Living with the Shaking Palsy

First published in the NASGP Newsletter on 7th November 2022

On his last tour, before Parkinson’s led him to retire from the stage, Billy Connolly’s greeting to his audience was “Good evening, symptom spotters”.

We doctors are trained to spot symptoms and inevitably we take our experience into our private life. A neurologist watching a live broadcast by BBC technology correspondent Rory Cellan-Jones emailed the BBC asking them to pass on his advice that Cellan-Jones see a specialist about his shaking hand. Jeremy Paxman was walking his dog when he collapsed. The doctor who saw him in A&E had watched University Challenge and noticed that Paxman’s face was becoming less expressive. He told him “I think you’ve got Parkinson’s”.

It’s the movement disorders that attract attention. After all, James Parkinson called it the shaking palsy. And it’s the tremor that I remember from my medical student days. I didn’t hear much about the non-motor manifestations and I suspect that as a GP I didn’t think to enquire. The movement disorders are emphasised in GP Notebook but the many other problems that PD can cause – and which may be the dominant manifestations – are tucked away in a short paragraph. People with PD have contributed articles and videos for the Parkinson’s UK website. Very useful for the interested public, but only GPs with a special interest are going to spend time going through them. So, what’s it really like to live with Parkinson’s?

It’s well-known people like Connolly, Paxman and Michael J Fox, who are prepared to go public and tell us. Fox is now 61. Much of his acting career postdates his diagnosis at the age of 29 and his four children have never known him without Parkinson’s. In his book ‘No Time like the Future’, subtitled ‘An Optimist Considers Mortality’, he reflects on his life with Parkinson’s. His stories are amusing, insightful, informative and thought-provoking. I recommend anyone, doctor or not, to read it.

Take your medication before an interview and some people think that you are exaggerating your problem, he says. Don’t take it and other people think you are putting it on for show. People mistake the mask-like expression for indifference or rudeness. They don’t realise that unpleasant sweating can be a symptom of Parkinson’s, as can pain. Bladder, swallowing and bowel function can all be affected. And more difficult to manage if your coordination is shot. Silly walks are no joke unless you’re John Cleese.

PD makes contracting any other illness more challenging. A sneeze can trigger a fall. A fractured arm changes the dynamic of your body – the weight and restricted movement of plaster mean you have to recalibrate every action. It took some years for the symptoms of an ependymoma on Fox’s spine to emerge from the neurological clatter of his Parkinson’s. By then it was so large that surgery was very risky. The operation was successful, but afterwards it took two years of gruelling therapy before he regained at least some independence.

For Paxman, trying to put a key into a lock is a fencing contest. Fox describes his condition by saying his brain and his body are barely on speaking terms. Getting up from a chair to pick up a cup of coffee from a table requires careful planning. How to stand up, on which leg, how to regain balance, whether to take the shortcut to the table or the safer route of cruising along the wall, how to stand at the table, how to pick up the cup, in which hand, when to turn around, whether to go straight to the chair but risk staining the carpet if the cup spills if you fall, or to take the long route where a spill can be easily wiped up. How to control the wobble as you sit down. Hopefully, there is some coffee left by the time the manoeuvres are completed.

L-dopa therapy still has a mystery element. Patients and I puzzled over dosage regimes. There are now around a dozen other drugs which may help. Or may not. And all can have worrying side effects. Hallucinations and compulsive disorders are a heavy price to pay, though one that patients may be prepared to risk.

Neither have non-drug treatments provided more than temporary or occasional relief. As a GP registrar I sat in on my trainer’s consultation with a middle-aged man who was enquiring about foetal cell transplant. An experimental therapy freighted with moral qualms at the time. Deep brain stimulation is invasive but does help some patients, at least for a while.

Whatever compound Joy Milne is detecting could be a game-changer.

What hope for the future? Fox founded the Michael J. Fox Foundation in 2000 to help fund research. He succeeded in reversing the Reagan/Bush ban on stem cell research; interestingly, Nancy Reagan was on his side. A cure still seems a long way off, though research is shedding glimmers of light, improving our understanding of how the brain works and the role of cell death, and there is now growing interest in underlying metabolic changes. The hormone irisin may play a part. And what about that woman who seems able to reliably smell people with Parkinson’s. Whatever compound Joy Milne is detecting could be a game-changer.

Meanwhile, even with Parkinson’s, exercise can boost your spirits and your physical condition. Fox took up golf, Robin Buttery joined a four-man team rowing from Australia to Mauritius. Paxman allowed himself to be filmed joining English National Ballet’s dance class, and once he overcame his reserve admitted he had enjoyed it and felt better for it. After saying he’d never play bowls he had a go and then joined a Parkinson’s bowls club. There are PD choirs. Watching a conductor at a Proms concert dancing on the podium and using a tremble of his hand to indicate a quiet passage I wondered whether conducting would be an ideal activity. Though an overdose of L-Dopa might twist Chopin into Stockhausen.

The prevalence of PD is second only to Alzheimer’s. Around 10 million people worldwide face, in Fox’s words, going “straight from young to old”. The heartiest optimist will at some stage be ground down by Parkinson’s. ‘Get Well Soon’ messages grate when you know that the only future is down. But sharing experiences with others who are struggling with the same challenges is important, and even Paxman, the professional grump, manages a few jokes at his own expense. Candour and humour help others to recognise the person behind the disease.

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