Reflections in Venice

Saturday 26 September 2020

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

Wow, what an astonishing view!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Your remarkable brain

Sunday 6 September 2020

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

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

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

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

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

1. You can have brain surgery whilst awake

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

2. Left brain/right brain is a myth

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

3. Bilingual children have significantly more developed brains

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

4. You can function with only half a brain

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

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

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

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

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

He was lucid right up until the end.