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Parkinson's disease

Parkinson’s disease and problems with movement

I still know how to do things… but my body won’t obey.

For many people an early and very confusing symptom of Parkinson’s disease is the discovery that some part of their body no longer does what they expect it to.

 

Eddie says the message he sends to his leg seems to be delayed.

Eddie says the message he sends to his leg seems to be delayed.

Age at interview: 83
Sex: Male
Age at diagnosis: 80
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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.
 
Well I, it’s a question of it’s a mental question to a degree. The the thing is walking is an automatic movement and you don’t normally think about it. But the point is that when you’ve got a problem you stop and think about it so I think I’m getting a bit lazy with shuffling a bit than I was so I try to stride out a bit more. So I try and counter it but does doesn’t always work but I mean I can walk from here to my flat quite comfortably but it takes me a lot longer than it used to because of my steps are shorter. 
 

While he was running one of Rafa's legs stopped working without any warning.

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While he was running one of Rafa's legs stopped working without any warning.

Age at interview: 51
Sex: Male
Age at diagnosis: 49
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I used to do a lot of running and, I still do the odd bit of running, but I started noticing about two and a half years ago, maybe a bit longer, that very occasionally when I was running after say two to three miles my right leg started to stumble. And that would go away so I just ignored it and then the pattern over a number of months became more predictable. And I thought it had something to do with the camber of the road being of a particular route or something like that. But it became very particularly accurate actually. It was two miles into the run my right foot wouldn’t lift up properly and became more pronounced and sometimes it forced me to stop. I continued to ignore this and until it became really pronounced and it was really the sensation was as if your leg doesn’t know what to do. You know what to do, you know you can do it but the leg doesn’t want to co-operate. And the symptoms would pass. Then later it became to be coincided with my right arm being pulled into my body as if it as if it was wanted move to the inside, peculiar sensation again. 
Other people found that their way of walking had changed, sometimes without them noticing. Their steps have become shorter and they may be failing to lift their feet up. Fred says that he was not aware that he was shuffling until other people pointed it out. Khadim described how he felt there was always someone behind him with strings that were attached to his legs, so that as he was trying to go forward something pulled him back.
 
As the condition progresses a symptom known as freezing may develop. It is similar to what Rafi experienced but may occur at any time and in all sorts of different situations. Freezing is not a symptom experienced by all people with PD. For those who get it, it is usually possible to find a medication regimen to help. But, as many of the people we interviewed described, there were times and particular situations in which it could occur and cause embarrassment, inconvenience and even danger. Freezing usually occurs at the beginning of a movement, getting up from a chair, starting to walk, starting again after stopping.
 
While some people said they had learned to expect freezing to occur in particular situations not everyone responded to the same stresses. Several people mentioned that it was much more likely to happen when they were in a small confined space than when out in the open. Others mentioned stressful situations. Rachel was particularly scared of it happening when she was trying to get on or off a train. Something equivalent to freezing would happen to her when she had to put a coat on in a hurry. Mari remembered how Humphrey had once frozen on a traffic island. Freezing was more likely to happen when the levels of anti-Parkinson’s medication were becoming low so that Jean said it would happen in the night when she got out of bed to go to the loo and several people mentioned it happening if they were late taking their medication.
 

Humphrey describes situations when he often freezes and wonders why it doesn’t happen at other...

Humphrey describes situations when he often freezes and wonders why it doesn’t happen at other...

Age at interview: 57
Sex: Male
Age at diagnosis: 54
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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.
 

Geraldine describes freezing while out in the street and why it is a problem getting herself...

Geraldine describes freezing while out in the street and why it is a problem getting herself...

Age at interview: 60
Sex: Female
Age at diagnosis: 42
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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.
 

Isabelle understood why her mother would sometimes freeze in doorways and describes how she would...

Isabelle understood why her mother would sometimes freeze in doorways and describes how she would...

Age at interview: 60
Sex: Female
Age at diagnosis: 44
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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. 
Different from freezing, but often associated with it is another movement disorder known as festination. In festination the steps become smaller and smaller and faster and faster and the only way to come to a halt is to aim for an obstacle and virtually crash into it. If no suitable object presents itself there is serious danger of falling forwards. For someone with Parkinson’s level ground can be just as problematic as a hill. Surprisingly several people mentioned that although they had great difficulty walking on level ground, going up stairs was not a problem.
 

David describes festination, what provokes it and what he needs to do to avoid it.

David describes festination, what provokes it and what he needs to do to avoid it.

Age at interview: 54
Sex: Male
Age at diagnosis: 48
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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. 
 
And when when does this happen for you?

 

As each drug phase starts to go to go down and it happens more and more then. And at other times like stressful times, like I discussed with you earlier on about being too hot, the weather too hot, the weather too cold or just a generally stressful time will. I think what it does it takes my mind away from concentrating on what I’m supposed to be doing because although you don’t have to think about walking, I have to think about walking when I’m walking. So things that distract me from thinking about what I’m supposed to be doing can cause that to happen. Like quite often when I’m walking with somebody if we step down a curb, if I’m trying to talk, I step down the curb and not.. my body doesn’t respond to stepping down a curb. So I don’t know if you’ve ever done it where you’ve stepped down a step and not realised it was there and you hit the floor with a jar because you’ve not bent your knee or whatever and not ready for that sudden stop at the bottom. And then that happens a lot as well so I have to think carefully about walking. 
 
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. 
 

Fred describes what he has been told to do to avoid festination.

Fred describes what he has been told to do to avoid festination.

Age at interview: 70
Sex: Male
Age at diagnosis: 65
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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.
 

Philip describes some of the situations where he has experienced festination and some of the...

Philip describes some of the situations where he has experienced festination and some of the...

Age at interview: 58
Sex: Male
Age at diagnosis: 54
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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.

 

And the later it got at night. I remember going to parties. Because I went on going to parties. And people.. sort of going out to get into the car and going down a slight hill and not being able to stop when I got to the bottom. And everyone thought it was frightfully funny and even I thought …. And there it was. That is what I was doing.
 
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.

 

You started all right and eventually you were going with your arms held out rather like.. the family called it a jet pilot. If you could stop and stand upright you could set off again and it would after a time it would go back to sort of skating along.
 
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.
 
I don’t know why it seems to happen in car parks quite a lot. I don’t know why. My children are very keen on Polo and I remember going from one end of the park to the other simply by pushing myself from car to car. That was a very hot day when there had probably been a little too much excitement. I remember that quite well. It seemed the only thing to do was to push yourself back up, stand up straight then you could set off again and then you would do it again.
 
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.

 

Top of the banisters when I come out of the bedroom. I am always going there, I am going too fast by the time I arrive there. That sort of thing.

 

There are lots of times, most of the times, when I am on the tablets and the regime is in place that I have no problem whatsoever. But if I am very tired, have forgotten to take the pill or it is very hot or I have been talking to somebody for a long time. You know when it is going to happen by and large and you can feel when it is going to happen.
 

Tom explains the difference for him between getting stuck in doorways and going up stairs or...

Tom explains the difference for him between getting stuck in doorways and going up stairs or...

Age at interview: 40
Sex: Male
Age at diagnosis: 27
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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.
 

Karen describes various problems with movement which occur on ‘bad days’.

Karen describes various problems with movement which occur on ‘bad days’.

Age at interview: 45
Sex: Female
Age at diagnosis: 39
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What does a bad day involve?
 
A bad day is when I struggle to get out of bed on a morning, my tablets don’t kick in properly, so I have a lot of freezing and festination, this is where I basically it’s like your feet stick to the floor and you can’t lift them. You’re in risk of falling over because your body wants to move forward but your feet don’t want to come with you. Festination is when you just literally stop and cannot move and then you do very little sort of running steps on the spot which are totally out of control and that’s when you often lose your balance and fall over. I then hopefully have a period of time where my tablets are working quite well and then I tend to rush round doing things I want to do which is probably not always a good thing, and then I start to get what they call dyskinesia, and that is severe involuntary movements which are quite painful because they’re muscle spasms and also they really do tire you out. And also of course it’s very visual so you become very conscious of it when you’re out with other people and the more you try to stop it because you’re conscious, the worse it gets. And then the cycle starts all over again, the tablet starts to wear off, I then start to struggle with movements, all my movements are very slow. I have to think twice as hard to do anything that I do. Movements that would just come naturally to most people, just simple things like writing, putting a key in the door, chopping vegetables, people just do it, oh and walking, people just do it they don’t have to think about it. But I have to think about what I’m doing which is quite a tiring thing and it’s like that most of the time.
Even when they had not actually experienced festination or freezing many people described having lost their instinctive understanding of how to walk. In addition to problems with their legs, many people with Parkinson’s disease also fail to swing their arms in the way that usually accompanies walking. Peter explained how he felt it had become difficult to co-ordinate between the brain and movement before he moved, he had always taken such things for granted.
 
Being in bed could be particularly disabling if they had difficulty starting a movement. Rachel describes herself as a beached whale in bed requiring a special contraption which helps her to pull herself up and out. John and Julie had devised a cord for him to pull on to get him up. One person said that the ironic side of this was that when they were just lying in bed, not trying to move they could imagine that they were normal.
 
Several people described how they had overcome their problems with walking. Kevin described how, once he understood that his steps kept getting smaller and that he was not swinging one of his arms, he made a conscious effort to overcome these difficulties. Geraldine described wearing a rucksack to encourage her to stand up straight and sometimes used a scooter to get around, balancing on the good foot, scooting with the bad one. Humphrey would count rhythmically to persuade himself to move.
 

Sharon has created a ‘tape recorder in her head' which reminds her to keep moving.

Sharon has created a ‘tape recorder in her head' which reminds her to keep moving.

Age at interview: 57
Sex: Female
Age at diagnosis: 49
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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.
 
Where, did someone introduce those to you?
 
I don’t know if somebody introduced them to me. I don’t remember. I don’t think so. I think they’re a hangover from the time when I wasn’t telling anybody and I’d got to walk from here to there in the best way possible when someone was walking along side me. And I just used to count the steps, 10 at a time, heel-toe, heel-toe. And finding excuses, up and then do another ten.

 

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.
 

David resorted to marching methods he had been taught in the army.

David resorted to marching methods he had been taught in the army.

Age at interview: 54
Sex: Male
Age at diagnosis: 48
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…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. 
Finally, Tom demonstrated how even when he was most disabled by freezing and festination having delayed taking his medication, he had ways of making himself walk and even carry out feats of agility far greater than most people could dream of.
 

Short section on film of Tom playing with a golf club and then with a football.

Short section on film of Tom playing with a golf club and then with a football.

Age at interview: 40
Sex: Male
Age at diagnosis: 27
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Tom playing with a golf club and then with a football.

Last reviewed May 2017.
Last updated May 2017.

 

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