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Parkinson’s and me: on good days I convince myself that life is as it was

Saturday, 17th July 2023. Katie Wilson, The Times

Gillian Lacey-Solymar was diagnosed at 48. A decade on, she describes her new-found creativity and podcast with Jeremy Paxman

This is not exactly a natural progression from my career as a former BBC business correspondent and management consultant — and all the more unusual after having had early onset Parkinson’s disease diagnosed at 48. Doctors call the first few years after diagnosis the “honeymoon”. My response then was that if this is the highlight of the marriage, get me a divorce ASAP. From the outset my symptoms developed quickly, my tremor so noticeable as to draw tuts from people under their breath for being “drunk at 11am” as I shook on the bus. But after that dark period a brighter world opened up: I began to experience colours, tastes and scents as I never had before. The theory goes that this is thanks to the medication, which shuts off any self-consciousness or concern that might otherwise hold you back from being totally absorbed in the moment.


Gillian Lacey-Solymar: “I have suddenly found myself writing poetry and short stories for the first time”


KATIE WILSON FOR THE TIMES 

A decade on I’ve come to see this as a significant silver lining of a condition with which I can be slumped in my chair like a vegetable one day then skiing over French mountains on another. Given that I never know which I’ll get, I grab every burst of inspiration when I can.

Since my diagnosis Mike, my husband of 34 years, has been my rock. Still, Parkinson’s can be unbearably lonely — especially in those moments when I am locked in, unable to move my body or speak yet hearing the world going on around me. Last year I read that Jeremy Paxman had been diagnosed with Parkinson’s and, since we had known each other a little during my BBC days, I called him up. We had lunch, comparing our respective lists of symptoms, and he later invited me to join Rory Cellan-Jones, the former BBC technology correspondent, and the judge Sir Nicholas Mostyn — both of whom have Parkinson’s too. It was Nick’s idea that we should make a podcast with our fellow sufferers Paul Mayhew-Archer, co- writer of The Vicar of Dibley, and another ex-Beeb colleague, the Radio 4 news presenter Mark Mardell. And so Movers and Shakers was born, in a quiet corner of a Notting Hill pub.


With the first series under our belts and recordings of the second under way, we have been amazed by its success. We all have very different symptoms, which can occasionally affect recording. There was one day where we recorded three shows, and when I tried to stand up and leave, my head slumped forward and I found myself frozen in my chair, unable to speak. The others were good about it, but they haven’t gone through it themselves: Jeremy, for instance, falls a lot, while Nick has nightmares. The cognitive symptoms often make recordings harder than the physical ones — we forget what date or time we’re supposed to be getting together.


My first symptom appeared in 2012 at the castle in Inverness-shire my husband and I had bought and turned into a wedding venue five years earlier. It was during a meeting when I had to let a staff member go and found my leg shaking uncontrollably. I put it down to stress, and when I did eventually get to see a GP they said there was nothing to worry about. When the shaking appeared again six months later I was referred to an NHS neurologist for a scan. The results were unambiguous: I was on the “Parkinson’s scale”. I asked the consultant what that meant, and he told me to look it up online: I saw pictures of people dribbling, incontinent and bent over in wheelchairs. It was horrifying. I haven’t looked up the condition on the internet since (my husband has taken on that task).


The diagnosis — and how dismissive that neurologist had been — left me in utter shock. Mike and I went home and told our three children, then aged 11, 16 and 20, and we all just cried together. When I told my mother she blamed herself. It transpires that her mother (my grandmother) had developed it at 49, almost exactly when I did. It can often present early, but doctors don’t know too much about why. My mother appeared to have skipped the condition — although she definitely had certain traits of Parkinson’s, such as anxiety, or leaning forward while walking — but she felt deep guilt for passing it onto me.

I now know there is about a 30 per cent likelihood of my children developing Parkinson’s. I’m bullish in believing that there will be significant strides in treatment by the time they might need it, if they do. You can screen for it, but my daughters don’t want to; my son is considering it. There’s nothing you can do to stop the onset — the best they can recommend is exercise to slow the symptoms — so I understand why my girls don’t want to know. I wouldn’t have wanted to either.


About 145,000 people in the UK live with Parkinson’s, the fastest-growing neurological condition in the world, but it typically manifests after the age of 60, with an estimated 5-10 per cent of people developing it before 50. It is caused by the death of dopamine-producing nerve cells in the basal ganglia (the area of the brain that controls movement), leading to symptoms such as tremors, falls and an inability to swallow. Genetic and environmental factors are thought to have an impact, but there is as yet no conclusive theory on the cause. People tend to die with Parkinson’s, not of it, but falls and choking caused by the disease aren’t uncommon.


At first I told only my family and two close friends, having been warned off sharing the news by my doctor, who said it would traumatise people, and that I’d end up comforting them rather than the other way around. In retrospect, keeping it secret for years was a terrible mistake. During one lecture to 200 UCL students while I was maintaining this enforced silence the pain in my feet was so unbearable I had to present on my knees, pointing my clicker at the screen to move the PowerPoint slides along, as if this was nothing out of the ordinary.


Since I began sharing my diagnosis a few years ago I have only felt relief. People are fundamentally kind when given the chance. I had to be honest about why I needed to give up my role as a lecturer, and why my daughter was to take on the running of the wedding venue: these things were simply no longer tenable when I could be in unbearable agony without warning, or my cognition was slipping.


The scariest thing about a degenerative disease such as Parkinson’s is that once things become bad they are unlikely to get better. That applies to the excruciating pain in my feet and hands, which involuntarily clench with force and can’t easily be unfurled, the hallucinations (mainly of a Venetian man who sits, cloaked, in the corner), constipation, wakeful nights, cognitive decline, apathy, loss of voice — truly galling for a former broadcaster — and inability to hold my head up at times (physically but not, I hope, metaphorically).

Other unwelcome side-effects can be gambling or compulsive shopping, or hypersexuality (my husband was intrigued by that one), so I consider myself rather lucky not to get those, but I have become overly sensitive and overanxious. Most bizarrely of all, perhaps, on my good days I experience none of the above and can almost convince myself that life is just as it once was.


I try to take a carpe diem approach — including learning Polish to strengthen my cognitive function — but there are limits: going for dinner is now a nightmare because I have 15 minutes in which to eat between rounds of medication (I take them every two and a quarter hours and can’t consume anything for an hour before or after). My morning swims at the lido near my home in Belsize Park are a balm, but I once nearly drowned in the sea when my limbs suddenly seized up. For my upcoming 60th I am throwing a Venetian-themed party in a nod to my hallucinated friend, but there’s no telling when these “up” moments may be taken from me too.


The thing that has been most transformative since my diagnosis is deep brain stimulation — an operation where they put electrodes in your brain to change the signals that cause irregular motor movements. I waited a year for NHS surgery in 2019: privately the op costs upwards of £80,000. It was like night and day: after surgery the tremor went, as did the unbearable pain. It’s not perfect, and some of the symptoms have returned in part, but it has changed my life. It’s bizarre, but it honestly feels like magic. Or, as my surgeon, Professor Ludvic Zrinzo, head of the UCL functional neurosurgery unit, told me: “Better than magic: science.”


Professor Zrinzo has featured on an episode of the Movers and Shakers podcast — we’ve broadcast 12 episodes so far. We talk about how Parkinson’s has affected our everyday lives; about drugs and operations, and how we’re coping with the huge changes the disease has caused. Silver linings haven’t come up yet, but perhaps they will (although I know Jeremy doesn’t see any). The number of emails and messages we get from listeners has blown us away: it means so much to each of us, knowing that we’re putting Parkinson’s in the spotlight. We’re doing a live recording at Middle Temple in September, and the tickets sold out almost instantly. I can only hope that Irrepressible, the musical I’ve written (in another bout of Parkinson’s-inspired creativity) about Emma Hamilton, Nelson’s mistress and possibly the world’s first celebrity, is half as big a hit. We are taking it to the Fringe in August and I’m hoping that people will be intrigued by its mixture of contemporary press issues and the biography of an amazing woman. We’re funding it with the director, and are thrilled to have found a really strong cast of five as well as two incredibly talented composers.


It is enormously gratifying to watch these projects come to fruition, to take on totally new things and prove to myself that I can (or at least try to) make them a success. I haven’t asked my doctors what my prognosis looks like. I suppose I haven’t been brave enough. If someone could wave a magic wand tomorrow and make my Parkinson’s disappear, I would take them up on it. But if it meant that the creativity would go too, I’d have to think about it for a little while first.


As told to Charlotte Lytton. Irrepressible will be at the Edinburgh Fringe August 14-26, highdramaproductions.com, edfringe.com


The Times 

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