Parkinson’s patients presented with vision for the future in north London

Published in Events on 19 December 2016

More than 80 people living with Parkinson’s attended a free event at Edgware Community Hospital in north London in November, to find out more about the latest developments in Parkinson’s research and explore a vision for the future.

The event was hosted jointly between the RD-TRC, University College London and Central London Community Healthcare (CLCH), the largest provider of primary care across London.

President and co-founder of the Cure Parkinson’s Trust, Tom Isaacs (pictured, right) – who has made it his mission to find a cure for the disease, following his diagnosis with it aged 27 – opened the afternoon with a powerful message for patients on the necessity of engaging with their own condition.

Tom then went onto explain why: Parkinson’s is now classified as a whole body system syndrome rather than a neurological disease and one size doesn’t fit all. Instead, a huge amount of data needs to be collected and analysed. This in turn needs lots of patients – and a good deal of patience on their part.

Experience + Expertise = Fast track to new treatments

Tom also talked about the value of patient experience, which he believes should be seen as important as the data from lab (in vitro/vivo testing) and clinical (observations of patients via healthcare advisors); patients can help shape future Parkinson’s Research if researchers overlay patient experience with their scientific expertise.

Indeed, Tom said that gathering information from the patient, who is after all the real expert source, could help move treatment from anecdote to antidote.

Update on Parkinson’s research – Genetics and Treatments

Following Tom’s keynote speech, it was Professor Huw Morris’s turn to present an overview of his genetic research and the discovery of a causative gene variant for Parkinson’s, LRRK2, that increases risk of developing Parkinson’s.

Prof Morris is a consultant neurologist and professor of clinical neuroscience and splits his time equally between clinical work and research. His particular interest lies in genetics and how our genetic make-up can influence choosing the best medicines on an individual basis.

 

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Prof Huw Morris

And that could be key in developing treatments that halt the progress of the disease: Prof Morris said that across UCL and the Royal Free, relevant studies have recruited almost 5000 participants with and without Parkinson’s to research. But as Parkinson’s is heterogeneous (variable), treatments which have looked to have failed may be beneficial to a sub-population of the Parkinson’s group. His message was clear: clinicians need to target treatment to the most suitable patients.

Prof Morris’s team is interested in developing treatments which halt the progress of the disease and Prof Morris is optimistic for disease modifying treatments in the future, with ground-breaking work ongoing in the international Parkinson’s Disease consortium.

Parkinson’s UK younger persons survey

The views of younger people with Parkinson’s were also heard as representatives from Parkinson’s UK shared with the audience the results of their survey carried out to better understand the needs of younger sufferers.

The survey highlighted some of the barriers facing younger Parkinson’s patients, including lack of groups for younger people, lack of information and events aimed at younger people and a need for greater access to Parkinson’s nurses and peer support.

The LRRK2 Gene and Parkinson’s disease

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Dr Mie Rizig

RD-TRC funded Clinical Rsearch Fellow Dr Mie Rizig gave a brief presentation on the LRRK2 gene and Parkinson’s, followed by a Q&A session with ‘Claire’ (not her real name) and her sister.

After three years of repeated visits to her GP with unexplained symptoms, Claire eventually sent off a saliva sample to a US DNA-testing company she’d come across on the web.

But the answer was not what she was expecting: Claire did indeed have Parkinson’s but it was inheritable, thanks to the LRRK 2 gene mutation she had.

Claire said: “I found out my diagnosis online, which was very cold but what made it even worse was that I hadn’t considered the impact of inherited Parkinson’s on the rest of my family and this caused me a lot of worry.”

Claire signed up to take part in LRRK2 research run by Professor Nicholas Wood and Dr Rizig at UCL, as did her sister who said: “ After the shock of Carol’s diagnosis I felt prepared to help in any way that I could. When she told me about the study I was quite happy to be a part of it. We were not sure what the research involved but we were both re-assured by the information that we received from the research team.

“Although I am happy to take part in the research, I didn’t want to find out if I’m a carrier, so I opted out of this.”

Claire emphasised the need to consider the effect of genetic testing results on all the family – “in hindsight I wish I had gone to Professor Wood and Dr Rizig at the start because then I would have had their support to help me through the diagnosis and all its implications.”

But the final word should go to Claire’s sister: “We’ll never find a cure if we don’t do research.”

  • To listen to Dr Mie Rizig explain the role of the LRRK2 Gene in Parkinson’s disease click here.
  • If you would like to know more about the LRRK2 gene please read this leaflet. To take part or to have more information email Dr Mie Rizig or tel:07830 053553

 

Vision and Parkinson’s disease

How are thinking and memory affected by Parkinson’s? Clinical Research Fellow Dr Rimona Weil introduced her work on this, starting with a series of simple online eye tests to assess the change in vision over time, which could offer clues to how thinking and memory are also affected.

dr-rimona-weil

Dr Rimona Weil

Dr Weil’s study will also link changes in vision to genetic differences, gathered from a simple blood sample of the participant. It is hoped findings from the study will lead to new clinical trials, treatments to improve thinking and prevent disease progression and to help patients prepare for the future.

• If you would like to know more about the study, please visit the website or email Dr Weil

Brain Donation: A relative’s perspective

Why is brain donation important – and why is there a stigma surrounding it?

That was the topic of the final session of the day, in an emotional but important discussion, led by a relative’s experience and Karen Shaw, specialist nurse at the Queen Square Brain Bank for Neurological disorders.

Karen explained how research using the brain can improve diagnosis and our understanding of different diseases and how stigma may arise because people do not understand the nature of the process or because of a lack of information.

But the relative of a donor who had given their brain after death presented another perspective: “I would like to praise the professionalism of the service. After attending a conference where a consultant spoke about brain donation, I decided when the time comes I should donate my brain too and being part of my partner’s legacy in contributing to the common good.”

• If you would like more information on the brain donation service or if you have any questions please contact Karen Shaw.

Thanks to the speakers, staff and all the patients who attended the day. A special mention goes to Dr Joanne Medhurst, medical director of CLCH, and the Parkinson’s unit at Edgware Community Hospital for making the event so successful. Run by Dr’s Sally Matthews and Ayano Funaki, the Parkinson’s unit offers an integrated service for Parkinson’s patients including specialist doctors, nurses and dieticians as well as speech and language, occupational and physiotherapy.

A first of its kind in the area, the event was in high demand and over 250 people expressed an interest in attending. Unfortunately capacity was limited to 80 but plans are already in the making for a further event in spring 2017.

• For an introduction to each speaker, please click here.
• To view the results of the Parkinson’s UK Younger People survey click here, or the PowerPoint presentation here.
• To watch Dr Mie Rizig explain the role of the LRRK2 Gene in Parkinson’s disease click here
• If you would like to be notified of similar events or would like any further information please contact Alex Day.