Take a Glimpse Into My World

I’d like to share with you a glimpse into the world of living with Parkinson’s from a patient’s perspective. Being diagnosed with any chronic degenerative disease can be a shock to the system. Accepting and digesting such news is very individual, and a process that covers a gamut of emotions.

Some hope the diagnosis is wrong or remain in denial. Many sufferers struggle with depression which is a common symptom of Parkinson’s and to be perfectly honest, who in their right mind wouldn’t feel down? Other patients decide to stand up and fight, refusing to let this disease get the upper hand. I am of the latter, have a strong fighting spirit, and decided to do something pro-active. I was diagnosed at age 44, and since then have been campaigning, my aim: offering support to fellow sufferers and caregivers whilst creating greater awareness to a disease who everyone recognises by name, yet actually know little about.

Talking to a group of young women, I asked if they’d heard of Parkinson’s, to which they all energetically nodded their heads. I then inquired if anyone could tell me what the symptoms are. A hand shot up and a lady said “shaking.” I agreed, and looked around the room for any other comments, but there were none. Needless to say I took this opportunity to enlighten the audience.

One of the first symptoms, which usually goes unnoticed as it is gradual and not disturbing, is losing one’s sense of smell, which I must confess, on the odd occasion is not altogether a bad thing! However, missing out on the smells of freshly brewed coffee, cinnamon buns, flowers or any of the hundreds of wonderful aromas is upsetting, but let’s face it, it’s not the end of the world. The symptoms that start to follow are remarkably more disturbing, such as shaking or tremors. There are several types, each as unpleasant and annoying as the next, and strange as it may sound, not everyone suffers from the same symptoms. A resting tremor, as it plainly suggests, when sitting doing nothing one’s hands or legs shake. There are also internal tremors, although not visible to anyone else, the sensation is highly unpleasant. Dystonia, which is the most disturbing for others to watch, and exhausting for the sufferer, as it’s like doing a Jane Fonda work out 24/7 (great for losing weight I might hasten to add!)

Slowness of movement (bradykinesia) is yet another delightful addition to the Parkinson’s malady. I used to be as quick as a flash, a master of ‘multi-tasking’, and thoroughly enjoyed walking everywhere. To suddenly have great difficulty in walking, a change in my gait, shuffling and dragging my left foot, I find incredibly annoying. Not to mention ‘freezing’ on occasion, where one is abruptly rooted to the spot and unable to move. This is also accompanied by a general stiffness and rigidity, particularly in the upper body and arms which no longer swing when walking. Like so many women, I love pretty shoes (pathetic I know!). Sadly long gone are the days when I would wear high heels, which now would be plainly dangerous, for another symptom is poor posture, hunched shoulders, and lack of balance. Annoyingly I’m constantly told by my ever loving family, to sit or stand up straight. As for falling, I’ve lost count of how many times I have fallen, but thankfully I haven’t caused any serious damage to the furniture, but have resulted in some rather colourful bruises.

As if this isn’t enough; insomnia, difficulty in swallowing, choking on food or one’s own saliva, loss of dexterity in fingers, stinging eyes from lack of blinking and losing one’s facial expressions. There are quite a few more symptoms as the disease progresses, but maybe you’ve heard enough for one day!

Parkinson’s, is an unwanted gate crasher, who arrived at a party without an invitation and refuses to leave. It envelopes every aspect of one’s life, just as a blanket of snow carpets everything in sight. However this blanket gives neither warmth nor comfort, but impedes one’s life every day with its many debilitating symptoms, and side effects of medications. I’m still here hidden somewhere inside this rigid slow body, my emotions not visible from behind a frozen mask that used to be a smiling face with expressive eyes. I have little strength left to keep up the fight, as Gaucher and Parkinson’s disease overpower my body. But I have a stubborn streak in me, and refuse to give in, apart from which, I have to write another article for next week’s Huffington Post, so I guess I’ll have to carry on fighting!