A lot done. More to do.

A lot done. More to do.

As many of you will be aware, Parkinson’s Awareness day, on the 11th April was a landmark day for us in Move4Parkinson’s. We launched the video and CD for “Something Inside So Strong” and also our new website. To date we have had over 3,500 views on youtube and nearly 1,000 hits on the website. Thank you so much to all of you that supported us and gave us such positive feedback. It has been an amazing experience.

We are committed to keeping up the momentum which was raised and so we have a very busy couple of months ahead of us.

We are looking forward to May which is the European Month of the Brain and we have various activities on. Check out our ‘What’s On‘ section for further information.

Head2Head Cycle

One of the events coming up is a charity cycle which is being organised by Head2head, they are raising funds for both Spinal Injuries Ireland and Move4Parkinson’s.  They held a table-quiz in the Bath pub, Sandymount on Wednesday and I was amazed at the amount of young adults giving so generously to both causes. Most of them will be on the cycle at the end of May from Dublin to Westport and this type of initiative allows us to create more awareness around Parkinson’s disease. I hope to partake in some of the cycle…. watch this space!

I went down to speak at the table quiz and to introduce our charity to the cyclists. I had decided what I was going to speak about during the afternoon. However by the time I arrived to the destination my medication wasn’t working and I knew I would have difficulty getting into the pub as it was packed. When the medication doesn’t work it’s quite hard to navigate the crowds. So I sat in the car and thought about the difficulties people face with Parkinson’s and the troubles they can have in relation to these social situations and how it’s so tempting for us to stay home and not participate in society. So once I was able to walk again, I made my way in to the quiz and instead of my prepared speech, spoke about the experience I had just had and the challenges that sometimes face people with Parkinson’s when we are going out.

We need to continue to raise awareness and educate others about this disease so that we don’t feel that we have to hide away if we are experiencing tremors or have slowness of movement.

Parkinson’s UK Research

In light of the above experience, I thought that it was appropriate to share with you the following conversation I had with Steve Ford, Chief Executive of Parkinson’s UK last week where we discussed the difficulties that people with Parkinson’s experience because of lack of awareness of this disease.

Parkinson’s UK have carried out an extensive survey in relation to the attitudes of people to people with Parkinson’s and they issued the results during Parkinson’s awareness week. Their findings showed “unacceptable levels of prejudice and discrimination”.

The survey revealed that [blockquote cite=”Parkinson’s UK”]many people with Parkinson’s are being subjected to unacceptable levels of prejudice and discrimination[/blockquote]

Around 4 in 10 (41%) people with Parkinson’s they spoke to have experienced discrimination because of their symptoms. This ranged from being shouted at for using a disabled parking space, to being refused service in their local supermarket.

Fighting against the old stereotype Steve Ford the chief executive of Parkinson’s UK commented:

[blockquote cite=”Steve Ford, CEO Parkinson’s UK”]Time and again people with Parkinson’s have to fight against the old stereotype that the condition is just a tremor. People have been refused service in shops and even shouted at in the street. All because people have mistaken their speech or movement problems – common symptoms of the condition – for drunkenness[/blockquote]

You can read the full article here

Changing Mindsets

The survey carried out by Parkinson’s UK, proves the huge amount of work still needed to raise awareness and understanding about Parkinson’s. We are so proud of what we achieved in April and the awareness that has been raised not just by us, but through fantastic campaigns around the world.

No person with Parkinson’s should ever feel that they cannot go out, or that they will be judged by others. We are committed to changing mindsets and to building understanding of this illness. We launched Move4Parkinson’s on 17th April 2012, a year later it’s a case of ‘a lot done, more to do’ – we’re looking forward to sharing that journey with you.

2 thoughts on “A lot done. More to do.

  1. John O'Neill

    Mags your account of your experience on your way to give a talk to the Cyclests was so touching and inspiring. I felt very moved by your honesty with the people and I am sure your spontaneous account of your experience on way to the talk was very powerful. I felt proud to be associated with an organization whose Founder is so honest and courageous. Well done Mags! John O’Neill.

  2. John O'Neill

    Mags your account of your experience on your way to give a talk to the Cyclests was so touching and inspiring. I felt very moved by your honesty with the people and I am sure your spontaneous account of your experience on way to the talk was very powerful. I felt proud to be associated with an organization whose Founder is so honest and courageous. Well done Mags! John O’Neill.

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