Working with Parkinson's

A hectic few days sets me asking - why work?

I am writing this on a Sunday afternoon, sitting at my laptop at the kitchen table. I have just taken a cup of tea up to my wife who is sitting at her laptop in her study, with our dog Sophie slumbering beside her.

On what should be a day of leisure, while we have seen family this morning and will this evening have drinks with neighbours, we are both spending a good few hours working. Now my wife, a Cambridge Professor of Public Policy, is hugely busy at the moment because the Institute she co-directs is expanding rapidly, plus she is preparing to give a series of lectures in Germany later this month.

But what’s my excuse? I retired (I prefer “moved on”) from the BBC more than three years ago, and I am six years on from a Parkinson’s diagnosis - shouldn’t I be taking it easy? I have to say that this is not a question I often ask myself but a couple of incidents in the last few days have set me thinking about why I still work.

At the end of last week I had a long telephone conversation with a newspaper journalist who wanted me to reflect on the announcement by the Aha singer Morten Harket that he has Parkinson’s. She wondered what advice I would give him, as a seasoned “Parkie”, about what lay ahead and I said that as he had already had DBS (Deep Brain Stimulation) it was obvious that he had known about his condition for some years and could learn little from me.

But I did say how glad I was that I had gone public about my Parkinson’s just a few months after my diagnosis and how that had led me in all sorts of directions, making connections with people I would otherwise have never met. Then I took the journalist through my schedule over a particularly hectic 36 hours.

Live from the kitchen on BBC Breakfast

On Thursday morning I was up at 6 preparing to go live to BBC Breakfast from my kitchen at 0720 to talk about Morten Harket. Then there were dozens of emails to read or send and a number of phone calls, mostly connected with the Movers and Shakers podcast I make with a retired judge and four former BBC colleagues about living with Parkinson’s. Then, after a meeting with a financial advisor, it was off to Waterloo to catch a train to Salisbury where I was doing an event at the International Arts Festival.

These days I find travel really tiring, especially when my drugs wear off and the trek at Bond Street between the Elizabeth Line and the Jubilee Line to Waterloo feels like wading up Scafell Pike through treacle. I managed an hour’s rest at my hotel before setting off to the Salisbury Playhouse where a lovely audience composed mainly of dog lovers had come to hear me in conversation with Matthew Stadlen.

We started by talking about my recent book about our rescue dog Sophie from Romania but Matt, a very skilled interviewer, then roamed far and wide, covering my childhood growing up with my mother, as told in my memoir Ruskin Park, my career as a technology correspondent, and the Movers and Shakers’ petition calling for better care for people with Parkinson’s.

Talking to Matthew Stadlen in Salisbury

I was particularly pleased that I could show off my new Movers and Shakers t-shirt with a QR code on the back leading directly to the petition and I’m confident that I gathered a few more Salisbury signatures helping us towards our target of 100,000 backers by September 10th.

The next morning after a restless night - insomnia is one of my most tiresome Parkinson’s symptoms - I was at Salisbury Station in time to catch the 0815 train back to London. I needed to be home in time to join an 1100 meeting by Zoom of a Patient Involvement Committee I am on discussing an innovative home-based care scheme for Parkinson’s patients in Devon and Cornwall.

After an hour which taught me a lot about the challenge of bringing change to the NHS - and made me respect even more those managers determined to push it through - more work awaited. I spent the next few hours recording interviews with people using cannabis to relieve their Parkinson’s symptoms for a forthcoming episode of Movers and Shakers, then tried to tackle the ever-growing email mountain.

Quite suddenly, the newspaper reporter at the other end of the phone stopped me and gave me a good talking to. Her message was simple - you’re working too hard, it can’t be good for you. Perhaps she was right, I thought to myself as I put down the phone, I needed to take things a bit more slowly.

Then, early this morning, I scrolled through the news on my phone (I know, another bad habit) and found something which sent me off in a new direction. A new drug showed promise in treating apathy in Parkinson’s. Now, I have long known that apathy is a symptom of Parkinson’s - Paul Mayhew-Archer has a joke in his standup routine about suicide rates being low because Parkies might want to kill themselves but just cannot summon up the energy to do it.

But I have met hundreds of people afflicted with this wretched disease and not one of them has seemed apathetic - sometimes angry, yes, but energetic, effervescent and enthusiastic seem more likely descriptions of the people who turn out on a wet day in Brighton to collect signatures for a petition or flock to dance or boxing classes.

Now I realise how stupid I have been - I don’t meet anyone with apathy because they are not out and about, they are stuck at home. They probably cannot work, even if they want to or need to, because their apathy, a close cousin of depression, saps them of the energy needed to go and look for a job.

I am fortunate because I do not need to work for financial reasons, unlike many of the young onset Parkies I have met. I choose to work because it gets me out of the house, gets my brain working and is (mostly) a lot of fun.

It has got quite a bit harder in the last six months. Parkinson’s slows everything down from putting on your socks, to typing and thinking. I started writing this post three hours ago and should have finished it by now but I got absorbed and forgot to take my 3pm pill which meant that after a while my typing came to a complete halt.

But I am not going to stop. I plan to carry on podcasting about Parkinson’s, campaigning for better care and writing this Substack about the intersection between health and technology - I am even thinking about a new book about the hunt for a cure for Parkinson’s. Why? Simple really - it’s what I do.