THE BLOG

Speak Out

21/03/2013 15:15 | Updated 20 May 2013

Having two chronic diseases makes life quite difficult (and that's a British understatement if ever there was one!) Trying to keep both disease under control, receiving the optimum medication and improving quality of life is no mean feat. Our family doctor is the integral glue that like a conductor holds an orchestra together; she is the central pivot of various doctors who take care of me specializing in their different fields. Like a driving force, with fresh eyes and new ideas, she has made quite a difference to the ensemble looking after me. One section of my personal orchestra specializes in Gaucher whilst the other sees to my Parkinson's needs. But a patient needs a skilled 'conductor' (family doctor) with soul, to hold it all together resulting in the best harmony. When doctors work in conjunction with each other, the patient's prognosis and treatment plan can be highly improved. Good communication between all parties involved is paramount.

The Internet has given us all a remarkable chance to connect with others across the world, who have experienced, or are in the midst of similar circumstances. The internet is providing a means to a global support group and it's comforting to be in contact with those who can relate to what you are going through, the struggles we sometimes have to battle in life, whether they are health or other issues. To be in contact with people that may live half way across the world, who we would never have the opportunity or pleasure to meet, suddenly appear in our lives; all be it through our computer screens. Modern technology has thrown this generation into a different world, and there are many pros and cons. But support for those in need, is definitely now available, without ever having to leave the house. For those who are incapacitated or bedridden, the Internet can truly become a life line.

Having Parkinson's is somewhat like belonging to a secret society. One member of this society can always spot another, without a single word being uttered. Is it the special "handshake" we have? Or is it the famous shuffle and hunched over pose? The trouble is, this "society" that millions around the world belong to (unwillingly I might hasten to add) have a hard job keeping it secret, and if the truth be known, it shouldn't be a secret at all.

Once diagnosis has been made, the quicker one tells family and friends the better. When those around you understand what's going on, life becomes a little less fraught. Being an author, I find I am on a mission of sorts, doing all I can to create greater awareness and offer support. I am in a poor state of health and it therefore takes every ounce of strength and effort to keep up the momentum. I believe if you have something of importance to say, it's no good sitting quietly in the corner doing nothing. I want to get my message out there loud and clear, keeping Gaucher and Parkinson's in the forefront. The more noise we all make, the greater incentive there will be for scientists and doctors to find a cure. So if you are keeping your "handshake" secret, don't be ashamed; you are not alone, speak out and do something.

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