Making Parkinson's research a priority

Steve FordMembers of the Parkinson's Disease Society (PDS) make research a real priority, especially those who are members of the Special Parkinson’s Research Interest Group (SPRING). The group holds an annual conference to bring together leading international researchers to maintain the focus on finding a cure for Parkinson’s disease.

On Thursday SPRING hosted their 6th biennial conference in London for researchers. The one day event, based on the theme ‘Parkinson’s disease: the Pieces of the Puzzle,’ attracted over 100 international researchers. Some of the topics included: genes; Lewy bodies in nerve cells; why certain nerve cells are vulnerable in Parkinson’s, and what might stop or slow the progression of Parkinson's.

The conference has been a great success. This type of meeting complements others organised by the PDS, as it brings together researchers from different backgrounds to provide valuable discussions into Parkinson’s and where the gaps in knowledge reside.

PDS is determined that we find a cure for Parkinson's - and by that we mean that people with Parkinson's are able to live a life free of the symptoms. You can read about the type of research PDS funds in our research pages.

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

Younger Parkinson's Network

Steve Ford Yesterday, the Younger Parkinson’s Network (YPN) of the Parkinson's Disease Society elected its new committee for 2009. Congratulations to new Chair Tina Walker, who is committed to raising awareness of Parkinson’s and is already an active member of the YPN.

The YPN gives support and information to people of working age affected by Parkinson’s. Members benefit from support groups and social activities and the newly relaunched UP magazine
UP magazine April 2009
A YPN conference was held in March to discuss issues affecting younger people - such as work, children, prescription charges, or appearing 'drunk' and getting reported to the police!

One in 20 people diagnosed with Parkinson's is under 40, which is something a lot of people don't realise- including healthcare professionals. This is one reason many younger people are incorrectly diagnosed as having frozen shoulder or essential tremor.

Younger people with Parkinson's are heavy users of the main Parkinson's Disease Society website and represent the majority of people taking part in our discussion forum

To find out more about joining the Younger Parkinson's Network or finding support groups local to you, please visit our Younger Parkinson's Network page.

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

Making benefits fairer

Last week our campaigning team convinced Fra McCann, Member of the Legislative Assembly in Northern Ireland, to speak out for the 12,000 people with Parkinson’s who claim Employment and Support Allowance.

The Allowance, which replaced Incapacity Benefit last year for new claimants, is currently being discussed as part of the new Welfare Reform Bill, and it looks likely to get harder to claim.

At the moment, medical assessments for the Allowance are not carried out by people with training or knowledge of Parkinson’s. Parkinson’s is a fluctuating condition so claimants may be having a 'good day'when they are assessed, and appear to be capable of returning to work. They may then have to go through a series of Work Focused Interviews. If someone with Parkinson's misses an interview because they are having a 'bad day' - when even getting out of bed is difficult - their payments could be reduced or stopped.

We have heard from people through emails and on our discussion forum who have been refused the Allowance because the medical assessments didn’t give them enough time to explain symptoms, or relied on an inflexible tick box system.

We think this is unfair. With help from parliamentarians like Fra McCann, who has recommended that training be provided for medical assessments, we can avoid these mistakes occuring.

If you'd like to share your experiences of claiming Employment and Support Allowance please fill in our short questionnaire. And why not sign up to our National Campaigns Network and join others who are campaigning for fairer services for people with Parkinson's?