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COVID lockdown ‘catastrophic’ for people with Parkinson’s

Fatigue, depression, anxiety and slowness of movement all worsened during the pandemic, new research reveals

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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. 

Parkinson's

Nightmares ‘could be a sign of Parkinson’s’

A study of older men found those having frequent bad dreams were twice as likely to be later diagnosed with the disease

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Older adults experiencing bad dreams or nightmares could be showing early signs of Parkinson’s disease, new research has found. 

A new study showed that in a cohort of older men, those experiencing frequent bad dreams were twice as likely to be later diagnosed with Parkinson’s as those who did not.

Previous studies have shown that people with Parkinson’s disease experience nightmares and bad dreams more frequently than adults in the general population, but using nightmares as a risk indicator for Parkinson’s has not previously been considered.

Lead author, Dr Abidemi Otaiku, of the University of Birmingham’s Centre for Human Brain Health, said: “Although it can be really beneficial to diagnose Parkinson’s disease early, there are very few risk indicators and many of these require expensive hospital tests or are very common and non-specific, such as diabetes.

“While we need to carry out further research in this area, identifying the significance of bad dreams and nightmares could indicate that individuals who experience changes to their dreams in older age – without any obvious trigger – should seek medical advice.”

The team used data from a large cohort study from the USA, which contained data over a period of 12 years from 3,818 older men living independently. 

At the beginning of the study, the men completed a range of questionnaires, one of which included a question about sleep quality.

Participants reporting bad dreams at least once per week were then followed up at the end of the study to see whether they were more likely to be diagnosed with Parkinson’s disease.

During the follow-up period, 91 cases of Parkinson’s were diagnosed. 

The researchers found that participants experiencing frequent bad dreams were twice as likely to develop the disease compared to those who did not. 

Most of the diagnoses happened in the first five years of the study.

Participants with frequent bad dreams during this period were more than three times as likely to go on to develop Parkinson’s.

The results suggest that older adults who will one day be diagnosed with Parkinson’s are likely to begin experiencing bad drams and nightmares a few years before developing the characteristic features of Parkinson’s, including tremors, stiffness and slowness of movement.

The study also shows that dreams can reveal important information about our brain structure and function and may prove to be an important target for neuroscience research.

The researchers plan to use electroencephalography (EEG) to look at the biological reasons for dream changes, and will also look at replicating the findings in larger and more diverse cohorts and explore possible links between dreams and other neurodegenerative diseases such as Alzheimer’s.

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‘Involve patients in Parkinson’s clinical research’

A new study highlights measures and recommendations to better involve patients with Parkinson’s disease in research

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The importance of involving patient perspectives in clinical Parkinson’s disease studies has been highlighted through a new study. 

Although there is a growing trend to involve patients in clinical research, specific guiding principles for engaging individuals with Parkinson’s disease have not been established. 

But new research emphasises the power of the patient voice, and sets out a series of measures and recommendations that can be considered when involving patients with Parkinson’s disease.

“Including patients helps to design better studies by addressing relevant research questions and defining outcomes that actually matter to patients,” explained lead author Dr Marjan J. Meinders, Radboud University Medical Center. 

“It can help ensure that protocols are tolerable and that the trial outcomes actually matter to patients.”

Much remains to be learned about the best methods and exact impacts of patient engagement in research in general, and more specifically, about the specific challenges that come with Parkinson’s disease.

Although various international governmental funding bodies have translated the existing literature on patient engagement in research into frameworks for engagement, specific guiding principles for Parkinson’s disease are thus far lacking.

This Call to Action for empirical research draws on the lived experiences of co-authors Dr Anne C. Donnelly and Margaret Sheehan, both members of the Patient Council, Michael J. Fox Foundation for Parkinson’s Research. 

These individuals with Parkinson’s disease have served as expert patients in a project that aimed at incorporating patient preferences into the design and evaluation of a clinical trial. 

Their experiences confirm those of other patient researchers in the Parkinson’s community, who emphasise the importance of patient involvement in research.

“Parkinson’s disease comes with specific challenges. For example, issues such as depression, apathy, fatigue, or frontal executive dysfunction may be factors that could hamper effective patient participation in research,” noted Ms Sheehan. 

“Many patients experience diurnal fluctuations, with a worsening of symptoms during the day. This would imply that group meetings to discuss the research project in the late afternoon or evening could be a challenge. 

“Medication could create further challenges, for example when patients are troubled by compulsions, which are secondary to treatment with dopamine receptor agonists.”

“There is also the issue of the tremendous inter-individual variability across different individuals living with Parkinson’s disease,” added Dr. Donnelly. 

“So, inclusion of just a limited number of patient researchers will inevitably only offer a restricted perspective of the overall needs of the worldwide Parkinson’s disease population. 

“Researchers should be aware of these Parkinson-specific challenges and develop strategies so that patient researchers can actually make the impact that is so greatly needed.”

Inspired by the experiences of the patient researchers, the authors propose a set of measures and recommendations that can be considered when involving patients with Parkinson’s disease. 

These include: recognising that travel may be difficult for some and holding online conference calls to enable a wider group to participate; understanding that some patients have very quiet voices and giving them a chance to repeat themselves; pairing the patient with an expert when speaking in a public setting; using patience and handouts to help people with a diminished ability to remember and concentrate; and scheduling calls and meetings when patients are less likely to experience off time and fatigue.

“Evaluations of studies in which patients are involved report cost savings because of faster recruitment, lower drop-out rates due to successful engagement strategies, and consequently, faster completion of the clinical trial,” noted co-author Professor Bastiaan R. Bloem, Radboud University Medical Center. 

“Researchers perceive their work as more rewarding, enjoyable, and meaningful when patients are actively involved. 

“Patients can also take a shared responsibility for ascertaining that the study findings actually find their way to the scientific community and wider general audience via accessible publications.”

The authors challenge investigators involved in health-related Parkinson’s disease research to look ahead and purposely address emerging best practice standards for engaging patients in clinical study design and execution.

“Importantly, systematic identification of certain barriers and facilitators for active patient engagement and finding solutions on how to remove barriers are greatly needed to further develop guiding principles for effectively involving patient researchers,” the authors conclude. 

“Ultimately, all researchers should regard patient participation and co-creation in research as a vital aspect of learning and improving the value of research in Parkinson’s disease.”

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Charco Neurotech works with experts to test pioneering device

The medtech startup is collaborating with Queen Mary University of London to test its CUE1 for Parkinson’s patients

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Medtech startup Charco Neurotech is working with leading experts in Parkinson’s disease to test its pioneering device, created to help alleviate symptoms of the condition. 

Charco is collaborating with Queen Mary University of London (QMUL) to test its device, CUE1, and help support its research and development. 

The CUE1 is worn on the chest and delivers vibrations that early research suggests may help reduce several symptoms of Parkinson’s disease, an incurable brain disorder that causes difficulties with movement.

Current treatments for the symptoms of Parkinson’s, the world’s fastest growing neurodegenerative condition, are often based around drug-based interventions, but CUE1 could provide a non-pharmaceutical option to add to existing treatments.

Lucy Jung, CEO and co-founder of Charco, said: “We could not be more happy to be working together with QMUL on this project. 

“Working with such an institution and leaders in the world of Parkinson’s will be instrumental and invaluable in translating research and development to support this intervention. 

“This will help us to improve the quality of life for people with Parkinson’s.”

Charco Neurotech was founded in 2019 by Lucy, then a student on Imperial College London’s master’s programme in Innovation Design Engineering, and physician Dr Floyd Pierres, who were inspired by the work of the 19th century neurologist Jean-Martin Charcot.

Their creation, the CUE1, is a non-invasive wearable device, and works by delivering localised vibrations to the chest that in turn send signals to the nervous system which pre-clinical research suggests could help to reduce symptoms such as slowness, stiffness and problems with balance.

With support from entrepreneurship programmes at Imperial and an early seed investment by the Imperial College Enterprise Fund, the company went on to receive $10 million investment in a round led by Amadeus Capital Partners and Parkwalk Advisors, reportedly the 2021 largest seed round in Europe for a health technology device.

The team will now work with academics at QMUL on research as part of a Knowledge Transfer Partnership (KTP), a programme by Innovate UK which offers companies substantial funding to access academic expertise from universities such as QMUL, Imperial, and others across the UK.

Charco and QMUL are now searching for a KTP Associate, a graduate who will spend time divided between the company and university leading a project to further test the device, optimise its settings and body positioning, and design a formal clinical trial.

QMUL knowledge base lead, Dr Alastair Noyce, consultant neurologist and clinical reader in the Wolfson Institute of Population Health, said: “We are very excited to have the opportunity to partner with Charco Neurotech and investigate the role that the CUE1 device has in treating challenging symptoms of Parkinson’s. 

“We know that it is beautifully designed and has yielded benefits for some patients, but now it is time to investigate just how much it can offer to a wider group with Parkinson’s.”

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