Parkinson's disease

Walking. Well, that that’s got worse. I used to be one for striding when I went anywhere I used to stride out. I didn’t I didn’t hang about. I wasn’t one for dawdling but now it’s a question of shuffling tends to. The right leg in particular sometimes when the when natural signal in the brains says, ‘You should you should move your leg now to walk.” The response of the leg sometimes is a second or a couple of seconds late so so I have to wait for it to work.

Another symptom which people don’t know about a lot is freezing, which is exactly what it says it is, it’s just, you’re in the middle of doing something and you stop. It’s usually for quite a good reason. If you’re trying to walk through a narrow gap between two pieces of furniture, say, or if you’re having to come upstairs, and we live in a house full of stairs, for the, what seems like the fortieth time today, you think, “Oh, hell”. You can stand at the bottom for five minutes sometimes just doing nothing and waiting to get the energy together. And getting up out of a chair is quite an effort for me now. This chair’s all right, it’s got arms, but if I’m sitting in a, in a, on a low sofa, shall we say, or on the edge of a bed it requires a sort of one-two-three-heave and up you get. That’s, that’s quite depressing, the freezing, because you think, “It’s wasting time” or, “Why am I standing still here staring at these stairs? Why don’t I climb them?” On the other hand I find when I’m in a social situation, if I’m out to lunch with somebody or, you know, at a party that invigorates me a great deal and I don’t droop and sit in a corner and freeze. It’s, the freezing is normally only happening when there’s nobody else around to see it.

The early days aren’t so bad but you don’t know what’s coming and anyway no one can tell you because it is different for everyone. But after about seven years I had to start on levodopa because the ropinirole was not enough. I literally couldn’t move. If you see me now I still go on and off my tablets. Not so much, I manage better now but I can go from being perfectly fluid to being stuck like this. I could go through doorways I never got stuck so far, touch wood, about the doorways. But I would freeze in the street in the position I was in, you know, like a statue. You know those people who stand and collect money by not moving. And I could only move if someone touched me. Touching myself wouldn’t work, someone else had to touch me and that’s difficult to do if you’re frozen because you’re standing there saying because your mouth is stiff too, you know, “Please, will you touch me.” And people are running in the opposite direction because they’re scared really, they think you’re peculiar which you are I suppose in a way.

You know when things are going wrong when they haven’t taken their tablet on time, the on and off moments and why the freezing occurs because you live with it all the time, you know what to say. “Left foot, lift your.” So that and then, it’s the thought, the hearing of the thought process and then they’ll move the left foot, right foot and then you can start the moving. You know going through a door or changing from a type of flooring with a line is always an issue with for Parkinson’s patients. 

 

They can’t change, move over a line so if there’s fabric, so if you’ve got carpet and then you’ve got wood even if it’s all completely level something in the brain triggers it and it’s very it’s like overstepping something and it just cannot correlate that it’s all the same level and that’s when those moments of freezing occur. 

I liken it to being a cartoon character, you know, when you see then run off on screen and their legs start going but they don’t go anywhere. It’s like people take walking for granted but when a normal person walks what you’re actually doing is falling over in a controlled fashion. You allow your body weight to move forward and gravity to pull your body forward and you push your legs underneath your body and that’s how you walk forward. What festination does is it slows I think it slows down it seems to slow down the response of your legs to gravity pulling your body forward. So your body falls forward. Your legs don’t get there quite in time so you have to start moving your legs faster and faster and fa..until you end up with like this almost almost falling almost walking, speeding quick little tiny steps trying to catch up and it’s like this your legs are trying to catch up with your body in moving forward. 

 

 

Like when I go out for walks I have to walk on footpaths. I can’t walk on grass because in grass you can’t see exactly what the solid surface is like because it’s covered with this layer of grass and you don’t know what you’re going to put your foot on that’s going to make you go over or fall. But walking next to the grass is good because if you do fall you fall on something soft. 

Well, my walking, my mobility has become far worse and deteriorates even now. There’s a tendency to festinate, which I believe means tipping forward and building up speed as you walk, shuffling. You are taught ‘heel and toe’ the whole time. And logically you should be able to do it. And somehow the movement, forward movement takes control. And this is where you can have your falls as you suddenly pitch forward uncontrollably. And the feet which act as brakes very well don’t work. So therefore you’re looking for somewhere with a soft landing, a sofa with a soft landing, like a sofa, clutching to a wall or a lamp post to keep you upright. But then you can stand up straight, head and eyes open and walk about 20 yards or so. But then you start to festinate again. It’s a terrible bore.

It’s just lurching, head down and dragging your feet. I suppose it is caused by the lack of co-ordination that goes with the disease anyway.

 

It started out perfectly. Then suddenly finding the mind and the arms and everything like that were going forward perfectly well but the legs weren’t. That's what it felt like. You stopped the thing by stopping the skating or walking or what ever you decided it is and starting the thing again. And if one has had a drink then perhaps that process is even slower than otherwise.

No I never thought of that. I think probably one needs to pause for a moment to get the thing going. I think if you stood upright and then went straight on as a natural course then you would be flat on your face in next to no time. But if you sort of give it a chance. You know these sort of receptors that control ones balance. I don’t know.

 

 

The motor car in the car park is as good as anything. I am sure a lot of people who have Parkinson’s disease have had that sensation.

It is, I get this, thing called festination which is, which is sort of lots of little steps basically and it’s very difficult I get stuck in doorways and things like that, And yet it’s very strange because I, it’s only open, open spaces that I can, I get this thing. If you get me in, in a, up a flight of stairs I’d be up them no problem at all because it’s this sort of queuing system where, where, and, you know, if, if, in the morning if, if someone chucked a ball at me my hand would go straight out like that. And yet if you asked me to put my arm out like that it would, it would go, like that so slow, and I could play ping pong and it would be no problem but, but ask me to, ask me to walk through a door I just get, I’d, I would get locked rigid it’s very strange.

 

There is a bit where you have to be quite tough and quite disciplined because your body forgets how it’s supposed to work. And I keep retraining it. When I’m walking I often have to resort to heel-toe, heel-toe, heel-toe as a record otherwise you put your bloody toe down before your heel and you’re on the floor before you notice.   

 

So I’ve got all sort of tape recordings I run.

 

 

I sort of chunk life up in order to get through. So if I know I’ve got a flight of steps to walk up I just instantly think, handle, I think about where the steps go on my foot. Before I had all these tape recordings I was all over the place. But they help, they keep you straight.

…one of the things that helps me walk better than most people with Parkinson’s and deal with it better is that in my mind I have two different ways of walking. Right, I think one of the things that happens when you walk is it’s something that you do as part you do maybe twenty, thirty million times in a life you take a step. So you don’t think about it at all. But you have this short circuited system. You don’t need to think about it so the system the system that propels you when you’re walking becomes shorter and shorter and shorter because it doesn’t need to lots of processing to think about it. 

 

But when I was eighteen I learned a different way of walking. I joined the army and I had to learn how to march which although it looks similar to walking, it’s actually different. So I have two different ways of walking in my brain so what I do is I employ marching as a means of walking better than I would walk if I just casually strolled along. 

 

And the two techniques I use are flagstones to keep myself to keep my cadence and and stride correct. Cadence is the speed at which you take paces and stride is the length of your pace. So I use flagstones to keep the length of my pace correct and I have a brass band playing my head to keep my cadence correct.

Because as a soldier I’m very used to marching to a drum or a brass band and when I want to march to get somewhere not forcibly but, you know, deliberately walk properly like when I walked with you from the station I’m listening I’m in my head I’m keeping pace with a drum like from my walking. And that’s what I do I march really. And the other thing about marching as well is it also helps me to keep my arms swinging because if you don’t think about it my arms stop swinging and or swings when it shouldn’t do and things like that. But no, it doesn’t swing like a normal person’s arm.