I was diagnosed with Parkinson’s 8 years ago and for the first two years wallowed in self pity ( perfectly understandable ).I had been told I had an incurable degenerative disease I was 47 .So how did I get from that place to completing the Dublin Marathon 2011 and walking it in 6 hours 54 mins and 41 seconds last Monday .???
The first thing I was told was doing look up the internet you will be terrified! Well I had not even turned on the computer and I was already terrified !!
I went to a meeting for people with Parkinson’s on my own and ran out crying when I saw the ravages of the disease in the room, again I was terrified.
So I started this journey on my own a journey to discover the best way to manage, my symptoms and to empower myself to improve my quality of life through exercise, nutrition and mindfulness. The result of this journey or at least the last year of the journey is recorded in my blog move4parkinsons.blogspot.com/
The purpose of doing the marathon was twofold one to see how my health reacted to the forced exercise and secondly to raise awareness about Parkinson’s disease in Ireland.
I achieved both ,I am now fitter than I have been before I was diagnosed and my marathon day raised lots of awareness!! Its all recorded on my blog. I believe that an education programme that is uniform for people with Parkinson’s when diagnosed is essential and needs to be available for anyone wanting access to it .I know that all of us are affected differently and will have different needs, medication etc and progression but we all need to have the option to get the information to help us understand how the disease may impact our lives and the challenges we face so that we have the choice to immediately implement changes.to support the challenges.
My belief is that we need introductory workshops for patients and carers when diagnosed and ongoing support from mutlidisciplinary teams we can call upon the medical profession to support us but unless we get out there and talk to them about what we need how do they know .We the people with Parkinson’s have got to get our voices heard not is an aggressive way not in a victim way but in an assertive way having respect for everyone who supports us on this journey including respect for ourselves.
So on the 28 th October Jon Stamford came to Dublin we had arranged a patient led information day they expected about 70 people we had around 150 the feedback was incredibly positive. Jon walked through how to navigate the Parkinson’s Movement website which was brilliant .I spoke about my journey and what I have done to empower myself and the benefits I have received .And finally we had a seated yoga session for 150 people and we had a book and a DVD available after it was a huge success. The meeting had given information followed by the practical yoga session and then something to take home to allow you to implement this in you daily livivng
At the end of the session I had done it was announced by my daughter that I had been awarded a medal by The Lord Mayor of Dublin for my efforts in getting to the marathon and raising awareness I was thrilled and now even ,more motivated .It was presented in front of 14,000 people at the start of the Dublin Marathon last Monday!
There is fantacstic research going on at the moment for a cure we need to be well so that we can avail of it when it arrives.
There are so many people out there with Parkinson’s dong so much good work. I believe we need to harness all the ideas and start getting an overall programme together to support, Quality of life
All comments welcome