A Rude Awakening

I had a rather unpleasant reality check, upon hearing my husband say he wouldn’t dream of going away on a sailing trip, leaving me at home totally alone (if you don’t count the dog) whilst I was under the weather and having a rough few days. It was a rude awakening, a wake-up call so to speak, that my husband, who knows me better than anyone, is uncomfortable leaving me alone. He takes great care of me, and would give me the moon and the stars if he could, so I don’t take offence at his remark or observation of my condition. However it did make me stop and think long and hard, about how much he must go through, and the heavy burden he carries taking care of me. Even when he’s at work, no doubt he’s wondering what I’m doing at home, if I’m getting up to any mischief and that I’m OK. Me get up to mischief? Perish the thought!!!

To think of not being independent is a frightening one, and becoming a burden to my family, if I can no longer be left alone overnight is a terrible feeling. Having Gaucher is one thing, but having Parkinson's too, makes my situation much more complicated.

I am so mad at Parkinson’s, if I could, I would grab him by the arms shaking him really hard whilst shouting right into his ugly wretched face “What the hell are you playing at, messing up millions of lives? Making so many people and their families suffer.” But my ranting’s would go unheard – for Parkinson’s is a disease named after a man who died long ago. It has no soul, no beating heart, but is reflected in the faces of millions who suffer the indignities and destructive force of this debilitating neurological disease.

So I carry on smiling and keeping cheerful despite it all, and do what I do best, and that is writing and speaking - advocating for those who have no voice It's winter, it's cold, not feeling your best, no appetite? There's a remedy: the magic of chicken soup: Take a look at my article in The Huffington Post.