What should we be telling people with Parkinson’s when they ask us about what they can and can’t do during the time of COVID-19? Should they be shielding, avoiding all contact with people from outside the family group? Should they be working? What about going to the shops?
The truth is that in common with so much in this era of enormous change, we don’t have enough evidence to be definitive.
When COVID-19 started to appear with frequency in this country, the government issued guidance on social distancing. It was supported by the (now withdrawn) slogan, “Stay home, Protect the NHS, Save lives”.
As part of that guidance, there were recommendations that applied to everyone. There was the strictest advice for the highly vulnerable (such as people with known immune disorders) and there was a third group that was described as vulnerable. This included anyone aged over 70 and anyone with a chronic neurological condition, such as multiple sclerosis (MS) or Parkinson’s. The advice was that these people should be even more careful than the population as a whole but did not specify exactly what this would mean in practice.
On 11th May 2020 the government changed its guidance. It introduced a new slogan,
“Stay alert, Control the virus, Save lives.”
The yellow posters changed from red accents to green, heralding a softening of the lockdown message. While there was still the recommendation for over 70s to continue to be more cautious, any mention of Parkinson’s (or any other neurological condition) disappeared from the guidance. Did this mean that people with Parkinson’s under the age of 70 did not need to take additional precautions? The answer was not clear.
As COVID-19 is such a new condition there is very little evidence about how it affects people with Parkinson’s. To get clues we need to look at other sources of data.
The highest risk factor for a poor outcome from COVID-19 infection is older age. Parkinson’s is a condition that disproportionately affects older people1 so we might expect people with Parkinson’s to be part of a group that is less likely to recover from the infection.
Is there anything else that might put people with Parkinson’s at a greater risk? A Primary Care database study, carried out in Scotland, found that, not only were people with Parkinson’s less likely than controls to have no co-morbidities but that they were more likely to have multiple co-morbidities2. The difference was most marked for those that had 7 or more other diagnoses (12.1% PD, 3.9% Controls. aOR 2.08 (1.84 – 2.35)). This included higher rates of conditions that have been shown to be associated with a worse COVID prognosis, including coronary heart disease, heart failure and cerebrovascular disease3.
My experience of the COVID age is that people with Parkinson’s are reporting increasing symptoms. One thing that I have heard more often is worsening Freezing of Gait (FoG). There may be reasons why living in lockdown could contribute to freezing. A 2008 postal survey of people with Parkinson’s found that the 5 factors that were most likely to induce FoG were turning, fatigue, confined spaces, stressful situations and emotional factors4.
With the exception of turning, all of these have been a greater part of many people’s lives since the arrival of COVID-19. The things that people reported as being helpful were the visual or audible cues that we are familiar with. We should think about ways to help people to access information on cues, especially when they may have reduced access to specialist therapy. This might include preparing leaflets on cueing and directing people to apps or online videos.
One very specific area that we might be asked about as Parkinson’s specialists is amantadine. Originally developed as a treatment for influenza, it was repurposed as a Parkinson’s drug after an initial case report led to further research. Amantadine has been suggested as a possible research candidate for COVID-19, based on evidence that it inhibited the envelope protein in the original SARS coronavirus5. A modelling study suggested that it might have a similar effect in the SARS-Cov-2 virus but to date no human trials have been registered6. It is important to remember that amandatine has the potential to lead to significant side-effects, which is one reason why it is no longer used for influenza.
If asked about starting amantadine as a treatment for Parkinson’s, my advice will be that the indications have not changed. It is used, primarily as an adjunct to other treatments, particularly in people with dyskinesia7. There may also be a role for people with atypical akinetic rigid syndromes as monotherapy or in addition to levodopa.
To return to the question of what advice we should be giving people with Parkinson’s about additional social distancing measures, Parkinson’s UK has advised that there should be no change to the advice given to people with Parkinson’s from the original guidance that the condition conferred increased risk from a COVID infection8 (http://www.parkinsons.org.uk). At the daily Coronavirus briefing on 11th May, Chief Medical Officer, Professor Chris Whitty also stated that it was not time to be revisiting previous pieces of advice.
The Movement Disorder Society has given some more specific guidance9. This includes the recommendation that all non-essential hospital attendance should be avoided for people with Parkinson’s. This means that Deep Brain Stimulator surgery should be postponed. Telemedicine should be encouraged as an alternative to clinic visits and Parkinson’s treatment should be continued during a COVID infection. They also reflected on some of the negative consequences of living in a state of quarantine, including reduced access to exercise. They recommended directing people to technology and equipment to help them to stay active.
The guidance from the Movement Disorder Society forms a very reasonable basis for advice to our patients. There are reasons to suspect that people with Parkinson’s may be more at risk of a worse outcome from a COVID-19 infection. Therefore, my advice to people with Parkinson’s will be to take socially distanced exercise but to avoid contact with others that is not absolutely essential. In short, to “Stay home, Protect the NHS, Save Lives.”
- GBD 2016 Parkinson’s Disease Collaborators, Global, regional, and national burden of Parkinson’s disease, 1990–2016: a systematic analysis for the Global Burden of Disease Study 2016’, The Lancet Neurology2018 17939-953 DOI: (10.1016/S1474-4422(18)30295-3)
- McLean 2017, ‘Co-morbidity and polypharmacy in Parkinson’s disease: insights from a large Scottish primary care database’, BMC Neurology (2017), 17:126, DOI 10.1186/s12883-017—0904-4
- NHS, ‘Who’s at higher risk from coronavirus?’ https://www.nhs.uk/conditions/coronavirus-covid-19/people-at-higher-risk/whos-at-higher-risk-from-coronavirus/
- Rahman S, Griffin HJ, Quinn NP, Jahanshahi M, ‘The factors that induce or overcome freezing of gait in Parkinson’s disease’, Behavioural Neurology 19, (2008), 127-136, IOS Press
- Verdiá-Báguena CNieto-Torres JL, Alcaraz A, DeDiego ML, Torres J, Aguilella VM, Enjuanes L, ‘Coronavirus E protein forms ion channels with functionally and structurally-involved membrane lipids’, Virology, Volume 432, Issue 2, 25 October 2012, Pages 485-494, https://doi.org/10.1016/j.virol.2012.07.005
- Abreu GEA, Aguilar MEH, Covarrubias DH, Dura FR, ‘Amantadine as a drug to mitigate the effects of COVID-19’, Medical Hypotheses, volume 140, July 2020, 109755
- Table 3, ‘The use of amantadine in our clinical practice; ACNR Vol 4, No 5, p40, Nov/Dec 2004
- Parkinson’s UK, https://www.parkinsons.org.uk/news/understanding-coronavirus-and-parkinsons
- Papa et al, Impact of COVID-19 Pandemic on Parkinson’s disease and movement disorders’, Movement Disorders, Volume 35, Issue 5, May 2020, Pages 711-715