Those of you in the UK may have like me watched the Voice on Saturday evening, at one point I found myself paying rather close attention to Tom Jones as there was something about him that stood out to me like a sore thumb, his posture. Well, not just his posture there were other small things that have left me convinced that he is showing his 74 years and not just in his gray hair and wrinkles. Anyone like myself, who lives with tremors will have learned that sitting in certain ways, holding certain positions and so on, all help to keep the tremors under control, well that was what I saw. He was sat there doing exactly what I would have in his position, sat totally upright with his spine pushed into the back of his chair and both hands firmly on the armrests and with his hands spread and holding onto the ends of the armrests. When you sit like that everything is under control until you raise your hand and when he did, I couldn’t help but notice I was right. Until I pointed it out to Adam he hadn’t noticed anything, but he isn’t that aware of some of the games I have learned to play over the years as he likes to think.
If nerve twitches caused weight loss I would have vanished years ago, I rarely actually sit still as the nerves most damaged are in my spine, the top half of my body is almost constantly on the move. Most of the time it is a sort of gentle-ish side to side movement, but there are sudden more violent shifts, which cause me to jerk, both through almost vanish once I am pressed into a corner of the settee or sat in a high back chair. As for my hands well they are in the phasic list, they change a lot from almost nothing when not in use, to sudden violent jerks that can send things flying in different directions, but only light things like pens or cutlery, if there is any true weight I am fine. I am not sure what it is about weight that controls it, but it works, just as holding on to things tightly does. I don’t drink coffee any longer but when I did, I used a light weight china mug and spilled it with regularity, these days I drink out of a tall lead crystal glass, when full it is heavy and my hand is stable, as I drink and the weight goes down the tremors turn up, but the glass is tall enough that I don’t spill anything, tricks are great for covering problems and the longer you live with this sort of issues the more tricks you learn. When the twitch in my spine appeared about 11 years ago now, the Physio’s tried working with me and teaching me some exercises to strengthen my core. The hope was they would give me the inner bracing strength to hold myself still, it didn’t work, but it was their exercises that started to show me it could be controlled all I had to do, was brace it. Pushing my spine into a chair, or lying down doesn’t stop the internal twitching but it limits just how far my waist can actually move and that in turn means I don’t appear to, or feel as though I am on some kind of fairground ride. My life in constant motion, I believe is one of the reasons that I find even mild vertigo hard to handle at times. It is bad enough when either the room or you are moving oddly, but when they both are, well nausea is an almost guaranteed result. I did try for a while to counter the swaying and reduce the motion sickness by trying to hold my head steady, so that not just my eyes but my head was as close to spotted on a single point as I could, but it didn’t work that well, as when you don’t know which direction your spine is going to go next, knowing where to move your head to counter it, fails nearly every time.
The real problem with twitches and tremors is when the happen so randomly that you quite simply don’t stand a chance, those occasions when you just can’t get a forkful of food anywhere near your mouth as it keeps jumping back onto your plate, or worse still into your lap or onto the floor. Something that is bad enough at home but mortifying in restaurants, oddly though, having your wheelchair with you somehow removes some of the embarrassment if not all. You don’t know how much I would recommend a wheelchair to anyone with bad tremors, it gets you away with so many embarrassing moments and not just those related to food. From experience, I know what it is like to send things flying in shops, funnily enough if I was in my chair people came scurrying to help, without it I received looks that made me want to run out of the place and I was left trying to pick up the items that were now out of my reach on the floor. In fact I would recommend anyone with even a speech problem to go shopping a wheelchair as again people’s attitudes change towards you and they become patient as you try to get the words out, rather than sighing and drumming their fingers. Yes, I have had that happen as well. To be honest having a tremor of any sort, whether it is permanent or phasic, is more embarrassing than anything else, some of the antispasmodic drugs help with it, but like most drugs, they don’t actually totally remove them. But you learn the tricks like not putting your plate on your knee, where even a slight tremor in your leg might deposit on the floor, but to rest it on a thick cushion, which has the added bonus of making the distance from plate to mouth less and a greater chance of food arriving in your mouth. Time teaches us the tricks and the ways around things, but the biggest and best is to simply stop worrying about it.
It took me about a year to do so and to just accept that I would drop things, break the odd thing or feel sick sometimes. I on the whole was the person with the problem around it, not the rest of the civilised world, I very early on got used to returning withering stares and throwing in for good measure that I had MS and these things happen, even the rudest normally helped or scurried away themselves. Tremors don’t hurt or do any damage to the area affected, the can happen anywhere there are nerves, it can be so mild that although you think your nose is twitching visible when you look in the mirror it’s not, right through to your leg jumping wildly, if you like they rapid moving localised spasms and part of so many degenerative conditions, that of all the things MS can do, this is one the world sees and understands.
Please read my blog from 2 years ago today – 11/01/13 – Stupid embarrassment
Over the last few weeks, I have been having more and more problems with my bladder again. It is something that I have the solution here in the house, but I avoid using simply because it is a fiddle and strangely one thing that I have never been able to get my mind to accept……………