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.
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.
