Speaking up for change at the Liberal Democrat Conference

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

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

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

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

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.