Increased anxiety, stiffness and hallucinations: how lockdown has impacted the health of people with Parkinson’s

Over a third of people with Parkinson’s have experienced an increase in at least one of their symptoms during lockdown, according to a survey. 

Over a third of people with Parkinson’s have experienced an increase in at least one of their symptoms during lockdown, according to a survey.

The survey, carried out by Parkinson’s UK and Lancaster University asked more than 2,000 people affected by Parkinson’s across the UK, including people with the condition, their families, carers and friends, about their experience of lockdown.

Responses showed that: 

  • more than a third experienced either increased slowness of movement (39 per cent),  fatigue (37 per cent) or stiffness (39 per cent)
  • more than a quarter experienced either increased tremor (27 per cent), anxiety (31 per cent) or sleep problems (26 per cent)

Worryingly, 9 per cent also reported an increase in hallucinations, a little known but often terrifying symptom of Parkinson’s, and 13 per cent said they had experienced an increase in falls and dizziness. 

In the report, The Impact of Coronavirus Restrictions on People with Parkinson’s, which launched today, Professor Jane Simpson and Dr Fiona Eccles from Lancaster University analysed the survey findings together with Parkinson’s UK. They found that:  

  • Around a third (34 percent) said reduced access to exercise had a big impact on their lives
  • Around a third (34 percent) had appointments with their Parkinson’s Nurse or consultant cancelled and more than half of these were not offered a phone or online appointment as an alternative  

Parkinson's is a neurological condition causing muscle tremors, slowness of movement and muscle stiffness, as well as non-motor symptoms, including anxiety, depression and hallucinations. It is known that stress can exacerbate symptoms. 

There are around 145,000 people diagnosed with the condition in the UK, with more than 1 million people affected as family members, friends or colleagues.

The survey found that as well as concerns about loneliness and isolation, people reported an increase in stress levels, particularly around access to food and medication for those with advanced symptoms, and this stress exacerbated their physical symptoms. 

Parkinson's is thought to increase the risk of severe illness if a person with the condition gets coronavirus, meaning they are classed by the NHS and government as clinically vulnerable. Most people with Parkinson's have not been asked to shield which means that they are not eligible for the increased level of support and protection offered to those who are shielding. 

In England, the situation has improved as people with Parkinson's are now able to access the NHS responder service, but this does not apply in the rest of the UK, and it is not clear how many people with Parkinson's in England are aware of this support.

Beverley Lucas, 64, from Dorset, was diagnosed with Parkinson’s in 2014. She lives alone and prior to lockdown was in the process of moving house to be closer to her children.

Beverley started to self-isolate on 18 March. She said:

“My Parkinson’s symptoms have absolutely been flaring up in lockdown, stress seems to accentuate reactions in my body, and my tremor has been much worse. In lockdown I try to stay calm and chalk my worsening symptoms up to stress, but it’s impossible to know: Is it just my Parkinson’s developing? Living alone, I don’t have anyone to bounce those thoughts off of, who can reassure me or say, ‘Actually, you have seemed worse lately.’ It’s scary.

“I feel more isolated than ever. As far back as early February, I started to worry about COVID and decided to stop dancing. That’s been very hard, because it’s a social activity as well as a physical one. When I dance, it takes me away from everything. I’ll have a little dance around the house, but the dancing I was doing was partner dancing. I’m a very social person, so that’s been incredibly difficult.

“As a person with Parkinson’s, I’m not on the official NHS list of extremely high risk individuals, but I am more vulnerable. I’m so fortunate to have a lady who lives up the street who has been getting shopping for me. It’s incredibly kind and means I’m not having to go out more than I want to.

“A big source of stress for me is what the ‘new normal’ will be after this, and what the risks for people with Parkinson’s will be.”

During the pandemic, Parkinson’s UK has been adapting to reach their community in new ways, including moving exercise classes online, and providing up-to-date, tailored information for everyone affected by the condition. 

Katherine Crawford, Director of Services at Parkinson’s UK, said: 

“Unfortunately this report shows just how hard the Parkinson’s community has been hit by the coronavirus crisis, both physically and emotionally.

“We know that over a million people with Parkinson’s, family members, friends and carers have needed Parkinson’s UK more than ever during the pandemic. In response, we have boosted our helpline capacity, built the online Parkinson’s community and made sure people who normally receive our face-to-face support continue to do so in new ways.

“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 with Parkinson’s.”

Professor Jane Simpson of Lancaster University said: 

“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. 

“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.”

To support Parkinson’s UK’s emergency appeal, or for advice, information and support, visit www.parkinsons.org.uk, or call the free, confidential helpline on 0808 800 0303.

Notes to editors

The survey was conducted during April and May 2020.

The survey sample was of 2,031 people, made up of 1,491 people with the condition and 540 family members, friends and carers. 

For the full methodology and copy of the full report, see the Parkinson's UK website.

Media enquiries

For more information and interview requests please contact Amy Dodge, Media and PR Manager at Parkinson’s UK [email protected] or 020 7932 1362

To hear more about the impact and specific survey findings in Wales, please contact Rachel Williams, Policy, Campaigns and Communications Manager at Parkinson’s UK Cymru [email protected] or 0344 225 3715.

To hear more about the impact and specific survey findings in Scotland, please contact Tanith Muller, Policy and Campaigns Manager at Parkinson’s UK Scotland [email protected] or 0344 225 3726.​

About Parkinson’s UK

Anyone can get Parkinson’s, young or old. In the UK, around 145,000 people are already living with Parkinson’s. Every hour, two more people are diagnosed.

Parkinson’s is what happens when the brain cells that make dopamine start to die. There are over 40 symptoms, from tremor and pain to anxiety. Some are treatable, but the drugs can have serious side effects. It gets worse over time and there’s no cure. Yet.

We are the largest charitable funder of Parkinson’s research in Europe. We know we’re close to major breakthroughs and a cure. But right now, our focus is on fighting for fair treatment and better services for everyone affected by Parkinson’s.

During this current crisis, they need us more than ever, because Parkinson’s puts people at increased risk of complications if they get coronavirus.

We’ve adapted how we work to make sure that that help is available. But we rely solely on donations to deliver our critical support. To maintain our increased support offer, we must raise £95,000 every week for the next three months.
To support our emergency appeal, or for advice, information and support, visit www.parkinsons.org.uk, or call our free, confidential helpline on 0808 800 0303.

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