Parkinson Congress making the world of a difference

Billy Connolly recently revealed he is suffering from Parkinsons and this has helped raise awareness. Picture: Getty

The World Parkinson Congress in Canada this week is a wonderful opportunity for people with Parkinson’s, healthcare professionals and representatives from the global research community to meet and inspire each other.

Finding exactly what triggers Parkinson’s and being able to halt, slow down or stop the progression of the condition is the challenge facing researchers across the world. The brightest and the best, including those who receive research grants from Parkinson’s UK, will be meeting in Montreal to discuss the latest advances in the search for a cure.

A small team from Parkinson’s UK, including volunteers with a passion for research and with first-hand experience of life with Parkinson’s, have travelled to Montreal for the congress, which runs until Friday, to showcase our work and learn from others from around the world.

The world congress is currently being held in Montreal. Picture: Contributed

I am thrilled that three people from our Edinburgh branch will be amongst those making the trip.

The branch has its own research interest group, chaired by Professor Ken Bowler, to provide opportunities for members with an interest in Parkinson’s research to meet, communicate, work together and generally further the cause of research within Scotland. (www.edinburghparkinsons.org/research-interest-group).

In addition, a small army of researchers funded by Parkinson’s UK will be sharing their work in Montreal, including Professor Ray Chaudhuri from King’s College Hospital in London, who will be kicking off a series of talks focused on the non-motor symptoms that can affect people with Parkinson’s.

£1 million research project on dementia

In the same session, Professor David Burn from Newcastle will discuss his research on neuropsychiatric symptoms, including his ground-breaking £1 million research project on dementia.

On the final day, Professor Roger Barker from Cambridge University will take to the stage to share the very latest advances in cell and gene-based technologies for Parkinson’s.

And Dr Rob Skelly from Derby will be explaining the results of his innovative Parkinson’s UK funded project using specialist units to improve hospital care for people with Parkinson’s.

The director of research and innovation for Parkinson’s UK, Dr Kieran Breen, is particularly pleased to see researchers that the charity has supported throughout their careers setting the agenda at such an important event.

He believes that the congress connects the world’s best brains across all areas to accelerate research to improve life for all people with Parkinson’s, which affects 127,000 people in the UK.

Parkinson’s is progressive – and there is currently no cure. It develops when dopamine producing nerve cells in the brain die, and typical symptoms are stiffness, tremor and slowness of movement.

Around 10,000 in Scotland living with Parkinson’s

Alongside the physical problems, a host of less visible symptoms can develop, like anxiety, depression, sleep disorders, bowel and bladder disorders, and dementia.

Around 10,000 people in Scotland are living with Parkinson’s and I am proud of what we have achieved in supporting those who need us, but we need to keep working as hard as we can to ensure that we achieve our goal of no-one facing Parkinson’s alone.

I know that many health services in Scotland have improved in recent years and that having access to a Parkinson’s nurse specialist is crucial.

Thanks to our funding and campaigning work on this issue, nearly everyone with Parkinson’s in Scotland now has this professional support, which is a wonderful achievement.

When somebody in the media spotlight – like Scotland’s very own Billy Connolly – bravely speaks out about having Parkinson’s, it helps to create much-needed public awareness and encourages people to take the first step to seek help.

In the same way, our network of more than 40 volunteer local groups in Scotland exists to offer support to people living with this challenging condition.

For example, people living in the Lothians can take part in hydrotherapy, dance or exercise, and access carer support and respite care through the Edinburgh branch. Many life-long friendships are forged at our meetings, and being able to share fears and anxieties as well as laughter can be a lifeline.

I believe this is a very exciting time to be involved in Parkinson’s research. I hope that the World Parkinson Congress will be truly inspirational, and look forward to hearing from our Scottish volunteers on their return.

We will be eagerly following the congress via Twitter and Facebook, and more information can be found on www.parkinsons.org.uk, as well as links to our local groups.

• Katherine Crawford is Scottish director of the charity Parkinson’s UK

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