See Through News founder and Gift Horse Distributor tells the unusual story behind a Facebook group in our social media network
Parkinson’s UK Facebook Group
In the summer of 2022, I set up this Facebook group as a forum for Parkinson’s patients & carers.
Like all See Through News Facebook Groups, it followed our Methodology. Parkinson’s UK Facebook Group was designed to further our Goal of measurably reducing carbon, by creating an original project that was attractive, entertaining or useful enough to appeal on its own merits, but which also was a starting point to guide Unwilling Inactivists towards effective climate action, should they so choose.
In this case, the ‘target audience’ was Parkinson’s disease patients and their carers. As Parkinson’s affects 1 in every 500, this is a considerable audience. The set-up of the group followed the ‘Review’ format of our Newspaper Review Project.
So far, so normal. Why, then, am I writing this article in the first person?
Parkinson’s – this time it’s personal
Unlike the hundreds of See Through News Facebook Notice Board, Geographical, and Topic-based Groups in our social media network, or the local newspaper review groups in our Newspaper Review Project, the Parkinson’s UK one was personal.
It’s original purpose was to discuss the charity Parkinson’s UK (PUK). I could have just set up a regular support group for Parkinson’s Disease patients and their carers, but I supposed there were already plenty of such groups. A quick survey showed a large one run by Parkinson’s UK itself, so there didn’t appear to be any need for another one.
But of course, there’s another reason why I chose Parkinson’s, as opposed to even more common and devastating diseases, like cancer, Alzheimer’s, or heart disease.
That’s why I’m writing this one in the first person.
Parkinson’s patients do what Parkinson’s patients want
I was wrong about the scope of the group.
Over the past few months, as members joined, they cheerfully ignored my Description of the Group’s scope, and turned the group into what they wanted it to be, which was their own mutual support group. Ironically, this was exactly what the forerunner of Parkinson’s UK, the Parkinson’s Disease Society, was set up to be – a non-medicalised, compassionate support network for Parkinson’s patients and their carers. It turns out that Facebook is still pretty good as putting like-minded people with common interests together.
Facebook Groups are virtual forums for like-minded people with common interests, and like any group, its members have a collective mind of their own that doesn’t always chime with whoever’s put themselves in charge.
Members of this particular group turned out not to be so bothered about dissect charity mission statements, or debate the relative merits of focusing on Parkinson’s research, v support for patients & carers.
Quite understandably, as they live with Parkinson’s 24/7, they were more concerned with how to deal with it. They changed the Group’s focus because they found this more useful. As Admin, I knew there was no point in trying to change the conversation, so was more than happy to let members decide the group’s scope and direction. I just did my best to interpret and facilitate the wishes of Parkinson’s patients.
You see, if there’s one thing I learned one thing from my father, Dr. Gerald Stern, it’s the importance of listening.
Dr. Gerald Stern, specialist Parkinson’s neurologist
Gerald Stern is one of the two faces you see on this group’s cover image, alongside Mali Jenkins, whose sister had Parkinson’s, and who was an active and brilliant early advocate for patient and carer support.
In 1969, when I was four years old, in the house next door to where I’m now living, they set up the Parkinson’s Disease Society, later re-branded Parkinson’s UK.
Dad was born in 1930, retired from the NHS at 65, and died in 2018. Not many of his patients are still alive, but many of his students and colleagues are still practising. In turn, plenty of their students and colleagues now spend their working hours, as Dad did, treating Parkinson’s patients. These patients are now receiving Dad’s wisdom second-hand, particularly in the realm of clinical practice, where good habits don’t change.
‘Clinical Practice’, Awakenings, and Parkinson’s
After his retirement, Dad was often invited to lecture and teach on the importance of what doctors call ‘clinical practice’, and what most of us know as ‘bedside manner’, or simply ‘listening and observing’. Dad had learned from the neurological giants of his time, in an era before genetic sequencing, MRI scans, and personalised medication. An era when a neurologist’s most potent tools were not statistics, sequencing and scans, but old-fashioned listening and observation.
Dad wasn’t just a National Health Service consultant. He also had private patients including residents of the Vatican and other billionaires. They sought his treatment precisely because they knew he’d treat them exactly the same as any other human suffering from Parkinson’s.
But Dad also did research, and made a point of keeping up with the astonishing medical advances proliferating after he retired from the NHS in 1995. As the years passed, and hi-tech Big Data and biomedical engineering increasingly dominated Parkinson’s research and funding, Dad declined invitations for public pronouncements on current developments, preferring to leave it to ‘the experts’.
There was a time when Dr. Gerald Stern was at the cutting edge of PD research, such as when he pioneered the clinical prescription of levadopa, alongside his contemporary Oliver Sacks, who wrote a book about his experiences prescribing levadopa to victims of encephalitis lethargica. Awakenings was a brilliantly accessible and compassionate account what happened when ‘living dead’ victims of the ‘sleeping sickness’ epidemic that followed WW1 were re-animated, decades later, in an obscure New York ward for hopeless cases.
The Hollywood version of Awakenings, starring Robin Williams as Sacks, and Robert de Niro as one of his ‘awakened’ patients, remains one of the best onscreen depictions of neurological symptoms. The Hollywood version didn’t cast anyone in Dad’s role, but he played a critical role in pioneering levadopa for other neurological conditions, principally Parkinson’s. And Robin Williams did a great big screen masterclass of the merits of ‘clinical practice’ in treating patients. ‘Miracle drugs’ grab the headlines, but from the patient’s perspective, it’s all about their relationship with their doctor.
Clinical Practice, babies, and bathwater
Yet he was still invited to lecture well into his 80s, on two topics: the history of PD, and ‘clinical practice’. Modern technology has revolutionised our scientific understanding of PD’s mechanisms, but in lecture. halls, on ward rounds, and in bars and restaurants around the world, he’d warn young doctors against the risk of this Brave New World coming at the cost of patient care. In medical journals, he’d warn against becoming too seduced by technology. Divert too much funding from patient care towards the lab, he’d say, and we risk throwing out the clinical practice baby with the miracle drug bathwater.
Genomes may come and go, but good clinical practice remains good clinical practice. Patient care, the meticulous taking of medical histories, acute observation and ‘bedside manner’ are still not only key elements of good treatment, but what the actual patients, who have to live with PD every day, personally experience.
This Facebook group, then, was my way to keep alive Dad’s values, and thereby his memory. My small fanning of the flame of his passion for helping victims of what he used to call ‘this cruel disease’.
What’s it all for?
We all know we’ll all die one day. Those of us lucky enough not to have a serious disease probably think about it less than those who do, but death is our common fate. For what it’s worth, there are many ways of measuring the ‘success’ of our time on earth. A couple of good metrics are how many people remember you, and how they remember you. When our bodies die, what remains is memories of us in the minds of the living.
For some, our memories of others fade as we get older. For others they become more intense. Both disappear altogether when our own time to die comes along. Other peoples’ memories of us follow the same pattern.
It’s natural for our impact on the world to diminish as the years go by after our deaths, and natural for proud sons to want to keep those memories alive for as long as possible, by any means possible.
Fanning the flames
It’s not just a proud son speaking when I claim Dad made a larger-than-average impression on just about everyone who ever met him. Mention Dr. Stern to any patient, carer, colleague, nurse, porter, or dinner lady who knew him, and you’ll see a smile.
And not just in his work life. Months after Dad died, I was sorting out papers in his study when the phone rang. The caller introduced himself as a local garden machinery dealer who’d sold Dad a mower years before. He was devastated when I broke the news of Dad’s death. He said he knew there was nothing wrong with the mower, but used it as a pretext to have a chat with Dr. Stern, because he enjoyed their conversations so much.
Ask people to list the people in their lives who’ve made the deepest impression, and first to come to mind and trip off the tongue tend to be famous people or big personalities. Before long, however, we start to name people who somehow made us feel more important, more meaningful, more listened to, and hence worth being listened to.
Being ‘larger than life’ is one way to make a lasting impression, but Dad was the other type. He had the knack of giving other people room to be themselves, to be heard, to speak uninterrupted and unconstrained, to feel ‘larger than life’ for as long as they were with him. People like good listeners, and remember them too.
The comic book pantheon, so far as I’m aware, doesn’t include Listening Man, or Empathy Woman. The ability to listen is one of our less obvious, more under-rated superpowers. Listening is a good superpower for anyone, but particularly handy for a doctor. Even more particularly handy for a neurological consultant specialising in ‘this cruel disease’, with it’s elusively broad range of symptoms, frustratingly diverse presentation, and still-mysterious origins, mechanisms and therapies.
Being a listening type, Dad wasn’t the kind of doctor Dad who ‘encouraged’ his children to become doctors. He preferred to help us find our own passions. My career has taken me into the completely different territory of journalism, filmmaking and climate activism. Setting up this group is a way for me, in a small, amateur way, to continue his life’s passion of caring for PD patients.
On medical matters, I seek advice on how best to moderate a PD support group from Dad’s younger colleagues, former students and protegés. I’m not the only one who likes the idea of keeping Dad’s memory alive, and they’re more than happy to give their advice. They too love sharing stories about him, and which we learned from him.
The clinical importance of storytelling
Like many eminent neurologists, Dad was an excellent teacher and storyteller.
Between listening, in response to what he’d heard, Dad had a knack of telling the right stories at the right time. In a lecture hall, in a corridor, on a bus, Dad would tell stories anywhere to anyone: colleagues, students, his children, mower salesmen. Whatever understanding I have of ‘this cruel disease’ comes from Dad’s stories. He was a modest man, and the punchlines to most of his stories were at his own expense, but all contained grains of wisdom that have stayed with me all my life. Few things give me greater pleasure than when I hear my children pass them on to their adult friends.
Among other things, I’ve recently started doing podcasts. The Truth Lies in Bedtime Stories, from See Through News tells ‘fictionalised true stories’ in bedtime-story-length episodes. Search podcast platforms for ‘bedtime stories’ and you’ll mostly find stories or sounds designed to help insomniacs get to sleep. The Truth Lies doesn’t deal in that kind of bedtime story. We aspire to kind that keeps you fighting sleep, begging to hear one more episode, pleasepleaseplease, just to find out What Happens Next, as I did with. my Dad (and Mum), and I’m sure you did with whoever told you stories in your childhood.
Series 1-3 tell stories I’ve encountered in my own life, concerning Mongolia’s only deep-sea navigator, Christmas Day in Beijing in 1984, and how The Three Brothers Wang survived 80 years of geopolitical dislocation. Series 4, which is about to launch, is one told to me by Dad.
The Quiet Revolutionary
When the mower salesman called, I was in Dad’s study going through the piles of research he’d accumulated on his own hero, the person whose eponymous disease dominated his professional life.
Series 4, The Quiet Revolutionary: the heroic role played in a plot to Assassinate the King by someone you’ve all heard of, is set in 1794 London. By now readers who know something about the history of Parkinson’s may have guessed the identity of the story’s hero, my Dad’s hero, and hence my hero’s hero.
I can, however, pretty much guarantee you won’t know this particular story about this person. Nor will the carers, nurses, social workers, family doctors or even consultants with whom ‘this cruel disease’ brings Parkinson’s patients into daily contact.
I know this because I’ve spent the best part of 20 years, in one form or other, trying to get people to fund a dramatisation of this story – including Parkinson’s UK. Now I have this podcast, I finally have my chance to tell this story for free, without requiring any funding.
Along with setting up this group, this podcast story is my humble, amateur way of trying to help. My only medical credentials being a doctor’s son, I can’t offer breakthrough research, miracle cures, or therapeutic advice. I don’t possess those superpowers.
I do, however, tell stories, and this one’s a cracker. At the very least, as you spend time with anyone, whether family members or medical professionals, you’ll now have this story to pass on. Though related to ‘this cruel disease’, listening to this podcast won’t cure it, diminish your suffering, or do anything much other than pass the time. But telling stories is what I do, and my way of honouring my father and his lifelong passion to help victims of ‘this cruel disease’.
So now you know the person and story behind the Facebook group, and podcast series. I’ll do my best to make the former a welcoming, helpful and practical place, and the latter a cracking yarn that will have you fighting sleep to hear What Happens Next, and itching to share it with your friends.
In the meantime, we’re putting the finishing touches on The Quiet Revolutionary, and hope to release Episodes One and Two before the end of January.
Robert Stern AKA SternWriter