Talk Parkinson's

Researcher Dr Anton Gartner shares his experiences of Parkinson's

noreply@blogger.com (Parkinson's UK) — Thu, 11 Apr 2013 12:54:00 +0000

Dr Anton Gartner

Dr Anton Gartner is a Parkinson's UK funded researcher at the University of Dundee.

Anton's research project using C.Elegans worms (PDF, 262KB) inspired us to create Dave the Worm - the newest member of the Parkinson's UK Fundraising team.

Anton recently told us a bit more about his groundbreaking research using worms to study Parkinson's.

We asked Anton to tell us about his personal connections to his research:

I don't have close relatives or friends affected by Parkinson's but my own mother is affected by another neurodegenerative condition called Multiple Sclerosis.

After 30 years with this, she is still doing fine and lives an independent life but has difficulty with walking. She can walk up to 100 meters or so but then she gets tired.

I experienced her anxiety in those early days when the first symptoms started to appear. Now I really admire her for moving on, always looking forward and making the very best of her life. She is fond of Dave the Worm and is now one of his international supporters.

Experiences of Parkinson's

I first met people with Parkinson's when I was working as a nurse on a hospital ward in Vienna just after obtaining my PhD.

At the time in Austria everyone had to complete a year of 'social service' - so it was this or join the army.

To begin with I was quite upset about having to leave the lab and not using the skills it hadn't taken so long to learn. But I soon started to enjoy the job and I gained much more than I would have done by staying in the lab for another year.

I learned how to deal with people, how to encourage them and how to help where help can be provided.

Although it was challenging having to deal with people affected by various and often very serious illnesses, I learned from them to stay optimistic and to enjoy life as much as one can.

And I remember many conversations, so much more thoughtful than often done in a lab.

I remember the day I met my first patient with Parkinson's very clearly.

We were trained to encourage our patients to be as independent as possible; so I encouraged him, as he seemed mobile and independent, to shave himself – something he hadn't done for a while.

Sure enough without saying a word he shaved himself, but unfortunately with several cuts. I felt terrible, but he was great, we became friends and it became my job to help him shave.

We enjoyed our time. Life is not always about big stories.

This Parkinson's Awareness Week (15-21 April) we're asking everyone to put themselves in people with Parkinson's shoes, and like Anton get a better understanding of how the condition affects day to day life.

And during the week Dave the Worm will be getting out and about to visit more Parkinson's researchers and find out more about their lives in the lab, so keep an eye on Dave's Facebook and Twitter pages for updates.

What can worms teach us about Parkinson's?

noreply@blogger.com (Parkinson's UK) — Mon, 08 Apr 2013 09:47:00 +0000

Dr Anton Gartner

Dr Anton Gartner is a Parkinson's UK funded researcher at the University of Dundee.

Anton's research project using C.Elegans worms (PDF, 262KB) inspired us to create Dave the Worm - the newest member of the Parkinson's UK fundraising team.

We recently asked Anton to tell us a bit more about his life in the lab:

When did you first start working with worms?

I started working with worms in 1997 when I was a postdoctoral researcher in Cold Spring Harbor - a famous lab close to New York. At the time I was using my worms to learn more about how and why cells die.

As I write, thousands of the cells that make up my body are dying. But luckily we're all made of billions of cells so most of the time cell death isn't a problem. In fact, too little cell death can lead to cancerous tumours forming – so the right cells dying at the right time is actually vital to staying healthy.

Of the thousand cells that make up a worm like Dave, 131 die. And I was one of the first to study how and why cells die in my worms.

Have you met Dave the Worm?

We now know that our worm cells behave in a very similar way to human cells when it comes to cell death and that many of the same genes are involved.

How did you become interested in Parkinson's?

My interest in Parkinson's actually started on the staircase at my University. I bumped into my colleague Dario who mentioned that he'd started working on 2 of the genes related to rare inherited forms of Parkinson's.

A gene is a short segment of DNA that provides the instructions for making a protein, and proteins are the building blocks our cells are made of and the machines that do the cells work.

For scientists the challenge is to work out how these machines work and what they do inside our cells. And that's where our worms come in.

The first experiment we tried in our worms was removing the 2 important Parkinson's genes (PINK1 and LRRK2) completely. But to our surprise, without the genes our worms wiggled normally, grew happily and developed no Parkinson's-like problems. Quite a disappointment at the time!

By this time I was becoming fascinated with Parkinson's so when I saw that Parkinson's UK were offering research grants to help scientists like me investigate this new and exciting avenue of research I decided to apply for funding to study the condition in my worms.

Luckily for me, worms like Dave have the same type of nerve cells that are lost in the brains of people with Parkinson's. But instead of having millions, the worms only have 8 of these vital cells which we can study in action inside the living animals.

Working with our worms has already helped us understand more about what happens when these dopamine-producing cells start to die and I'm really hopeful that our work will lead to treatments that slow or stop the progression of Parkinson's.

We'll have more to share with you on the blog from Anton this week - so look out for the next installment.

People with Parkinson's can have their say in Parliament

noreply@blogger.com (Parkinson's UK) — Thu, 21 Feb 2013 17:26:00 +0000

The workings of Parliament remain a mystery to most, but the launch of a new inquiry means some people with Parkinson's will soon have the chance to influence politicians face-to-face.

Our Parliamentary Advisor, Caroline Weston, has been working hard to help set up the inquiry which will investigate whether NHS Continuing Care – which provides funded care for those with severe health needs – is working for people with Parkinson's.

It's my job to try and make sure our politicians are considering the needs of people with Parkinson's – a challenging task to say the least. But we're lucky enough to be able to work with a group of politicians who meet specifically to talk about Parkinson's and the issues around it.

All Party Parliamentary Groups

Baroness Gale

All Party Parliamentary Groups, or APPGs, are informal groups of MPs and peers who meet up to discuss and champion lots of different issues ranging from Parkinson's to Albania to zoos.

The APPG on Parkinson's is run by the politicians, but we provide them with information and opportunities to raise awareness of Parkinson's.

Chaired by Baroness Gale (pictured right), whose father had Parkinson's, the group has more than 40 members and many have their own personal connection to the condition.

When we met with the group last year, we told them about how getting access to this care is a real issue for people with Parkinson's – in fact it's the third most common reason that people call our helpline.

Inquiry for people with Parkinson's

The APPG agreed that this situation is not acceptable, so they decided to hold an inquiry on the issue for people with Parkinson's, and how to make the current system for providing NHS Continuing Care work better for them.

When the inquiry launches next month, we'll be asking people with Parkinson's to tell us about their experiences of NHS Continuing Care and how they think it could be improved. Some people will even have the chance to go to Parliament and talk to the politicians directly.

Keep an eye on our website in early March when we'll tell you how you can get involved.

MP talks benefits with our Bolton Branch

noreply@blogger.com (Parkinson's UK) — Fri, 15 Feb 2013 14:31:00 +0000

When Allan Martin heard about the impending changes to the Disability Living Allowance (DLA) benefit to Personal Independence Payment (PIP), like many people with Parkinson's, he was faced with serious concerns about his future.

Allan Martin from our Bolton Branch, with Julie Hilling MP (middle)

So when he received an email from the Parkinson's UK Campaigns Network calling on people with Parkinson's to email their MPs about the welfare reforms, Allan jumped at the chance.

I'd heard that the Government - in all its wisdom - planned to make even more cuts to our benefits and I was really worried.

People with Parkinson's have a condition that will never improve - I just couldn't see any point in sending us for another awful round of interviews to see if we're entitled to benefits, when our Parkinson's can only get worse.

Under the new PIP test, if you can walk more than 20 metres you could well lose your money. But the way I see it is if you can walk 20 metres, you've got to walk 20 metres back - something a lot of us with Parkinson's would find very difficult on a bad day.

Meeting my MP

So when I got an email from Parkinson's UK asking us to write to our MPs I decided I had nothing to lose. I wanted to find out from the horse's mouth exactly what was going on, so I emailed my Labour MP, Julie Hilling. I was quite surprised when Julie's secretary got in touch and wanted to arrange a meeting.

I told the committee of the Bolton Branch, and they hired a room for us at the Bolton Arena so other people could come and ask questions too. On the day, there was a really good turnout of about 25 people and the Bolton Evening News even came along to take photos. Julie did a Q&A session with us, talking in-depth about the changes and finding out what it would mean to us if we lost our benefits.

The whole thing seemed to have a real impact on her. People have the wrong idea about Parkinson's - they think it's just a tremor but it's so much more than that. That day she met some people who were really poorly with Parkinson's and heard about how it affects them. This prompted her to make a promise that she would follow up on our concerns directly with the relevant Minister.

After talking to Julie I felt more secure because she listened to our concerns and explained things as clearly as she could. I really believe we have to take every chance to speak up abut what is wrong with the system or we'll end up letting the politicians walk all over us. I feel so indebted to the people out there helping us like Julie and the people involved with Parkinson's UK.

For more information on the benefit changes see parkinsons.org.uk/pip. If you have any concerns or questions, please call the Parkinson's UK helpline 0808 800 0303.

Getting the full picture on Parkinson's

noreply@blogger.com (Parkinson's UK) — Thu, 13 Dec 2012 16:27:00 +0000

On Monday we launched our first ever public awareness campaign, designed to change the way people think about Parkinson's.

Here our marketing manager, Lily Dwek, explains the full story behind the campaign:

Full page article and adverts in The Metro

Since joining the charity one of the things that most struck me was just how little the general public knew about Parkinson's - something that I desperately wanted to start to change.

So, how do you get the public to change their views on Parkinson's? The answer, like the condition itself, is far from simple. To change someone's view, you need to create something that will encourage people to stop and take notice - and for that you need a good idea.

Like many good ideas, it was a chance conversation with an old friend that led to the opportunity to really put our plans for change into action. This old friend happened to work for a creative agency that was looking to help a worthy cause - and so our first public awareness campaign was born.

The campaign uses cleverly reworked images of 6 everyday activities that we all take for granted that can be incredibly difficult for those affected by Parkinson's. The images of each activity have been mixed up to create a disjointed visual puzzle that brings to life the difficulties of living with Parkinson's.

Creating a clever campaign is one thing, but if it isn't noticed then all of your work can be for nothing.

Overwhelmed by the response

Spotted on South West trains!

Although it is only a few days since we launched the campaign, I have been overwhelmed by the response. As well as seeing our adverts in the papers, the real highlight has been seeing so many people sharing their stories as a result.

Our Twitter and Facebook pages have been buzzing with hundreds of people talking about the ads and the campaign (on Twitter we're using the hashtag #myeveryday if you want to join in).

These are not only people talking about their experience of life with Parkinson's, but also those with no connection to the condition feeling compelled to comment on our work.

Although we may not be able to change the world with an advert, this campaign is certainly the first step in our mission to make life easier for people with Parkinson's.

If you spot the ads, I would love to hear what you think of them.

Parkinson's research - what to look out for in 2013

noreply@blogger.com (Parkinson's UK) — Fri, 07 Dec 2012 09:42:00 +0000

We often get asked how close we are to a cure for Parkinson's and what research is being carried out to achieve this. Dr Kieran Breen, our director of research and innovation, gives us his opinions on what he thinks are the key areas in Parkinson's research to watch out for in the future:

Dr Kieran Breen

All of the currently available Parkinson's drugs treat the symptoms rather than the condition itself. What we urgently need to develop are therapies that will slow down, halt or reverse the death of the nerve cells that happens in Parkinson's. This would, effectively, be a cure for the condition.

Research towards a cure is the primary aim of the current Parkinson's UK research strategy. Understanding how and why nerve cells die will give us vital information about how we can actually focus on treating the Parkinson's rather than the symptoms.

In addition to the research funded by Parkinson's UK, we keep very much up-to-date with other research that is carried out outside of the UK. We also speak with other funders - I had a very productive meeting last week with my counterpart at the Michael J Fox Foundation - as well as with researchers around the world.

It's vital that we all work together to achieve our goal - a cure for Parkinson's. But there is so much going on at the moment that I can only highlight a few areas that I think show particular promise.

Understanding how Parkinson's develops

We have supported a lot of research to try to understand how Parkinson's develops. By really understanding what happens within a nerve cell to cause it to die, we can identify therapies that can treat the condition itself rather than the symptoms. For example, one of the key events in Parkinson's is the development of Lewy bodies in the brain. These are specific changes that occur when a cell starts to die. Lewy bodies are then thought to spread throughout the brain as the Parkinson's progresses. So, if we could target this, we may be able to slow down the progression of nerve cell death.

Another target is a protein called synuclein which clumps together to form Lewy bodies. So this is another avenue that is being addressed to identify chemicals that may prevent Lewy bodies being formed (PDF file).

Drugs prescribed for other conditions

The development of new drugs is extremely expensive and takes a long time. But it may be possible to use drugs that are prescribed for other conditions to treat Parkinson's. Based on results from a Parkinson's UK-funded study, a small clinical trial has been carried out to look at whether the anti-diabetic drug Exenatide may help to slow down the progression of Parkinson's.

Also, a study in the US has suggested that isradipine, which is used to treat high blood pressure, may also slow down the progression of Parkinson's. But we urgently need to do more research to identify other drugs. This is very much on the Parkinson's UK agenda.

Gene therapy and stem cell therapy

There are also other approaches that we can take to develop a cure. For example, gene therapy aims to enable nerve cells to be more efficient in how they work. Some current studies are examining genes that may actually stimulate nerve cells to regrow.

And of course, in the longer term we have the potential of stem cell therapy where we can replace the cells that have died in Parkinson's with new nerve cells. This may still be a long way off, but it's amazing how much progress has been made in this area over the last couple of years.

In fact, the winners of the Nobel prize for medicine this year identified new ways in which we can generate stem cells and this could have a significant impact on the future treatment of Parkinson's.

So, what about 2013?

Well, while there are a lot of promising areas in the pipeline, realistically there is unlikely to be a cure for Parkinson's within the next 12 months, and it's not possible to give an exact timescale of when a cure will come. However, we are committed to building upon our understanding of the basic science of the condition to develop new therapies. Essentially, we will translate the research from lab to life.

This requires investment in some high risk research studies but if they pay off, there could be a very high reward. We can't afford to be 'safe' in our research funding. It is only by being brave that we can make rapid strides forward.

The advances that are being made give me a real sense of hope that, day by day, we are getting closer than ever to a cure for Parkinson's.

Lady Astor of Hever: My mother and Parkinson's

noreply@blogger.com (Parkinson's UK) — Tue, 13 Nov 2012 10:04:00 +0000

In Liz Astor's debut novel, 'Since You Went Away' the character Margaret is largely based on her mother's experience with Parkinson's. Liz is donating 10p per sale to Parkinson's UK. Here she tells us why:

Lady Astor of Hever

My mother was diagnosed with Parkinson's by her breast cancer specialist. She had visited him to have a lump under her breast confirmed as malignant and he looked at her face and said:

"I can see that you have Parkinson's too."

She was in her early 80s and it took her 6 months to recover from the shock of the double diagnosis and come to terms with them.

My brother, sister and I did what we could in our own ways, but we could not have managed without the selfless devotion of our wonderful step-father.

My sister who had been a nurse spent every other weekend caring for my mother, my brother took care of their finances and as I lived the closest to them, I popped in often with my children and was 'operation cheer up'.

My mother was a beautiful, bright and vivacious woman who had always taken great pride in her appearance. When she could no longer go out, we arranged for a local hairdresser to visit her and a beautician to manicure her nails.

As her Parkinson's progressed and she was unable to cook for my step-father, she and my sister would have cooking sessions in her kitchen and make casseroles for the freezer. This made her feel that she was still of use to her adoring husband and not only a burden.

As each new challenge presented itself, we created new ways around them. When she found holding a glass too difficult, we provided her with a straw. We served her tea in a cup only half full and not too hot, and when holding a book became too heavy, we placed a cushion on her lap, and later, she held the pages open with 2 pegs.

But she suffered from depression and dreaded becoming an incontinent wreck and often mentioned suicide. To help and cheer her, and to give my step-father some relief, we employed a carer in the mornings. As the months wore on, the carer stayed longer, until eventually we employed 2 carers to cover the whole day.

But still there were several accidents and trips to the local A&E which caused them both enormous stress. Towards the end, when she found dressing exhausting, she gave up and spent her days in pretty housecoats and slippers, helped with incontinence pants, while she could still use them.

She died on 17 November 2008 at home in her own bed, cared for in her last week by wonderful Marie Curie nurses. Her husband, my sister, brother and I were with her and as she had longed to die for some time, it was as if we were wishing her well on her way to the stars. And to die in our own bed surrounded by our loved ones is what we all wish for.

My family and I miss her terribly. She was a wonderful wife, mother and grandmother and we all very close. Sad though this is to tell, it is nothing compared to my dear friend who, coincidently, has also been diagnosed with breast cancer and Parkinson's, but in her early 60s. But she is as positive and vibrant as she has always been and determined to enjoy every day as long as she is able.

It is a great lesson to us all, but I would rather she had not developed Parkinson's. That is why I am so pleased to be able to support Parkinson's UK, in the hope that one day a cure will be found and in the meantime, those who have Parkinson's can be helped and encouraged by this wonderful charity.

'Since You Went Away' by Liz Astor can be purchased from any online retailer.

Highlights from our 2-day Parkinson's scientific conference

noreply@blogger.com (Parkinson's UK) — Thu, 08 Nov 2012 17:17:00 +0000

After a busy 2 days on Monday and Tuesday this week, we're reflecting on another brilliant Parkinson's UK research conference. The jam-packed programme - including 27 talks and 110 posters - was a fantastic opportunity for more than 200 Parkinson's researchers from around the UK to hear about the latest developments across a wide range of fields.

Our international keynote speakers, Dr Matthew Farrer from Canada and Professor Darren Moore from Switzerland set the tone for the conference with great talks about the latest breakthroughs and challenges in genetics research.

And we heard a host of fantastic short presentations from UK-based research teams, including Parkinson's UK-funded researchers unveiling important new clues about the role of the Parkinson's gene DJ-1 on day 1.

Throughout the conference we were joined by 3 passionate volunteers from our Research Support Network who each made vital contributions:

Social media enthusiast Viktor spent the conference tweeting and recording short videos with researchers to share on his YouTube channel
Photographer Martin helped us by taking lots of photos of our speakers and researchers
And ex-malaria scientist Geoff Butcher gave an inspiring speech about what research means to him as a person with Parkinson's - watch Geoff's short speech below.

A selection of #parkinsons2012 tweets

The 2-day conference for scientists followed our day for our members and supporters, which was also a great success.

We encouraged researchers to share their thoughts on Twitter throughout the conference and they got a great conversation going using the hashtag #parkinsons2012

The conference ended on a high note, as our chief executive Steve Ford announced the 3 joint winners of the £2,000 poster prize, which was generously funded by our York Branch.

Bringing the best and brightest researchers together in one place to share ideas and develop collaborations is just one of the ways we're pushing our search for a Parkinson's cure to a new level.

We're already looking forward to the next conference in 2014!

If you were at the supporters' day or the scientific conference let us know your thoughts below.

Supporters' day kicks off Parkinson's research conference

noreply@blogger.com (Parkinson's UK) — Sun, 04 Nov 2012 18:07:00 +0000

Well, it's been an amazing day in York at the Parkinson's UK Research Conference.

Members and supporters at the conference

More than 100 members and Parkinson's UK supporters joined us to hear 10 fantastic talks from researchers who discussed everything from genetics to the power of dance.

The day kicked off to an inspiring start when Research Support Network member Alan Cameron shared his own personal journey with Parkinson's and his reasons for becoming active and interested in research.

In session 1 our speakers explained the nuts and bolts of the genetics of Parkinson's and how understanding the genes involved is paving the way towards new and more targeted treatments for the condition.

After lunch we moved on to improving care and treatment for people with Parkinson's, including:

promising results from trials testing the sleep drug Zolpidem in people with Parkinson's
how research is moving us closer to simple blood tests that can diagnose and monitor Parkinson's
how we can help people with Parkinson's stay active and avoid falls

The talks concluded with a great interactive presentation from Dr Peter Lovatt (aka Dr Dance) who got the audience grooving as he explained the potential benefits of dance for people with Parkinson's.

Check out the full programme of talks (PDF)

And you can follow the conversation about our day in York on Twitter.

There'll be plenty more from us tomorrow when the scientific conference begins so keep following the conference on Twitter (hashtag #parkinsons2012). And we'll be adding photos from the conference on Flickr.

Testing times for people with Parkinson's

noreply@blogger.com (Parkinson's UK) — Fri, 02 Nov 2012 16:04:00 +0000

The controversial Work Capability Assessment, also known as the "fitness to work" test, has been causing great difficulties for people with Parkinson's. After campaigning relentlessly on the issue, we were recently given the opportunity by government to suggest changes to the test.

Our Policy and Campaigns Advisor, Donna O'Brien, who focuses on welfare and social care, has been helping to tackle the flaws in the assessment:

"For people with Parkinson's of working age, the Employment and Support Allowance (ESA) benefit is a financial lifeline. Eligibility is usually decided through a Work Capability Assessment.

"Ever since ESA was introduced in 2008 we've heard of people with Parkinson's who have been declared 'fit to work' despite the very serious problems they are experiencing with the condition. In large part, this is because of the flawed design of the Work Capability Assessment.

"The assessment is very crude and doesn't measure the ability to endure a working day, let alone a week, or reflect the fatigue, pain and unpredictability of Parkinson's.

"In 2010 an independent review recognised that those with fluctuating conditions, like Parkinson's or MS, and mental health or cognitive issues, were particularly likely to fall foul of the process. So we worked with other fluctuating condition charities to report on what needed to change:

Read the fluctuating conditions report (PDF, 610KB)

"In answer to this criticism, the government has said it will continuously review and improve the current tests. While we believe this is not radical enough, this move does allow us to help push for improvements for people with Parkinson's.

"We've been working with other charities, talking to people with Parkinson's who have been through the tests, and consulting occupational therapists, to come up with improvements to the current assessment."

The future

The Government is now looking at how suggestions made by the charities can be tested alongside the current Work Capability Assessment, to see if it helps produce more accurate conclusions about "fitness to work". This process will take at least 6 months to complete, and then the government will consider what may be adopted based on evidence from the review.

Read more about this work and have a look at the tentative set of tests the charities, including ourselves, have put forward (PDF, 427KB)

Please leave your comments and experiences to ensure the voices of people with Parkinson's continue to be heard.

If you have any questions about the Work Capability Assessment please contact Donna O'Brien on dobrien@parkinsons.org.uk or call 020 7963 9307.

Alex Flynn - the man behind the 10 million metres

noreply@blogger.com (Parkinson's UK) — Fri, 26 Oct 2012 16:12:00 +0000

When Alex Flynn was diagnosed with Parkinson's, it set him on an unexpected and inspiring journey - to run, cycle and climb 10 million metres by 2014 to raise vital funds towards a Parkinson's cure.

After Alex appeared on The One Show earlier this month many of you offered your support, asked about his story, and discussed the impact of his challenge on the public perception of Parkinson's.

So Alex has written a guest blog for us, to talk about how he sees himself raising awareness of the condition:

Alex in training

"I'm no different from any other person with Parkinson's, and undertaking challenges is not what I expect or (as far as I am aware) what third parties expect other people with the condition to be able to do.

"Parkinson's and its symptoms are individual to every person with the condition - your own personal designer disease. I was diagnosed 4 years ago and, currently, incredibly lucky enough to be able to continue the exercise regime I did before my diagnosis.

"I believe this exercise programme helps slow progress of Parkinson's on my body - although this is from my own personal experience and I'm not saying it as a recommendation or advice to anyone else.

"What is clear to me is that the effects of Parkinson's - such as tremor, dystonia, fatigue, and rigidity - are progressing nonetheless. As time goes by the less and less I will be able to achieve and do.

"So the challenges I put myself through are the most succinct way I can think of to raise awareness of Parkinson's, to show people the effects of the condition, and the need for a cure.

"Don't get me wrong - I am positive about the future and hopeful about the research undertaken over the last couple of years. It has driven and continues to unlock new avenues of discovery, which inextricably will lead to better lives for us all.

"So if my challenge raises funds to further this research and keeps me moving, then that's good enough for me."

Visit Alex's website to find out more about his challenge.

On the Hunt for answers at the Conservative party conference

noreply@blogger.com (Parkinson's UK) — Fri, 12 Oct 2012 11:12:00 +0000

Long-time supporter, Tina Walker, spent this week speaking her mind as she accompanied the Parkinson’s UK team to the Conservative Party Conference.

"As someone who lives with Parkinson's, I may not be able to work but what I can do is make sure my voice is heard.

"One of the first people I spoke to was Jeremy Hunt, the new Health Secretary – I put him on the spot by asking him about the Long Term Condition health guidelines and told him they should be mandatory.

"I also spoke about the new Personal Independence Payment, the effect it has on people with Parkinson's and that I am afraid further cuts will mean I'll lose my car and my independence. He told me that he would take what I said away with him, but I was still determined to speak to him again.

Iain Duncan Smith and Tina Walker

"So when the Parkinson's UK team had a meeting with Mr Hunt 2 days later I was ready for an argument – but managed to restrain myself. I told him that the Government should consult the people who use the services when they design assessment tests. Disabled people should be involved at the conception of an idea rather than the birth.

"I was there when David Cameron came over to our stand – when he found out our buzzer game was the same one Nick Clegg played at the Lib Dem conference, he had to have a go. To top it all off I met Brian May and I was star-struck! He was lovely.

"I was very tired now but it was well worth it - I'd go to all 3 conferences if I could. There are 360 MPs in this country and if 360 people with Parkinson’s started talking to them we'd make our voices heard – that’s what we’ve got to aim for."

We attended all of the 2012 party conferences and you can find out more about what we did and what you can do to get involved at www.parkinsons.org.uk/partyconferences

Meeting MPs, policy praise and Ed Balls buzzing at the Labour Party conference

noreply@blogger.com (Parkinson's UK) — Fri, 05 Oct 2012 15:29:00 +0000

This week Trustee Alun Morgan joined our Policy team at the Labour Party conference, to tell people about the nitty-gritty of living with Parkinson's.

"Being a Trustee I am used to getting involved in all manner of meetings to try and spread the word about Parkinson's.

Alun watches Ed Balls try our buzzwire game

"This week, I had a very worthwhile week of getting to know people, talking to MPs about what it's like to have Parkinson's, and even meeting Ed Miliband.

"The conference was a great chance to speak to MPs in person and we gave briefings to Stephen Timms, Huw Irranca-Davies and Anne Maguire, which were very effective. My role was to get down to the nitty-gritty and speak about what it's like to live with Parkinson's day-in-day-out.

"We also talked about the current work capability assessments, how badly these have affected people with Parkinson's, and how they are completely unsuited to our needs. They seemed genuinely interested and even told us they would do some lobbying work in Parliament over the new Personal Independence Payment which lot of people are worried about.

"One highlight of the conference was when Baroness Thornton told us that Parkinson's UK gives really good policy briefings which is why we get so many mentions in Parliament - great praise for the team!

"Another memorable moment was when I saw a big crowd, realised something important was going and shot over there to introduce myself to Ed Miliband. It was a brief encounter, but I got the chance to tell him I was a trustee for Parkinson's UK and he expressed his sympathy that I was living with the condition.

"Our buzzer machine was one of the main attractions at the conference and a great photo opportunity for lots of MPs including Ed Balls, who I sort of harassed into coming over. Every time I saw him I said 'are you coming then?' - until eventually he did!"

Our information stand will also be at the Conservative party conference next week (7-11 October).

To see our pictures and tweets from all of the party conferences, follow us on Twitter at www.twitter.com/parkinsonsuk

Speaking up for change at the Liberal Democrat Conference

noreply@blogger.com (Parkinson's UK) — Fri, 28 Sep 2012 14:51:00 +0000

Earlier this week our staff were joined by people with Parkinson's at the Liberal Democrat Party Conference to speak up about the realities of living with the condition.

Apple watches Tom Brake MP try our buzzwire game

Among those offering their support was Apple Holden who believes that if people with Parkinson's say their piece, we can create a real change. Apple tells us how she found the conference:

"I've lived with Parkinson's for 7 years. When I was diagnosed I was already caring for my seriously ill husband and, since his death 2 years ago, I’ve been coping with bereavement and living with Parkinson's on my own.

"Volunteering with Parkinson's UK in the last year has been great and I was really pleased to go to the conference - even though I had never done anything like this before and was out of my comfort zone!

"It was such a brilliant opportunity, and a wonderfully supportive team from Parkinson's UK. I got to talk to people who are in a position to influence change, including parliament members, and told them what it's like to live with Parkinson's, how it progresses and how we adjust our lives around it.

"It was heart-warming to see that people were genuinely interested, asking poignant questions and expressing concern to enable us to change things for the better. After I had spoken to Tom Brake MP, he even wrote about it on Twitter. I was so excited that I pumped my fist in the air and shouted 'yes'!

"Other conference delegates came to me directly to ask me how I cope with Parkinson's as they have friends or relatives with the condition. I think we helped to educate lots of people on Parkinson's and the way it changes from day to day.

"Even though I was exhausted, I'd definitely do it again. I felt jubilant and hopeful that we made a difference. It's very powerful if we speak up about what's wrong with the system, what people with Parkinson's need, and what great work Parkinson's UK is doing. I say get the word out there - and just tell it as it is!"

Our information stand will also be at the Conservative and Labour party conferences in the coming weeks (with the Labour party conference starting this Sunday) so there'll be more opportunities for our staff and people with Parkinson's to talk to MPs and delegates about living with the condition. Nick Clegg's already tried his hand at our buzzwire game - will David Cameron and Ed Miliband have a go?

To see our pictures and tweets from all of the party conferences, follow us on Twitter at www.twitter.com/parkinsonsuk

Fulfilling an Olympic dream, despite Parkinson's

noreply@blogger.com (Parkinson's UK) — Thu, 16 Aug 2012 12:54:00 +0000

Matt Eagles, 43, has had Parkinson's for many years and is a keen sports photographer. During the Olympics most of us watched from our sofas or the stands, but Matt was amongst the action. This is his story…

“17 days, 10 football matches, taekwondo, badminton, basketball and beach volleyball. 3 times at Wembley Stadium, 3 times at Old Trafford, and once at Cardiff.

“Over 1,500 rail miles and thousands of pictures later, my journey as official Olympics photographer is now complete.

“I am still absolutely buzzing. I cannot believe ‘I was there!’

Uruguay score against UAE - Photo by Matt Eagles

"I lived on adrenalin the whole time. But I was concerned my Parkinson’s would spoil my big chance.

"I had visions of falling over in front of a global audience of billions as the gold medal was presented at Wembley - it never happened. I had recently started on new medication and thankfully it worked like a dream.

“On the whole my mobility was great. I walked miles with heavy camera equipment, sweated buckets, I always ended the day exhausted but smiling.

“The venue photo managers and stadium staff were incredibly helpful. They organised lockers to store equipment and giving me bottles of water and power bars when nothing was available elsewhere.

“When I wasn’t so good the volunteers spotted my discomfort before I cared to admit it myself. An army officer spotted I was wobbly outside Wembley Arena and a wheelchair arrived (for which I was secretly extremely grateful). Then I was taken to the media transport where I headed to the Olympic Park.

“At beach volleyball I had really bad cramps and could barely stand having walked nearly 2 miles in the wrong direction trying to get to Horse Guards Parade. I was fast tracked into the venue again in a chair and taken to a disabled viewing spot far better than my original ticket.

“My big passion is football. I was completely focused on the action at Cardiff and Wembley. Although kneeling on concrete with bare knees for an hour and a half took its toll.

“I made sure my Parkinson’s didn’t spoil my moment to shine. I proved to myself and any doubters that if you are determined enough there are no barriers to achieving your goals.”

You can see a selection of Matt’s best photos from the Olympic Games on the Photo Gallery of the ESPN website. There are more of Matt's fantastic photos on his Flickr page.

What were your experiences of the Olympics? Did you attend an event?

Parkinson's in the media this week

noreply@blogger.com (Parkinson's UK) — Fri, 10 Aug 2012 12:33:00 +0000

British acting legend, Bob Hoskins’ announcement that he was retiring from acting after being diagnosed with Parkinson’s caused a flurry of enquiries from the media to our charity on Wednesday night. Laura Carpenter, our Media and Communications Officer, talks about the busy week in the media for Parkinson’s.

Working in a press office you often expect for unexpected things to happen. The news agenda sets your working hours. When the phone rings at 5.30pm with an urgent enquiry you have to respond immediately because the media can’t and simply won’t wait.

Raising awareness and bringing attention to Parkinson’s as a condition to promote understanding for those affected is an ongoing challenge.

Someone well-known like Bob being diagnosed with Parkinson’s will of course be devastating for Bob and his family. But it also enables the condition to be brought into the light and to be talked about and explained.

Since the surprise announcement, our staff and people with Parkinson’s have been out and about in the media talking about the condition and what it means when someone is diagnosed.

Every national newspaper carried some information about Parkinson’s including the Daily Mail and Daily Express. As well as this fantastic coverage, our Chief Executive, Steve Ford, spoke to ITV’s Daybreak to give further information about the condition.

Daiga Heisters, our Head of Professional Engagement and Education, and Tim who runs our helpline have been interviewed by lots of local radio stations.

These have included BBC Radio London, LBC, BBC Radio Suffolk and BBC Radio Merseyside – and the requests keep coming in.

Jane Hill at our 2011 Christmas concert

Jane Hill, whose Dad had Parkinson’s, and who is a BBC newsreader and one of our most active celebrity supporters, has also written about understanding of the condition on the Guardian website.

Our Director of Research Kieran Breen has also spoken to the Mail on Sunday the future of research into Parkinson’s, so look out for that one due out on Sunday too.

We hope this will mean more people will get the information and support they need from our charity. We’re already seeing this happening.

Since the announcement, our website has been inundated with visits to the site – 7,622 on Wednesday and 6,727 on Thursday. The second and third highest number of visits to the website ever in a single day - only behind to the launch of Parkinson’s Awareness Week earlier this year.

Bob’s announcement has been an important catalyst to get people to finally start talking about Parkinson’s.

Once the media polish fades, we hope that the lasting legacy of his experience will be one of helping to create better understanding and awareness of the condition – something we so desperately need.

Be inspired by Joseph and Wiggo and join us on a cycle ride

noreply@blogger.com (Parkinson's UK) — Thu, 02 Aug 2012 13:00:00 +0000

We’re always pleased to hear about the amazing challenges and lengths our fundraisers will go to raise funds for us.

This week we heard from Joseph Giret QC, who has been lucky enough to be chosen as only 1 of 7 amateur cyclists from across the world, to take part in a prestigious 780km cycling event called Haute Route.

Joseph will start his challenge in Geneva, Switzerland and will finish in Nice, France from 19-25 August 2012.

The event will see over 500 cyclists compete across a 21,000m total ascent, covering 19 mountains and some stunning views.

Since Bradley Wiggins’historic first place finish in the Tour de France last weekend and his superb Olympic gold medal yesterday, both young and old have been dusting down their bikes and getting back in the saddle, to enjoy one of the UK’s most popular pastimes.

Are you feeling inspired? You don’t have to take on a mammoth cycling challenge to raise funds for us.

We’re holding a series of one-day cycle rides across the UK called Pedal for Parkinson’s. There are distances to suit all abilities and levels, so budding Bradley Wiggins’s are more than welcome to take part!

Pedal for Parkinson’s makes for a great family day out, so why not get into the Olympic spirit and join us in Stirling on 5 August and Newcastle on 9 September. We’ll give you a cycling top to make you officially part of Team Parkinson’s and a finisher’s medal.

If you’re feeling adventurous and would prefer a bigger challenge, we’ll be cycling from Londonto Paris from 4-8 September 2013. We’ll also be cycling to Rajasthan in India in November 2013, in a ride which ends at the iconic Taj Mahal.

If you’d like more information on any of our cycle rides, call our Events team on 020 7963 9305 or events@parkinsons.org.uk.

Share your cycling stories and experiences with us by adding your comments below.

Educating professionals about Parkinson’s

noreply@blogger.com (Parkinson's UK) — Mon, 23 Jul 2012 07:36:00 +0000

A recent report from the Care Quality Commission (CQC) has shown more than a quarter of NHS and social services in England are failing to meet essential standards. John Bains, our Education Delivery Manager, talks about the impact of this report and what Parkinson's UK is doing to help.

The report by the CQC – established in 2009 to inspect and regulate health and social care services – is fairly damning. After inspecting 14,000 sites, including hospitals and care homes, they found many of them had problems with staff shortages and poor medicines management. At its worst, one nursing home was banned from admitting new residents because of concerns over how drugs were handed out.

Poor medicines management is something that people with Parkinson's experience far more often than they should and we have a whole campaign dedicated to it: Get It On Time.

Get It On Time forms a major part of the work that our national network of Education and Training Officers undertake. They go into hospitals, care homes and other organisations to help them understand more about Parkinson's and what their patients or residents need to make sure they are as well looked after as possible.

Last year our Education and Training Officers educated more than 19,000 health and social care professionals about Parkinson's. But, as the CQC's report makes clear, there's still plenty of work to be done.

Tell us your experiences so we can continue our work to make sure that people with Parkinson's get the best care possible.

Let us know if you, or the person you care for, have experienced any problems with care, and our Education and Training Officers can offer their expert advice and training. Contact us on professionals@parkinsons.org.uk

Together we can make a real difference.

Opening up European research

noreply@blogger.com (Parkinson's UK) — Wed, 18 Jul 2012 10:49:00 +0000

Every day new and important research discoveries are made and scientists publish their findings.

The research will probably have been publicly funded either through taxpayers’ money or charities and the researchers who wrote the paper don’t make any money from publishing it.

But unless you (or your workplace) pay a large fee, you won’t be able to access the research in full.

It’s a frustrating (and many believe) morally wrong system. And we firmly believe the results of publicly-funded research should be fully and freely available to all - take a look at our open-access publishing policy.

And now research funders are joining together to take a stand. This weekend, reports were circulating in The Guardian, that this could become a reality within 2 years.

What's more, on Friday the European Research Council announced that it is joining UK PubMed Central – an online biomedical research library that is leading the open-access revolution.

UK PubMed Central already has some heavyweight funders involved – including the Wellcome Trust, Medical Research Council, and of course Parkinson’s UK.

But getting the European Research Council on board, which has annual research funding budget of billions, is a major step forward for the open access movement.

Later this year the library will be re-christened ‘Europe PubMed Central’ encouraging other European funders to get involved.

And across the pond over 28,000 people recently signed a petition urging President Obama to make all federally funded research open-access.

But it’s not all about funders. Researchers have a massive part to play in the debate too.

We’ll be talking to UK researchers about open-access publishing at our research conference later this year and we’d like to tell them what you think about open-access publishing – so please tell us in the comments section below!

Heads in sand on social care

noreply@blogger.com (Parkinson's UK) — Thu, 12 Jul 2012 16:50:00 +0000

Yesterday saw the coalition government publish its plans for a 21st century care system for England.

The social care system is something none of us hope to encounter but millions of us will - either because you'll need care yourself or you have someone close to you who does.

At present, you couldn't design a worse system and it's been crying out for reform.

To some extent the Government has listened to concerns. The new social care White Paper means that if you're a person with Parkinson's in need of care, or a carer of someone with Parkinson's, your council won't be able to ignore you. There will be a basic national threshold of need over which anyone can expect some help, rather than 150 different councils each deciding what their own thresholds are.

There will be more national information and advice, as well as letting people share their views and recommendations on services, something which will help people with Parkinson's who have to fund their own care.

A Care and Support Bill will put more of this into practice. However most of this won't happen for 3 more years.

It all comes back to money.

The delay is down to the fact there's no real money to make these changes happen.

As always with social care it comes back to money: a system that's been starved of it for many years will just have to struggle on. The message from yesterday was it's not an economic priority - despite the costs to the NHS of having to pick up the pieces, and to people giving up work to care for others.

Similarly, there's no priority for the Dilnot report and its recommendation to cap the worst costs of care for people who have to sell their homes or bear years of funding their own care. Again the message from the Treasury is we can't afford to do anything to help - yet.

The Dilnot model helps people with modest assets and middle incomes, who stand to lose the most when faced with costs upwards of £35K for their care. Many people with Parkinson's fall into this category having faced years of covering their care costs.

Instead, 'pay when you die' screamed the headlines yesterday. The Government shifted attention to a planned nationwide scheme to help people defer paying care costs until after they die. The council would fund that person's care in return for recouping their costs when the person's home is sold. But in some areas councils already let people do this anyway.

The bottom line is that this isn't an answer to the politics of people having to sell their home to pay for their care.

What do you think?

We'll be digesting and responding to the Government's plans. We'd really welcome your views on this debate.

Do you agree or disagree with what the Government has done? What do you feel about people having to sell their homes to pay for their care? Is this an issue that's important to you? Add your comments below or email us on campaigns@parkinsons.org.uk

And while we consider our next moves to end the care crisis, sign up to our Campaigns Network - we'll keep you updated on our social care campaigning work.

A really good call for people with Parkinson's

noreply@blogger.com (Parkinson's UK) — Tue, 26 Jun 2012 10:05:00 +0000

Last week, we launched a first in the charity world - pay-monthly mobile phones that donate money to Parkinson's UK. Here, Rachel Backshall, our Head of Business Development, explains how the project came about.

"It seemed like a very simple idea; develop a mobile phone that lets people donate to the charity when they use it. 2 years later, it is fantastic to see the project finally come to fruition.

"Phones for Parkinson's started out as the brainchild of one of our supporters, Charles Easterman, who had started to have trouble using his mobile phone after being diagnosed with Parkinson's. Charles set us the challenge of developing an app that would make phones easier for people with Parkinson's to use. While developing this app, it dawned on us that our foray into phones could go one step further.

"Mobile phones were increasingly being used by charities through various 'text to donate' schemes, but we wanted to turn the simple act of using your mobile phone into a way to raise funds - and Phones for Parkinson's was born.

"Having already worked with Talking Telecoms to look at how people with Parkinson's were able to use a smartphone - we decided to team up to see if we could make this project a reality.

"Using Talking Telecoms' existing relationship with Orange, we were able to strike a deal where four tariffs and four popular handsets could be offered to customers, with 45 per cent of the profits from the cost of the handset and ongoing monthly bills being donated to us. We hope to raise £50,000 from this partnership in the first year.

"Although the project is still in its infancy, the reaction to the idea has been fantastic and we are already looking into how we can develop the project further, expanding into pay-as-you-go sims and other apps and accessories.

"We are really excited to see how Phones for Parkinson's will grow and with the number of active mobile phones in the UK now outnumbering those who live here, we can finally say that it really is 'good to talk'."

To find out more about Phones for Parkinson's, visit the dedicated pages on our website or call 020 3476 2626.

Paul Jackson-Clark, Charles Easterman and Rachel Backshall at the launch of Phones for Parkinson's

Duplication in Parkinson's research? Not on our watch

noreply@blogger.com (Parkinson's UK) — Thu, 14 Jun 2012 09:39:00 +0000

We’re often asked about duplication in Parkinson’s research, and why seemingly similar projects are being carried out by different research teams around the world.

A prime example of this is stem cell research.

In August last year Parkinson's UK-funded scientists succeeded in growing new nerve cells with a rare inherited form of Parkinson's.

This was followed swiftly in February this year by a research team in the US who announced that they too had made skin cells from nerve cells with genetic Parkinson's.

On the surface, these 2 achievements look identical. But dig a little deeper and you'll find a subtle but crucial difference.

Our researchers grew nerve cells with a mutation in alpha-synuclein, whereas the US team were studying cells with a change in the Parkin gene – 2 very different genetic mutations that have vastly different impacts on the nerve cells.

At Parkinson's UK we work hard to make sure every penny raised for research works as hard as possible.

Our rigorous research funding process involves international experts and people affected by Parkinson's which helps us to avoid duplication and make sure the projects we fund are meaningful to people living with condition.

We talk to other key players in the research community - including pharmaceutical companies, researchers, other funders and government bodies - to keep us right at the heart of international Parkinson's research.

And we're helping researchers to share their knowledge and work together.

Our research conference brings the UK Parkinson's research community together to share and discuss all the latest research.

And we provide funding to researchers for themed research workshops to bring people in their field together and develop new ideas.

So next time you see a familiar piece of research news, look a little closer – it's probably more exciting than you think.

Tell us your thoughts on Parkinson's research by visiting our forum, emailing research@parkinsons.org.uk or adding your comments below.

Volunteer John is 'Ultimate Local Hero for 2012'

noreply@blogger.com (Parkinson's UK) — Thu, 07 Jun 2012 13:53:00 +0000

One of our amazing volunteers, John Lange, from Stirling, was honoured as 'Ultimate Local Hero for 2012' and 'Charity Hero for 2012' by his local radio station, Central FM, last week.

John, 51, was diagnosed with Parkinson's 7 ago. He set up the Forth Valley Young Parkinson's Group a year ago and has been a tireless fundraiser and campaigner for Parkinson's

John received his award at a special ceremony celebrating people who have contributed to make their local area a better place.

But his nomination had been a surprise kept by his wife and close friends. He didn't know he was up for an award until his name was read out.

"I do what I do to help others with Parkinson's," said John.

"I've had great support from wife, kids and granddaughter, my brothers and sisters and others who don’t even know me. I am deeply honoured."

Volunteers' Week 2012 ends today, 7 June. It celebrated the fantastic contribution that millions of volunteers make across the

In 1969, our charity was started by a group of volunteers and they are still at the heart of everything we do.

Find out about opportunities to volunteer or tell us your volunteering stories volunteering@parkinsons.org.uk

23andMe patents Parkinson's gene

noreply@blogger.com (Parkinson's UK) — Fri, 01 Jun 2012 13:03:00 +0000

This week the 'personal genomics' company, 23andMe, announced their first patent on a discovery from their web-based Parkinson's study.

A patent is an exclusive right given by law to inventors to make use of, and develop, their inventions for a limited period of time.

23andMe's patent relates to a subtle change in the genetic code that may reduce a person's risk of developing Parkinson's.

In science, patents can be used to protect new discoveries, like potential drugs, from being exploited by others. This means patented ideas and discoveries can be bought, sold and invested in.

Over 6,500 people with Parkinson's from all over the world have taken part in the study so far. Participants fill in an internet survey about their symptoms and lifestyle and provide a sample of saliva containing their DNA.

It's very rare for Parkinson's to be inherited. But access to such a huge amount of information has allowed the researchers to pinpoint genetic changes that slightly affect the risk of developing the condition.

The question of whether genetic discoveries can be patented is a hot topic that's currently being debated in the US courts.

There are 2 sides to the story. Companies like 23andMe argue that patents are the best way to translate discoveries into new treatments. But critics say patents hinder the progress of academic research.

What do you think about patenting Parkinson's genes? Tell us your thoughts by leaving a comment below or email us on research@parkinsons.org.uk

Peers visit the Parkinson's UK labs

noreply@blogger.com (Parkinson's UK) — Thu, 24 May 2012 10:10:00 +0000

Peers from the House of Lords visited our Parkinson's UK funded research labs at the University College London’s Institute of Neurology yesterday (23 May).

The Peers are all members of the All Party Parliamentary Group (APPG) for Parkinson's.

The APPG helps to raise awareness of Parkinson's issues in parliament with MPs, peers and other policy makers.

As well as a tour of the lab, they met researchers and discussed the huge range of research being undertaken into Parkinson's at UCL.

One of our researchers, Professor Nick Wood, talked about how the latest gene discoveries are allowing his team to piece together the steps in the pathways that lead to Parkinson's.

Other presentations included research into how useful of treatments such as deep brain stimulation and posture correction approaches are for people with Parkinson's.

Baroness Gale (pictured above with a researcher at the labs), chair of the All Party Parliamentary Group on Parkinson’s said:

"This was a fascinating opportunity for members of the Parliamentary Group to see some of the research that’s being done into the causes and treatments for Parkinson’s.

"This gave me an insight into how much progress has been made, but also what still needs to be discovered."

Tell us what would a cure for Parkinson's mean to you