When Janet Shipton sat down to write a holiday postcard to her aunt, the then 47-year-old didn’t imagine for a second that it would reveal the first symptom of early onset Parkinson’s disease. “I was in Tobago with my friend, and as I was writing, she looked over my shoulder and joked, ‘How do you expect anybody to be able to read that?’” recalls the former packaging designer from Mansfield, Nottinghamshire.
“My handwriting had never been great, but I realised it had become really tiny – and there was nothing I could do to change it,” continues Shipton, now 55. “After I got back to England, I mentioned the change in my writing to my GP. She immediately referred me to the neurology department at my local teaching hospital.
“When the doctors said Parkinson’s, it was an utter shock – absolutely devastating.”.
According to Parkinson’s UK, around 166,000 people in the UK live with the progressive neurological condition, which is known for causing tremors and slow movement. “Parkinson’s is caused by the gradual loss of brain cells that produce dopamine, a neurotransmitter which is responsible for moving, feeling and thinking well,” explains Dr Robin Fackrell, a consultant in geriatric and general medicine at Sulis Hospital Bath and the Royal United Hospitals Bath NHS Foundation Trust, who is a specialist in Parkinson’s and related disorders.
“When it comes to causes, it’s about 25 per cent genetic influence, but we now believe the real issue lies within the gut,” he explains. “Ultra-processed foods, antibiotics, changes in diet and stress all lead to an imbalance of the gut microbiome. Unhelpful bacteria start to destroy the gut lining, so bacteria get into the bloodstream, causing inflammation. This inflammation travels up the vagus nerve – a ‘superhighway’ carrying signals from the gut to the brain – eventually causing neurons to die. In those with Parkinson’s, it’s specifically the neurons that make dopamine.
“Once dopamine is reduced by about 80 per cent, Parkinson’s symptoms begin to emerge – at least, the ones that people would recognise, such as tremor, stiffness, slowness and postural instability. But by this point, your dopamine levels would have been dropping for about 20 years. So when people look back with hindsight, they realise they have been displaying other symptoms for a significant period of time – they just didn’t realise they were Parkinson’s symptoms.”
Why early Parkinson’s diagnosis is critical
In the UK, someone is diagnosed with Parkinson’s every 20 minutes, and while there is currently no cure, experts say early detection is vital. “There’s a lot of evidence to suggest that the sooner you start treatment, the better the outcome,” says Dr Fackrell. “If someone is starting to slow down and we correct the dopamine deficiency, then they feel better, move better, so they remain fit and can maintain a better quality of life.
“If they are more disabled by their symptoms by the time they begin treatment – physically, cognitively and emotionally – then they already have a reduced quality of life and more of a challenge on their hands.”
The surprising early warning signs of Parkinson’s
While a tremor is synonymous with Parkinson’s, “30 per cent of people with the condition will never have one, and each patient can have quite an individual response to it,” says Dr Fackrell. That’s because Parkinson’s has over 40 different symptoms – some of which can appear up to a decade before diagnosis.
Here are the lesser-known early symptoms that everyone should be aware of:
1. Loss or reduction of the sense of smell
This is often one of the earliest symptoms of Parkinson’s, but many people realise only in hindsight that it was an early warning sign, says Dr Fackrell.
“If we ask people with Parkinson’s about their sense of smell, they often say it began to reduce 15 or 20 years before their diagnosis,” he says. “They’ll talk about not being able to smell coffee or onions cooking, or of being less aware of the fragrance of flowers that other people admire.”
This is because alpha-synuclein, a normal protein found in the brain, forms into clumps called Lewy bodies in people with Parkinson’s (and some dementias), damaging the olfactory senses years before other symptoms become obvious.
Of course, anosmia – the complete loss of smell – can be caused by many things, reassures Dr Fackrell: “Infections, nasal polyps and Covid can blunt the sense of smell, so if yours changes, it does not automatically mean you’re going to develop Parkinson’s.”
2. Constipation
While constipation is a common problem and has many causes from lack of fibre in the diet to medication or dehydration, it is one of the most common non‑motor symptoms (meaning it is not connected to movement and balance), and for many living with Parkinson’s, it’s a key early signifier.
“Around 90 per cent of those with Parkinson’s are constipated,” says Dr Fackrell. “It’s a result of the slowing of the gut transit and a disordered microbiome, because Parkinson’s causes dopamine level to drop and the gut relies upon that hormone to move well.”
3. Smaller handwriting
“Often, the first sign of Parkinson’s that people notice for themselves is that their handwriting has become smaller or tails off towards the end of a sentence, known as progressive micrographia,” says Dr Fackrell.
“It signals reducing dexterity and that Parkinson’s is impacting on motor skills. I’ve had patients bring examples of their really neat calligraphy on Christmas cards from previous years, along with their latest card, where the writing has become considerably smaller and tricky to read.”
4. Anxiety and depression
“If you have reducing dopamine, that can lead to anxiety and low mood,” says Dr Fackrell. “People who come to see me say they have noticed more introspection, more anxiety. I call it ‘anticipatory anxiety’ about things that used to be inconsequential.
“I’ve had patients who were chief executives of large companies – people who were previously confident and resilient – who reported worrying excessively about small issues at work or at home. They ended up on antidepressants, but it was only once they [had been diagnosed with Parkinson’s and had] started dopamine replacement medication that their anxiety properly improved.”
5. Acting out dreams
Acting out your dreams, known as REM sleep behaviour disorder, is one of the strongest early signifiers that you may be developing Parkinson’s.
People with Parkinson’s may thrash, shout or lash out, usually in response to vivid or frightening dreams. “Patients tell me they have persecutory dreams, where they’re being chased, and start ‘running’ in bed, or begin bowling balls or batting while they’re asleep, often only finding out because they’ve hit their partner or fallen out of bed and injured themselves.”
If you begin acting out your dreams in midlife, you have a 50 per cent risk of developing Parkinson’s within five years, Dr Fackrell adds. This figure rises dramatically if dream enactment sits alongside other issues. “If you then can’t smell and are constipated, and perhaps are anxious, then your risk will then be 92 per cent across the same time period.”
6. Lightheadedness
“Parkinson’s can impact a part of the nervous system called the autonomic nervous system, which is responsible for maintaining and regulating blood pressure,” Dr Fackrell explains. “This means that people with early Parkinson’s may find that when they stand up, their blood pressure drops as the body’s natural reflex to tighten blood vessels doesn’t kick in quickly enough, causing them to feel light-headed or pass out.”
However, Dr Fackrell stresses that dizziness “can also be a result of heart conditions, dehydration, inner ear issues – a whole variety of different things, so get it checked out rather than worry”.
7. Strange facial expression
The medical term for this is hypomimia, or facial masking, and while it can be caused by other neurological illnesses, such as dementia, stroke or depression, it can be an important early clue of muscle slowness. “This isn’t about pulling odd faces, it’s a gradual loss of facial expression,” Dr Fackrell explains. “Where you might normally smile or have a happy resting face while watching television, you begin to look expressionless or vacant.”
However, it’s often subtle and tends to be noticed by family members and friends, rather than the person themselves, says Dr Fackrell. “Partners or family members often tell me that someone ‘doesn’t look like themselves anymore’, or that they never smile or don’t blink as much as they used to.”
8. Quieter or softer voice
While it’s normal to lose your voice occasionally as a result of a night out or a cold, if it becomes softer over a prolonged period, it could be an early symptom of Parkinson’s.
“Voice production is all about the production of breath by the respiratory muscles, and being able to pass your breath over your vocal cords,” says Dr Fackrell. “People with Parkinson’s are just not able to do that because these muscles become stiffened, and so speech becomes quieter.”
This symptom is a common cause of domestic quarrels in Dr Fackrell’s clinics. “I often see people who are arguing with their spouse who they think might be going deaf because they keep having to repeat themselves. In reality, the Parkinson’s has made their own voice a lot quieter. I treated one university professor who found she was fighting exhaustion by the end of every lecture from trying to project her voice, which was becoming softer and softer.”
9. Stiff arms or legs
In Parkinson’s, the brain gradually loses dopamine-producing cells in an area that helps co-ordinate smooth, automatic movement. With less dopamine, movements become slower, smaller and stiffer, especially on one side first. “Often with symptoms like this, it’s close family or friends, typically, who notice and encourage someone to speak to their doctor,” says Dr Fackrell.
“The observer has a keener eye, so wives realise they’re having to slow their own walking speed because their husband is no longer able to keep up, or they spot an asymmetric arm swing – one arm is moving less as they walk – or that stride length is reducing, or they can suddenly hear feet scuffing on the ground as someone develops a shuffle. This slowness of movement is known as bradykinesia.”
When to seek help
When any of these symptoms occur in isolation, they’re unlikely to be caused by Parkinson’s, reassures Dr Fackrell. “Just one of these alone probably isn’t going to be diagnostic – it’s the accumulation of a cluster of symptoms that really accrue risk.
“When several can be grouped together, the best thing is to see your GP in the first instance, either for reassurance or so you can be referred on to a specialist for further assessment where necessary.”
However, any new symptom that arrives and doesn’t clear up within a few weeks, from an increasingly quiet voice to constipation, should always trigger a visit to your GP to ensure there aren’t underlying health issues that require attention.
Find out about getting an NHS diagnosis for Parkinson’s here.
For more information about the condition, its symptoms and treatments, visit Parkinson’s UK or call its helpline on 0808 800 0303 (Monday to Friday: 9am to 6pm; Saturday: 10am to 1pm) or email [email protected].