Each week Rory Cellan-Jones guides us between the laughs and moans in the pub. Here is Rory's summary of this week's episode.
We are now nearing the end of the second series of Movers and Shakers and although we have had plenty of laughs along with the moans, we have struggled to find much that is positive to say about Parkinson’s. But this week is different. We are celebrating one unexpected side effect of the drugs we take - a burst of creativity.
This is something a number of the Movers and Shakers have themselves experienced. The most striking example is Gillian Lacey-Solymar who has written a musical about the indomitable Emma Hamilton, Lord Nelson’s mistress, and seen it performed to great acclaim at the Edinburgh Festival. Paul Mayhew-Archer has toured the country with his one-man show about Parkinson’s, Mark Mardell tells us he is writing poetry and as for me, well I may not have mentioned this, but I have written a memoir about my mother and my childhood, Ruskin Park: Sylvia, Me and the BBC.
Nicholas “the Judge’ Mostyn and Jeremy Paxman seem less convinced that Parkinson’s has got their creative juices flowing. But it is only fair to point out that this podcast only exists because the judge bullied and browbeat us into it and that Jeremy’s mordant observations have been a key factor in its success.
So is there any science behind the idea that Parkinson’s drugs can spark creativity? We are joined again by Professor Alastair Noyce who told us in last week’s episode that drugs called dopamine agonists, designed to help us move better, could affect other “pathways” of the brain producing negative side effects such as compulsive behaviour. But this week he said there could be positive effects on the brain too:
"When you throw a dopamine agonist into that you improve the movement, but you overcompensate in some of the other pathways, and the happy side effect of that may be increased creativity."
And we have two brilliant guests who have both achieved amazing things since being diagnosed with Parkinson’s. Samuel Smith was a high flying BBC News producer, then an executive at a ritzy PR firm, but his secret passion was music - he was what you might call a serious amateur, a singer-songwriter occasionally playing in a band, and from a family with several professional musicians.
But when he was diagnosed with Parkinson’s aged just 44, the music just stopped: "The six months after I was diagnosed, I couldn't play. I’d look at my arm and it just wouldn't move." He says he felt he had lost the biggest part of him. But the thought that his new baby son might never see him play made him pick up the guitar again - and then it became an obsession: "I was playing 14 or 16 hours a day when it started coming back. Part of that was the reality of I don't know how long I've got to be able to do this….So there I am, six months after diagnosis, I can suddenly play again, it's like being pulled out of the water."
He had to learn to play differently, not so fast, and physically he reckons he is at about 70% of his capacity before Parkinson’s . But that too had its upside: "I adapted musically, I was suddenly playing rhythms and styles of songs that I'd never even thought of before. And my songwriting is 10 times stronger than it was when I had all the freedom of the full palette….'This is where you can play' my body is saying, 'this is what you can do'. And I've pivoted to that, and it's unlocked something completely different."
It also gave him the confidence to do something that he would never have dared do before his diagnosis - contact some of his favourite artists, Grammy award winners, to ask them to record an album with him. "And honestly everyone said yes, 27 Grammys on the record." Sam sums up his remarkable achievement as "creativity coupled with I don't give a damn."
Our other guest would probably agree with that. Martin Pickard has become a poet since his diagnosis and launched a site for fellow poetic Parkies. He was diagnosed over the phone during a Covid lockdown and had no access to any Parkinson’s support services or anyone to talk to about it. "I took to poetry as a form of therapy to start trying to get my head around it," he says. "It just started flowing out of me."
In his former life as a management consultant he had ambitions to write something rather different - a book about facilities management: "But sitting down, having had to give up work, I couldn't write a book to save my life, I just can't organise my thoughts sufficiently. But I can do a page - so my thoughts went on a page because that's how long a poem is. I was grieving for the business life that I had before, stuck at home doing jigsaws and watching 'Cash in the Attic.' Now I'm writing poetry."
Soon he found others like him:"I discovered this whole community of creative people with Parkinson's." Martin started a website, Poets Wall, and has built a thriving community with all kinds of Parkinson’s poets. Some who had never written verse, others like Martin, who remembers that back in the 1960s "he used to scribble out some hippie nonsense", had written before and were rediscovering it:
"Whether you're driven to it by the obsession that had you waking up at night trying to think of a rhyme for dystonia, or whether you're doing it just to get your head around this amazing dramatic change that's happening to your body, it's worth doing."
There are probably other reasons than just a side effect of the drugs that many of us become more creative after a Parkinson’s diagnosis. Insomnia means I often find myself writing in the early morning and in our WhatsApp group Gillian will often pen a limerick at 4am. Then there is the idea that all great art comes from experiencing trauma - and being told you have an incurable degenerative disease certainly counts as traumatic. But I hope you will agree, having listened to Samuel and Martin’s inspiring stories, that Parkinson’s can be the inspiration to take your life in a creative direction you never quite dared to go before.
This week's main guests:
Professor Alastair Noyce
Alastair Noyce is a Professor in Neurology and Neuroepidemiology at the Centre for Preventive Neurology, Wolfson Institute of Population Health, Queen Mary University of London, Deputy Centre Lead, and a Consultant Neurologist at Barts Health NHS Trust.
His research group at the CPN focuses on Parkinson’s disease and other neurodegenerative disorders, particularly early identification, and epidemiology, which includes environmental, clinical and genetic determinants. His group receives funding from Parkinson’s UK, Cure Parkinson’s, Barts Charity, Michael J Fox Foundation, Aligning Science Across Parkinson’s and Innovate UK.
He leads the PREDICT-PD study and he is the Principal Investigator on the East London Parkinson’s disease project and the Access PD study. He is a steering committee member of the Global Parkinson’s Genetics Program and leads a focus on the genetics of prodromal PD and the Training and Networking group. He is Chair of the International Parkinson and Movement Disorder Society Epidemiology Study Group, a member of the MDS prodromal sub-committee, the Early Onset PD Task Force, the Equality and Access Committee, a member of the International RBD Study Group, and faculty for the MDS LEAP leadership program. He is Associate Editor of the Journal of Parkinson’s Disease.
For more information visit QMUL
Samuel Smith
Samuel Smith was a high flying BBC News producer, then an executive at a ritzy PR firm, but his secret passion was music - he was what you might call a serious amateur, a singer-songwriter occasionally playing in a band, and from a family with several professional musicians.
For more information about Samuel Smith click here.
Martin Pickard
Martin Pickard is a performance poet and one of the co-founders of Poets with Parkinson’s, an international poetry collective for poets affected by the incurable neurodegenerative condition. He finds poetry a helpful therapy and a tool for advocacy on behalf of the Parkinson’s community. After a 50 year successful career in the facilities management industry Martin experienced a creative surge following the onset of Parkinson's in his mid 60’s and now performs at poetry events as a "shaken word artist." Martin lives in a Bedfordshire village with his wife and cocker spaniel. You can find his poetry at www.poetswall.com and on social media as The Shaken Word.
Youtube @theshakenword7438 Twitter @theshakenword Insta @martin_pickard54
TikTok @theshakenwor
Poetry Corner - Gillian Lacey-Solymar
COMING TO TERMS
“You’ll come to terms with the illness one day”
So they say
At first I believed them.
Acceptance is the only route
Go for the low hanging fruit
Contemplate, meditate
And then…?
Oh then, well simply wait.
I did.
One year, two years
Three and four
Getting more and more unsure
What it is I’m waiting for.
Five six seven, eight nine ten
By then things were not so zen.
And then came year eleven
With which nothing rhymes.
And guess what? It was me.
And then it came.
Freshness born from heavy rain
All the tears had in a way
Formed their very own cliché
Which itself was washed away
Suddenly.
[I thought by then
that I had grown a
shell,
But in busy Barcelona
it hit me hard as hell
At a session full of passion. Subject: creativity]
Was it an epiphany?
Or something fleeting, temporary
Don’t know. Can’t know. Possibly…
It comes through hearing others’ verse
Some sublime some rather worse
For wear
Who cares. It moves me
Proves to me
That others in a similar state
Somehow manage to relate
To the illness without fury, bitterness or worse.
They don’t think it a curse
So nor should I.
And so it goes.
And so…
I try.
Watch a clip of Gillian's musical IrrePRESSible here
To watch the full performance click here.
Comments