What are the early signs of Parkinson’s disease? In the second article in our new 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 tremor being the symptom perhaps the most commonly associated with the condition, it’s no surprise people frequently wonder what the other signs might be.
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 percent of respondents citing it as an early symptom. However, we also saw a variety of other symptoms, some more surprising than others, reported as early signs.
In the second feature in our series, we look at more of the 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.
Some 22 percent of respondents mentioned rigidity as an early symptom they experienced before they were diagnosed with Parkinson’s.
Rigidity is one of the core motor manifestations of Parkinson’s, according to Dr Graham Hughes, consultant physician in Geriatric & General Medicine at St. Vincent's University Hospital in Dublin. It manifests as stiffness, which can be experienced across the joints of the limbs or torso, and in early Parkinson’s, it will generally affect one side of the body only.
“Its presence at the time a person presents to their doctor, and is referred on to a specialist, helps us to confirm that Parkinson’s is the correct diagnosis. It is a major feature of Parkinson’s and can limit activities and interests as well as causing significant discomfort and even pain.”
A stiff, painful shoulder is a common first presentation, he adds. “Over time, as a person's Parkinson's progresses, generally the rigidity extends from the first affected area to involving the whole of that affected body side and torso and then crossing over to the other body side.”
Fortunately, Hughes says, there are many effective treatment options for helping to combat the rigidity of Parkinson’s, thanks to significant improvements in our understanding of how rigidity impacts on activity and how we can manage the symptom.
Staying active is key, with regular physical activity significantly improving the symptom – options include yoga, Tai chi and dance.
“Standard Parkinson’s medications such as levodopa or dopamine agonists are predictably effective against this symptom, too,” Hughes says.
Dr Graham Hughes
Rigidity is a major feature of Parkinson’s and can limit activities and interests as well as causing significant discomfort and even pain
Dr Graham Hughes, consultant physician, St. Vincent's University Hospital, Dublin
What PwPs say:
Jennifer, 45, was diagnosed in May 2016
“The stiffness was mild at first. You assume you've overdone it at the gym or slept wrong, but it never really resolved with massage or stretching. I had lower back stiffness that lasted through the day and became sciatica. I had a couple of instances of bursitis in my shoulder for the first time and stiffness remained. My neck and shoulders became increasingly stiff.
I've just had eight weeks of continuous physiotherapy for my neck and shoulder, and have extremely painful nerve impingement. My left ankle has much less mobility and range of motion now. This has been noticeable since my diagnosis – not painful, but stiff.
“The stiffness has slowed me down – it’s tiresome because it causes pain and I still work full-time in a stressful, demanding job. I have to work at it, and have been going to a personal trainer experienced with Parkinson's since 2017.
“It never occurred to me that Parkinson’s might be the cause. I thought I was ageing, or that the gym was the culprit. In retrospect, my gait was terrible but I hadn’t associated the two. It was not until after I researched Parkinson's I realised I had had several symptoms for a few years, and it wasn't necessarily normal to be so stiff or to have such shoulder problems.”
Susan was diagnosed in April 2014, aged 67
“My very first symptom was slowness followed by stiffness mainly in my legs. My symptoms have improved greatly since I started taking Sinemet. When I first began to experience stiffness, it didn’t dawn on me that it was Parkinson’s. Initially, the stiffness didn't really affect my quality of life very much. But by the time I was diagnosed, I knew it was Parkinson’s.”
The stiffness has slowed me down – it's tiresome because it causes pain and I still work full-time
Jennifer, 45, diagnosed in May 2016
Gait and walking issues
Some 15 percent of respondents named gait and walking issues as early symptoms they experienced ahead of their Parkinson’s diagnosis. Changes in posture, slowness of movement and a shortened stride can cause what is known as ‘Parkinsonian gait’, resulting in some PwPs having a distinctive, less steady walk. It can cause a person to lean unnaturally forwards in a stooped position, drag their feet, and find turning difficult, among other issues.
Dr Samuel Stuart, honorary clinical physiotherapist at Northumbria Healthcare NHS Foundation Trust, says: “Difficulties with walking are often an early symptom of Parkinson’s disease that can be subtle or prominent. For example, some patients may report slowness of walking that may not interfere too much with daily activities or that can be overcome with concentration, whereas others may have unilateral leg stiffness or dragging/scuffing of a foot that can risk trips and falls.
“Subtle early changes to walking are sometimes difficult to observe within the clinic but may be reported by the patient or spouse (or carer) as occurring within their usual daily activities. It is often helpful for clinicians to observe patients walking in the waiting area or as they walk into the clinic room to gain some insight into their typical walking pattern, which may include signs such as reduced arm swing, stooped posture and shortened steps.
“From an early stage, walking becomes more challenging for patients with Parkinson’s, as they need to think more about their walking due to the loss of automatic movement that occurs with dopamine loss. Walking can be improved with medication and external interventions (such as cues; e.g. metronome beats to step in time with), but walking impairment does progress and can become more prominent over time.”
Dr Sam Stuart
Difficulties with walking are often an early symptom of Parkinson’s disease that can be subtle or prominent
Dr Samuel Stuart, honorary clinical physiotherapist, Northumbria Healthcare NHS Foundation Trust
What PwPs say:
Bob was diagnosed in 2014, age 63
“My movement issues were mild at first, tilting forward only during running. I had no left arm swing all the time, general stiffness all the time. But it had no effect on my day-to-day life, and it did not occur to me at the time that Parkinson's could be the cause. These symptoms improved after doing an LSVT course, although in the last six months I’ve started to hear my footsteps due to my feet dragging.”
Alan was diagnosed in June 2019, age 67
“I first noticed my left foot dragging, making a different ‘scraping’ sound on the pavement. It felt like my left foot didn’t quite belong to the rest of my body, like an artificial lower limb that I was ‘lifting’ from my thigh to walk. It was mild and has stayed mild – I think it is worse when it’s cold or when I get stressed or in a hurry. The rear of the outside left heel on my shoes is markedly wearing.
“I found it took me longer to walk to places, and my wife kept asking me to ‘keep up’. I also kept stalling the car, which I initially put down to new shoes. A friend also later told me that my walking had progressively slowed down over the past year. It did worry me sometimes, in case my foot might ‘give way’, but it didn’t occur to me that Parkinson’s could be the cause. My gait has improved greatly since I started taking Sinemet three times a day. I intermittently get stiffness in my left shin. Otherwise if I’m walking and not thinking about my left foot articulation, then I know that the tablets are working.”
Carol, 70, was diagnosed in 2018
“I first noticed the gait problems shortly after I retired in 2017, because I wanted to start walking daily for exercise. Because I had an incident of atrial fibrillation (a quivering or irregular heartbeat) the week after I retired and was put on medication, I first thought the gait problem might be associated with this or the meds. But once I was diagnosed I felt it was due to Parkinson’s. I would describe it as awkward, not easy, slow. My back and leg get stiff and walking gets harder the longer I walk. If I deliberately swing my arm and concentrate on heel-toe it is better. I now use a walking pole which helps keep me moving forward. I try to walk a mile every day. I often go to a large store and use the shopping cart to walk a mile. That also keeps me moving forward and practically eliminates the problem.
I started levodopa last year to help with the gait issue and leg pain and stiffness and initially it helped but that has diminished.”
I first noticed my left foot dragging, making a different ‘scraping’ sound on the pavement. It felt like my left foot didn’t quite belong to the rest of my body
Alan, diagnosed in June 2019, age 67
What early motor symptoms did you experience before you were diagnosed with Parkinson’s? Did you suspect Parkinson’s might be the cause? What has helped relieve your symptoms? 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.