Around 145,000 people live with Parkinson’s in the UK, and it’s the fastest-growing neurological condition in the world. For World Parkinson’s Day, Dr Emma Lane from the BRAIN Unit discusses the disease and some things you may not know.

What is Parkinson’s disease?

Parkinson’s disease is a neurological condition that causes progressive damage to the brain over many years. People with Parkinson’s don’t have enough of the chemical dopamine because some of the nerve cells that make it have died.

There are lots of different treatments and therapies available to help manage the condition.

It affects around one in 500 people but this increases with age, rising to one in 100 people over 60 years old and 3 in 100 people over 80. Symptoms can include tremor, slow movement and stiff and inflexible muscles.

People with the condition may also experience mental health problems such as depression and anxiety.

Facts about Parkinson’s disease

While Parkinson’s diagnoses continue to increase around the world, it’s not always the most understood condition.

1. Parkinson’s has a scent

There are some people who can actually ‘smell Parkinson’s’ and this has led to some brilliant research into how the skin may be affected by Parkinson’s and whether this can be used to detect the disease. In contrast, another symptom of Parkinson’s can be the loss of smell of certain foods like bananas, dill pickles, and liquorice.

2. Parkinson’s is more than ‘just’ a motor condition

Nonmotor symptoms are getting more attention from doctors and researchers. These symptoms include but are not limited to, cognitive impairment or dementia (usually in later stages), anxiety, depression, fatigue, and sleep problems.

For some patients, nonmotor symptoms are more disabling than motor symptoms, which are the focus of treatment.

Be sure to talk to your doctor about other issues so you can get all of your symptoms addressed.

3. Parkinson’s is not a fatal disease

Although a diagnosis of Parkinson’s is devastating, it is not, as some may still believe, a death sentence.

Parkinson’s disease is not a direct killer, like stroke or heart attack. Much depends on the quality of your care, both from your doctor and yourself. There are some very good drugs that help manage many of the symptoms.

The gait and balance changes may make you more vulnerable to falls. These are reasons why exercise and physical therapy are so important.

4. No two people have exactly the same symptoms

The progression of symptoms is often a bit different from one person to another due to the diversity of the disease and changes as the disease progresses.

Many people think of Parkinson’s as the ‘one where you shake’. In fact, only about a third of people experience tremors as part of their disease.

People with Parkinson’s may experience slowness of movements, limb rigidity, changes in the way they walk, and problems with balance.

A change in handwriting, specifically handwriting that’s become smaller or more crowded, or a less expressive face, are also symptoms.

5. The cause is unknown and there is currently no cure

What causes Parkinson’s remains largely unknown.

Genetics cause about 10 to 15 percent of all Parkinson’s. The other 85 to 90 percent of cases are classified as ‘sporadic’ or ‘occasional’.

Although there is currently no cure, which organisations like Parkinson’s UK are working to change, treatment options vary and include medications and surgery.

6. Running or walking?

People with Parkinson’s often find other forms of activity easier than walking.

Running or riding a bike can be easier than walking.

Getting through doorways can be a particular challenge and people with Parkinson’s have strategies to deal with circumstances that make them ‘freeze’ at lines on the carpet or doorways.

7. What you eat makes a difference

The drugs that treat Parkinson’s disease help replace the chemical in the brain, dopamine, that is lost as the brain cells die. This can work very effectively but it can be improved with changes in diet.

High levels of protein in the diet can stop the drugs from getting to the brain to do their job, so managing when and what you eat around your medication can make a huge difference to their effects.

8. Treating Parkinson’s

For people with Parkinson’s, exercise is more than healthy, it’s a vital component of maintaining balance, mobility, and activities of daily living.

Exercise and physical activity can improve many of its symptoms. A minimum of two and a half hours a week can slow the decline in quality of life.

Tai chi, yoga, Pilates, dance, weight training, and non-contact boxing can all have positive effects.

Your Parkinson’s specialist will be able to support the management of your symptoms with medication and guidance for other forms of support

Seeking medical advice

If you’re concerned that you or someone you know may have symptoms of Parkinson’s disease then it’s advised to see a GP.

They’ll ask you about the problems you’re experiencing and may refer you to a specialist for further tests.

Work at the BRAIN Unit

Dr Lane concludes: “10 years ago, commercial research into neurodegenerative diseases was struggling. There has been a huge shift recently with several exciting and diverse approaches to treating Parkinson’s reaching clinical trials.

“At the Brain Unit, we are passionate about ensuring our patient community voices are heard as part of these exciting developments and they are on this journey with us in the search for effective treatments.”

Learn more about work underway with BRAIN Involve, the BRAIN Unit’s public and patient involvement group made up of people who are, or have been, affected by neurological diseases.

Purple Day for Epilepsy takes place every year on March 26. To mark the global awareness day this year, Peter Roberts from BRAIN Involve has kindly shared his own story of being diagnosed with epilepsy and how he has supported neuroscience research at Cardiff University over the past two decades.

Peter’s first epileptic seizure was in the bathroom on 12^th September 1994. It was followed by another seizure the next month and another in March 1995. Peter visited the hospital for a check-up and minor scan and no cause was found, but it was thought to be idiopathic epilepsy.

Peter said: “My doctor placed me on Epilim Chrono and I lost my driving licence for a year. As I worked in Aberdare and I had to travel to and from Barry, this caused a few problems, especially as commuting by train wasn’t totally reliable.

“I was taken off the tablets in 2006 but in 2007 I had another seizure and lost my licence again for a year. I have, as a precaution, stayed on Epilim ever since. To this day no cause has been found for my problem.”

Peter’s diagnosis of idiopathic epilepsy and the medication he takes to manage the condition have had an impact on his life.

He added: “Losing my driving licence has been the greatest inconvenience for me and I think Epilim has caused me recurring minor skin problems. It has also impacted my wife to a minor degree as she is always there to check I’m taking the tablets!”

After his diagnosis, Peter was asked to join the WERN group (Welsh Epilepsy Research Network): a group of people with epilepsy, led by doctors and researchers from Cardiff University, who met once a month to discuss their experiences and challenges.

Peter said: “Patients and family members were welcome at the WERN meetings which were held in Cardiff or Bridgend. One of the main doctors was Dr Cheney Drew and when this group folded, Cheney asked me if I would join BRAIN Involve. I gladly accepted and the rest is history.

“I have talked to researchers, students, and patients about likely problems and now meet people with Multiple Sclerosis, Parkinson’s Disease, and Huntington’s Disease.

“There are various levels of epilepsy, mine is minor and appears well controlled. Others are not so lucky, having multiple seizures every day and night and requiring full-time care. This is bound to have an effect on their education, job prospects, and all that follows in their future life.

“Research, like the work happening at the BRAIN Unit, is so vital for these people so that they can regain some sort of normality in everyday life. I’m really pleased to play my part in supporting the research by being a member of BRAIN Involve.”

BRAIN Involve is a public involvement group made up of people who are, or have been, directly affected by neurological diseases such as epilepsy, Huntington’s disease (HD), Multiple Sclerosis (MS) or Parkinson’s disease (PD).

By bringing their personal experiences to the research table, members contribute to the design, development, implementation, and dissemination of the BRAIN Unit’s research around brain repair and developing new therapies for brain conditions.

Peter concluded: “Sharing our lived experiences of epilepsy and other neurological diseases at BRAIN Involve can really have an impact on shaping the neuroscience research happening at Cardiff University and increase awareness of these conditions.

“If any member of the public knows of a family member or friend within any of the four problem areas listed above, please come along to our next meeting. We are currently meeting virtually and you would be very welcome. Never be afraid of asking for help, there will always be someone only too glad to be of assistance.”

BRAIN Involve brings together patients, carers, and academics to shape cutting-edge research into neurological and neurodegenerative diseases. You can find out more about how to get involved on our website.

A special thanks to Peter for sharing his story for Purple Day 2022.

In the 2018-20 award, the BRAIN Unit received funding to develop an Electronic Patient Record (EPR) system supporting clinical care and deep patient phenotyping in Multiple Sclerosis (Cardiff and Vale and Aneurin Bevan), Parkinson’s Disease (Abertawe Bro-Morgannwg) and Epilepsy (Cardiff and Vale).

The system is deployed via a secure internet-facing server behind the NHS firewall, allowing researchers to securely collaborate and contribute patient-level datasets. Towards the end of the award, a new multi-disciplinary module for the epilepsy surgery programme (Cardiff and Vale) was deployed. The PatientCare database is now well integrated and has cross-disciplinary use, improving the care of patients.

Developing the EPR system

We now wish to expand on this platform to develop research-ready cohorts, where detailed diagnostic and clinical phenotype data is maintained alongside patients’ consent to be approached for research, and tissue biologicals, most commonly serum and plasma for genetic and other disease biomarkers are collected and stored.

A programme is already in place for Multiple Sclerosis for patients in South Wales led by Professor Neil Robertson, utilising a clinical database ‘PatientCare’ and the Wales Neuroscience Tissue bank. We are developing a similar pipeline for patients with epilepsy, the PatientCare database is already being used to capture diagnostic and treatment data as part of routine clinical care.

Additional funding from the BRAIN Unit will go towards extending this work to a formal research proposal with NHS Ethics and R&D approval for tissue and para-clinical (namely brain scan (MRI) and electroencephalograph (EEG)) data collection with patient consent for storage and onward research, for patients with epilepsy attending specialist clinical in Cardiff and Vale and Cwm Taf health boards.

This supports one of the main objectives and strengths of BRAIN, which is the close bidirectional link between academic research and routine NHS clinical care, giving access to patients with neurological conditions attending outpatient clinics into clinical research and clinical trials.

Expanding the team

To execute this research, we welcomed Valerie Anderson to the BRAIN Unit team, to support an epilepsy clinical database and sample collections setup, initially working on the protocol, ethics and R&D approvals.

This will be of benefit to other researchers in epilepsy, who will have access to the data and samples collected, create research-ready cohorts for clinical trials and studies as they develop, that would be available for any BRAIN Unit investigators and outside collaborators. And it will open opportunities for collaborations with other research initiatives in the UK and internationally.

Valerie previously established a similar project in Multiple Sclerosis. Her experience and knowledge from doing this will allow us to proceed at pace in getting things set up for epilepsy, and then to work further on the running of the project once set up.

Once established, as envisaged within the 12 month funding period recruitment, consent, sample collection and data collation would continue through standard clinical encounters. Data would be available for research and follow-on funding would be sought for both infrastructure and project-specific support.

Jack Fisher a Cardiff University Student Doctor currently working with BRAIN researcher Dr Malik Zaben won the award for best oral presentation at this year’s CITER Annual Scientific Meeting.

The Cardiff Institute for Tissue Engineering and Repair Annual Scientific Meeting (CITER ASM) took place virtually this year. This event is an opportunity for academics, early career researchers, MSc students, PhD students and undergraduates to discuss the latest research findings in the research areas of Stem Cell Science, Tissue Engineering and Repair and Disease Translation.

Jack Fisher’s project examined the effects of injury condition medium on the expression of the transcription factors Pax6 & TBr2- key regulators of cortical neurogenesis.

Fisher is the second BRAIN Unit researcher to be awarded first place for his oral presentation as Dr Ronak Ved proudly took home the prize in 2020.

Dr Ronak Ved has been awarded a Medical Research Council (MRC) Clinical Research Training Fellowship in the field of traumatic brain injury.

The prestigious scheme provides predoctoral researchers with the opportunity to foster a competitive PhD research, moving towards a career as a clinical scientist.

Ronak explained: “As a neurosurgical registrar at the University Hospital of Wales, I regularly witness the devastating effects traumatic brain injury (TBI) can have upon patients and their families.

“Thousands of patients suffer a head injury every year, and this costs the NHS billions of pounds in resources. This has inspired me to want to investigate how neurotrauma affects brain tissue, and to try to identify ways in which we may be able to protect or repair brain cells in patients who have had a head injury.”

There are few therapeutic agents which have been shown to protect brain cells after head injuries.

“This might partly be because most studies in this field have a) focussed on using animal models of TBI, and b) only rarely reviewed how neurotrauma damages connections between brain cells, known as white matter.

“My project will focus on using human tissue samples, kindly donated by patients of the neurosurgical department at the University Hospital of Wales, to assess how trauma influences the cells that make up the white matter of the human brain. We’ll also be able to use these human cell samples to search for drugs which might protect or repair human white matter in people who have had a head injury.”

Ronak will be working under the supervision of Dr Malik Zaben and Professor Liam Gray, in the Brain Research And Intracranial Neurotherapeutics (BRAIN) Unit of Cardiff University.

“The opportunity to work with human brain tissue is a rare privilege, and I am very much looking forward to working on this exciting project. We hope to use it as a springboard for further work which would support our clinical practise as neurosurgeons in the future, to help improve outcomes for patients who have suffered a TBI.”

Get involved

Interested in sharing your experience to shape research? Or are you a researcher looking to include the public in your work?

We’d love to hear from you. Complete our short form to register your interest.

 

A researcher from the BRAIN Unit and Neuroscience and Mental Health Research Institute (NMHRI) at Cardiff University has been awarded the Guarantors of the Brain Fellowship.

Dr. Malik Zaben works across the Division of Psychological Medicine and Clinical Neurosciences at Cardiff University. He is a lecturer in neurosurgery with a special interest in understanding neurogenesis and neuroplasticity after traumatic brain injury (TBI). His research explores potential therapeutic approaches targeting neuroinflammatory pathways to limit brain damage after injury, and enhance repair.

The Guarantors of Brain is a charity that aims to promote teaching, education, and research in neurology and related clinical-academic disciplines and Dr. Zaben is a recipient of their Brain Clinical Post Doctorial Fellowship for 2021.

Dr. Zaben said “I am delighted to receive the Guarantors of Brain Fellowship award.

“Traumatic brain injury (TBI) causes significant mortality and morbidity globally, with many survivors suffering longstanding neurocognitive, motor, and sensory deficits that profoundly impair their ability to function independently.

“Understanding how neuroinflammation influences cortical neuronal regeneration after TBI is essential to facilitate the identification of novel therapeutic strategies to improve TBI-associated neurological deficits.”

Researchers from the BRAIN Unit and NMHRI have previously undertaken pre-clinical observations in animal models which highlighted positive steps forward in the development of pharmacological strategies to enhance brain repair after injury. However, key neuroinflammatory processes after injury remain poorly understood, particularly in the human brain.

Dr. Zaben added: “Although animal models have been useful in understanding many processes in TBI, the extent to which TBI animal models replicate the human brain’s response to injury has been questioned rendering them less useful for exploring pharmacological approaches.

“The new fellowship award will facilitate focused research on the use of adult human cortical cells.

“The important damage-associated molecule, High-Mobility Group Box 1 (HMGB1), impacts stem cells’ fate. HMGB1 works via toll receptor subtype 4 (TLR4) and the receptor for advanced glycation end-products (RAGE) to initiate neuroinflammation in many brain pathologies. I will examine the HMGB1-TLR4-RAGE pathway in human cortical inflammation and neuronal regeneration after injury, examining internal nervous system stem cell capacity to repair the injured human brain.

I’d like to thank the Guarantors of the Brain for this fellowship and look forward to undertaking further lab-based research over the next year, made possible by this award.”

Read more about Malik’s ongoing research into traumatic brain injury here.

We’re looking for a Research Assistant to work in an exciting collaboration between two Health and Care Research Wales funded infrastructure centres: the Wales Cancer Research Centre and the BRAIN Unit.

The post is available immediately and is fixed-term for one year.

The successful candidate will be required to contribute to research focussing on obtaining and culturing brain tumour tissue, supporting the neuro-oncology research of a collaborative group, including Professor Gray (3D culture model), Dr. Siebzehnrubl (personalized medicine research in brain tumours) and Professor Parker (oncolytic viral therapies) and Prof. Baird (telomeres).

Closing date: Sunday 20 June 2021

More information available here.

Dr Zaben is a lecturer in neurosurgery with a special interest in understanding neurogenesis and neuroplasticity after traumatic brain injury (TBI). His research explores potential therapeutic approaches targeting neuroinflammatory pathways to limit brain damage after injury, and enhance repair.

This year has been another successful one for our Traumatic Brain Injury research team at Cardiff University, despite the challenges that the COVID-19 pandemic has caused.

We have been able to address some new facets of our research area covering the broad spectrum of basic science and clinical research.

The research

The COVID-19 pandemic meant that we had to leave the laboratory in mid-March of 2020 and were not able to return until mid-July.

Despite this major disruption, we are now able to continue our research in-house. Building on our previous findings, we have generated novel and relevant data on the inflammatory pathways triggered by seizures and Traumatic Brain Injury (TBI), which are heavily implicated in long-term neurocognitive deficits in patients from both categories.

Our key target of interest is HMGB1, a protein that is released by immune cells significantly after epilepsy and TBI and increasingly recognised as the ‘master switch of neuroinflammation in the acute phase after injury.

Elevated levels of HMGB1 in the blood of patients with TBI are associated with worse outcome in patients with epilepsy as well as TBI. Blocking this protein in a time-specific manner may hold the answer to ameliorating the neuro-toxic milieu created after injury and improving brain repair.

Whilst we previously observed a significant release of HMGB1 after injury, we have now discovered that HMGB1 has a detrimental effect on neural stem cells’ ability to generate new neurons or repair nerve cell fibres after injury.

This year we have also identified the receptors and pathways involved in the above-mentioned effect and, more importantly, managed to reverse HMGB1 effects using some novel drug strategies.

These findings pave the way for identifying potential drugs that can be used to enhance nerve cell repair after injury.

We have now published some of our key findings in two peer-reviewed papers in the Journal of Brain Science and Journal of Scientific Reports.

We have submitted our work on pathways involving HMGB1 and other inflammatory cytokines involved in epilepsy for publication at the Journal of Neuroinflammation (under revision).

What next?

Moving forward, we will be validating our findings in human brain tissue. With the consent of patients undergoing neurosurgery, we will obtain small samples of normal brain tissue that would otherwise have been discarded as a routine part of the surgery.

We can then grow these cells in a specialised 3D in vitro culture system that closely mimics their natural parent environment in vivo. With judiciously calculated weight drop injury models; we are studying the effects of blocking HMGB1 on improving brain repair after injury.

With evidence from both rodent and human tissue, we hope to elucidate the potential detrimental role of HMGB1 in TBI and provide promising therapeutic targets for improving outcomes in TBI patients.

We continue to make exciting progress and we are incredibly grateful for our funders’ continued support.

Our Public Involvement lead Dr Emma Lane, is inviting researchers to meet our public involvement group, BRAIN Involve.

• Are you interested in meeting members of the public?
• Do you want to find out about the lived experience of someone with the disease you are studying?
• Would you like to share your knowledge with them?
• Would you be interested in a new perspective on your research?
• Do you work in a lab and don’t think public involvement would work for you?

If you answer ‘yes’ to any of these, then come and find out more at BRAIN Involve!

Many researchers will have been involved, to a greater or lesser extent with public engagement activities.

Public involvement goes a step further and invites members of the public to get involved as public contributors to research. They can often comment on your work in a way that is both insightful and different to the perspective from your research colleagues and supervisors and can offer invaluable input to public-facing elements of your research. 

It can be more challenging but even if you are lab-based this can be highly rewarding, motivating and innovative!

Who are we?

At BRAIN we believe that active involvement from members of the public leads to research that is more relevant, more reliable and more likely to be used to improve health and social care services.

BRAIN Involve is the public and patient involvement group that helps to inform our research activities. It is made up of people who are, or have been, affected by neurological diseases such as Epilepsy, Huntington’s disease, Multiple Sclerosis or Parkinson’s disease.

We are open to any of our researchers at any level who wants to share their research on the brain with our BRAIN Involvers, anyone looking for PPI contributors and anyone looking to find out more.

Get in touch