Sylvia, Sophie and a Parky Podcast

My Year on Substack

This has been a tumultuous year for me with lots of ups and one big down. So I thought I would write my last post before Christmas about how this newsletter has reflected my life in 2023. “Always On” is supposed to be about technology and health - and there has been plenty of that as I have met some remarkable innovators trying to change the way that healthcare is delivered.

Tom Adler’s Bide - an incredibly simple device that could cut the number of elderly people falling over - stood out at the beginning of the year as did Neu Health’s smartphone app aiming to transform Parkinson’s care at the end.

But I have also strayed far from my brief to write about what’s on my mind, even if it has little or nothing to do with technology or health. I would apologise for that - except that often these off topic subjects seem to prove engaging to readers. In any case, I can’t help myself - if something is on my mind I have to write about it.

So here are the four subjects that most occupied me in 2023 - two related to health and tech, two very much not.

Sylvia, My Remarkable Mother

Ruskin Park - standing out thanks to some author shelf management

This was the year a project more than a quarter of a century in the making came to fruition. In 1996 when after my mother’s death I cleared out the one bedroom council flat where she had brought me up I found a treasure trove of thousands of letters and documents covering a period of more than 60 years. At the heart of this find was a box of love letters telling the story of her doomed affair with a BBC colleague which resulted in me. This September saw the publication of my memoir based on those letters, Ruskin Park: Sylvia, Me and the BBC.

The book received wonderful reviews from both critics and readers, the tiny publisher September Publishing punched way above its weight in promoting it, but I knew what a struggle it is to get any title in front of the reading public. The publishing industry supply chain often feels like some rusting machine out of the mid-1950s, with the concept of “just-in-time” delivery way ahead in the future.

Even more than great reviews, to break out from the pack of the thousands of new titles, a book needs two things from the main UK sales channels Amazon and Waterstones - availability and visibility. Ruskin Park was - after a week long gap - available on Amazon, and you could find it if you worked hard at many branches of Waterstones - though many friends reported being told “we’ve just sold our last copy but we’ve reordered it.”

But as for visibility, on Amazon that seems to depend on breaking into the top 100 - if you can make it there, you’ll make it anywhere as the song goes. If not, you are virtually invisible. In bookshops you need to be on a table, piled up by the till - reserved for Richard Osman - or chosen as a “staff pick”. Otherwise all you can do is hunt down the one copy in Waterstones - and sometimes the staff themselves admit they can’t find it - and place it, cover to the fore, in a prominent position. Is there an author in the land who hasn’t done this?

The other more useful approach is to accept every invitation to book festivals, library events and bookshop signings that comes along in the hope of creating that “word of mouth” that propels you into the Amazon Top 100. So I have had a busy autumn, travelling from Wigtown in Scotland to Frome in Somerset, from London’s Freud Museum to Gibraltar, to talk about the book and sign copies.

I have also mounted an energetic social media campaign with dozens of tweets and Instagram posts - and this Substack article - promoting Ruskin Park. I have even tried TikTok, a platform I have never really mastered, having heard that the hashtag #booksoftiktok is introducing a huge audience to the joy of reading. So is it working? Well, when I unveiled my latest wheeze - offering to join your book club via Zoom if you choose Ruskin Park - I quickly got two inquiries from the United States so I’m quietly confident of cracking the American market. And wherever you are do get in touch if your club would like a virtual visit from a bestselling* author.

(*Forward looking statement - check in December 2024)

The Parky Podcast

The Movers and Shakers

My other great obsession of 2023 was smack bang in the centre of my health and technology interests - a podcast about Parkinson’s. It sounds like a shaggy dog story - a judge, three former BBC correspondents, the co-writer of the Vicar of Dibley. and Jeremy Paxman walk into a pub. But it was in Notting Hill’s Ladbroke Arms that a group of people with Parkinson’s started recording Movers and Shakers back in the Spring, largely because we were cajoled, bullied and charmed into this unlikely venture by Sir Nicholas Mostyn, a High Court judge.

As the year ends, we have completed two series and 27 episodes and have been told by huge numbers of listeners that we have become their main source of information about the world’s fastest growing neurological condition. We have welcomed many of the leading neurologists, along with experts on diet, exercise and voice training, to the pub and also recorded special episodes at the World Parkinson’s Congress in Barcelona and at Parkinson’s UK’s AGM in Birmingham. The formula of having both a laugh and a moan about our condition seems to work, and as the ever jovial Jeremy Paxman put it in a recent edition “I think one of the reasons people listen to this podcast is because we are, by and large, pretty cheerful.”

This newsletter has become the place where I provide programme notes for each episode along with a forum to discuss the issues raised. That means that Always On can seem like a Parkinson’s bulletin board at times, but with the podcast off air until series three starts in February, I will try to feature some broader health and technology stories.

A Dog Called Sophie

Who could resist that face - or those ears?

If my book and the podcast have been where I have focused most of my energies this year, I suspect I am best known to many people as the owner of a dog called Sophie.

This Romanian rescue dog had arrived in our home just before Christmas, terriified after a three day journey across Europe in a van. She promptly disappeared behind one of our sofas and for six months spent most of her time there.

But when I posted a few photos of this sad but beautiful animal using the hashtag #sophiefromromania the response was extraordinary. Her story seemed to touch people and within days she was an internet sensation, with my Twitter follower count soaring by over 100,000 and the international media wanting to interview her - or rather me, sitting in front of the sofa on a Zoom call waiting in vain for the Greta Garbo of the dog world to emerge.

I soon found that my main role was as publicity agent to my dog - I could guarantee that at any business or social gathering within minutes someone would say “I hope you don’t mind me asking, but how is Sophie?” But once my book was published I found that she was returning the favour - a number of people coming to my book festival events or writing reviews confessed they had only found out about Ruskin Park because they were Sophie fans.

Fun though it was to own a dog that, in the words of the broadcaster Adrian Chiles, was “more famous than Lassie”, there was also a dark side. A pet that was supposed to play a vital role in my Parkinson’s health regime, accompanying me on an early morning walk as our previous dog Cabbage had, became instead a source of constant worry, I lay awake in the small hours wondering how on earth we were going to turn Sophie into the normal dog we needed her to be.

So in her impact on my mental health I did find a reason to write about Sophie here. This ended up being my most read story of the year generating more than 400 new subscribers - I hope they have all stayed to learn more about Parkinson’s and health tech.

Falling Down

The low point of my year came on Friday October 13th when I fell down injuring myself badly and ended up in Ealing Hospital. There followed a nightmarish week where a series of mistakes and mishaps delayed me getting the surgery I needed on my broken elbow, and the stress and anxiety saw my Parkinson’s symptoms worsen markedly. The most serious incident saw me sent home with an open fracture but without antibiotics, putting me at risk of a dangerous infection.

I documented my experience in two posts - here and here - concluding that one of the most serious problems facing the NHS was its inability to communicate clearly either with patients or across the organisation. After these were published I received dozens of messages from people describing similar experiences.

The NHS responded quickly to my story and started a major investigation into what had happened at Ealing Hospital which is still underway. While I am aware that the fact that I also wrote about my ordeal for the BBC may have made a difference I am still grateful that this matter is being taken seriously.

And I also want to make clear that those who work in our NHS are nearly always doing heroic work under tremendously difficult conditions. Just one small example. I am now a regular visitor to Northwick Park Hospital for physiotherapy on the elbow I broke - and a very good service it is too. But the hospital is vast and hard to navigate with a confusing new check-in system that fails to give you clear instructions. So when I arrived for my first physio apppointment I headed to the reception desk for help.

There I was greeted by a woman who, instead of saying “left at Costa, right at the multifaith room, through casualty and carry on until you lose faith..” , stepped out from behind the glass and actually walked me most of the way to my destination. I have since observed the same lady being similarly helpful to other patients. So thank you and a Merry Christmas to her, to all NHS staff and to you, the subscribers to this newsletter, who now number more than 10,000.