Alex Flynn - the man behind the 10 million metres

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

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

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