The first in Parkinson's Europe's series of mythbusting articles looks at what parkinsonism is – including different types such as Parkinson’s disease – and common misconceptions about symptoms and diagnosis.
What is parkinsonism? Parkinson’s disease, progressive supranuclear palsy (PSP) are among several conditions that are grouped together under one umbrella term.
But when you’re first noticing early symptoms or have been recently diagnosed with a type of parkinsonism, it can feel confusing. Parkinson's Europe knows many of you are trying to understand more about the various conditions that are linked by Parkinson’s-type symptoms, so we want to shine a light on the subject.
In our series of ‘mythbusting’ articles, we’re starting with parkinsonism. What is it, and how do we separate the misconceptions from the truth?
Of those who have parkinsonism, about 85% have Parkinson’s disease (sometimes called idiopathic Parkinson’s). However, this means the other 15% of people with parkinsonism have other, rarer conditions.
Myth: Parkinsonism is just another word for Parkinson’s disease – it’s all the same condition
Actually, no. “Parkinson’s is one type – actually the most common type – of parkinsonism,” says Dr Donald Grosset, consultant neurologist at Glasgow’s Queen Elizabeth University Hospital in Scotland, honorary professor at Glasgow University, and clinical director of the UK Parkinson’s Excellence Network.
The terms may sound similar but parkinsonism is an umbrella term covering a group of conditions that feature Parkinson’s-type symptoms. Dr Christer Nilsson, MD, PhD and consultant neurologist at Skåne University Hospital, Sweden, explains: “Parkinsonism is a combination of at least two of the following motor symptoms: rest tremor (shaking), bradykinesia (slowness of movement), rigidity (increased muscle tone, i.e. stiffness) and, finally, problems with walking and balance. Parkinsonism can have many causes.”
Myth: Some people have several types of parkinsonism
While it is not impossible for a person to have more than one type of parkinsonism, it is very unlikely. “This would be extremely rare as they are different diseases, so it would be really bad luck to get both,” says Dr Grosset.
Dr Nilsson adds: “Parkinson’s disease is the most common form of parkinsonism, followed by cerebrovascular changes (disorders of the brain vessels).” Although not impossible, he says, “it is very unusual to have two neurodegenerative causes of parkinsonism at the same time.”
While some symptoms are more common than others, a person’s experience of each parkinsonism condition is usually as individual as they are.
Myth: Everyone with parkinsonism gets the same symptoms
This is not true. While some symptoms are more common than others, a person’s experience of each parkinsonism condition is usually as individual as they are. “Everyone’s parkinsonism is unique, and the constellation of symptoms can be very different between different individuals,” says Dr Nilsson. “For example, a patient could develop any number or combination of non-motor symptoms such as orthostatic hypotension [low blood pressure], constipation, urinary urgency, depression, anxiety or dementia as their condition develops.”
In the same way, even people with the same type of parkinsonism can find they experience very different symptoms to someone with the same condition. “There is a lot of variation. Even within Parkinson’s disease, for example, there is variation,” says Dr Grosset.
Myth: Getting diagnosed with parkinsonism of any type will be straightforward
Sadly, there is no quick path to diagnosis, and for some people it can be a process of elimination (and, for a few, even misdiagnosis) before they are clearly diagnosed with any type of parkinsonism.
Dr Nilsson says: “Parkinson’s disease is still a clinical diagnosis and depends on the presence of typical symptoms, some of which are alleviated by levodopa, and which develop in a typical pattern over time. It is possible to measure whether there is a reduction of brain dopamine by using special imaging methods, but these methods cannot distinguish between Parkinson’s disease and the atypical parkinsonian disorders . There is still a considerable amount of misdiagnosis or delayed diagnosis in the early stages of the disease, even in specialised centres.”
However, it is not always a long process for every condition, as Dr Grosset explains: “Sometimes the diagnosis of Parkinson’s disease is very clear from the early stages, and there is really nothing else that could cause the symptoms. At other times, observing over time helps to see whether the symptoms are due to Parkinson’s disease, or another type of parkinsonism.”
To help set this in context, Dr Grosset says: “It’s important to keep in mind how many cases of parkinsonism are due to Parkinson’s disease. Approximately 95 cases out of 100 of parkinsonism (that are caused by a disease process, rather than being a side-effect from medication) are due to Parkinson’s disease. Of those remaining five cases, some are obviously different from Parkinson’s disease even from the earliest stages, leaving only a very small percentage that are unclear so could be misdiagnosed initially as Parkinson’s. So nearly everyone who gets a diagnosis of Parkinson’s disease initially will have Parkinson’s disease, and not another type of parkinsonism.”
Of course, this still means that for some people, an initial diagnosis of Parkinson’s would be incorrect. Therefore, it is best to go into the diagnosis process with an open mind, and see it as an investigative process rather than a simple diagnostic test.
Huw Morris, professor of clinical neuroscience at UCL Institute of Neurology, honorary consultant neurologist at the Royal Free Hospital and the National Hospital for Neurology and Neurosurgery, adds: “My view is that it is a process which includes initial symptoms, response to treatment and progress in the first year.”
Further reading:
- Parkinson's Life - Doctors thought I had Parkinson’s for nearly a decade – they were wrong
- Parkinson's UK- types of Parkinson's
Do you have a type of parkinsonism, and if so what was your experience when you were being diagnosed? What misconceptions do you find other people often have about parkinsonism and Parkinson’s disease? Email info@parkinsonseurope.org and tell us your stories.
Parkinson's Europe is sharing this article for information purposes only; it does not represent Parkinson's Europe's views and is not an endorsement by Parkinson's Europe of any particular treatments, therapies or products.
