Embarrassing symptoms of Parkinson’s disease

Some symptoms that may occur in people with Parkinson’s disease are not typical of it and so people noticing them may misunderstand them. These symptoms can be particularly embarrassing in social situations where other people witness their discomfort. They distress some people so much that they avoid company other than close friends or family. Most of these symptoms are caused by Parkinson’s but some are side effects of the medicines used to treat it. All the symptoms tend to fluctuate in relation to the medication, and some people had learnt to adjust their medicine regime to minimise these effects.

Eating can cause embarrassment in several ways. Both tremor and dyskinesia (involuntary muscle movement) affect the physical job of cutting up food and directing it into the mouth (this is discussed in Tremor and loss of physical control in Parkinson’s disease). Several people had a problem with a piece of steak or chicken that might fly off the plate as they tried to cut it up, or they had a choking fit if they unwisely took too big a piece into their mouth. Humphrey disliked eating out with friends because he tended to drop things.

Humphrey would have preferred to be able to cut his food with scissors rather than evoke pity…

Age at interview 57

Gender Male

Age at diagnosis 54

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I think a big part of it is trying to avoid peoples pity, and people very nicely are keen to help. But sometimes you can land up sitting next to somebody at a dinner party, it happened to me at a wedding reception the other day, an old friend who was, you know, clearly upset when I picked up a wine bottle myself to fill my glass. “Let me do it for you”. I wouldn’t mind having my food cut up discreetly occasionally because actually battling with chicken breasts, why are there so many chicken breasts these days? hacking away at this stuff. And it would be quite nice to actually have a prior arrangement with the kitchen or to bring a large pair of scissors with you on outings but be seen cutting up the chicken that way. And the general sort of feeling that you’re being regarded as a ‘cripple, awful word.

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Helen finds it embarrassing to have her husband cut food up for her, so tries to order food that…

Age at interview 39

Gender Female

Age at diagnosis 33

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If I’m at a restaurant I’m just very careful what I order. Usually pasta, something soft because this is my sawing hand so and I can’t I can’t slice bread or, so either my husband used to cut it up a lot for me but I find that embarrassing really. So I just don’t eat food that I have to cut. You just, again it’s about pre-thinking about what you’re doing and just making life simpler for myself.

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It is important for the food to be cut up properly not only to get it into the mouth, but also to be able to manage it in the mouth. Fred said that because chewing and swallowing are difficult he tends to get tired and impatient which is what makes him liable to choke. When eating out, some people felt that others watched them and perceived them as having a disability.

Episodes of choking embarrass Fred and alarm those around him.

Age at interview 70

Gender Male

Age at diagnosis 65

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I enjoy food. I eat very slowly. My left hand cannot really take a fork. My left hand, when it exerts pressure, does wobble about and sprays food all over people. So I have to be careful. I tend to eat like the Americans do, with the right hand and a fork. It takes me a long time. There’s a danger if I don’t chew, cut up and chew things, meat especially, I will choke. And there’s one or two episodes of choking. And it produces great alarm around the table and great embarrassment to me. My mouth, which has lost the power of control to a certain extent, and then drooling is a problem, can be a problem. It means that I tend to spill things down my front at lunch or tea or supper just completely involuntarily. I now wear an apron and a bib a la Francaise and it keeps my shirts relatively clean. But it’s, it’s a problem, which I wouldn’t disguise, but I manage to keep up with most people.

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Sharon can eat OK if she times her medication to fit in with mealtimes. If she doesnt she has…

Age at interview 57

Gender Female

Age at diagnosis 49

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Eating’s a nightmare. Simply because it’s so variable. Sometimes I can sit down and eat a meal perfectly normallyI try and make sure that I’m not eating a meal at the end of the tablets that, so I have one set of tablets before breakfast and one before lunch and one before dinner. Well, I try and eat my dinner early so it is before dinner. Or make the afternoon one stretch out. Because it’s nice to sit down and enjoy a meal and if you’re all tensed up you can’t. The problem, the food goes down but it doesn’t stay down sometimes.It just is a nuisance I have to be careful that I drink as well as I eat. It is all mixed up the eating bit.Physically sometimes it’s difficult to actually make my tongue and my mouth and my swallowing work.

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Drooling is something several people experienced. Brian’s drooling felt humiliating. He said he could feel the excess salivation coming on, but could not swallow it satisfactorily, and constantly needed to wipe his mouth to prevent it. Gina found that food would sometimes drop out of her mouth while she was eating, but had recently been started on a new tablet which she hoped was going to stop her drooling. Ruth said she did produce more saliva than before, and had found it helped to chew gum. Sharon, who didn’t suffer from drooling, said that if she had had this problem she would not want to eat in front of other people.
Another embarrassing symptom which many people with Parkinson’s suffer is incontinence. For many this is simply a question of not reaching the lavatory quickly enough. Unfortunately for some people this was more than just a bit of a leak. Stephen’s “whole bladder seemed to suddenly empty itself”. To his own and his doctors’ surprise, this problem disappeared after his Deep Brain Stimulation (DBS) operation.
Before Joe had his DBS operation he could not get himself out of bed at night and since he needed to pass urine several times he had had to use a bottle at night. During the day incontinence was often a problem because he just couldn’t get to the loo in time. For Brian, who was taking a diuretic, the problem was made worse because he needed to pass urine much more often. Though he had a marvellous chair which would raise him to a vertical position and tip him out, it often wasn’t quick enough. For one man the occasional accident was seen as less upsetting than the prospect of wearing protective clothing.

John was not convinced that his urgency was just caused by PD. But reaching the toilet in time…

Age at interview 75

Gender Male

Age at diagnosis 67

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Julie That is another symptom that you probably didn’t mention. I don’t know if you want to go into details about that.
John’ What is that?
Julie Well because of the frequency that you need to go to the toilet and because you are very slow at undoing various clothes, sometimes we have accidents and that is due to the Parkinson’s because you can’t you know get to the toilet quickly enough.
John’ Well no, I wouldn’t say it was due to the Parkinson’s. It is due to the prostate.
Julie Well it is the two together isn’t it. It is the two together.

Have you had any of your clothes adapted in any way?

Julie Yes. I have cut his shirts like this so he doesn’t have to fumble with the shirts. Cut that away.
John’ That works very well. I mean we are being over dramatic. I mean it is a question of going to the lavatory three times during the night. I don’t know any male who doesn’t do it.
Julie That is right, everybody seems to be …
John’ Without Parkinsons.
Julie Yes.
John’ So I think we have done reasonably well to control that.
Julie So I cut away the shirts and we shortened the vests.

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Several people had problems with constipation. Geraldine believed it to be caused by the Parkinson’s disease though it is also known to be an effect of some of the drugs used. Her abdominal pain and distension fluctuated during the course of the day depending on the timing of her medication.

Geraldine believes that everybody with PD has to take laxatives every day.

Age at interview 60

Gender Female

Age at diagnosis 42

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Constipation is a big side-effect of many of the pills. And that’s deeply unpleasant in it’s own right, you know, I think that probably gives me more pain than anything else. Everyone probably with Parkinson’s disease has to take laxatives every day because, you know, your muscles are controlled by nerves and so your colon is not pushing things down as fast as they do. Well, that then leads to bloating. So I always wear elasticated waisted dresses or trousers because one minute I can look nine months pregnant and the next minute I can look like a bean pole, you know.

And you said your tummy sticks out.

Yes, look sideways on. I usually have a not dead flat stomach but I’m pretty skinny and that that will go even bigger sometimes. And it’s so uncomfortable. it’s wind I guess because you’re not digesting properly. Because your colon is muscular and the nerves are not making the muscles work properly.

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Some people described occasions when they had become stuck in the bath which was liable to be embarrassing, especially when they were away from home. Sharon admitted that getting out of the bath is a tedious process, getting over and up onto her knees, but she has resisted having a hand rail installed – she feels that is ‘too in your face’. Philip said it depended on whether he had taken his medication at the right time, but he occasionally had to be pulled out of the bath.

Brian got stuck in the bath at his sister-in-laws house.

Age at interview 77

Gender Male

Age at diagnosis 63

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I can’t bathe, not really very safely. it’s odd, I, I had a bath at my sister-in-laws last month, I, I couldn’t get out, I couldn’t get up.

What did you do?

I eventually found a way of dong it. My wife was there. I was sending her next door to fetch a couple, a couple of men. I managed to turn, I managed to turn over so, to push up. But since, we’ve now got a spare grab rail which you can attach and take off. It, it works with a vacuum. So.

So you can, you can take it away with you?

Yes, that’s another thing that, grab rails. Friends’ houses don’t have grab rails.

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Participating in social situations can be difficult. People with Parkinson’s disease tend to fall asleep suddenly, unexpectedly and in inappropriate situations. This is usually due to their medication

Kevin finds it embarrassing if he is overcome by sleepiness during a meeting at work. He finds he…

Age at interview 58

Gender Male

Age at diagnosis 56

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The main affect that I have is the side effects of the tablets, which I’ve always had on all the drugs that I’ve taken, which is tiredness. About an hour to an hour and a half after taking the drugs, the drugs that I’m taking, I get this deep yawning session for about fifteen minutes where I’m yawning my head off and, tears stream out my eyes. And round about four oclock in the afternoon I quite often feel like I really, really need to go and have some sleep. And after about half an hour, I feel okay again. So after each, each, I take tablets three times a day, about an hour after each one I get this yawny, yawning session. Real tired feeling, watery eyes. That’s the way it affects me.

Whenever you go to the doctor or the specialist and you say, I’ve got this symptom, that symptom They, they seem to quite easily, this is not a criticism but it seems that a lot of these symptoms that you can have in your body are attributed to, to Parkinson’s. Sometimes I think they say it if they don’t know what the problem is, you know, let’s blame Parkinson’s. But that’s a harsh thing to say, I don’t really mean it in a harsh way. But that’s the main problem that I have at the moment is, is tiredness and sleepiness. I was in a meeting yesterday, a team meeting at work, and my boss was presenting and I could hardly keep my eyes open. You know, I know that can happen in meetings but this was ridiculous because I had to walk out the room and get a coffee, you know, it’s a bit embarrassing.

It must be difficult because if you’re taking it three times a day, you almost have to plan what you’re doing after that.

That’s right. That’s true but it happens more if I’m sitting at a desk working. If I was to be, for example, putting some shelves up in the house or digging the garden it seems to pass easier. it’s more to do with sitting still and particularly reading or, a book or a screen, seems to, that seem to be the time when it, you know, takes a grip. So it, so the recommendation to anybody else would be to keep moving, keep active.

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Geraldine finds her eyes tend to close involuntarily. Her friend, however, who also had PD has…

Age at interview 60

Gender Female

Age at diagnosis 42

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I get tired but my friend down the road he, I people think I’m falling asleep because my my eyelids like now I can’t keep them open very easily. I either sort of stare and force them open or speak with them closed. But my friend up the road does fall asleep.

I he we went to see the lawyer there doing some stuff to the outside of the the green here and if affects our houses so he went to see a lawyer to take legal advice, three of us, and he sat in the middle of me and other man who came, and he fell asleep the whole time we were at the lawyers. And his wife said he falls asleep at the dinner table and his face goes down in his food when she’s not looking, you know. I think that’s a matter of getting your medication right actually. But it can make you drowsy, you know, they all they all affect your liver, they all make you anxious, they all have drowsiness, they all impair your functioning.

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Geraldine mentioned that her eyes had a way of closing even while she was in the middle of a conversation. For Fred this was a recent but distressing new symptom.

Recently Fred has found his eyes are closed involuntarily most of the time, though if he makes an…

Age at interview 70

Gender Male

Age at diagnosis 65

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Well, this is a relatively new symptom. I don’t know what’s causing it. I haven’t asked. But my eyelids tend to close down. That’s very awkward because people think I’m going to sleep. I’ m not in fact. It may be something to do with the light. I doubt it. There’s not much light today. It may be something to do with concentration, the effort to concentrate the eye. I’ve no idea.

Do they just close of their own, of their own accord?

Well, I have to…

You don’t think, Oh, it would be nice to have my eyes closed no?

Well, there’s certainly that. But my pilates teacher says I must keep my eyes open for the sense of balance and there’s no voluntary action closes the eyes as I’m doing now. it’s very much involuntary. But I appreciate how rude this must seem to some people, but it helps me say what I want to say and concentrate, I believe.

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The ‘mask’ that is the expressionless face, typical of many people with Parkinson’s, probably distresses the people who have to live with it more than it embarrasses the person who has it. It tends to be the position the face falls into when not actively doing something else. Lack of facial expression can be hard for the family.

Misunderstandings can arise where people think the person is uninterested or cross. Both Fred and Philip described how their doctors could diagnose their condition just by looking at their faces. Fred when asked if he had always been ‘po faced’ said it was something he had not been aware of. Philip thought that the change in his expression, or rather his loss of expressiveness, must not have been apparent to his friends and he certainly had not noticed it himself.

Mari described the problems for the family who have to live with the Parkinsons disease mask.

Age at interview 60

Gender Female

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The mask is really hard to live with. And for Humphrey it varied as I say, a lot of the time it wasn’t there because he’s a performer but I think everybody performs to some extent. But the mask even when it was there varied. Sometimes it was just impassive, just not making smiley movements. Sometimes it looked as though it was quite a sort of scary, eyes poppy sort of mask. No rhyme or reason really, it might have been tiredness, it might have been state of the day, goodness knows but that was that was not a nice face, it wasn’t just a mask. And then sometimes if you complained about it he could give you an immediate grin just to prove that he could because, you know, Parkinson’s you can do something that you’re only thinking about once. You can walk when you’re thinking about marching or, you know, clicking your fingers or something but then it all wears off. So you’d get a grin just, you know, stop complaining and then it’d go back. And I think that’s a really hard thing to do without all those facial signals or do without them quite a lot of the time.

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Speech can also be affected. Not being able to project your voice severely affects the ability to take part in conversations and in turn affects the ability to enjoy social encounters. Some people had a problem getting enough air and therefore produced a very faint sound. Humphrey had noticed that his voice had become softer though he found he could project it when using a microphone. Wendy, a singing teacher, noticed that she could no longer control her singing voice some time before her PD was diagnosed. For Sharon too, change in her voice was an early symptom.

Sharon has leant that she can speak better on a laugh or a sing. She sometimes worries that her…

Age at interview 57

Gender Female

Age at diagnosis 49

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I’ve never been able to sing. But you’re quite right, I can talk better if I talk on a laugh, or I talk on a sing. But again people would think you were weird. You know, I can’t sing in tune but if I want to talk normally I try and talk on a laugh because it seems to relax it a bit.

But most of the time I just think, Oh sod it, you lot are just going to have to put up with this And I just carry on. It doesn’t hurt. It sounds like it hurts and it doesn’t. And you have to be careful to keep your imagination in order. My grandmother and my mother both died of throat cancer, so you like the Pope my voice doesn’t work properly. So you can, you, I think you bring the melodrama out of it all and sometimes your imagination just gets melodramatic without you even giving it permission to. Just looking at what it is really like and dealing with little bits at a time, and actually nobody else wants to know about it. They get, it’s terribly, terribly boring.

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William had recently noticed that his speech had slowed up so that when he wanted to say something there would be a delay before the sound actually appeared. Keith, who used to speak confidently in public, now sometimes found that he couldn’t co-ordinate his thoughts with his words. Stephen whose speech had been slurred before his DBS operation felt that now his thoughts were not fast enough so that he had to speak very slowly. Joe on the other hand described what sounded like a kind of festination in his speech before his DBS.

Joes speech problem has changed since DBS. His speech therapist encourages him to make an effort…

Age at interview 64

Gender Male

Age at diagnosis 43

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I had speech difficulties before the operation, the kind of Parkinson’s patients often find, I spoke too quickly so I tumbled over the words, and I spoke too quietly for people to hear, I’ve always been quiet of speech, and I am still, but it was worse when I was definitely a Parkinsonian.

And this is now something different you think or?

This is a different set of speech problems yes, I’m still too quiet and one of the ways my speech therapist tries to combat that, she says, she says it’s not particularly helpful to try to think of articulation as something to aim for, what she usesis volume, that one should try to be loud. Apparently if you have Parkinson’s you think you’re speaking at a level that is normal but in fact it’s below normal, so if you aim for something, something that seems to you to be too loud you’re likely to hit a normal level of speech.

Is your tongue a problem at all?

The tongue and the lips articulating is a problem, getting the breath right I don’t, I think there’s something psychological about it as well as physical. I don’t know if I can explain why I think that. Emotion certainly comes into it, if I get angry with someone on the telephone my speech gets clearer and louder when I express that anger. When I’m telling someone about something important to me I’m likely to be able to speak better than if I’m just saying, Pass the salt please So I think, I think there’s a complication in the speech form which I don’t fully understand.

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Brian accepts the logic of voice training but finds it hard to keep thinking about it when he talks.

Age at interview 77

Gender Male

Age at diagnosis 63

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I’ve naturally had a rather far back voice. I learnt how to project it to give a lecture or to talk to actors, when we were producing an opera but if I’m just thinking about it, by myself in a conversation with two people I speak with a low voice. Partially because my parents quarrelled and I didn’t like the sound of raised voices.But, for, twice a week I went over to two dear ladies at the local Infirmary, the hospital and they, they got me reading phrases which came from common life, Can I have a cup of tea Has Jane rung yet Phrases you actually use, which I had to repeat until I almost went crazy. And I found as long as I was saying something fairly simple I could make quite a lot of noise and get my voice going in a way, sinuses here. Singers have a very rich buzzy sinuses and the, they take the voice up into it. And I found that I observed some singing teaching in a remarkable lady that my wife went to and she took me on with another pianist as a kind of dummy to, to see if she could get us to sing better. She gave me up, she said I had a Knödel, a dumpling in my throat. But I suddenly recognised the value of what she was saying. And if I could open the, the back of my throat I made an area there where the sound could mix and go up into the, behind my nose. And then again she said the, the sort of valve here which you can open, you can’t normally control it but singers can do it with a kind of sniff. Ahhh, ahh. And you get that tremendous buzz. But I, I, I found it a very, slightly unnatural, very unnatural, slightly unnatural way of talking when I just want to talk. And I have to think all the time of, speaking loud enough for the person in the next room to hear.

So it isn’t about your lungs?

No.

it’s about where you pitch the voice?

it’s, it’s the voicebox, yes. But then the throat is affected of course and you get, it’s difficult to swallow when you’ve had Parkinson’s for a long time. And that’s often what gets you. it’s not a mortal disease.

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