Parkinson's disease

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.

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.
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.
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.
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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.
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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
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.

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.
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.
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.

Last reviewed May 2017.
Last updated May 2017.

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