Finding Happiness with Parkinson’s

Friday 11 June 2021

So I wrote a book based on this blog.

Despite penning 75,000 words, I couldn’t think of a snappy title, so I decided to call it simply what it’s about: Finding Happiness with Parkinson’s. You can find it on amazon.co.uk here and for other Amazon sites like amazon.com or amazon.ca, just search for the title.


Now approaching five years since diagnosis, I’m at a transition point in my life: soon to retire and take a leap into the new and fascinating world of neuroscience. I attended an introductory webinar to my forthcoming MSc course this week along with 50 other students from across the globe, and whilst the pre-reading list is a little daunting, I'm excited and I feel confident I’ve made the right decision.

More importantly, I feel like I’m finally in control and mentally prepared for the long haul, so now seemed like a natural time to bring the story together. Although the book is about 70% based on this blog, that still leaves 30% of new material. I hope it’s a worthwhile read.

Also, drum roll... I get to finally reveal my identity. As you can see from the book cover, I am not Steven or Steph, but Jodie Forbes and my wife is called Clare. Though all the other names, aside from the cat, remain anonymised.

For reasons I don't fully understand, the email subscription service used by this blog is being decommissioned next month. So, if you subscribe, this may well be the last post that you automatically get by email, but I'll endeavour to manually send out future posts to the current subscriber list.

Until then, enjoy the book if you decide to buy it. Profits will go to Parkinson's charities.


A leap into the unknown

Monday 5 April 2021
 
So I’ve decided to take the plunge. I applied to three MSc courses in London for the academic year starting in September 2021. Fairly quickly I got two unconditional offers, from King’s College and Birkbeck, plus an interview request for a bioinformatics course at Imperial College.
 
I decided that King’s was the better choice for a number of reasons. Firstly, the course I applied for there is a general foundation in neuroscience pitched at people of all backgrounds. Although I might end up doing bioinformatics, I think a general course will give me more options. Secondly, the research there is more aligned to what I would like to get into, particularly around study into neurodegeneration. And thirdly, the Denmark Hill campus where neuroscience is taught is only three miles from my home. Given that King’s is ranked around 15th in the world for neuroscience and is almost on my doorstep, the decision to accept their offer was a no brainer (no pun intended), and I declined the other two.
 
And so, I have paid my deposit, told my boss I will be retiring at the end of August, and braced myself for the more frugal lifestyle I will have to adopt for the next three years until I can access my pension. I’ve been saving hard over the last decade or so, and can afford to stop work a few years early and pay for a Master’s – but only just.
 
I’m somewhat apprehensive. I will be packing in a job in which I am experienced and respected, and that pays well, and will be exchanging it to go back to being a student in my fifties. I will be the old guy in a lecture theatre full of twenty-somethings, struggling to keep up and to assimilate new concepts and remember new facts.
 
Having Parkinson’s will also make things difficult. I emailed the disability support group at King’s to inform them that I have two particular challenges. The first is that I more or less cannot write any more (though, when properly medicated I can still touch type fairly well). So when it comes to written exams, I will need a special exemption to be allowed to instead type my answers using a laptop. The second problem will be my ability to perform lab work – I assume one needs a steady hand to slice up a brain specimen, for example. I’ll just have to figure out how to manage on a case by case basis.
 
Will I even be able to pass the course, I wonder, let alone actually move into the sharp end of medical research at the end of it? Will I simply be too fatigued from the Parkinson’s to keep up?
 
I figure I’ve got nothing to lose. The worst case is that I don’t take it any further, but at least I will have spent my early retirement doing something new and interesting, rather than just playing online Scrabble and pottering in the garden.
 
I draw inspiration from the course video: “… the start of a fantastic journey where you will learn how the mind and brain works… the magic is to have students from all backgrounds and countries working together…”
 
I conclude that the best case is I really do embark on an incredible journey and, maybe, just maybe, in some small way, end up making a difference.
 
This is indeed a leap into the unknown. But it’s a leap worth taking.


 

2020: Farewell or good riddance?

Thursday 31 December 2020

What to make of 2020?

The 2020 photo album I am compiling is, unsurprisingly, a lot thinner than usual. Not a lot happened in January and February anyway, and then – boom – the Covid-19 pandemic took over the world and there was even less to put in the photobook. Just a few pictures of empty supermarket shelves and face masks fill the March and April pages. The rest of the year comprises a small number of brief highlights, like a September trip to Venice or a fun Halloween, connected by long stretches of isolation. November stands out as a month where nothing happened at all: in the last 12 years of assembling the annual photo album, this is the first time there’s been a month without a single picture on my iPhone.


Of course, if, like my neighbour Jim, or a number of people at work, your whole family came down with Covid-19, then it was a pretty miserable year. Or if your business went under. Or if one of your parents died. Or if your teenage daughter was hospitalised for several weeks with a painful neurological condition. Or if your incurable Parkinson’s got a little worse. Given that the last three of these things did happen to Clara or me, it is tempting to write off 2020 as a year to forget. An annus horribilis as The Queen once said in her Christmas speech.

However, most clouds have a silver lining. So, whilst appreciating that it was a crap year for many, here are five good things that came out of 2020.

  1. Staying connected

Ironically, given social distancing, Covid-19 brought many of us closer together. I’ve seen a lot more of my siblings than ever before: we have family Zoom calls every few weeks whereas in many years previously we would see each other only at Christmas. I schedule regular video catch ups for the local PD community. I see some of my friends more than before, albeit on a screen.

Surprisingly, in a work context, whilst we miss out on the human connection from the simple act of shaking hands, we do get to see into people’s sitting rooms, studies and bedrooms. We often talk more openly about our personal lives than we would do in the office, as the boundaries between work and home have become blurred. I’ve got to know many work colleagues better over Zoom or Microsoft Teams than face to face.

  1. Working from home

For millions of office workers, working from home was always an option but in many companies was seen as a privilege to be used occasionally rather than a full equivalent to showing up in person.

Perceptions have now changed. For instance, the working mother, who works from home 50% of the time can now expect her career to progress just as quickly as her colleague who produces the same output but spends five days a week in the office.

  1. Local community

Our local Café Rouge sadly closed down but many local businesses are flourishing. The nearby butcher, bakery, Italian deli and various restaurants have adapted their offerings and are thriving as a result. Those who have innovated and adapted have done well. For example, many of the local eateries now offer takeaway coffees during the day gourmet delivery menus in the evening.

Similarly, local community has had a boost. Several times we’ve benefitted from the WhatsApp group for our street. Originally set up for the pandemic, it had the side effect of bringing local residents together for anything from helping with damp problems to sourcing pumpkins for Halloween.

  1. Environmental benefits

From reduced carbon footprint to clear water in the canals of Venice, this is an obvious one… the challenge now is how we sustain it.

  1. A sharpened perspective 

Not long before the pandemic hit, I overheard in a restaurant two men talking about the pros and cons of various airlines’ business class offerings. One said: “The problem with the new BA transatlantic business class is the holder for the mineral water bottle. It’s in the wrong place so that when you’re on the flat bed and need a drink it’s awkward to reach.” This may well be true, but, really? WTF? In the context of no longer being able to fly anywhere at all, this sort of observation seems even more absurd than it already was.

As another anecdote, shortly before the second lockdown we went to listen to a concert by the Brodsky Quartet, some would say the best string quartet in the country. It was a one-off performance of pieces by Beethoven. The leader of the group gave a heartfelt speech of how much it meant to them to playing that evening. Particularly poignant was listening to “Cavatina” from String Quartet No. 13 in B flat (opus 130). This is the final recording on the golden record of the music and sounds of Earth, on board the Voyager 1 spacecraft, currently the furthest manmade object from our planet. So this short piece of music which we had the pleasure of listening to live prior to the lockdown also represents humanity far beyond the edge of our solar system.

The point is that often it is only when things are taken away that you really appreciate them.

But when things are taken away, as with Parkinson’s, it’s also important to focus not on what you no longer have, but on what you still have and still can do.

And perhaps that is the most important thing to take forward from 2020.

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