Considering how many millions of people around the world live with Parkinson’s, I used to wonder why I saw so few fellow sufferers out and about. Now that my personal condition has advanced, I understand only too well why people with Parkinson’s tend to avoid public places and remain hidden away.
I rarely leave the safe confines of my home these days, and am beginning to feel like a recluse in training! Parkinson’s affects my life, and that of my husband, in every way, and I have to admit, recently my confidence has been shaken (forgive the pun) and I think twice about going out. Feeling very vulnerable when out, nowadays I wouldn’t go anywhere by myself. My shaky legs, unsteady and very weak, feel as if they are no longer strong enough to hold me. Falling is an enormous worry, and is to be avoided at all costs. I’m afraid that someone will push past me accidentally causing me to fall over. The domino effect of ramifications which would ensue a fall are huge.
Since the only predictable thing about Parkinson’s is it’s unpredictability, I can never know with full certainty when I am suddenly going to experience an “off” episode. To be out in public whilst “off” is an uncomfortable feeling to say the least. It may present varying symptoms for different people. For me the effects include: hardly being able to walk - my calf muscle pulls painfully causing me to walk awkwardly on the side of my foot. Unable to swallow properly, my breathing becomes erratic and laboured, I’ve a blank expression on my face and as if that wasn’t embarrassingly enough, just for good measure, my toes start to painfully cramp and curl under!
Imagine all this happening in the presence of strangers! Keeping ones composure takes every ounce of willpower and precious energy. It’s no wonder why Parkinson’s sufferers don’t venture out.