was surprised when I crossed a road and twisted my right foot on the kerb.  I squealed in pain as my ankle turned outwards and I strained various tendons.  After stopping for a few minutes to let the pain subside, I limped home.  It was not a major injury but my foot will no doubt be sore and swollen for the next week or two.

I have transitioned between road and pavement countless times on runs and never tripped like this before.  But, of course, my brain is still struggling to send the correct signals to the right-hand side of my body and I failed to re-calibrate for the sluggish movement of my right leg.

A sobering reminder that, despite my dopamine highs, I still have Parkinson’s.

PFS

Wednesday 15 March 2017

When I wrote a few weeks ago about the little white pills, it was more prescient than I realised at the time.

On Friday evening Clara cooked a tasty coq au vin.  I decided not to drink any additional alcohol that evening and have in general been going easy on the booze.  The label on my box of pramipexole says to avoid alcohol altogether, but the pamphlet inside says just to “be cautious with alcohol”, so I figure a glass of wine a day is probably OK.

Later that evening I took my little white pill as usual just before bed.  All seemed normal until I awoke abruptly about four hours later, around 2am (yes, I really do go to bed around 10pm on a Friday night these days).

I immediately knew I was going to throw up, but there was also another feeling.  It is difficult to describe – a kind of extreme daze, only half-conscious, and like my life force was rapidly slipping away.  I instinctively knew I had to act quickly.

I staggered to the bathroom, the last few steps on my hands and knees as my head pounded and consciousness slipped quickly away.

I have honestly never felt so bad in my life.  I felt like I was going to die there and then.

I awoke on my side on the bathroom floor with a pool of vomit next to my mouth and over my body.  I hunched over the basin and continued to vomit violently, spewing out lumps of chicken, bacon and mushroom.  Luckily, I couldn’t smell any of it….

At this point, Clara came in, obviously very concerned.

I cleaned the bathroom floor, had a bath, emptied my stomach some more and returned to bed an hour or so later, feeling very delicate. 

Neither Clara nor I slept well for the rest of that night.  Which was a shame as we were very tired travelling to Paris on the Eurostar on Saturday morning for our sixth wedding anniversary.

We stayed in a lovely five-star hotel – The Regina next to the Louvre – and dined at the oldest brasserie in Paris, Le Procope in St-Germain-des-Prés.  Needless to say, we avoided the house special, coq au vin, and the more exotic seafood. We wandered by the Seine and visited Sainte Chapelle and Arts et Métiers, all in lovely early spring sunshine.

It was still a lovely weekend but the shine had been taken off because of what had happened on Friday night.  Was it a simple case of food poisoning, in which case why was Clara completely fine and why did I have such an extreme reaction?  Had something in the meal reacted badly with the pramipexole?  Or had my body rejected the little white pills?  If so, would it happen again?  Could it be even worse next time? Or perhaps it was a combination of factors: food poisoning exacerbated by the medication?

I emailed The Professor and I picked up his reply on Sunday evening after we had returned home:

“I would suggest checking your blood pressure at home and being cautious when getting up at night.  Doesn’t sound like a drug reaction but if it recurs or you are light headed at night or when standing you should let me know.
Best regards
The Professor”

That was some comfort and, so far, I haven’t had a recurrence.

Nevertheless, I was shaken by what happened on Friday night and decided to create an abbreviation for such events: PFS. For Pretty Fucking Scary…

The Professor

Friday 3 March 2017

I had my first meeting with The Professor yesterday evening at the private consultation rooms of his hospital in London.  Private medical care is very pleasant: comfortable quiet waiting room, very helpful reception staff, minimal waiting time and so on.  But like flying business class, the destination is the same whether you travel in the front or the back of the plane, and you pay an awful lot for a better seat.  Fortunately, my work insurance was covering the £300 for 45 minutes, but they will not be covering any more consultations, so next time it will be on the NHS.

The Professor is a well built, semi-balding, bespectacled man, probably about the same age as me.  I felt somewhat over-dressed in my suit and tie compared to his more casual jumper, but he was friendly and welcoming and I felt quickly at ease.  His generic South Eastern accent gave little away about his origins.

We went through my symptoms, my medication, my family history and my state of mind and he repeated some tests on my body like Dr T had done, plus a few more.  Things like testing my reflexes with a hammer (a test that probably hasn’t changed since Victorian days), watching me walk, testing the strength of limbs and digits, and so on.

In some ways I was disappointed not to hear much that was new to me as he went through the motions of explaining my condition and the near-term treatment options, essentially telling me that I should continue on my existing course of medication.  He was very professional about it: sympathetic and considerate without being condescending, knowledgeable but skilled at explaining things in layman’s language.  I didn’t get much of a sense of the real person beneath the medical professional but perhaps that will come with time.

Nevertheless I had come to the right person.   Amongst other things he specialises in genetic causes of young onset Parkinson’s and had recently set up a study looking at families with the disease.  I had brought a family tree with me and he seemed fairly interested in it.  I would be genetically analysed in due course and perhaps contribute to his study.

On the question of when to tell Rosa, he suggested waiting until she is 16 or 17 though as I find it hard to keep a secret I may tell her, in gentle and positive terms, sooner than that.  For genetic screening he said the policy was only to screen adults and only at their discretion – whilst there are clearly advantages to finding out that you don’t carry a faulty gene, apparently most people prefer not to know…

Later that evening I officially broke the news to a group of male friends over dinner, friends that I have been catching up with every first Thursday of the month for about 25 years.  They were of course surprised but sympathetic and this quickly led to confessions over sushi and beer about beta blockers and other middle-aged man medication.

However, I was able to put my diagnosis in a positive light.  The Professor had painted a very optimistic picture about his and other research, boldly declaring that a significant breakthrough was likely within ten years.  The investment in research from the likes of the Michael J Fox foundation is substantial and, apparently, there are many promising leads.  I remain slightly less sanguine that I will be cured (based on the fact that medical science still doesn’t actually understand what causes the disease) and will continue prepare for a more pessimistic scenario, but of course I hope that I am wrong.