The “catastrophic” effect of COVID-19 lockdown on people living with Parkinson’s disease has been laid bare through new research.
More than eight in ten people with fatigue (86 per cent), stiffness (83 per cent) and slowness of movement (88 per cent) reported worsening of their symptoms during the pandemic.
Anxiety and depression also increased considerably with seven in ten people reporting that their anxiety had worsened in 2021 – more than doubling the percentage from the previous year.
And almost four times as many people with depression say that it got worse (rising from 13 per cent to 48 per cent).
The research from Lancaster University, alongside Parkinson’s UK, covered two periods of the pandemic – April/May 2021 and then August 2021, which enabled researchers to measure changes.
The symptoms reported to have experienced the biggest decline were slowed movement, fatigue and sleeping issues, which all more than doubled year-on-year, while muscle cramps were over three times higher.
These significant declines, the researchers argue, can be in part directly attributed to the restrictions limiting people’s access to physical activity.
Professor Jane Simpson, from Lancaster University, said: “We know from our existing research that living well with Parkinson’s is a challenge, but one that is achieved by many people, using the skills that they develop through their experience of managing the condition.
“But those skills are not enough without support and what we have seen with the pandemic, the resulting restrictions and the significant changes in health care provision, is that all that support has been decimated.
“Also, many of the difficulties that have been created are not simply reversed with the end to restrictions. Health care services have not returned to pre-pandemic levels and routines have been often irreparably changed with significant effects on physical and mental health.”
Helen Tumilty, 72, from Durham, has lived with Parkinson’s for 24 years, but has seen a dramatic decline in the last two.
“Over the course of the pandemic, my Parkinson’s has definitely worsened at a faster rate than ever before,” she said.
“Before all the lockdowns I would go to pilates, yoga and choir, now I can no longer do those things and I rely on my carers.
“I have found it difficult to access appointments with my specialists because I have speech problems and I stammer which makes it hard to communicate over the phone.
“I tried to speak to a handyman on the phone recently but he could not understand me so my carer had to arrange the appointment with him.
“I am concerned that I will never get back on top of managing my health and it is frustrating to have to rely on other people so much. I feel like I am becoming invisible.”
Laura Cockram, head of policy and campaigns at Parkinson’s UK said: “The pandemic hit people hard, but our findings show that its impact has been catastrophic for many people with Parkinson’s.
“Deemed clinically vulnerable or even clinically extremely vulnerable, our community took additional measures to protect themselves from the virus, but it has had serious long-term damage to their health.
“Stay at home directives, combined with gym and local group closures, saw the majority of our community significantly reduce their level of physical activity which they tell us helps to manage their motor and non-motor symptoms.
“The result is a decline in health far above what we would expect to see naturally in a period of two years, which is deeply concerning.”
Parkinson’s is the fastest growing neurological condition in the world and there is currently no cure.
Current treatments can only alleviate some symptoms but there is nothing available to stop the condition advancing.
