UK
Age diagnosed: 58
Specialist interest: Awareness, PB4U and living well
Our most recent venture is called PB4U (Personal Best for You). A six month project where individual goals are set for physical attainment, meetings are then held in a gym once a month with the other three members of your group. 36 people have now signed up for the challenge.
I have recently been a facilitator with the Fighting Fit programme which held a pilot weekend last November. The programme was conceived by Peter & Laurel Miller and Pat Salter, who had a vision to give younger and working age people the tools to take back control of their lives.
It has taken a few months for me to apply to be an Advocate on this page. Everyone else seems to have done such grand, amazing things and I almost didn’t feel worthy of being on the wall of fame. However, with me comes a great team who have become friends for life. We encourage one another, make money, and raise awareness at every opportunity as well as actively taking part in research all over the South East. Every single one of us can be involved in research and it doesn’t mean it has to be interventional. So many people misunderstand research and assume they are not needed. It can be anything from taking part in online tests, giving a blood sample, to wearing a tracking device.
Dance for Parkinson’s at Tring Park has now been up and running for a term. It is a truly fantastic advertisement for a collaborative project between local people with Parkinson’s, a vocational dance school, and a national dance organisation. It all began with an email and a big ask. Now we are making real headway; what next?
I am one of those very ordinary Parkinson’s people who was diagnosed about eight years after the tell-tale symptoms had began. It feels almost blasé now to say it was all so predictable – the hurting shoulder, the eye problems and then the teeny tremor. The months of testing and being made to feel grateful for what I don’t have and then off to the DAT scan and yes you are lucky, it’s only Parkinson’s!
The diagnosis was a Eureka moment which made me mad but also forced me to acknowledge that this needed sorting and that I wasn’t going to be content swallowing large doses of dopamine for the rest of my life without knowing why. I now swallow other things but not as much Dopamine.
I researched and discovered I had an individual condition and, far from running away, I decided to face it head on and make the best of this new world. Having started my research and after finding the best specialist for me, I began the journey which has had memorable moments along the way but I am still here, fighting and learning more every day.
Experience is an interesting choice of word and actually means ‘the knowledge or mastery of an event or subject gained through involvement in or exposure to it’. This being the case, I am highly experienced having been unwillingly exposed and completely involved in Parkinsonism, although not by choice!
To become an ‘experienced’ person it really necessitates telling other people what you have suddenly got, even though you have had it for 10 years and aren’t any different.
My family have known since day one and then I met someone else with the condition. Buckinghamshire was, like most areas of the country, equipped with a PUK group which catered for members by giving support and friendship. Whilst both of these things are absolutely vital, there was nothing at all in the area for exercise, dance, or voice which working people could attend.
Having reached the point where we understood it is not all bad, a few of us decided to set up our own working age group and began searching for a neuro-physio who would provide classes for us. Little did we know this would turn into The Buckinghamshire Parkinson’s Therapy Hub with five classes on offer for anyone who would like to attend. The Aylesbury branch are fantastically supportive and subsidise the classes.
This is what you call ‘Experience’ and we are making real headway; what next? There is no doubt we are making a difference in the community: fundraising has become second nature; looking for the next opportunity a pleasure; and everything has a direct positive impact for local people.
Ticking away behind all of this has been our desire to be involved in as much research as possible. We meet socially and chat about the variety of medications we are taking and about any research opportunities we can share with one another.
Ticking away behind all of this has been our desire to be involved in as much research as possible. We meet socially and chat about the variety of medications we are taking and about any research opportunities we can share with one another.
We have a branch website and a Facebook page which continually features any hot research progress topics: https://www.facebook.com/aylesburyheroes/
What is the one thing you want to change in the world? – We may not be able to change the world but we can help you accept your Parkinson’s and use it to enrich your life whilst we wait for our clever scientists to find the fix. I would be pleased to help anyone who would like to set up a working age group in their area or set up a local network of PwP who are out there and looking for others. I would also love to help people who want to begin helping themselves by exercising specifically for your Parkinson’s with a qualified neurophysio – all of us need to be doing it.
Tip 1 – Get a doc you get on with.
Tip 2 – Talk to people, you will be amazed.
Tip 3 – Helping others helps you!
Tip 4 – Set yourself a goal.
Tip 5 – Be positive – it’s so much easier than being negative.
Tip 6 – Take part in research; if you have Parkinson’s it’s your duty to help find a cure.