THE BLOG

Was It Something I Said?

27/03/2015 18:19 GMT | Updated 27/05/2015 10:59 BST

There have been a number of references recently in the press about exciting research into the connection between Parkinson's and Gaucher disease. Does Gaucher disease hold the missing link which may assist in finding a cure for Parkinson's? Only time will tell. I was born with Gaucher, a rare genetic disease, my parents unknowingly passed on to me. Although a serious disease and trust me, the symptoms are no picnic, patients in general outwardly look well and you'd never know, unless told, that they suffer from a chronic lysosomal storage disorder.

However, it was only when further diagnosed at age 44 with Young On-set Parkinson's disease, that I began to realise how various diseases are received differently by family, friends and the general public. All are not afforded the same understanding and empathy as a rare disease such as Gaucher. So what is it about Parkinson's that makes it such a difficult disease to come to terms with, and why generally do people have a hard time understanding and appreciating what a sufferer and their loved ones go through?

When first diagnosed, there is a flurry of shock and interest from those you know, but slowly as they realise this is a long term disease requiring dedication, their sympathy wanes. Friends, and bizarrely, some family too, have mysteriously vanished into thin air. It's almost as if I've announced this household is under quarantine due to an outbreak of the black plague. I can assure you, Parkinson's is about as contagious as becoming pregnant by sitting on a public toilet seat! Clearly there is something that sends people running in the opposite direction, and in a way, I don't blame them. Believe me, if I could run away from Parkinson's, I wouldn't give it a second thought. I'd don my trainers and sprint out of here before you could utter the word "dopamine"!

As Parkinson's progresses, dyskinesia and dystonia may occur; two very disturbing visual symptoms, for both sufferer and those who have the strength of character to stick around. These nasty symptoms have the devastating effect of making the sufferer look as if they are mentally impaired. If you dare look closely, past these graphic alarming signs, you'll see remnants of a person who still has full cognitive skills and remains as smart as a whip.

A few brave souls stay in contact, and for their friendship and support I shall be eternally grateful. How sad that many find Parkinson's too much to bear; try living with it 24/7 and then let's hear what they have to say. I suspect their opinion would be very different.

The isolation Parkinson's can cause has a devastating effect on social life, where visitors and invitations become far and few between. "Was it something I said?" or is Parkinson's a disease that alarms and repels people? I think the answer is the latter, but this is human nature. Parkinson's by its degenerative nature, is highly upsetting to witness, and hard to comprehend for every patient suffers in a different way. There are no two people alike, few rules, crazy side effects to strong neurological medications that can sometimes compete with the nasty symptoms of the disease itself. Then there are the "on" times when medications are working and a patient appears almost normal, as opposed to "off" times when medications cease to work rendering a person unable to function at all. Never knowing if it's going to be a good or bad day, making arrangements in advance becomes increasingly difficult, accompanied by a certain amount of pressure and anxiety (which exacerbate the disease). As extreme fatigue takes over, one can feel quite self-conscious, and therefore eating out and late nights become a thing of the past. The only thing one can predict with certainty, is that Parkinson's is unpredictable!

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