Tremor and loss of physical control in Parkinson's disease
Often, the first symptoms of Parkinson’s disease to appear are in the upper limbs. People had discovered there were things that they had always done without a second thought, like opening a door or combing their hair, that for some reason they now have difficulty doing or may not be able to do at all. What they can’t understand is why they can no longer do them. As Natalia described it, “To move papers around, the message doesn’t get to my hands and my brain doesn’t give the message what to do.” Khadim said it felt as though someone was pulling at his hand stopping him from moving it.
Cohabiting, no children. Senior Operating department practitioner (NHS).
No, well Parkinson’s is due to the fact that the brain cells that produce dopamine in your brain die off for some unknown reason and it’s when the level drops to below twenty per cent that you start getting symptoms so you have to have the dopamine replaced. And dopamine plays an important part in fluid movements with moving the muscle, it’s the transmitter, neurotransmitter that makes you move nice and slowly. Because another of my symptoms is I’ve lost, on the left side, I’ve lost my co-ordination and dexterity. For example, in the shower washing my hair, I can’t go like that and scrub really hard with my hand both hands. This one doesn’t want to do it. It has improved somewhat. It’s still not the same as this side but it’s better than it was. But that was really weird, I couldn’t do things bilaterally at the same time like scratching the dog’s ears behind his ears, and things like that. I couldn’t do it because this hand doesn’t want to do it. It was even worse than that before I went on the medication.
It’s not like feeling numb.
No, not at all. Everything feels normal. It’s just that it just won’t do it and you just want to say, “Well, why won’t you do it? Come on.” It’s really strange, no pain, no anything it just doesn’t want to do it even though your brain is telling it to do it. And it’s still not the same as the right hand side but it’s better than it was with the medication.
Dressing and eating are daily problems, as are many other things for which we rely on our hands and arms. Previously simple tasks such as cutting up food, putting on socks, tying shoe laces or doing up buttons now took much longer to do and required a great deal of concentration.
John' Yes. Yes. We’ve put a sort of cord attached to one leg of the bed and brought it over onto the mattress and I attempt to pull myself around. It is not much of an improvement. It is these, what do you call the cover on the bed?
John' Duvet. Yes good old French word, I should know that. Anyway the duvet tends to impede your turning around. Because you carry it with you and it brings cold air onto you. So actually it is …
Julie' And taking off jumpers.
John' Oh yes. Dressing is a big context in which I am slow. I take what? Twenty minutes I suppose to get dressed or undressed. We tend to have a procedure where Julie rolls up my jumper …
Julie' That is all I have to do for you really. Just help him with the dressing.
Age at interview:
Age at diagnosis:
Adult education, married 3 children.
You seem to have forgotten how to do things, and some things like opening tins with those pulls, you, you just haven't got the strength to do it. I know how, you know, of course I know how to do that but there are quite a lot of household jobs, which I find difficult to have the strength to do. I find it difficult to put on a coat and that's awkward if you're out on your own, if you go to something on your own and you want, it's hot inside and you want, if you take your coat off and then when it's time to go you can't put it on again and that's a nuisance. That's, that’s always difficult, I don't know that, that's something to do with control of the arms or strength in the, strength in the arms I think.
What about writing?
Well I did notice when, before I had the Madopar my writing got very, very small which it never had been, it had always been rather big and scrawly and now my writing is just bad. It's, it's not always small, but and I, I tell myself to do it big and decently and but it, I don't control it the way I would like to control it, and things like sewing are difficult.
Difficult or impossible?
Well, I, I hardly, I used to do not very fine embroidery but I used to do, well, you know, wool gros point and I think I would find that impossible, well not quite impossible but it would, it wouldn't work. I mean, I can still sew on a button if I absolutely have to and do.
Age at interview:
Widow, 2 children.
His way of dealing with things wherever possible was to laugh at them, to make entertainment out of them which is why he wrote songs about them. But he was also frustrated and I think as carer you don’t know and you can’t get right the whole time when to whiz in and make something happen faster because that’s nice. Or to say, “No, I am not at your beck and call. You can do that. There is no deadline you can do it now.” And inevitably you regret not having done some of the things that would have made more time available for work or just enjoying life instead of leaving somebody taking too long to dress. On the other hand it seemed right to say, “Well, you can dress yourself unless you specifically say, ‘I can’t do this.’ Do as much as you can yourself and then I’ll help you.”
Hydrotherapy offers people with PD an opportunity to relax. But swimming can be affected by the defective action in one upper limb. Elaine remembered an episode in a swimming pool before she realised she had PD, when she suddenly found that she could not reach out to touch the side of the pool. Fred said that for him being in water offered a release from all his problems with walking. On the other hand he, and several others, discovered that they were unable to swim in a straight line but found they went round in circles.
I do a lot of swimming. I love swimming because it’s a safe exercise because I can’t fall. And it’s the most pain free exercise I do. I do a lot of exercise I don’t, I like to keep myself fit, but it’s the most pain free exercise I can do because you can swimming is one of those things where you can put as much or as little effort in as you want. You can lie on your back and just flip your legs a bit and float and that’s fine or you can swim purposefully and forcefully if you want. When I go swimming I always make sure I tell the lifeguard or the attendant that I’m there and that I’ve got Parkinson’s disease. There probably won’t be a problem but if I do get a problem what I will do is I put my hand up in the air and that, you know, just the warn them that I am there. But I try to swim down the left hand side of the pool because my left side is weaker than my right side.
If I was going to veer off course I would veer into the side of the pool rather than veering out of away from the side of the pool. So, you know, but swimming is good. I tried it in the I swim in the sea a lot when we go on holiday but, again, I don’t swim out. I what it is I walk out and swim along the beach and I always swim on my left side facing the beach so that if I do go in a circle, and I’ve tried it I’ve tried swimming for like a minute with my eyes closed in the sea and I actually go round in a circle because of the difference in power on one side than the other. Even if I try harder with my left hand side it just doesn’t work out that way. But swimming is good. I would recommend it to anybody.
Several people described problems they had had at supermarket checkouts when their fingers just wouldn’t do what they told them to do. In this situation things were made worse because any stress or pressure seemed to increase the clumsiness.
Married, 2 adult children, working full time as a technical author.
Yes yes there are things like experiences such as going to a supermarket, which is a prime one for me. Bearing in mind that your tactile skills can be affected, they’re usually affected by Parkinson’s, your fingers are not quite so nimble as they used to be. When you get to a checkout, you can get into a situation where you start to panic a little bit because you can’t get money out of your wallet, you can’t get your credit cards out. And then this is commonly what people call panic attacks. But really it’s, it’s often a case of your own perception of panic. It’s not shared by the people behind you and you sort of think, you think, you’re aware of how you feel inside, but people that are behind you, just think that you’re just somebody sorting out their wallet, you know. So there are ways around it. Things like, the type of things that I do now is I arrange things like credit cards and bank cards and things like that, I put them in places that they’re in the front of the wallet, places I get to them. If I have to get money out of a purse, if you’ve got like a sort of pouch type thing you can get into it easier. And if you’re given change and your cards back and you can’t get them into your wallet, you can always take them away from the area and just put them on, go to a table or a chair that is nearby and just put them in. Things like that.
Sometimes the same type of things that you can get problems with dressing and undressing but hopefully if you’ve got a partner they can help you with that. And there are ways around helping yourself as well if you, for instance, if you, unless you’ve really got a preference for tie up shoes with laces, you don’t have to have tie up shoes with laces you can have Velcro or elasticated fitting. I’m not trying to conjure up too bad a picture here. It’s just these little things. They are just little things. They are more irritations than some really big thing in your life. It’s just things that you have to, you have to sort of just deal with in different ways and so it’s lateral thinking sometimes.
Tremor may occur at the same time as the sense that your arm is no longer obeying your instructions as described above, or it may occur alone.
But when I was working at the bakery before I was diagnosed, if somebody was off I had to step in to do one of the worker’s jobs and one of the things was packing into bread into trays. Now we don’t just pick up these are coming off loads of bread coming off one a second off the production line. So you’ve really got to pick them up with your hands, throw them from one hand to the other, and put them in the tray. So you’re picking off of a conveyor belt, throw it to other hand, put it in the tray and it’s one a second. It’s a really tough job. Now when I first started at the bakery I could do that. I was probably one of the quickest at doing it, you know, but when it was coming closer to me being diagnosed I had when I had to stand in for somebody else I found it really, really quite difficult to cope with that. To get the co-ordination right to catch it in one hand and I was, you know, throwing them over the top, throwing them over my shoulder. And occasionally, not all the time but, you know what I mean, it was just becoming more and more difficult to co-ordinate that action. So I don’t think I would be able to very effectively catch anything with my right.
One of the major problems I had at first was the fact that I’m left side affected mostly and I’m left handed so I’ve had to learn to do lots of things right handed that I could never would never have dreamed of being able to do right handed before. About the only thing I can’t do right handed is to actually write properly but everything else, tin openers, scissors all the things that I’d never tried before I can now do right handed. So you again you just have to learn to do find another way to do what it is you want to do to achieve it.
I mean they say silly things like stirring tea when if you’ve put sugar in learning to stir it up. If I try to stir with my left hand I end up sloshing the tea all over the place so I what I do is I don’t try to stir, I just hold the spoon and let my tremor stir it for me. And it sounds silly but I can because the tremor in my hand will make the spoon wag about in the cup but if I try to do it deliberately I wouldn’t be able to do it. And that it’s just a silly thing but that’s one way I’ve found of stirring tea.
Tremor is usually what is known as resting tremor but it may only come on during activity such as reaching out for something. Tremor disappears during sleep. Rex noticed his tremor during the night - it came on each time he moved and lasted for a few minutes. Keith’s tremor can sometimes be so vigorous that it shakes his whole body.
I think probably it controls my tremors and I mean the tremors is the one, one area where I feel really, really self-conscious about having Parkinson’s, when the tremors starts I feel it’s, then that I, everybody notices it. You know my family will say, “Och, no they don’t.” But, I feel that they do and if it’s really bad I just won’t go out at all, if it’s like that. And the Ropinirole does help to control the tremors. I mean, I have on and off periods with the medication but most of the time unless I’m very tired or very stressed my Ropinarole normally controls the tremors. So it helps, it gives me the confidence to, to go about doing things, that way.
Elaine’s tremor occurred at rest, and since it meant that the muscles were repeatedly contracting and relaxing this was both exhausting and painful. It stopped when she deliberately moved her arm. Other people could deal with their tremor by sitting on their hands, or lying on them when they were in bed. Stephen used to have to sit on his hands to keep them still. Geraldine would shove her hands into her pockets or sit on them or hang on to the straps of her rucksack. Tom found that if he pressed on a computer key more than once he would end up not able to stop pressing until he used his other hand to pull his finger off the keyboard. Ann holds a conker in her pocket while out walking which helps to ease the tenseness and ache she has in her hand.
Some people joked that they could make use of their tremor; David said he could when stirring his tea, both Tom and Wendy said they didn’t need an electric toothbrush as the tremor did that for them.
In most cases Parkinson’s medications work very well for tremor so that it stopped being a problem once treatment was started. Usually, after some time, the tremor would return and the dose of medication had to be increased to control them. Some people however had had less success in getting their tremor controlled. Many noticed that the tremor was worse when they felt stressed.
Married, adult children, retired principal lecturer.
The tremor seems to be the biggest problem. The tremor seems to be constant and sometimes it’s quite vigorous, so vigorous that, you know, it’ll shake my whole body. And if I’m trying to write, if I put anything on the table and my hands, left hand is on the table, it shakes the table. So that’s one of the problems. But funnily enough it seems to be reduced if I’m working in the garden. I don’t notice it quite as much.
If I wake up at night I find that my arm is shaking like mad and I don’t know whether it’s, that’s started and woken me up or it’s just the fact is I’ve woken up.
Each person with Parkinson’s disease has a slightly differently experience of how movement is affected. Humphrey found that he couldn’t cope with the fine finger movements on the saxophone, but that when he was keeping the beat on the bass guitar he would feel increasingly relaxed and competent, ending the session feeling as though he had nothing the matter with him. Typing however had become slow and difficult. He had to buy voice recognition software for his computer so he no longer needed to write or type.
Many people had noticed that their writing had changed. It would become increasingly small. Rachel described how she tried to tell herself to write properly and it just didn’t happen. Philip said that it took him so long to write now that taking down telephone messages was hopeless. Brian had noticed early on that he could not form a satisfactory ‘w’. Since Brian’s problems with movement are confined to one side he found himself questioning why Parkinson’s symptoms often affect only one side. Unfortunately there seem to be no helpful answers to this question.
It’s basically strengthwise, physically I’m as strong as I ever was. It’s the controlling that is the problem. And I’ve always had a very sort of flowing wild hand when I’m writing, but of course this is one of the, one of the symptoms that did show itself. I can still write legibly providing you’re willing to wait, a page a week. Apart from that it’s again some numbness working on the telephones, when I spoke with you. I’d love to be able to get my memory back and speech back. So Parkinson’s isn’t at this point in time my major hindrance. It’s more hearing.
Age at interview:
Age at diagnosis:
She managed her own bank account. One day, I think she wrote a cheque out as we did in those days and the bank sent it back because they couldn’t recognise the signature and it’s little things like that that the patient or the individual and the carer’s are not aware of so we had to go to the bank and, these are the new signatures. And she had to rewrite them because her writing had deteriorated. From a script and the lady who would just write flowingly in lovely, you know, copperplate writing to something that probably a toddler would do now but hardly recognisable, indecipherable. The other thing we noticed was a pen like this with a very fine tip was very useful for.