Born with Gaucher disease, I was introduced to the word "rare" at the tender age of five (no pun intended!), as patients with any rare disease will no doubt be able to relate. Once diagnosed with a rare disorder, life is never quite the same again. It's like having a permanent post-it stuck to your forehead with the words R A R E D I S E A S E written in florescent colours.
Most of us living with Parkinson's disease are on a cocktail of pills we ritually take each day. We can try to help maintain the dopamine levels to some degree by eating the right foods. A well balanced diet alone cannot of course replace Parkinson's medications, but ensures they work at an optimal level.
I was diagnosed with Parkinson's at age 44, and at the beginning as symptoms started to appear and make themselves known to me, I paid close attention to my driving. The last thing I wanted was to be driving when I shouldn't. I had no intention of putting myself in danger, or worse still causing an accident and hurting someone I love or any innocent victim.
Most people don't think twice about having pension schemes, life insurance, money tucked away in a savings plan for a rainy day, as this is considered being smart and planning ahead. So why is there a psychological block and what is the problem in tackling one's long-term living conditions in the same manner?
Growing up with Gaucher disease, I wasn't allowed to participate in sports at school and often felt left out, but knew my bones were weak and fragile. I frequently had bouts of unexplained chronic bone pain, so didn't need much convincing to steer clear of the sports hall and the highly spirited netball team.
I am typing this article in bed, on my laptop which has been precariously propped up, barely able to see the keys, I am determined to finish this piece. You may be wondering what on earth I've been up to. Sorry to disappoint you, but it doesn't take much to injure myself, and I wish I had an exciting fascinating tale to relate, but the truth of the matter is sadly quite pathetic.
I was born with Gaucher Type 1, which is the most common form of this genetic lysosomal storage disease, but there are in fact three types. You may not know or have heard about Type 2 and Type 3 which are rarer still. As the aim of the International Gaucher Day is to raise awareness, I would like to bring attention to Types 2 and 3 Gaucher disease, that are often overlooked.
I will admit many things, one of which is my inability to follow a map, and poor sense of direction. Well, if I were being totally honest, I'd confess, I have no sense of direction whatsoever. My husband will quite happily back me up on this point for I have demonstrated on many occasion, much to my shame and his amusement, getting lost even in familiar surroundings.
I would like to dedicate this article to a good friend who is battling Parkinson's and will hopefully be undergoing surgery soon. May you have a speedy recovery, resulting in an improved quality of life. This article is for you - one of the many unknown heroes, whose private story goes unsung but who inspires me with your bravery, insightful words of wisdom, a great sense of humour and wit.
I've been asked on occasion "How do you get Parkinson's?" Believe me, I wish I knew the answer to that million dollar question. I'm sure I wasn't the only child who was told "never sit on a public toilet seat" for fear of catching something nasty, the advice of which I took most earnestly when young.
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.