Travelling is arduous even for the best prepared, keeping tabs on passport, currency, boarding cards and so on. Flying is, of all transports, perhaps the least passenger friendly. There is no time to make oneself comfortable while being herded like cattle.

And when you have Parkinson’s, those difficulties are compounded by shakes, freezing, unpredictable dyskinetic and dystonic movements. The list is endless and it makes for a tough experience even on short flights. Long haul however is my ultimate nightmare.

Let me give you a brief rundown.

Firstly, my tremors are far worse on travel days, probably because of the anticipated stress. I am sweaty, uncomfortable and shaking like a leaf often before I have even boarded an aeroplane.

Secondly, I have restless legs syndrome, a particularly uncomfortable component of Parkinson’s and one which means I’m constantly having to get up from my seat to walk about until the symptoms abate. And if you’ve never had RLS, let me assure you it is far worse than its rather genteel name might suggest. Imagine your legs writhing internally like cans of worms. Get the picture? Not at all nice.

Thirdly, I have rem sleep behavioural disorder (RBD). This means that I hardly ever sleep on aeroplanes. I can’t because I sometimes thrash about and act out my dreams. Alone in my bed at home this is not a problem. The only person who gets hurt is me, falling out of the bed or punching a hard wall. But on an aeroplane, this is catastrophic.

Fourthly, I need the toilet frequently. Bladder urgency, even frank incontinence, is one of the less widely touted symptoms in the smorgasbord of misery on offer to the average Parkie in the street. But you simply cannot be caught short on an aeroplane. So I don’t drink much. Even so, if the toilets are occupied I become anxious, which makes the tremors worse and exacerbates my other symptoms.

Fifthly, and this is a relatively recent phenomenon, I freeze. And always at the most inconvenient times. My neighbour will perhaps ask me to get up so that they can go to the toilet. My inability to move is taken as rudeness and my anxiety levels and attendant tremors go through the roof.

Sixthly, and especially when I’m nervous, my voice becomes quiet. I have to repeat things, often several times. On an aeroplane, where noise levels are high, I simply can’t get enough voice out.

All these facets make travelling by air something to be dreaded rather than anticipated.

But what is the solution?

Well, it’s not foolproof but I do make certain preparations where possible. Many are obvious – I try to use the toilet before I get on the plane, I don’t drink alcohol, I try to make sure that my tablets are taken at such a time that their peak effect will be whilst on the plane. And so on. Lots of tiny adjustments. But more important than any of these, I try to travel with a “buddy”. This should be somebody who knows I have Parkinson’s and can make appropriate accommodation to my problems. In a perfect world, it’s a good friend who knows me so well that they can anticipate problems before they occur rather than after. This often means they are a parkie themselves. I have a tiny handful of such friends and knowing that I’m travelling with them beside me makes all the difference. I say beside me because that’s what I mean. They can only offer help if adjacent, not five seats away or beyond. And there is a double benefit because I look out for them.

At least this way, I have a fighting chance of making it to the other end without mishap.

But when it goes wrong, it goes royally wrong.

I was on a recent flight to Heathrow from Chicago. An overnight flight, so already a potentially tough situation. But I was happy and confident because I had my “buddy” in place, with the ticket immediately to my right. Better still it was a fellow parky and a good friend. Everything was set. I couldn’t guarantee how the flight would go but I was at least ready. I was in safe hands. I had stacked the odds in my favour.

Then, out of the blue, and for reasons that are unimportant any more, I was bumped to a different seat many rows away with more legroom. I remember shaking the moment I was told. I was angry and frightened. Suddenly my safety net had gone. I didn’t know who I would be seated with.

It turned out to be two total strangers. The one immediately to my right was about as unfriendly as you can imagine. A dark-haired grumpy troll of a woman, she didn’t even speak one word to me during the flight. She pointed to the seat beside me, no “excuse me”, “please” or “thank you”. I got up slowly as I do and although she did not tap her fingers, her impatience was clear. She sat down, wedged her bag under the seat in front, fastened her seatbelt and sighed. I tried to make eye contact but she looked away. I felt like a leper.

My tremors went out of control at this point. I sensed her slide over slightly away from me, repulsed. Evidently she thought I was a pervert. She put on her headphones as I tried to explain.

The journey was every bit the nightmare I expected. I could not get to sleep, not that I dared to anyway. I walked up and down the aisle until the stewardess asked me what I was doing and suggested I went back to my seat. My legs were writhing like mad with RLS. Can you imagine an itch you cannot scratch? Over your entire legs? No, I don’t suppose you can.

I got up again, hoping my buddy might be awake to sense the distress I was in. Alas not. I briefly thought of waking them. There was nobody I could talk to. I’m ashamed to say, but it’s a measure of my distress, that I went back to my seat and wept. Trollwoman was unmoved.

But the worst of it all was breakfast. As dawn broke, the cabin staff served breakfast. My tablets were in my satchel but by now I was so late taking them that I was frozen. I couldn’t even peel the lid off the yoghurt pot. And when a cup of hot coffee was placed on a tray, I panicked. The tremors were immediately out of control and I knew I was going to knock the drink and food onto the floor. Trollwoman continued watching the film. Eventually I caught the eye of a friend who, after a bit of gesturing and mouthing “help!” (I couldn’t speak) came to my aid. And that’s pretty much how the flight ended – with me frozen and sobbing.

In short, an absolute bloody nightmare flight. I felt diminished, degraded and humiliated.

They say that typhoons in the South China Sea are triggered by the flapping of a butterfly’s wings in Tibet. In other words small actions can have catastrophic consequences. So it was here. I don’t know for certain that everything would have been a success in my original seat. But at least I had stacked the odds in my favour.

Those of you reading this who do not have Parkinson’s may dismiss what I’ve written as hysteria or similar. You may wonder what all the fuss is about. What is this RLS and RBD? But those who do have Parkinson’s may recognise such situations.

But at least you no longer have to ask me why I hate flying. Now you know.

Long distance flying with Parkinson’s: a cautionary tale.