Solar eclipse

Thursday 24 August 2017

"Awesome" is a much overused word in the US, but it was fully justified to describe the total solar eclipse that Clara and I witnessed from Nashville, Tennessee earlier this week.

We had organised our summer holiday around this rare celestial event: Washington DC, followed by a driving tour of some of the southern states, finishing off with a couple of nights in New York City.  All in all a fabulous and much needed holiday for both of us given our annus horribilis so far this year.

I had been plotting to see a total solar eclipse ever since my trip to Penzance in August 1999, the last opportunity to see one on home soil for 91 years, was a damp and cloudy disappointment.  

There was seemingly 24x7 media coverage of the "Great American Eclipse" in the days leading up to it, expected to be the most viewed total solar eclipse in history as the moon's shadow was due to race across the continental US from Oregon to South Carolina. 

So with all this anticipation, I wasn't sure what I would make of the eclipse itself.  Some people describe it as a life-changing experience, many others consider it to be the most amazing natural event they have ever witnessed. 

I am a bit too conservative for any of that, but the spectacle of the moon slowly creeping across the solar disc for an hour and a half, the clouds disappearing just a few minutes before the main event, the ghostly corona surrounding the eclipsed sun for 90 seconds, followed by Baily's beads (where the sun's rays burst through the valleys on the moon) and the incredible diamond ring were - truly - awesome.

Photos and videos really don't do it justice: the sheer enigma of it all is so much better in real life. I was glad to have made the effort. 

On the holiday my Parkinson's periodically reminded me of its omnipresence: discomfort in my right leg meaning I could drive for not much more than an hour at a time; general fatigue requiring afternoon naps most days; and a number of dizzy spells including almost fainting in the heat at Graceland in Memphis (The King would not have been impressed).  I had recently upped my medication after an email exchange with The Professor, so maybe that had something to do with my light-headedness. 

But the awesome total eclipse of the sun in Nashville was a hugely uplifting experience, and made me forget all about these things for a while.

The endgame

Sunday 13 August 2017

There are a number of online resources about Parkinson’s.  Some of the ones I find most useful are Parkinson’s UK, the Michael J Fox Foundation and the (US) National Parkinson’s Foundation.

There is a lot of very helpful information about symptoms, how to deal with being newly diagnosed, different medication and other treatments, local support groups, advice for families and so on. 

There are various chat forums but I have learned to use these with caution, as they sometimes focus disproportionately on extreme cases of drug reactions, emotional trauma, and other negatives.

However, despite all this information, there is remarkably little written on how it all ends.  The reason this matters is because, morbid as it sounds, I need to plan ahead for the end game. 

At the risk of stretching the chess metaphor too far, at the moment I feel like I am still going through the opening sparring with my dark opponent.  He prods me with subtle attacking moves so I play defensively in the hope of at least being able to hold out through a long middlegame. 

But I know that in the long run he is better than me and, barring the masterstroke of a new cure, he will relentlessly destroy my defences and gradually move in for a slow kill in the endgame.  At the moment, nobody in the world can defeat the Parkinson’s grandmaster.  

Rather than the three stages of a chess game, Parkinson’s is commonly divided into five stages that go something like this:

Stage 1: Only one side of the body is affected by Parkinson’s symptoms (for example stiffness, slowness of movement and tremor). Maintaining balance is not an issue, and everyday activities aren’t affected

Stage 2: Tremor, rigidity and other movement symptoms affect both sides of the body. Walking problems and poor posture may become apparent. Daily activities are still doable, but with some difficulty. 

Stage 3: The individual can still function independently, but balance becomes impaired, and the symptoms have increased in severity.  Things like dressing and eating are more challenging.

Stage 4: Individuals in this stage can still walk or stand independently, but average daily tasks are challenging and assistance is needed.  They are considered severely disabled and cannot live alone.

Stage 5: The individual cannot move without assistance. They spend most of their time either in a wheelchair or bedridden. Around-the-clock nursing care is required for all activities. They may experience hallucinations and delusions. 

As far as I can ascertain people don’t really die directly of Parkinson’s but the disease exacerbates other conditions and adds risk in other areas, for example choking.  In addition, spending a life on medication and feeling permanently knackered must take its toll somehow.  Statistically I have reduced life expectancy but there is a large variation and no medical professional I have spoken to so far has been able to give me an indication of how things are likely to progress.

In a crude attempt to plan for the future, I plot best-case, mid-case and worst-case scenarios that go like this, based on my current age of 47:

	Best-case	Mid-case	Worst-case
Age at death	77 (30 years)	67 (20 years)	60 (13 years)
Active until	65 (18 years)	60 (13 years)	55 (8 years)
Working until	57 (10 years)	53 (6 years)	50 (3 years)

I look at my finances and calculate that, surprisingly, the best case is actually the worst case from a financial perspective, despite the additional working years.  If I live a relatively long time, my pension pot will be stretched thin and my ability to pay for long term care will be limited.  I am already making the assumption that I will deplete all of my capital in my lifetime and have little or nothing to pass on to Clara or Rosa, other than the house.

Then of course there is the burden on my loved ones of living a long time needing support in an extended end game.

The best outcome would be a medical breakthrough.

But, grim as it sounds, the next best outcome for everyone would be a decent middlegame followed by a rapid collapse of my defences and a swift checkmate.