Jonny with wife Heather was shocked to learn he had Parkinson’s dismissing it “an old man’s disease” (Image: -)
As a doctor with years of experience in the NHS I am trained to diagnose… so how did I miss my own condition?
When the neurologist leaned across his desk that day and told me: “I’m sorry to tell you, Jonny, you have Parkinson’s disease,” I was absolutely stunned. “Parkinson’s? I just thought I was stressed.”
I knew something was wrong. I wasn’t rotating my left wrist quickly when my brain was willing it to move. And when walking for prolonged periods, I found my left foot scuffing the floor.
But despite five years of medical school and nearly two decades as an emergency doctor in the NHS, Parkinson’s hadn’t even entered my head – never mind making it on to my differential diagnosis list. Wasn’t this a disease that only old men had?
My thoughts went back to medical school when I had one 45-minute lecture on Parkinson’s. I tried to recall words from my notes – “frail, hunched over and tremors” came to mind but that wasn’t me.
I was 41, married to Heather with two young children, Ben, 10, and Anna, six, and working as a consultant in the busiest emergency department (ED) in the UK.
As I walked back to the car park it felt like the pause button had been pressed on my life. I had been blindsided and guilty and, to a degree, embarrassed I hadn’t joined the dots. With hindsight, it’s clear it is easier to spot clinical signs in others than yourself.
I was about to go through a period of metamorphosis. I was no longer who I was before but hadn’t yet discovered how to embrace who I am now.
Initially, I struggled with the fear that came with the diagnosis, as uncertainty became the new norm. I thought I understood Parkinson’s. I could describe the pathology, the symptoms, and the treatments. But as I learned how to live with it, I now understand the condition goes far beyond the clinical – it’s about empathy, adaptation, and connection.
Embracing vulnerability and seeking support were key. I didn’t choose Parkinson’s, but over time with the support of my family, friends, and faith I could slowly release the pause button. It was about moving forward, even when the path ahead was unclear.
The decision to be open and public about my diagnosis was profoundly personal, but I’ve found that sharing my story lifted a burden off my shoulders and increased my support network. It’s hard because it entails accepting some degree of vulnerability, but for me the benefits outweighed the challenges.
And I know I am not alone – in the UK someone is diagnosed with Parkinson’s every 20 minutes and, by 2050, the number of people with it worldwide will have doubled to 25 million.
Adaptation started the day I was diagnosed. My neurologist advised me to take four weeks off work to try and start to come to terms with the new daily landscape that my life and those closest to me were in.
Working in the UK’s busiest A&E department and noticed his left foot scuffing the floor when walking for prolonged periods (Image: -)
When I returned, I found the fast-paced, adrenaline-driven world of emergency medicine increasingly difficult to manage. The sickest patients in the resuscitation room drained the little dopamine I had and left me stiff on my left side and fatigued.
Initially, I was taken off the on-call rota and subsequently had to stop seeing the acutely unwell patients who arrived by ambulance.
Parkinson’s is a complicated condition and there was a new language to understand. Words like bradykinesia – slowness of movement – became part of my vocabulary, and even familiar words like “freezing” and “off” took on a new meaning.
I discovered a whole range of symptoms that were largely unseen but can be more disabling than the more obvious ones: including fatigue, anxiety and apathy.
I had to learn new rhythms and routines to incorporate medication schedules, deal with medication side effects, and understand new experiences like poor sleeping.
I had to motivate myself to start exercising again as two-and-a-half hours a week of high intensity exercise is thought to slow progression.
Parkinson’s is often referred to as a movement disorder but it is much more than that. While the majority of people living with Parkinson’s are older, it affects people of all ages.
A diagnosis before the age of 50 is considered to be young-onset Parkinson’s. And more men than women get Parkinson’s – we don’t know why, but it may be due to a combination of biological factors and lifestyle factors.
Within three years, I had to stop working in the ED altogether and move to our emergency decisions unit (EDU). This adjustment was supported by my employer, University Hospitals of Leicester NHS Trust, on the advice of occupational health.
But it caused me to question my whole professional identity. How could I call myself an emergency medicine doctor when I didn’t see emergencies any more?
At home, I was distant and had gone from being a hands-on husband and dad to someone with little interest who kept falling asleep on the sofa before the kids had gone to bed. The truth is, I felt less of a husband, father and doctor.
When Your Neurons Dance: A Story of a Doctor with Parkinson’s, by Jonny Acheson (£22.39, CRC Press), out August 12 (Image: -)
Over the past 10 years, we’ve had to adapt as a family. They know when I am tired, when I am wearing off my medications and when I can get frustrated.
They also know that at times I can get distracted and not be focused but ,when you peel back everything Parkinson’s brings, they know I love them dearly.
They didn’t choose to have a husband or dad with this condition but it has become part of their daily lives. I often wonder if Ben and Anna, now 19 and 15, remember what I was like before I had it but there is nothing to be gained in looking back – it’s what is ahead that is important.
I do not carry any genes associated with Parkinson’s which is reassuring for us all. One of the most transformative aspects of experience around this time was connecting with others living with Parkinson’s and healthcare professionals.
Initially, I was hesitant to engage with support groups. But I came to realise that by avoiding them, I was robbing myself of the valuable insight they could provide. I am now an active participant in the Parkinson’s community, both online and offline.
Adaptation leads to acceptance, which in turn can lead to integration.
In 2020 I integrated Parkinson’s into my everyday professional life by co-founding the NHS Professionals with Parkinson’s group, which provides support to healthcare professionals navigating the challenges of working with the condition.
Advocating and working towards the goal of ensuring that everyone with Parkinson’s in hospital is given their time critical medication (TCM) on time, every time has given me a renewed professional purpose and it is now firmly on the national agenda.
I found on EDU that my years of experience, skill and knowledge were called upon every day and that I could still add value.
But it is not only in medicine that I educate – I also use my creative talents to raise awareness and
foster understanding.
Through my artwork and short films, I share my experiences which in turn educates others about Parkinson’s. My new book, When Your Neurons Dance, bridges the gap between pathology and lived experience and it offers a real insight into living with Parkinson’s – including ways to improve quality of life. It’s a story of resilience, adaptation, and the power of connection.
As a society, we need to educate, empower and equip individuals through holistic, person-centred healthcare enabling them to live their best life.
Now 50, as I continue to navigate my new life, I remain committed to my work, my family, and my advocacy for the Parkinson’s community.
It has nearly taken 10 years but ultimately, I have found a way to give back, despite a condition that always takes away.
Remember you are not alone. There is strength in connection, hope in adaptation, and possibility in the ordinary.