RORY CELLAN-JONES on why keeping your sense of humour is vital when you have Parkinson’s

Ask anyone about Parkinson’s disease and they’ll probably say that the primary symptom of the condition is physical trembling. Hardly anyone would talk about shaking with laughter.

However, I strongly believe that maintaining your sense of humor is vital when you have this condition. I have now been four years into my own diagnosis of Parkinson’s, which came in January 2019.

Parkinson’s leads to the destruction of cells in the brain that produce dopamine, a chemical messenger crucial for movement. There are up to 40 possible symptoms, including trembling, stiffness, balance problems, loss of smell and depression.

But I’m fine and I see it on the bright side.

When I meet up with old colleagues from my days as a BBC technology correspondent for a drink, I tell them I’m still willing to stumble over to the bar and buy a round. But if they want a full pint, they’d better choose the glass I carry in my left hand than my trembling right hand.

Humor is ubiquitous in the new weekly podcast I’ve just launched, along with high-profile friends who all live with Parkinson’s. These include BBC presenter Jeremy Paxman, The Vicar Of Dibley co-writer Paul Mayhew-Archer and Supreme Court Justice Sir Nicholas Mostyn.

We call it Movers And Shakers. But there’s a serious angle to it — it’s designed to boost fundraising for Parkinson’s and raise awareness about it.

One thing we’d like to make clear is that Parkinson’s, which affects around 145,000 people in the UK, is much more than being unsteady on your feet – the non-physical symptoms such as depression and insomnia can be the hardest to bear.

The podcast came about after an old colleague, Radio 4 presenter Edward Stourton – who lives with prostate cancer – invited me to meet Sir Nick as he had been diagnosed with Parkinson’s and was in bad shape with side effects from the medication.

Nick is a vibrant character and we started meeting regularly. He seems to know absolutely everyone and one day asked if Jeremy Paxman, who I knew only nodded nervously in the elevator at work, could come along.

Next up was comedy screenwriter Paul Mayhew-Archer, who is in his late sixties and has had Parkinson’s longer than we have (he was diagnosed in 2011).

An extremely funny man, Paul is an unlikely evangelist for ballet lessons as therapy for the disease.

Then BBC radio presenter Mark Mardell, who was diagnosed last year, joined after I told him about the group, and Jeremy Paxman invited Gillian Lacey-Solymar, a businesswoman and former BBC correspondent. She developed Parkinson’s disease at an early stage when she was only 48 years old.

During our regular drinks we talked, rather haphazardly, about doing a podcast together. Then, rather chaotic, we finally worked it out.

We’ve now shot four episodes, covering everything from Parkinson’s and sex and shopping links to nutrition, exercise and cutting-edge research.

We also interview experts and look at the life-changing implications of the condition.

Mark Mardell talks about facing the fact that Parkinson’s makes his voice weaker. Jeremy Paxman uninhibitedly expresses the anger and frustration that everyone with Parkinson’s gets.

Paul Mayhew-Archer, meanwhile, is the ideal foil for Jeremy as he is the glass half full to Jeremy’s glass half empty.

In one episode, Gillian Lacey-Solymar explains how the side effects of women’s Parkinson’s drugs – which increase dopamine (a reward chemical) and drive people to irrationally chase short bursts of pleasure – may differ from those of women. men: while the guys can become gamblers or porn addicts, women can become online shoppers.

Thankfully, the medication hasn’t affected me that much, but there’s no denying that Parkinson’s is a degenerative disease.

The first three years after my diagnosis seemed stable. My main symptoms were weakness on the right side, trembling and poor sleep. But in the past year my right hand has become uncontrollable and spasms.

I am right handed. My handwriting was never good and now it’s just awful, just like my typing. This is difficult for a communicator. I now use speech recognition software for things like composing emails.

Just got back from a skiing holiday – sadly it will be my last. Stress made my Parkinson’s symptoms worse and I ended up in a vicious circle, because my legs wouldn’t do what I wanted them to. Such setbacks are unfortunate, but I maintain a positive outlook – not least because I have a condition I consider much more threatening.

In 2005 I learned I had a rare cancer, choroidal melanoma, growing near the retina behind my eye. The cancer can spread with deadly consequences, but is kept under control. I’ve had proton therapy for it, a form of highly targeted radiotherapy that zaps the tumor.

I developed a side effect of that, a form of glaucoma called neovascular glaucoma, in which new blood vessels grow and increase the internal pressure of the eye, threatening the optic nerve.

The treatment is not very pleasant – injections in my eye. But that eye is useless anyway because of another cancer treatment I received in 2005: brachytherapy, which involves placing a radioactive disc behind the eye; it continuously emits radiation while in place. It shrank the tumor but destroyed my central vision.

Parkinson’s disease doesn’t seem so catastrophic in comparison. In total I now take 12 tablets a day and I use an app on my smartphone to remind me what to take and when, at 7am, 1pm, 3pm and 7pm.

I take Sinemet twice a day, which contains levodopa. This is converted into dopamine in your brain and thus reduces symptoms.

I also take ropinirole which works by acting instead of dopamine. I recently started taking entacapone, which is supposed to counteract the stiffness you get when other medications wear off.

The pills really do make a difference, but one problem is measuring how much. You only see a consultant once a year and they let you do some practice to score your skills, but it’s only a point in time as your symptoms can fluctuate significantly.

To help doctors develop better knowledge, this week I’m going to be a guinea pig in an experimental garden at Imperial College London. I will be in a mock-up studio flat, allowing scientists to study my behavior in a domestic setting.

They will observe my symptoms throughout the cycles of my taking the drugs and wear them off as I perform cognitive and physical tests and daily activities such as making a cup of tea.

Meanwhile, I have my own home tech experiment going on. I have been wearing a vibrating device called CUE1 since its launch last October.

It’s the size and shape of a small yo-yo and it’s velcroed to my chest. The buzz it emits when pressed is meant to stimulate the nervous system and parts of the brain responsible for motor and balance control. It should help reduce movement problems in people with Parkinson’s.

Some say the UK-designed gadget has enabled them to walk more easily. It may work for some people, but I’m not sure it’s been effective for me. I’ll hold out for a while (it costs £295 and there’s a long waiting list – I haven’t paid).

Meanwhile, there is a budding star in our household: Sophie, our new rescue dog from Romania.

She has become huge on social media. I adopted her in December 2022 after she was abandoned by a vet in Romania and taken to the UK in a van by a charity. She lived in a barn and had never lived in a house before.

Sophie spent the first five weeks here behind the sofa, too afraid to be touched or to eat from her bowl. People have become fascinated with her faltering progress.

Since I started posting about her on Christmas Eve, my Twitter account gained 100,000 new followers. A short video, posted three weeks later, of Sophie being caressed slowly and gently by my wife, the economist professor, Diane Coyle, was loved by over a million people.

Tweeting about Sophie is great, but there’s a certain amount of pressure. If I don’t post about her at eight every morning, people will want to know what’s going on. I look forward to dog walks once Sophie is brave enough to go outside. Exercise is an essential part of my regimen. It is good for my mental and physical health.

Parkinson’s doesn’t stop me from enjoying a Pilates class or a session with my fitness trainer Wendy.

My biggest ambition is that one day I will happily go after a ball with Sophie. Forward and Up!

Movers And Shakers is available on Apple podcasts and other platforms.