Parkinson's and swallowing

Last Saturday the research team went to a scientific meeting held by the Parkinson’s Disease Non-Motor Group at The Royal Society of Medicine in London.

We spent the day with scientists and clinicians from the UK and Europe, who presented recent results on Parkinson’s to health professionals and researchers. One topic we found interesting was problems with swallowing, which can mean people’s medication isn’t absorbed properly.

Almost everyone with Parkinson’s will have trouble swallowing food or liquid at some point. Advice given to doctors on the day suggested that liquid levodopa may be more effective than pills or capsules.

What we don’t yet know is why swallowing becomes difficult with Parkinson’s, but we’re currently funding a study to find out. Swallowing can happen about 1,000 times a day so it’s vital we understand it.

If you have Parkinson’s, have you found swallowing difficult? Is it a symptom you expected? How do you find that it affects your every day life?

Let us know by leaving a comment, and if you’re in the Manchester area you might actually be able to be involved in the study. Email research@parkinsons.org.uk if you’re interested in taking part.

What can a pound do?

It's been great to have received some really enthusiastic feedback from supporters who received our £1 appeal in the mail last week.

The appeal carries the message, "£1 from you today could help us find a cure for Parkinson's" and asks supporters to insert a pound coin in a cardboard carrier in support of funding research.


The appeal is targeted at people who, for a variety of reasons, we've lost touch with over the last couple of years but who we want to tell about our vital work in support of everyone affected by Parkinson's in the UK.

Early feedback suggests that people like the simplicity of the appeal and the tactile call to action. They also like us getting in touch again.

One person even said "Parkinsons UK's 'Put £1 here' mailer is genius, really tactile. Couldn't wait to stick my coin in the slot!"

Staying in touch with all our supporters is vital if we are to succeed in our work. And finding new supporters is just as important.

If you or anyone you know would like to support our work, have a look at how you can get involved

You can also donate now to help us find a cure for Parkinson's.

Smoking - a surprising benefit?

Smoking, a notorious health hazard, seems to come with one surprising benefit – a lowered risk of Parkinson's.

But we don't know how or why smoking protects against Parkinson's. We're funding Professor Cragg at the University of Oxford who is exploring how nicotine affects the brain, and whether we could develop new drugs that mimic these protective effects.

The Michael J Fox Foundation also recently announced funding for a US$1.1million trial to test whether nicotine patches can slow the development of Parkinson's.

We’re often asked about how we keep up with international Parkinson’s research, and where the 90 research projects we fund fit in to the global picture.

Last year Kieran - our Director of Research - travelled around Europe and the US, speaking to leading researchers and colleagues from organisations including the Michael J Fox Foundation. The trip helped us develop our new five year research strategy and our biggest ever research project – the Monument Discovery Award.

You can keep up to date with all the latest Parkinson's research through this blog and our research news. But we’d like to hear from you too. Have you come across an interesting research story?

Post your comments and questions below or email us at: research@parkinsons.org.uk

Feedback from this week's online meeting

On Wednesday I met with a small group of people affected by Parkinson's - most of whom use our forum. We had a really good discussion, and came up with some positive ways forward. Here are some of the main themes from our conversation.

Raising awareness
People talked passionately about their experience of living with Parkinson’s and how difficult that could be. The big concern was the lack of public understanding of Parkinson’s as a complex, fluctuating condition that could affect people of all ages.

The group was really positive about the support the charity offers, through the branches, improved helpline service and our UK network of information and support workers

But too often people didn’t find out about this support until long after diagnosis. We talked about how we need professionals to consistently signpost people with Parkinson’s to the organisation and some of the ways we need to tackle this. We also talked about making our branches and support groups easier to contact.

Changing to Parkinson's UK
Our forthcoming name change to Parkinson's UK and our new look were seen as an important way to help us reach more people. There was a view that the charity needed one clear, simple message. Some people thought the range of messages used on placards to illustrate the new branding had been confusing. They had led some people to think that these slogans were the basis for a major publicity campaign, which is not the case. We discussed media plans for Parkinson’s Awareness Week This will focus on getting people’s real life stories across in features, rather than trying to develop a news angle that would be in direct competition to the general election.

The right message for different audiences
We reflected on the tension between giving positive and inspiring messages for people living with the condition yet needing to show just how challenging Parkinson’s can be in order to drive forward our fundraising and campaigning.

We also talked about the power of having people’s experiences right at the heart of the charity, using photographs and messages from real people and making sure they are supported to speak out, in the media and on public platforms. The group felt our communication of who we are and what we stand for should focus on those who are new to the charity, rather than people we’re already in touch with.

The online forum
People said they found our discussion forum extremely valuable, including those who are members of other online communities. There’s scope to make the format of the forum more varied and interactive whilst keeping it simple to use. Users commented that the atmosphere on the forum can sometimes be intimidating and make them reluctant to express their views and get involved.

Engaging with people affected by Parkinson's
We underlined the importance of listening to people with Parkinson’s. We discussed how this happens on a daily basis and is embedded in all areas of the charity’s activity through advisory panels, focus groups and user evaluation. Hundreds of people affected had been involved in the work developing our new name and identity and over a thousand had sent in their placard suggestions. The group talked about how people on the forum could be more involved by holding this type of discussion regularly.

Overall people found the meeting enjoyable and worthwhile, though there were technical difficulties that made it hard for some to participate. We agreed to explore simpler technology for the next meeting and we’re now looking for suggestions about the themes people want to discuss.

What would you like to talk about?

Placard messages - your responses

In a recent blog I mentioned placard messages that I asked our members to post back to me. So far we've had 937 responses, and below is a cross section of the messages we've had back.

Also don't forget about our online/phone meeting for people to hear more detail and ask questions about our plans. It's tomorrow, 6pm–7.30pm and you need to register to login.

Enjoy the pictures!

Our 'stack' of responses

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