Tough day ahead

Thursday 31 January 2019

Awake since 4am, tossing and turning in the bed, uncomfortable with constipation.

Headache as I shave and shower, not paying attention to Radio 4 droning on about the interminable Brexit machinations.

Shut the front door and venture into the darkness. Sub-zero today and I step gingerly over the icy patches on the way to the station. 

Dozing on the 7:12 to Blackfriars, too tired to check my email, but at least I have a seat.

Chest already feeling tight with the stress of another night of disturbed sleep.

Despite my recent optimism and positivity, most days in the office are tough, but today will be extra hard to see through to its conclusion.

Another year closer to the end

Monday 31 December 2018

I like things with a beginning and an end.

For example, I like projects. They have an objective, a start (where the planning is done to meet the objective), a middle (where the work is done) and an end (when the objective has been met and you can see the results).

My work is mostly project based, which I far prefer to when I was in a line management role at a previous company. With projects you get to have a certain amount of control and you have a target completion date. There are good projects and bad projects, but at least with the bad ones they eventually come to an end, and then you can move onto the next project.

However, much of life is not like a project; it’s continuous. Housework is a good example.

At home, I willingly do my share of shopping, cooking, cleaning, laundry and ironing. But I find these to be frustratingly pointless. Take ironing. No matter how much you do and how diligently you do it, clothes will be creased again next week and there will be another batch to do.

I bought myself one of those robot vacuum cleaners that creeps around, seemingly randomly, with a slightly menacing demeanour. Clara says it’s my pet. It does make life a little easier, but it doesn’t take away the mundanity and transitoriness of the weekly clean. There will be more dust next week. More crumbs on the kitchen floor. More bits of leaves brought in via the front door – or the cat flap. No beginning and no end. There will be dirt forever. To clean, or iron, or cook is merely to tread water.

As I look back on 2018, I ponder: have I just drifted through another year on the relentless treadmill of existence, or have I made tangible progress towards some sort of goal? Am I a better person, am I happier, have I given something back, or achieved something compared to this time last year? 

For many people, simply ticking along and enjoying time with loved ones and the community is reward enough. But I have a feeling that I need to be working towards something more than just daily living.

We’re in philosophical territory here, skirting around the big question of what it’s all for. I will return to the meaning of life in a future post, or two, but for now I will make the following observation.

I’m now a year closer to the end compared to 12 months ago. But, I have a reasonable idea when the end might be. And, given that I like to be able to plan ahead, I consider that a good thing.

For most of us, we have no idea when the end might come. Accidents and unexpected significant illnesses aside, a person my age these days could reasonably expect to reach anything from 75 to 105.

In my case, I have three data points that all lead me to a similar conclusion: 

1. Scientific research (see paper here)
2. The opinion of my first neurologist, Dr T
3. My own family history (see previous post A family affair part 4).

The upshot is that I can expect to live to around 67 with a Standard Deviation of 5 years – which, when you do the math, means I have about a 5% chance of making it to 75.

In practice, advances in medical science probably make my chances of getting to 75 somewhat higher. There is always the possbility of a cure in my lifetme. But for now, 70-75 is what I'm planning for.

Although the premature conclusion to my life means less time with loved ones, this does at least allow me to plan my future and gives me the opportunity to maximise what I do with my remaining time. Rather than merely existing for an unknown number of years, I have the chance, within the constraints of the progression of my disease, to actively manage what I get out of it and the contribution I can make.

So, what did I achieve this year? One thing was to be a year closer to retirement. I have a financial planning spreadsheet shows that it should be possible for me to retire aged 53 or 54, in spite of the pounding global equity markets took recently. Three or four more years of work, 10-15 reasonable years, then a few tough years at the end suddenly doesn’t seem so bad.

It's also been another busy and rewarding year. Trips to Seville, Barbados, Canada, Madrid and, currently, Budapest, where we are shortly going to be seeing in the New Year. Clara supportive as ever. Rosa growing into a confident but level-headed teenager. We had quite a bit of work done on the house and I feel that my home, with its shiny new bathroom and handsome wooden floors, is now a project that’s complete. I also had a decent year at work and hopefully am unlikely to lose my job in the near term, regardless of whether there is a Brexit-induced downturn in the next few months.

And, whilst I continue to have good weeks and bad weeks, and to deal with the heavy fatigue, overall the Parkinson’s has progressed slowly this year. No change in my medication for 18 months. In fact, several people have told me I look better than a year ago. I suppose I feel better too. Could the daily glass of single malt actually be working?

So, it’s another year closer to the end for me. But for the first time in a while, I feel like I have one hand on the steering wheel rather than sitting in the passenger seat watching the journey go by.

Paradoxically, despite the ups and downs of my condition, I really do feel very happy with my lot. Though I am acutely aware that, for now at least, I am one of the lucky ones: there are many Parkies far worse off than me.

Anyway, that’s enough navel-gazing.

It’s New Year’s Eve and outside is a beautiful crisp sunny winter's day in Budapest. Time for a fun start to 2019….

Happy New Year!

Parkies

Wednesday 21 November 2018

We call ourselves Parkies or PWPs (People with Parkinson's).

And we pop up everywhere.

Since I first went to a coffee morning for local Parkies not long after my diagnosis, I have been gradually getting to know other people with Parkinson’s. I now know several within walking distance of my home in South East London, some of whom I would call friends.

I’ve so far organised three lunches for the locals and there is starting to be a regular crowd.

We are a mixture of ages, from forties to sixties, with some of us still working and others retired. I am the most recently diagnosed and, at the other end of the scale, some have been living with their condition for a decade or more.

There is also an assortment of wives and husbands, evidently very understanding and supportive: despite our disease most of us are very lucky to have other halves who appreciate what we are going through and are there for us when we need support.

I could describe everyone’s background. For example, one person designs film sets and another is a retired accountant. But professions aren’t important; what binds us is our shared experience of living with Parkinson’s. And that is an ineluctable leveller.

To illustrate what I mean, take Gerald, the newest member of our lunch club. I had met him briefly at another Parkinson’s event a few months ago and had discovered he lives close by, so I invited him and his wife along to a lunch last weekend.

If I’m honest, Gerald was hard work. Softly spoken and somewhat distant (because of the you-know-what) I struggled to make conversation with him. I persevered for a while, learning that, now in his early seventies, he had been diagnosed about six years ago. I also found out that he goes to a local choir and various exercise classes; none of which I do because they are all mid-week when I’m at work. But eventually I gave up straining to hear him and turned to others at the table. I caught up with the usual crowd on Deep Brain Stimulation, stories about children, the merits of local restaurants and so on.

Towards the end of the lunch I overheard Gerald mentioning his alma mater. It turned out we went to the same small college (a hundred students in each year – what were the chances?) and from there he suddenly opened up and we had an extraordinary discussion.

Gerald was something of scientist and held court giving his views on everything from Stephen Hawking to the discovery of the Higgs Boson, and Artificial Intelligence, in which he had a PhD. He was formerly an MP in a Commonwealth country. And he was about to publish a book on corruption in politics.

Despite our age difference it seemed like we had a lot in common and I gave him a warm handshake as we left the restaurant. I figured he would be an interesting person to get to know a little better.

Then, the most remarkable fact of all I discovered when I looked him up on the Internet after returning home. He had a long entry on Wikipedia.

Only 4 years ago, whilst already suffering from Parkinson’s, not only was he an MP, he had been Prime Minister of a country of nearly 20 million people, and his wife the “first lady”.

But here’s the thing: none of that matters.

Regardless of who we once were, now we live our lives in the shadow of a disease that is causing our brains to slowly degenerate. We are all on our individual journeys, and we all have to come to terms with the condition in our own ways.

What matters is not what we did or didn’t do in the past but how we deal with the present and the future. What matters is how we conduct our daily lives and interact with those closest to us. What matters is, despite our shared misfortune, are we still decent, civilised people?

So the erstwhile Prime Minister is most welcome to our little lunch club, but no more or less so than the doctor, the IT professional and the stay at home mum.

We are all Parkies now.