Parkinson’s Patients in UK Survey Detail Struggles With COVID-19 Lockdown

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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Many Parkinson’s disease patients in the U.K. feel challenged by the COVID-19 pandemic and the restrictions it has placed on social interaction, reporting problems ranging from canceled appointments and limited exercise to worsening symptoms, according to a survey conducted by Parkinson’s UK and Lancaster University.

“Unfortunately this report shows just how hard the Parkinson’s community has been hit by the coronavirus crisis, both physically and emotionally,” Katherine Crawford, director of services at Parkinson’s UK, said in a press release.

The survey, done between April and May 2020, was completed by 1,491 people with Parkinson’s (mean age, 67) across the U.K., and by 275 of their caregivers. Respondents were asked a variety of questions about their experiences related to the pandemic and lockdown in the context of this disease.

They reported a high frequency of healthcare appointment cancellations.

About a third noted appointments with their specialist nurse (33.5%) or consultant (34.4%) being canceled. Well over half of these people were unable to schedule a phone or online telehealth alternative: 52% of those who lost a Parkinson’s nurse appointment, and 68% of those with specialist consultants. Additionally, 29.7% had general practitioner appointments canceled, with no alternative given to more than a third of them.

Cancellation rates were also high for physical therapy (70.4%), occupational therapy (55.8%), speech therapy (57.5%), and psychologists and counselors (51.4%). Alternative phone or online appointments were not offered to over 70% of these patients.

In open-answer sections of the survey, many highlighted access to healthcare (both Parkinson’s-focused and general) as a major concern.

“I feel abandoned really. All my NHS [National Health Service] appointments (in April and May) with the neurologist, PD nurse and neurophysio, that I have waited a long time for, have been cancelled with no alternative offered,” one patient said. “I had built up a whole programme of activities for myself (outside the house) and was feeling much better as a result … I have tried to fill the gaps with exercising at home, joining various zoom classes but I am still regressing.”

Within the overall survey population, 302 patients were asked about changes in their symptoms during lockdown, and the difficulties they have experienced during the COVID-19 period.

Many reported a worsening of symptoms, including slowness of movement (39%), stiffness (39%), fatigue (37%), anxiety (31%), tremor (27%), sleep problems (26%), pain (21%), freezing (14%), memory problems (15%), falls and dizziness (13%), depression (13%), and hallucinations and delusions (9%).

Other difficulties voiced by these people addressed disruptions to social life (72%), difficulty getting exercise and physical activity (34%), trouble acquiring food or other essential items (25%), loneliness (19%), and difficulty getting prescriptions from the pharmacy (15%).

Among the total survey respondents, 11.4% reported considerable difficulties in coping with the situation, and 20.2% indicated that they would want greater social support during this time.

Many reported struggling emotionally with the lockdown and distancing.

“Parkinson’s is an emotional journey at the best of times, coronavirus adds significantly to the experience by reinforcing the feeling of lack of control, lack of influencing ability or just waiting for the inevitable. Getting out of the house and dealing with the issues of getting around was a significant distraction, now denied,” one patient said.

“Since the lockdown it has been sheer hell, I am currently experiencing severe problems with extended off periods and freezing up when trying to walk,” said another. “I am finding it increasingly difficult to do anything, and as a result become very anxious and frightened.”

The report notes that increased stress and anxiety could lead to worsening physical symptoms, which could in turn cause greater stress and anxiety in a vicious cycle.

Another common concern voiced by respondents was a lack of Parkinson’s-specific information about COVID-19.

“People wanted more clarity about what the consequences of COVID-19 would be for someone with Parkinson’s, and whether they needed to be concerned,” the report stated, noting this lack of clarity likely exacerbates anxiety and worry.

Such uncertainty is likely to remain as restrictions are eased, since the consequences of easing lockdowns on people with Parkinson’s aren’t clear.

“We will be continuing this survey with the same questions to find out what effect the easing of lockdown restrictions has on the Parkinson’s community,” said Jane Simpson, PhD, a Lancaster University psychology professor. “We are concerned that the changes people have had to make have been so severe and so disruptive of their usual, well-planned routines that it may be difficult for people to bounce back.

“Consequently we are concerned about the long term effects of this period of lockdown.”

“As we start to move out of lockdown into a ‘new normal’, it is vital that we can continue to support everyone affected by Parkinson’s, so that together, we can move towards everyone with the condition feeling empowered to take back control of their life,” Crawford added.

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