THE BLOG

Turn Me "On" Please!

15/01/2015 11:21 GMT | Updated 16/03/2015 09:59 GMT

Do you feel like the Energizer bunny whose batteries have been removed, rendering you unable to move or function properly? If only the solution was as simple as putting in new batteries and pressing an 'on' switch, Parkinson's patients would be turned 'on' all the time. If you are unfamiliar with Parkinson's disease, you are probably wondering what on earth I'm talking about. Allow me to explain and all will become clear. Are you sitting comfortably? Good ....then I'll begin.

Soon after I was diagnosed with Parkinson's at the age of 44, I visited a lady who was a good twenty years my senior. With trepidation and a touch of curiosity, I sat in her kitchen as she painstakingly made coffee for us both. We sat facing each other, her hands exhibiting a noticeable resting tremor, she asked me, "Are you having 'on' and 'off' times?"

Being newly diagnosed, I was far from suffering what would become in future years, one of the most annoying debilitating symptoms of Parkinson's. At the time, unfamiliar with the term 'on' and 'off' I asked for clarification of this phrase. Not wanting to upset me, she refused to explain further, leaving me with the unsatisfactory answer, "You'll understand when it starts happening to you".

Although frustrated at being brushed off, I was too polite to push her further. Needless to say, some years later, from personal experience I know full well what 'on' and 'off' means to a patient suffering from Parkinson's. It's no great secret nor is it rocket science. The term 'on' is when thankfully your medications are working and you can function to some degree of normality. Hence 'off' is when medications stop working effectively, rendering you suddenly helpless leaving no choice other than to rest and wait till you are'on' once more.

It is the most peculiar feeling, and I impatiently wait for the 'on' periods, knowing I have a window of opportunity in which to accomplish anything. Like a race against time, I try to cram into a short timeframe as much as I can, for each day there are hours at a time, when I can barely function. It's very clear when the 'on' occurs, it's almost like someone has literally turned a magical switch 'on'. When my husband phones during the day to check on me, making sure I'm not getting up to any mischief, (as if I would do such a thing!) hearing my voice, he immediately knows if I'm 'on' or 'off'. This is how I and many others living with Parkinson's spend their day, waiting for the 'on' times.

Life seems to speed by in a flash; the days, weeks, months and years pass so quickly. Sometimes we'd like to stop time in its tracks, staying in the present, just so we can hold onto those we love dearly just a little longer. Sadly time and tide wait for no man, and all we can do is make the most of the present, savour every moment and have no regrets. Making beautiful memories is what it's all about, for no one can take these away, and looking back on good times, warms the heart.

It's human nature to cling to hope, wishing to find a miracle cure, a new clinical trial that may save the day, or search for a second opinion that tells us what we long to hear. I refuse to give up hope and so do millions of others around the world. The circle of life is ongoing, and whilst we mourn loved ones who have passed away, weddings continue to take place, and with joyous open arms babies are born and welcomed into our world. We like to think we have a certain amount of control over our lives, but in reality, we have little power when it comes to unforeseen circumstances, such as ill health.

I would like to address directly those working in the pharmaceutical field, R&D or involved in the search for a cure for Parkinson's. I beseech you to pull out all the stops, think out of the box, but please hurry! Help the millions of patients who suffer every day along with their families from this torturous devastating disease.

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