The four stages of Parkinson’s Disease – treatment options
Join the panel to learn more about the diagnosis and maintenance stages of Parkinson’s and what they mean for you and your patient. How can treatment be optimised during this time and patient’s and their families prepared for the next stages of their Parkinson’s journey.
Dr Annette Hand - presentation slides
While diagnosis/early PD is defined as when the signs and symptoms first become noticeable, the diagnosis isn’t necessarily established or accepted at this point, said Dr Annette Hand. Once someone moves into the maintenance stage, the clinical diagnosis has been made, and people may need some help understanding and reconciling with that news.
Annette went on to explain that when the staging criteria were first published, palliative care was placed at the end. “Palliative care actually flows right from diagnosis,” she said, pointing to the fact that PD management focused on symptom control rather than curative therapies.
According to the 2017 NICE guidelines, PD should be suspected in people presenting with tremor, stiffness, slowness, balance problems, and/or gait disorders. Annette said that GPs should refer these patients to specialist services without initiating treatment. “This needs to be done as quickly as possible because often people have taken some time to develop these symptoms in the first place,” she said.
Specialist services should then review the diagnosis. “We need to monitor people and follow them over a course of time to see how they respond (to treatment), to see if they change, and to see if there are any red flags that might lead to a different diagnosis,” said Annette. NICE recommends specialists services see the person every six to 12 months to assist in this process.
Annette highlighted the MDS clinical diagnostic criteria for PD and took delegates through the step-by-step pathway. “I think we should all be using diagnostic clinical criteria,” she said.
“It is really important that we show this to our patients as well so that they can see where we are coming from, and that it can sometimes take time to be confident in the diagnosis.”
Annette has been involved in two studies which aim to accelerate the route to PD diagnosis. The first is a metabolite study of skin swabs, triggered by the news that an ex-nurse, Joy Milne, noticed a change in the way her husband smelt after developing PD. “Over the past few years, there have been a number of studies looking at whether we can actually detect Parkinson's from a change from their smell,” said Annette, adding that soon-to-be published data looked “very promising”. “The next stage will be larger scale studies to look at how sensitive and valid this is.”
Annette has also been working with the developers of a pen and tablet medical device that can detect tremor, bradykinesia, and rigidity of movement in handwriting motions. “This may help us with diagnosis…I just want to speed up the whole process because we all know how distressing it can be for individuals,” said Annette.
There is some suggestion in the literature that there could be a link between COVID-19 and PD. “There have been three case reports published of relatively young people who have had COVID-19 and who have developed PD, either by itself or with other symptoms, within two to five weeks of contracting the disease,” said Annette. 
“It is something to be wary of going forward, and certainly if we are looking at people being diagnosed, we have to ask them if they have had COVID-19 or the symptoms of COVID-19 to understand this a bit further.”
Everyone will respond to a diagnosis of PD differently. “For some people, it's a real relief to finally understand the symptoms… some people are really worried about the future and what it means to them… and other people feel really quite overwhelmed by it. Some feel really shocked,” said Annette.
“The date that you give that diagnosis, how you tell them that diagnosis, and how you talk to them about it will be etched into their brain forever.”
The key is to be sensitive, respond to the way they respond, and share evidence-based, accurate information, she added. “We need to make sure we have a participatory health model from the beginning. It is about patient engagement and shared decision making. We may only see them for half an hour whereas they are living with that condition 24/7. We need to make sure we are meeting their needs.”
People will usually need support to make the lifestyle changes they need to make to slow progression, such as taking more exercise and eating more healthily. Early physiotherapy is also important, and occupation therapy and help with sleep problems should also be considered from an early stage.
To treat or not to treat?
According to the 2017 NICE guidelines, levodopa is the first-line treatment if motor symptoms are impacting on quality of life (QoL). “If not, then we can offer any of the choices we have available to us, but that should only be after careful discussion with the patient about what they want…and how they want to take the medication.”
One of the most important things is to manage expectations, said Annette, adding that teams should be clear about where people may expect to see improvement – and where they will not. “Having those conversations… at the very beginning and explaining how the medication works, and how long it will take to work, is really important.” All this should also be documented so the patient can take the information away with them to digest.
If the person isn’t ready for treatment, because the symptoms are not impacting their QoL for example, that’s OK, Annette said.
“There is no rush or panic. There is no firm evidence that any of the medication we have is protective… they won’t slow the disease and certainly won’t reverse it.”
In terms of non-motor PD symptom, of which there are more than 40, a multi-disciplinary approach, can help teams to focus on the most distressing or those that have the most impact on QoL, she added.
- Parkinson’s disease in adults NICE guideline [NG71]. (2017). https://www.nice.org.uk/guidan...
- Postuma, R. Berg, D., et al. MDS clinical diagnostic criteria for Parkinson's disease. (2015). https://pubmed.ncbi.nlm.nih.go...
- Brundin, P., Nath., N., et al. (2020). Is COVID-19 a perfect storm for Parkinson’s disease? https://www.cell.com/trends/ne...
Our Parkinson's webinars are available on SoundCloud:
This webinar has received sponsorship from AbbVie Ltd. The first session in the webinar is designed and delivered by the Parkinson's Academy and sponsored by AbbVie Ltd; the sponsor has had no input into the educational content or organisation of the session. The recording of our sponsor’s session is not available for on-demand viewing.
'The things you can't get from the books'
Parkinson's Academy, our original and longest running Academy, houses 20 years of inspirational projects, resources, and evidence for improving outcomes for people with Parkinson's. Led by co-founder and educational director Dr Peter Fletcher, the Academy has a truly collegiate feel and prides itself on delivering 'the things you can't get from books' - a practical learning model which inspires all Neurology Academy courses.