THE BLOG

Travelling With Gaucher and Parkinson's

25/06/2015 12:28 BST | Updated 24/06/2016 10:59 BST

As a writer, I've had to be extremely creative on occasion when I've run out of paper and have used almost any surface to write on, such as paper doilies under drinking glasses in a hotel bathroom, the back of a paper menu and once used an eye pencil when my pen wouldn't work. I have also written in some pretty unusual places; the bathroom in the middle of the night in Barcelona, a hotel bar in Warsaw whilst I watched the snow fall in temperatures of -5, and on a paper napkin in a roadside café. So where am I writing this article? I find myself once again, sitting in the departure lounge, waiting to board a plane. The chaos and noise of an airport for someone suffering Parkinson's disease, is about as appealing as a trip to the dentist for a root canal. Getting up at the unearthly hour of 01:00 was no problem for yours truly, as this is where insomnia (a common symptom of Parkinson's) actually comes in handy for a change. I was already wide awake when the alarm went off waking my sleepy husband. Like thieves in the night, we stole out of the house, got in the car without a word, and by 02:00 were on our way to the airport.

At this time of the morning I was completely "off", and for those of you unfamiliar with this term, it simply means the Parkinson's medications are not working, so going to the bathroom at an airport can suddenly become a nightmare. I took such a long time, my husband eventually dared enter the "ladies" to check on me. Now that's what I call a brave man! It's hard enough doing anything at 03:00, barely compos mentis, struggling with button and zip on my jeans in an airport toilet cubicle, where I was having an extremely difficult time. What didn't help was my toes decided to start a mutiny, with the incredibly annoying, not to mention painful toe curling to subside before I could walk and leave the ladies bathroom with dignity.

My husband has become highly adept in pushing me in my wheelchair whilst manoeuvring a large case on wheels at the same time - impressively even up and down steep inclines. This requires not only strength but the ability to steer avoiding any oncoming passengers and obstacles.

My mother instilled good manners in me when young; "don't say anything if you can't say something nice" and "don't stare". At an airport, people will shamelessly stare at anyone. Don't people know it's rude to stare? It makes me feel very conspicuous, and I'd love to shout out "It's OK, I don't have anything contagious, it's just Gaucher and Parkinson's" but that might unnerve them even more!

We finally made it onto the plane, and yes you guessed it, I needed the toilet again. However, looking at my reflection in the mirror, I had to admit, it was no wonder people had been staring at me. Because I was "off", I had a blank expression on my face, could hardly talk, and barely able to move or function at all. But what really made me stare at myself in the mirror, was my delightful hairstyle! Talk about a bad hair day, I appeared like a vision of a long lost relative of Albert Einstein. My hair was sticking up all over the place and super frizzy as if I'd stuck my fingers into an electric socket - not a good look for anyone!

My travel companions, Gaucher and Parkinson's, tag along uninvited to wherever I may journey. Flying abroad with my husband would be a delight if it weren't for these two stowaways, who shamelessly make their presence known to all and sundry. Still with a sense of humour and a smile on my face, I am passionate to help spread awareness about the two things I know best; Gaucher and Parkinson's, which gives me purpose and a reason to get up each morning. While I'm able, I'll continue to tell my story, write and campaign from wherever I may travel.