I once heard someone say "There are things worse than death" which at the time I thought a very dark and revealing statement. I did not dare ask for an explanation, for we all carry baggage, whether we admit it or not. However this sentence sometimes haunts me, but I refrain from pursuing a train of thought that is destructive and negative.
Diagnosed with Parkinson's or any disease that impedes one's daily existence may not be a death sentence, but it is indeed a life sentence. I have been writing a daily blog for over two years, and write an article for The Huffington Post once a week, from personal experience about living with Parkinson's and Gaucher disease and the many aspects of how chronic disease affects the patient and family. I was therefore quite astonished and to be honest a little hurt, to find that some of my own family don’t know what the symptoms of Parkinson's are. It became very clear indeed, they are not reading anything I write, which I'm sure is not through lack of caring, but maybe they simply don’t want to understand; it's too unpleasant to read about or think they already grasp all there is to know. I don't expect my family to follow my daily blog, as it is ultimately not aimed at them, but rather at fellow sufferers and caregivers. However, to realise they do not understand what I go through each day, the many unpleasant symptoms and side effects, was indeed a shock to my system. I have been giving talks for the last few years to audiences of complete strangers, but it appears I need to educate my family too!
The most frustrating question I am asked by those who are ignorant and know nothing about Parkinson's is "Why aren't you shaking?" The reason I don't shake from head to toe (which seems to be solely what they expect and believe Parkinson's involves), is due to the cocktail of tablets I take each day, at various intervals specifically spread out which has taken much trial and error to obtain the optimum dosage and timing. I wondered how many other fellow sufferers are in the same boat, finding deaf ears when it comes to family understanding and learning about Parkinson's.I have a lot more I would like to say upon the subject; I'm afraid this is all I can manage to write for now. I'm sorry this is brief, but I got little sleep last night, and am not at my best today. Some days are good and some are not. Today is definitely not a good day. Maybe tomorrow will be better.