'No one knows about tomorrow': Doctors living with Parkinson's

Jonny Acheson suspected something was amiss when he fell asleep at Leicester City Football Club, in a stadium packed with 32,000 fans. It was 2016, the year Leicester won the Premier League.

It had been easy to put the fatigue down to long hours and stress at work; he was – and still is – a consultant in emergency medicine. Then his in-laws commented he ‘wasn’t quite himself’ and his foot developed a strange tendency to scuff the ground when he was walking.

When he noticed he couldn’t rotate his left wrist quickly, he went to his GP. ‘I knew there was something wrong: I just didn’t know what.’ His wife, a psychiatry trainee at the time, knew why Dr Acheson was booked in for a dopamine transporter scan before he did.

Diagnosis of a progressive neurological disease such as Parkinson’s is a shock for anyone. It demands a reassessment of life, a reprioritising and a continual readjustment. Dr Acheson was just 41.

Parkinson’s poses particular challenges: it is sometimes a lonely place to be – especially when your job is caring for others. This is why Dr Acheson set up an online support group for health workers such as him navigating the disease and its progression. 

He would never have imagined that, four years on, it would have more than 50 members. 

Parkinson’s, which affects dopamine-producing neurons in the brain, tends to develop gradually.

As with Dr Acheson, Panna Katechia, a GP based in St Albans, found its symptoms were easily mistaken as inevitable consequences of NHS working conditions.

She had noticed slowness and stiffness but working as a full-time GP with two young children and a brisk social life provided ample distraction.

Dr Katechia (pictured top) also sings in a Gujarati folk band. It was only when she stood in for the keyboard player that she noticed the little finger on her right hand ‘just wouldn’t play the key’.

‘I didn’t suspect Parkinson’s but I did suspect it was coming from my brain,’ she recalls. ‘At the very first neurology appointment, I even said: “My writing’s so tiny, like a patient with Parkinson’s.” The words almost echo in my ears now.’

Her diagnosis of early onset Parkinson’s came two days before Christmas 2023. She was 37.

‘Everyone has a slightly different reaction but mine was relief. In terms of brain diseases, I've seen nasty stuff which progresses much quicker and has significantly worse outcomes. Objectively, I'm pleased it is Parkinson's. Subjectively, I am devastated: it has changed my entire life.’

Even Richard Prettyman, who counted Parkinson's among his clinical special interests as an old-age psychiatrist, had not recognised his own non-motor issues as symptoms of the disease.

The pandemic had been ‘bracing’, and a change in role to liaison psychiatry at his general hospital in Leicester had isolated him from specialist mental health colleagues. When he went on sick leave for depression, he presumed he was ‘tired and run down’.

He had wondered if some of his motor symptoms might be Parkinson’s but another consultant had ruled that out.

Diagnosis, when it finally came, coincided with his planned early retirement at 60. Medication to increase dopamine levels was a revelation.

‘I realised, soon after I started some treatment for Parkinson’s, that [depression] was all part of a [Parkinson’s] prodrome because my mood symptoms, my energy levels and fatigue improved enormously and really quickly. I had more energy than I had had for probably five or 10 years.’

Moving on to medication is often a game-changer but it is rarely a cure-all, as Paddy Sutton knows full well.

Dr Sutton, a stroke consultant based in Norwich, had had post-viral fatigue before the pandemic. He had partially recovered, then slowness and fatigue returned in 2023. ‘One day I was walking down the road and saw my reflection in a window, and thought, “That’s my mother.” She had young-onset Parkinson’s so I twigged that was probably what was going on.’

While his medication means he can do far more now than he could three years ago, its effect tends not to sustain him for the full working day. Stress can drain dopamine levels quickly and unpredictably – orthostatic hypotension can strike at any time.

‘I’ll be in the middle of ward rounds and run out of steam, or when I stand up from sitting down, it looks like I’m about to pass out and go white as a sheet.’

Adjustments have been necessary and tweaks are continuing. He now works four days a week and focuses on rehab, clinics and teaching. 

Dr Acheson has asked his occupational health department for changes, too. He now works in an observation ward in the emergency department, where there are fewer beds, fewer deadlines and more routine. He no longer does on-call, weekend or night shifts or has to work in the more stressful parts of emergency medicine, such as ‘resus and children’.

‘Whenever you were trying to put a cannula in for a child, they would be crying and screaming, burning up my dopamine, and I was trying to take blood, the syringe shaking, and the parents were looking at me as if to say, “What on earth are you doing?”’

He still works the same 10-hour programmed activity contract as other consultants but in five-hour slots. He knows he is fortunate. Such adjustments would not have been possible at a hospital where he worked previously.

Dr Katechia recently left the NHS, which felt like a ‘bereavement’. She now works in private practice, still five days a week but at a slower pace and not during school holidays. She stopped out-of-hours work early on because her symptoms afterwards would be ‘horrendous’: nightmares, insomnia, palpitations, anxiety, ‘and my arm felt like it was stuck in a concrete box’.

Always alert to new symptoms, always thinking ahead, she is determined to keep her sense of humour.

‘I still do all the intimate examinations and I’m hyper-aware if I’m having a bad day. If my arm is tremoring a little bit, and I’ve got my finger up someone’s bottom, it is quite awkward. No one’s mentioned it yet – but I wonder if they notice.’

Having empathetic colleagues makes a big difference. The nurses on the rehab ward will check Dr Sutton has had his meds; Dr Katechia has a colleague who does the same for her.

But being a senior doctor can sometimes make it hard to talk about your own needs. It took Dr Sutton a while to share his diagnosis with the wider team – and he admits he still doesn’t take the breaks he should.

‘I told a couple of people initially but I just wanted to hide it more than anything else, and wasn’t ready to talk about it. It is not something I am embarrassed of. I just don’t want to have to explain it to everybody all the time.’

He suspects, however, they had already guessed why he sloped off to the kitchen at 11am and 3pm. ‘When I started taking the tablets, the nurses started going, “You're looking really well today”, or, “You look about three inches taller than you normally do”, presumably because I had stopped stooping.

‘They would see me shuffling like an old man, and then half an hour later, they would see me bounding down the corridor. It's much easier not hiding it.’

Being a patient with medical training has its frustrations, too, especially when your doctors are your colleagues.

Dr Sutton finds they sometimes assume knowledge because of his specialty. ‘I have lots of patients with Parkinson’s … but stroke isn’t neurology.’ He also finds people wrongly assume that he knows about care pathways at the hospital just because he works there.

Meanwhile, Dr Prettyman’s own Parkinson’s specialist nurse is a former colleague who always treats him as ‘a normal patient, not as a doctor who’s a patient’. ‘I really do appreciate that,’ he says.

It’s important not to look too far ahead. Being confronted regularly at work with reminders of what advanced Parkinson’s disease can look like takes its toll.

Dr Prettyman often saw patients ‘at the frightening end of the severity spectrum’, people with late-stage Parkinson’s who were physically frail and were developing neuropsychiatric complications such as psychosis or dementia. (With hindsight, he recognises they typically also had other comorbidities.)

A Parkinson’s information roadshow he attended soon after diagnosis – where he was confronted with liquidisers, incontinence products and walking aids – didn’t help much either.

He has learnt that staying positive and remaining active are important. Regular cardio-vascular exercise – the one thing known to slow the progression of Parkinson’s – is vital.

Dr Katechia is in the gym by 6.15am every day. Dr Prettyman runs, Dr Acheson cycles, Dr Sutton does Judo, as their YouTube video explains.

Having positive role models of people living full and fruitful lives is just one of the many benefits of the support group Dr Acheson set up in 2020, says Dr Prettyman.

What he saw as a clinician has been ‘leavened and balanced’ by seeing others at different stages of the condition managing well.

‘What we need is that sense of affirmation that life can go on, and while some bits are shitty and difficult, we can see a way through.’ He now enjoys a fulfilling life thanks to three grandchildren, exercise and his many hobbies.

The support group, which meets weekly online, is also a forum for sharing useful information and experiences.

Among its special-interest sub-groups, one is involved in advocacy. It has collaborated with the Parkinson's UK Excellence Network to draw up 10 recommendations supporting health professionals in implementing time-critical medication management in hospital.

‘I was walking through my department one morning and a patient beckoned me,' says Dr Acheson. 'She was visibly trembling and said: “I have Parkinson's and I need my medication.” I whispered in her ear, “So do I. I’ll help you.” She hadn't had any of her medications that morning.’

Learning to live with an uncertain future remains a challenge – which can be doubly hard when anxiety, apathy and depression are part of the condition. As Dr Acheson says, ‘Parkinson’s can be all-consuming’.

However, you’ve got to keep going, says Dr Sutton, and on the days when that is harder, positive peers who understand can really help.

‘I have no idea how long I’m going to be able to do stuff but if I just sit here and mope, then by the time I’ve finished moping, I won’t be able to do anything.’

For Dr Katechia, the greatest fear is becoming dependent. She is used to being an optimistic, able and confident woman, the linchpin of a large, extended Indian family.

The 12 months since her diagnosis have been a huge adjustment affecting every area of her life. Her plan to become a GP partner is now well and truly shelved. Wellbeing and family are far greater priorities now.

She often shares her own journey with her many patients suffering burnout, to help them find better equilibrium.

‘We were going to work really hard and save all the fun stuff for retirement,’ she says. ‘But that means you miss your children growing up. I feel like my mental wellbeing now is the best it has ever been.

‘Life is too short now to waste it doing stuff I don’t want to do. No one knows about tomorrow. I just wish I had made these changes without having to have brain disease.’

• To find out more about the Parkinson’s support group for health professionals, email nhsppdg@gmail.com