‘I was so frightened in every sense – I couldn’t stand’
Ex-hollyoaks actress Lysette Anthony bravely opens up to us about her Parkinson’s disease diagnosis, the moment she told her son and why she doesn’t want to know her prognosis
Actress Lysette Anthony has been bravely and privately battling Parkinson’s disease for six years. As she reveals her health struggles for the first time at her home in Liverpool, it’s sadly clear she is already displaying symptoms of the debilitating condition.
When Lysette welcomes us into the quirky three-bedroom home she shares with her teenage son Jimi, she looks tired and is slightly unsteady on her feet.
“I didn’t get enough sleep last night as I’m feeling a bit nervous about today but it’s fine. The most difficult things are often taking three little steps,” she tells us. “And I’m also so tired. My symptoms have got worse.”
Lysette, an actress who at the height of her fame starred alongside John Travolta in Look Who’s Talking Now, was diagnosed with the brain disorder at the age of 52 – making her one of an estimated 145,000 sufferers in the UK.
Despite appearing slow on her feet and taking a break to have a 45-minute nap during our lunch in the middle of the shoot, Lysette, now 58, tells us she is feeling considerably better than she did just two months ago. At the time, her health declined so much she thought she was dying.
“At Christmas it was so bad,” she explains. “One of the symptoms you can get is muscle freezing. You cannot move but then you just get this rush of smoke sound inside your ears and then you fall and knock yourself down.
“I thought that was it. I couldn’t get off the couch. I was so frightened in every sense. I couldn’t stand. I had to crawl to the loo – it took 45 minutes just to get there and it’s only around the corner.
But I’d be damned if I wasn’t going to do it myself.
“I remember thinking – and here’s a profound thought – ‘This is it. If I don’t keep breathing, I’ll be dead’.”
After battling the disease – the fastest growing in the world – for more than half a decade, Lysette now feels ready to tell her story.
She has been inspired by the experiences of fellow sufferers Michael J Fox, Ozzy Osbourne, Jeremy Paxman and Billy Connolly – in fact, it was listening to the comedy legend on Desert Island Discs that made Lysette realise she had symptoms.
“I just thought, ‘That’s what I’ve got.’ I just knew it,” she recalls. “I did what I normally do and made sure I knew as little about it as possible.
I thought, ‘What’s the point? I could lose the power of my neck, I might not be able to speak, walk or even have a wee and that’s not exactly pretty.’ So I didn’t go [to the doctor] soon enough. But then, eventually, I went [and they] said
I was too young, or that it was probably a trapped nerve. In the end they gave me a brain scan and you don’t get away from a brain scan.”
Heartbreakingly, Lysette was on her own during the appointment at University College Hospital in London when doctors told her the devastating news.
“They said, ‘You’re right.’ I thought, ‘Is that a win or a loss?’ And then I rang Jimi’s dad [film composer Simon Boswell] and told him…”
At this point during the interview, Lysette begins to cry. It’s clear the shock of her diagnosis, coupled with the fact she’s kept her health battle a secret for so long, is weighing heavily on her.
“The prognosis is not great, but that doesn’t mean that is going to be it,” she continues. “The prognosis is you lose control of the body you’re in.
“One of my cousins, Peter, is a colonel in the medical corps of the army and he said, ‘The medicine works really well – and after that, you’re f **** d!’ But we’re not going to get there.”
Lysette’s outlook is refreshing and she makes us giggle when throughout our chat she refers to her condition as “Parky”. “I also call it Parky because it amuses me,” she tells us. “I’m not exactly thrilled, but, to be honest with you, I’ve made my peace in many ways.
“If I do too much, it will basically shut me down and my hands won’t work. It’s not pretty and it’s not great to be approaching 60, but I’m looking to enjoy my world.”
Looking back, Lysette concedes the symptoms appeared long before her diagnosis when she was touring the country in a theatre production of Agatha Christie’s Go Back For Murder.
“I would get very nervous before going on stage anyway,” she explains. “I was shaking. I was on tour with the glorious Sophie Ward and Liza Goddard and they both said, ‘It’s sometimes like you don’t own your hands’. I started realising it was getting worse.”
Lysette says her biggest hurdle was breaking the news to her son, who lives with her and her three cats in her home, which was once a boxing club.
“He is my life. I didn’t worry about telling him. I’ve always told him everything,” she says. “We talk things through. That’s what I am proudest of, he comes and talks to me about it all. But it’s been very tough on my son and he’s been amazing.”
Lysette pauses, smiles, then wryly with a breath says, “However, I think we can safely say Jimi Boswell is not cut out to be a nurse. He has other skills, but nursing is definitely not one of them. One day I’d run out of medicines and he got back from school to find me lying on the floor, he sighed and he basically just stepped over me. But it’s quite refreshing, as he gets bored of it – but not as bored as I do.”
Lysette’s former Hollyoaks co-stars also became a pillar of support for her while she juggled filming and hiding her worsening symptoms from those who weren’t in her inner circle.
“I was diagnosed the same week I was offered the job at Hollyoaks [as Marnie Nightingale]. But needs must, I’m a single mum. Also, denial is a marvellous way to pass the time. I had to work, and I’m glad I made that decision.
“The one person that knew at the beginning was Greg [Finnegan] who played my on-screen son James. That’s why Marnie and James were so close – because he was literally dragging me from one set to another.”
Wiping a tear from her face, she goes on, “Then I went to each and every one of the cast and told them. People were shocked and people would cry.
“There was an amazing girl on Hollyoaks called Amy Conachan [who is in a wheelchair]. I told her quite early on, too. She said, ‘I’ve been born with a disability, I wouldn’t change anything, but you’ve got to learn.’ So it’s time for me to face it.
“In the past 18 months I thought if I decided to speak out about my diagnosis, I’d lose my job,” Lysette says, explaining why she feels it’s the right time to break her silence.
However, undeterred and with a steely attitude, Lysette reveals she is keen to get back to work and that her condition shouldn’t hold her back. “I worked on Hollyoaks for six years with Parkinson’s and hardly anyone knew.”
The star is now managing her “Parky” with regular medication, including beta blockers and dopamine, showing us the stylish pill box she has in her living room where she keeps them hidden.
She’s also relying on various tips she has picked up on Instagram to keep the pain at bay, including finding inspiration from Dutch extreme athlete Wim Hof, aka The Iceman. In fact, she even takes two ice baths during our shoot to keep her muscle aches at bay.
“If I’m slow at getting going, I have an ice-cold bath – hey, Wim Hof! It’s an adventure, especially in Liverpool on a winter’s day,” she giggles. “And there are other things like breathing properly and my bendy chair to stretch the muscles in my back. I’ve also found I can unscramble the twist of muscles by going to the chiropractor where they basically beat me up professionally, or doing stretches.
“And I know why Katharine Hepburn [who had an essential tremor] was a fan of swimming – because it really works and helps when the neck seizes up.”
Lysette says she’s also counting on her “sheer will and determination” quipping that she “has that in spades”. And she’s well practised in those two attributes, having overcome many heartaches in the past.
Lysette was brought up in a convent and endured the torture of seeing
her mother Bernadette sectioned after she was plagued with mental health problems, including manic depression and schizophrenia. Bernadette later suffered a heart attack while holding a lit cigarette, tragically burning to death in her home.
In 2017, Lysette also bravely spoke out against disgraced movie producer Harvey Weinstein.
Addressing the fact that she’s stared adversity in the face time after time, Lysette says, “You either live or die, don’t you? But I think it’s being a mother. It comes with the territory.
“And I was brought up by nuns, so it might as well come in handy now – you’ve got to have a little bit of faith.”
She’s keeping that same glass half-full attitude as she prepares for the rest of the world to know about her health battle.
“I can’t afford to think past this week, or next week but I just want to do the best I can and not give up because it’s called being alive, isn’t it?” Lysette concludes, explaining she also hopes to make a documentary about her experience.
“I’ve decided to speak out because there’s no cure, and I want to be part of the cure.
But looking at Billy Connolly and the work of Michael J Fox, who both have Parkinson’s, I want to step up to the plate.
“I would not swap my world now, although I could do without the pain. Now that I’ve accepted it, it’s such a relief not to have to hide it any more.”
‘I’ve made my peace in many ways… I’m looking to enjoy my
world’