24/10/2013 07:19 BST | Updated 23/01/2014 18:58 GMT

Weathering Parkinson's

Parkinson's disease is pretty much like the weather; unpredictable like a force of mother nature with a will of its own, that we have no control over. Symptoms and side effects are inconsistent as they vary from patient to patient. There are good days and bad days, and sometimes even half way through a day, as changeable as the weather, suddenly the situation can alter. There is no way to stop global warming, nor turn back the hands of time to repair damage mankind has left as a legacy to future generations. The steady decline of the ozone layer in the earth's stratosphere is irreversible, as is the depletion of dopamine and the permanent damage caused to the brain of a person diagnosed with Parkinson's. With the latest technology, weather forecasts are pretty precise today, yet nothing can be predicted 100% of the time for there is always an element of surprise. One could say the same for Parkinson's as the rate of progression is hard to estimate and impossible for doctors to determine accurately.

I am now in my 7th year of living with Parkinson's, and still amazed at how quickly I can go from feeling relatively good, to falling apart at the seams. Sometimes I can put it down to simply trying to accomplish too much, or being in unsuitable circumstances (such as a large party with loud music and flashing lights), but other times there appears no rhyme or reason. Forgetting to take pills at an allotted time can throw my entire day out, and symptoms become noticeably worse as if Parkinson's is indignant at my lack of respect for the disruption it will unleash upon me. Any anxiety or stress, exacerbate the disease at an alarming rate, as if a cyclone has whirled through my life, leaving chaos in its wake. In extreme cases it can take me a few days to get back to myself, riding out the storm, hoping I'll get over yet another set-back.

Living with any degenerative disease, the unknown future and uncertainty, can be a little too overwhelming so it's best not to dwell on these matters. Life as you once knew it starts to rapidly change in every possible facet. People we considered friends, disappear like thieves into the night, leaving no explanation, merely a painful gap confirming that things will never be the same again. When you find your world is crumbling and falling apart around you, what do you do? How we cope in these situations, is down to personality, inherent traits that make us who we are. One could sit wallowing in self-pity, which benefits no one but Parkinson's, for it's only too delighted at a chance to get a foot in the door, with no intentions of backing away. As a hungry scavenger, awaiting its prey for a moment of weakness brought on by tension, nervousness or depression, Parkinson's is ready to pounce, striking with all its might.

However putting up a fight, maintaining a sense of humour, staying optimistic and cheerful, Parkinson's is reticent and less likely to hit with full force, although irritatingly remains in the shadows at all times. Regardless of my happy disposition, I continue to lose a little bit more of myself, and begin to wonder how long this will continue, until there is nothing left of me at all, except an empty shell resembling a person my family once knew and loved. Slowly my abilities are being stripped from me, yet my mind remains sharp enabling me to continue writing, and thankfully I'm able to focus whole-heartedly when public speaking, getting my message out there loud and clear.

I battle each day, but ultimately, like an inseparable couple, Parkinson's appears to have the last word in an on-going argument. Therefore clinging to routine is comforting, and gives me a sense of order, which is one of the few things holding together some semblance of a normal life. I have always been meticulously tidy and organised at home, and fortunately this is something I can still control. There are so many activities I can no longer do, I grip tightly onto the few things I have left, one of which is my writing and campaigning for Gaucher and Parkinson's.

With no cure in sight for now, I shall have to weather Parkinson's and make the most out of my life. I enjoy the sunny days and occasions that bring me warmth and joy, and hope there are far more good days than bad. Life is often too short, and I appreciate how precious good health is. Parkinson's has a way of making you look at life through magic binoculars, for the horizon somehow looks different, as I see with great clarity what really matters.