In the UK, an estimated 166,000 people live with the degenerative neurological condition Parkinson’s – and someone is diagnosed every 20 minutes. By 2050, the number of people with Parkinson’s worldwide is predicted to double to 25 million, due to ageing populations and the increasing life expectancy of people diagnosed with early-onset Parkinson’s.
“It is now regarded as one of the commonest degenerative neurological conditions in the world, not just in older adults, but also in younger people,” says Professor K Ray Chaudhuri, a consultant neurologist and medical director at private neurology clinic Dementech Neurosciences Clinical Academic Centre and research director at King’s College Hospital. “I see people in their fifties, forties, and even thirties with a diagnosis of Parkinson’s.”
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According to Parkinson’s UK, around 59 per cent of people living with the condition in the UK today are men. The charity’s data suggests that, on average, people living with Parkinson’s were diagnosed at age 69, and the average age of a person living with Parkinson’s in the UK is 77 years. One in 16 people with Parkinson’s was under 50 when they received a diagnosis.
What are the main symptoms of Parkinson’s?
Symptoms of Parkinson’s are largely related to the loss of the chemical dopamine in the brain due to a decline of the nerve cells that produce it. Dopamine is a neurotransmitter often described as the pleasure or “feel-good” hormone involved in motivation and reward pathways, but its role goes far beyond that: it also regulates movement and motor skills. Having low levels of dopamine in the brain makes movement and day-to-day activities difficult.
There are over 40 movement and non-movement symptoms of Parkinson’s. While symptoms can vary significantly, and everyone’s experience of the disease is different, common symptoms include tremor (or shaking), rigidity (or muscle stiffness), slowness of movement, memory and thinking problems, sleep problems, and mental health problems, including anxiety and depression, pain and balance issues. How Parkinson’s affects someone can change from day to day, hour to hour.
“The most typical presentation of Parkinson’s is a tremor, difficulty in movement, stiffness of muscles, posture becoming stooped,” says Chaudhuri. Yet while tremor is a widely recognised symptom of Parkinson’s, he notes that around 30 per cent of patients do not experience a resting tremor with the condition.
Lesser-known early signs of Parkinson’s
“By the time patients come and see me with their symptoms and receive a diagnosis, they might have had the condition for many years,” Chaudhuri explains. “This is what we call prodromal Parkinson’s. These signs can be very subtle. For instance, a sudden or unexpected reduced sense of smell, which we call hyposmia.
“Another is a sleep disorder called REM behaviour disorder (or RBD), a condition in which you have violent dreams at night, and you act these dreams out without being aware. Often, a bed partner might see this person reaching out, hitting that person in their dream, or even falling out of bed. People who have RBD have a very high chance of going on to develop Parkinson’s in the next 10 or 12 years. Sleep can become very disturbed in Parkinson’s, as dopamine is also involved in the regulation of sleep, and people may wake up frequently at night, which can lead to insomnia.”
Other common early signs, which can present as the so-called prodromal features, include chronic depression and episodes of anxiety. Chronic somnolence as well as severe fatigue are other potential symptoms, as is chronic constipation. “These symptoms are common in the general population, but when presented together with hyposmia or RBD, may be suggestive of prodromal symptoms of [Parkinson’s],” says Chaudhuri.
Problems with your bladder or bowels are other common symptoms, as dopamine is involved in bladder and bowel function as part of the autonomic nervous system. “Some people may find they are getting up four or five times a night to pass urine, a condition we call nocturia.” Other signs of an overactive bladder can include needing to use the toilet immediately without warning.
A lesser-known symptom of the condition is changes in handwriting, explains Dr Rowan Wathes, associate director of policy and health strategy at Parkinson’s UK. Some people with Parkinson’s find that their movements become smaller and less forceful than before, due to changes in the brain. This can lead to their handwriting becoming smaller than it previously was or gradually getting smaller as they write. For this reason, if you are referred to a specialist by your GP, they may ask you to write or draw something.
A lack of dopamine in the brain can also impact the use of facial muscles, which can limit facial expressions, something that is sometimes referred to as having a Parkinson’s “mask” or facial masking, Wathes continues. It can leave people with a blank or serious expression, even if they are actually experiencing strong emotions.
If you are concerned that you are showing signs or symptoms of Parkinson’s, you should make an appointment to see your GP, who may refer you to a specialist.
Management of Parkinson’s
While there is currently no cure for Parkinson’s, treatment can help patients manage the condition and relieve certain symptoms that impact quality of life. Medications include dopamine replacement therapy (DRT), which can be administered orally or via injection. For some people, surgery may be recommended.
“In addition to the pharmacological treatments that we provide, lifestyle-based wellness measures are equally important,” says Chaudhuri. “If the two are not combined, treatment becomes suboptimal.”
As Parkinson’s expression can vary so significantly, there is no one-size-fits-all approach to the management of symptoms. However, he outlines a few non-negotiables. “Physical activity has been shown to be one of the most effective ways that you can combat Parkinson’s progression. There is also some evidence to suggest that people who exercise regularly may have lower rates of Parkinson’s. It can provide more dopamine in the brain than some tablets, and it also promotes new cell regeneration. Dancing, specifically ballet, has been shown to be very beneficial in Parkinson’s, while studies suggest practising tai chi may have a positive effect.”
Chaudhuri says it’s also crucial that people with Parkinson’s have at least six hours of sleep. “We know that people who have less than six hours of sleep [with] Parkinson’s have higher rates of developing dementia. It doesn’t have to be in one go, it could be a little nap in the afternoon, what I call ‘sleep snacks’, as long as it adds up to six hours,” he says. “Similarly, two litres of water a day is crucially important because hydration keeps the dopamine system active.”
Chaudhuri has also recently been involved in a clinical trial that showed a particular probiotic, Symprove, can be very effective across all stages of Parkinson’s, and it is something he recommends to patients. “But that’s not to say all probiotics are,” he adds.
Chaudhuri’s app The Parkinson Companion, which he also created in partnership with Sir Nicholas Mostyn, a former High Court judge who has the condition, can help fill in some of the gaps in knowledge around managing Parkinson’s. It provides lifestyle advice to patients living with Parkinson’s and a means of tracking motor function, non-motor symptoms, offering tips on supporting sensory, digestive and bone health, as well as information on things like medication interactions and side effects.