Educating the experts: working with occupational therapists

Daiga HeistersThis week I’ve been in sunny Brighton for the 33rd Annual Conference and Exhibition of the College of Occupational Therapists. This is the second year the Parkinson’s Disease Society has provided educational information at the event, and it is really refreshing how well it has all been received by the delegates.

We know occupational therapy is a valuable treatment for the physical effects of Parkinson's, and good therapy can really help people maintain independence with tasks like dressing, cooking and getting out and about.

Some of our recent research with therapists found that no one agreed what the best treatments were for Parkinson’s, so we approached the College of Occupational Therapists to work with us on some detailed 'Best Practice Guidelines' on Parkinson's management for professionals.

The occupational therapists I spoke to in Brighton were delighted to talk to me about their ideas for the 'Best Practice Guidelines', which they see helping them to enhance the quality of life for people living with Parkinson's. The guidelines are due to be published in late September, 2009.

Daiga Heisters is National Education Advisor at the Parkinson's Disease Society

Fundraising in the credit crunch

On Sunday, 21 June, the BBC Radio 4 Appeal, which takes place each week, will feature journalist and presenter John Stapleton on behalf of the Parkinson's Disease Society.

John Stapleton - who recently supported us by signing up to our Parkinson's Brain Donor Register during Parkinson's Awareness Week - will appeal for donations in one of the most challenging economic climates that many of us can remember. But the search for a cure for Parkinson's is incredibly important, meaning we must work harder to remind the cash-strapped public why.

Recent appeals, like The Time is Now, launched during Parkinson's Awareness Week, showed that people are still willing to donate despite the financial difficulties they may be facing - but this doesn't make us complacent. Instead, we are so very grateful that our supporters are able to continue to fund our work.

Please help us make this campaign a success by encouraging friends and family to tune in to BBC Radio 4 (92-95 FM) on Sunday at 7.55am or 9.26pm.

You can also donate to the Parkinson's Disease Society on our website.

Paul Jackson-Clark is Director of Fundraising at the Parkinson's Disease Society

Exercising for a fit and healthy brain

Dr Kieran Breen Last week I was at the Movement Disorder Society's 13th International Congress of Parkinson's Disease and Movement Disorders in Paris, along with 4,500 other researchers from around the world.

There were lots of reports from researchers, sharing information and hope from different studies and trials around the world. But one thing that really stood out to me was a session from Carl Cotman, a researcher from the US who showed that exercising actually changes the way the brain works.

Parkinson's is all about the brain - dopamine-producing brain cells die, causing the symptoms - and as the cells keep dying, so the condition progresses. People with Parkinson's are also at a much higher risk of dementia, which means anything to keep the brain 'fit' can only be a good thing.

Carl's work put rats on treadmills and tested them in mazes. Rats who exercised had better memory and learning! And now there are studies underway in the Netherlands that take this breakthrough further, testing if exercise for people with Parkinson's could slow the progression of the condition.

The Parkinson's Disease Society's special interest group SPRING is holding a conference in September this year to bring researchers together to explore how exercise can be used as a 'treatment' for Parkinson’s in the same way that medication is used now. Maybe there will even be a section on how Nintendo Wii can help Parkinson's!

If you have found that exercising helps your Parkinson's, please let us know as we'd love to hear from you.

Dr Kieran Breen is Director of Research and Development at the Parkinson's Disease Society

Carers - the UK's 'secret service'

Steve FordToday is the start of Carers Week 2009 (8-14 June). Every year the week is held to raise awareness of the six million carers in the UK - including those who care for the 120,000 people with Parkinson’s – each of them an unsung hero.
Carers Week logo
We speak to carers all the time who continue to work under extreme pressure. In Northern Ireland, Myrtle looks after her husband who has Parkinson’s. She told us that while people may understand the physical side of things, they don’t acknowledge the extra every-day workload that falls to her. Since her husband became ill Myrtle’s household responsibilities have doubled, and she even has to work part time as she is ineligible for Carer’s Allowance.

We at the PDS agree that carers are the UK’s ‘secret service' and a Carers Week survey by YouGov of over 2,000 people shows that we're not alone. Six out of seven people surveyed(86%) believe that carers make a valuable contribution to society, behind only nurses (91%) and firefighters (90%).

We want to hear from people who think their carer is an unsung hero, or who are carers themselves working under pressure. Leave a comment below or join in the discussion on our carers' forum.

Thanks to all the UK’s carers for your hard work – we can’t imagine what would happen without you all.

Steve Ford is Chief Executive of the Parkinson's Disease Society

Why glowing monkeys offer hope for Parkinson's

Dr Kieran Breen Last week you may have seen news about ‘glow-in-the-dark’ monkeys that may help lead towards a cure for Parkinson’s. It sounds like science-fiction, but the news stories refer to a major scientific breakthrough.

Japanese scientists have inserted a jellyfish gene - that glows under fluorescent light- into the DNA of marmosets. The monkeys are special because the jellyfish gene, easily visible in the cells where it is present, remains within the cells from one generation of monkeys to the next- the first time this has been successful in non-human primates.

So why is this exciting for Parkinson's? Well, this new milestone could lead us one step closer to a cure because marmosets have such a close genetic relationship to humans.

We know that genes play a large role in why people develop Parkinson's and for years, scientists have been studying the genes implicated in the condition in mice, worms and fruit flies. But there is a big difference between mice and men, and this might be the reason why we still haven’t found a cure.

So now scientists will be able to study genes as they are passed on in the marmosets, study what may cause Parkinson’s to develop, and search for new drugs and other treatments. But instead of using the fluorescent genes, we can use genes that are responsible for certain forms of inherited Parkinson’s.

Research into a cure for Parkinson's is constantly developing. If you are interested in keeping up to date about current research, subscribe to or download a copy of Progress, the quarterly research magazine of the PDS.

Dr Kieran Breen is Director of Research and Development for the Parkinson's Disease Society