What are the early signs of Parkinson’s disease? In our new early symptoms series, the EPDA looks at some of the most common motor symptoms people experience before diagnosis
‘What are the early signs of Parkinson’s disease’ is one of the most common search terms bringing people to the EPDA website. With no specific test for the condition and tremor being perhaps the most commonly – and sometimes the only – symptom associated with it, it’s no surprise people often wonder what the other signs might be before diagnosis.
The EPDA asked nearly 100 people with Parkinson’s (PwPs) about the early symptoms they experienced before being diagnosed. Tremor was the most common symptom by far, with 45 per cent of respondents citing it as an early symptom. However, we saw a variety of other symptoms, some more surprising than others, also reported as early signs.
In the first in our four-part series, we look at some of the most common motor symptoms the PwPs we surveyed experienced before – in some cases, many years before – they received their official Parkinson’s diagnosis. We shall look at non-motor symptoms later in the series.
It’s important to remember that many of these symptoms can be caused by, or are indicative of, a variety of conditions, and do not necessarily mean a person has Parkinson’s. So, if you are concerned, contact your healthcare professional.
Shaking – or tremors – is one of the most recognisable symptoms of Parkinson’s. Although not every PwP will experience it, our poll saw 42 out of 93 people say they did notice a tremor before they were diagnosed with Parkinson’s. Characterised as an involuntary, rhythmical movement that affects a part of the body, the presence of a tremor does not necessarily mean a person has Parkinson’s. For example, the UK’s NHS website states that it’s normal to have a slight tremor, although recommends you see a doctor if it's getting worse over time or is affecting your daily activities.
Our poll saw 42 out of 93 people say they did notice a tremor before they were diagnosed with Parkinson’s
Dr Camille Carroll, Associate Professor and Honorary Consultant Neurologist at the University of Plymouth, comments that tremor is one of the most common early Parkinson’s symptoms: “I think in part that would be because it is noticeable to the patient and to their family members (who might then nudge them to seek a clinical review), whereas [another motor symptom such as] stiffness might be more insidious and less frequently noticed. Chances are that both are present, but it is the tremor that gets noticed. Then, once the diagnosis is made, the PwP might be able to identify various non-motor symptoms that predated the onset of the tremor – such as constipation, low mood, lack of sense of smell, RBD [REM sleep behaviour disorder] and so on.
“Tremor usually affects one arm, although it can spread to involve the other arm, legs or jaw as the disease progresses,” continues Dr Carroll. “It is classically described as a rest tremor, which means it is present at rest, when the arm is relaxed, and then disappears when you start to use your arm. It has a particular character to it, called pill-rolling [because it looks like you are rolling a small pill between your thumb and index finger], which can be quite distinctive. The fact that it often disappears with action means that it is often not too disruptive for people. However, it is often the most obvious sign of Parkinson’s, noticeable to others, which can be socially embarrassing.
“As with most neurological symptoms, it can be worse at times of stress, anxiety, sleep deprivation or if you are otherwise unwell. Sometimes the tremor is also present when the arm is outstretched (postural tremor) or moving (action tremor). In this situation, it can be more difficult to distinguish from other types of tremor, such as essential tremor. Sometimes making this distinction can be tricky, even for the experts. If there is an action or postural tremor, then it is more likely that the tremor will be a nuisance, interfering with daily life and tasks that involve finely controlled movements such as typing or writing, as well as carrying cups or eating.
“In some people, the tremor in Parkinson’s responds really well to dopamine replacement therapies, whereas for others it can be more resistant to treatment. In this situation, deep brain stimulation can be very effective.”
What PwPs say:
Carol, 70, was diagnosed in 2018
“My tremor started about two years before my diagnosis. It was and still is generally minor. At the time I had a frozen shoulder and I thought the tremor was related. I had surgery for the shoulder and the tremor persisted. My physician referred me to a neurologist, and it then took another two years for the diagnosis. No medications or supplements seem to change it.
“It doesn’t affect my life generally except sometimes that arm gets stiffer. What works best to calm it is meditation. If I am busy, I don’t really notice it, but if I am stressed or anxious or under time pressure, it gets worse.”
An anonymous PwP, diagnosed at the age of 40
“Initially, I noticed a middle finger tremor in my right hand. It later progressed and affected my right limb as well. My day-to-day activities are difficult and slow, too. My tremor has progressed since diagnosis and now affects my left hand, too.”
Initially, I noticed a middle finger tremor in my right hand. It later progressed and affected my right limb as well
An anonymous person with Parkinson's, diagnosed at the age of 40
Loss of or reduced arm swing
A quarter of respondents said they had experienced loss of, or reduced arm swing – a symptom of rigidity – as an early sign of Parkinson’s. Unlike some of the other symptoms, however, it seems to have a less noticeable impact on daily life.
A quarter of respondents said they had experienced loss of, or reduced arm swing as an early sign of Parkinson’s
Jorik Nonnekes, consultant physiatrist at Radboud University Medical Center, Nijmegen, the Netherlands, specialises in gait impairments in Parkinson’s. He says the symptom can be present years before diagnosis takes place. However, he adds: “It is linked to Parkinson's, but not specific to Parkinson’s, as reduced arm swing can also be due to shoulder and elbow problems (for example, a frozen shoulder) or hemiparesis after a stroke.”
This perhaps explains why experiencing loss of arm swing does not – and should not – automatically lead to Parkinson’s being considered as the cause.
Nonnekes adds: “I think the impact of reduced arm swing is minimal; I have never experienced a patient complaining about this symptom. Compensation strategies (such as cueing) improve gait in general, and do also improve the degree of arm swing.”
What PwPs say:
An anonymous PwP, age 56
“I was diagnosed in May 2016, aged 52, and noticed I had no arm swing and slow movements between 2014 and 2015. At Christmas 2015 my family thought I was joking around, walking with no arm swing (like the character from Seinfeld!). However, I found having no arm swing had no effect on my life. It has now improved with meds and awareness, although I have very little swing at night prior to bed. I’m still managing to hide having Parkinson’s from my work colleagues and children, but it’s getting harder.”
At Christmas 2015 my family thought I was joking around, walking with no arm swing (like the character from Seinfeld!)
An anonymous person with Parkinson's, age 56
Mojca, diagnosed in spring 2019, age 62
“I noticed a loss of arm swing one or two years ago, and I did not pay attention at first. My arm is almost still when I walk. But it does not interfere with any of my daily activities. When I started investigating my symptoms (some cogwheel rigidity in my left arm and leg), I started to realise that this might be Parkinson's, especially due to the fact that my father suffered from this disease. The arm swing has not changed since, I think.”
Look out for our second article in the series, covering further common early motor symptoms, coming soon…
- Dr Camille Carroll profile on University of Plymouth website
- Dr Jorik Nonnekes profile on Radboud University website
What early motor symptoms did you experience before you were diagnosed with Parkinson’s? Did you suspect Parkinson’s might be the cause? Email email@example.com and tell us your stories.
The EPDA is sharing this article for information purposes only; it does not represent the EPDA’s views and is not an endorsement by the EPDA of any particular treatments, therapies or products.