Today I’m delighted to announce that Parkinsons.Me is celebrating being awarded charity status. After a long wait of over eight weeks we had the great news via “that email” very early last Friday morning. So now the hard work begins in earnest with the backing of the Charity Commission. I’ve shared some of my story but herein is the press release that I wrote many weeks ago in preparation for this incredibly special occasion.
The story so far:
In the Summer of 2013 at 41 years old I was diagnosed with young onset Parkinson’s. I vividly remember that day in June when my world was turned on its head. As I walked out of the consultant’s office I was the same person who had walked in but my view of the world had changed forever. As a father and husband my immediate horror was the possible inability to support my family and to live our dreams. The fear and uncertainty was so difficult to comprehend that for the most part I refused to discuss anything related to the diagnosis and pushed my head well and truly into the sand. For many months I told no one. As long as I could mask the symptoms I carried on as “normal”. I refused to read any related literature, never “Googled” my condition and certainly would never have sought out an online PD chat room! Instead I worked quietly on a food and exercise diary and challenged the prescribed drug regimes.
As time went by and it became more difficult to physically keep up the pace I started to trust those close to me and share my diagnosis. I was shocked at how it helped telling people, and amazed at the support from family and friends once they knew what had obviously been troubling me. Being inspired by that support and anticipating the need for the same in the larger community I began to mull over ideas to create a self help website. I wanted to share my experiences and guide others using the knowledge I had gained through those many months of quiet personal research.
So on 21st November last year I asked “SIRI” how to create a website and the journey began! As it’s my story I titled the site very aptly “Parkinsons.Me”.
The aim of the concept is plain and simple, to offer support to suffers, their carers and families, and to raise awareness of the condition. I want to help destroy the myth that disabled means unable, dispel the idea that Parkinson’s is an old person’s disease and get the message across that it is not the beginning of the end. I’m no medic but I have a wealth of insider information and plenty of empathy. I want to show by example that there are steps that can be taken through diet, exercise, community participation and positive thinking that will empower and make our lives better.
The site is simple to use. Head over to Parkinsons.Me, check out the pages on nutrition, exercise and personal experiences, and get involved via “contact us”. Our Facebook, Twitter and Instagram accounts are updated regularly, these entries also appear on a constant feed to the Parkinsons.Me website. The hope is that by approaching many mediums we attract more visitors and offer something for everyone.
Along with the online support we have begun to raise our local profile by setting up and participating in challenges and events with the goal of building team spirit and raising some funding too!
I’m actively seeking corporate sponsorship to raise funds to finance the key roles needed to advise and support the online global community that are already becoming regular visitors. The aim is to engage experts in exercise, nutrition and coaching on a full time basis and compensate the other skills needed as necessary so that we can offer whatever is in demand.
Until then I am using the pool of knowledge gifted by my generous group of friends. I am surrounded by the most dedicated guys, personal trainers, scientists, therapists, business owners, chefs, marketing execs, social media experts, IT consultants, physiotherapists and chiropractors to name but a few. There are very few aspects for running this project that they haven’t got covered. And I’ve been a little cheeky! If anyone asks if they can do anything to help I make a mental note for later. It’s all about community and using the resources we have as a team.
The site has had a soft launch with the plan of an exciting official launch being formulated as we speak. All details of future events will be advertised on the website and on all social media sites.
I am constantly gathering the tools I need to deal with the many challenges my PD brings. The future is less uncertain and I am feeling more optimistic than I ever imagined I would again. In fact, I would go as far as to say that I’m very excited about the potential this project has and the difference it could make to so many peoples lives.
There are greater things to come!