Born with Gaucher, a rare genetic disorder, I grew up with very little knowledge of the disease I was suffering from. Most doctors and hospitals had never heard of Gaucher and there was no support network. It was only 23 years ago that I finally met other Gaucher patients for the first time, an association was established and at long last I had the good fortune to be placed under the care of a doctor, who is now regarded as the leading specialist for Gaucher disease.
Despite having Gaucher, I was able to live a relatively normal life, like any other family we had our ups and downs, adhering to busy schedules, life was fairly predictable; little did we know or appreciate how good things were at that point. It isn't until something is taken away from you, that you realise its value and importance. Being diagnosed with Parkinson's at the age of 44, most certainly threw a spanner in the works and almost overnight our lives were changed forever. My husband and I continue to meet new challenges I'd never imagined, so taking each day at a time, journeying into the unknown together, like reaching a fresh chapter in book, we're never quite sure what lays ahead. Living with Parkinson's is challenging and at times can feel overwhelming. When this happens, I try standing back and looking at my situation from a different perspective. I perform a private "stocktaking" of sorts, taking note only of the good things and counting my blessings. Surrounding ourselves with positive happy people and looking on the bright side of life with a sense of humour and determination keeps us going through rough days. However it is only a fellow sufferer who can truly identify with the daily struggles a Parkinson's patient endures. This is where support groups are a fundamental tool for both sufferer and caregiver.
Before Internet, e-mails, mobile phones, the technology we enjoy today, and now take for granted, it was far harder to find the latest information, meet with others in the same situation and impossible to correspond with fellow sufferers half way round the world. If there was a support group located near to one's home, then it was a stroke of luck. However, it's not always possible to attend a support group, either because there are simply none in your area, such as in my case, or logistics make it impossible to join in. This is where the Internet and social media such as Facebook come into their own, providing a way of connecting with others who can truly relate, offering each other support on a daily basis. We may never meet one another, but somehow communicating, sharing stories, information and ideas, the support we feel and receive is immeasurable, making us all part of a worldwide Parkinson's Internet family.
There are many websites giving useful information, and I recently came across a very interesting site called "The Davis Phinney Foundation for Parkinson's". They dedicate themselves to helping patients, their families and caregivers giving useful information and advice how to live the best life possible with Parkinson's. The Foundation was founded in 2004 by Olympic medal winner cyclist Davis Phinney, who was diagnosed with Parkinson's at the age of 40. A remarkable man, he is a role model and an inspiration. I urge you to take look at The Davis Phinney Foundation for Parkinson's.
With the Internet at our fingertips, the ability to connect with fellow sufferers worldwide and keeping up to date with new findings through various websites, patients suffering any chronic disease are in a much better situation today.
Living with Parkinson's, I've found myself walking a different path, one I had not anticipated, which I would gladly backtrack and take a different route through life if I could. Of course I know I can't turn back the hands of time, nor change my DNA, so it's counter-productive to even think how my life could have been any different. I try to focus on the present and "be in the moment" living the best life I can. So thanks to the Internet, no patient has to feel alone. We can battle Parkinson's together, and as The Davis Phinney Foundation say: "Every victory counts."
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