‘You don’t want the Parkinson’s to define who you are’ (Sharon)
A person who learns that they have Parkinson’s disease may in a sense never again be able to feel they are the person they used to be. They may feel sure that in themselves they have not changed, but physical features of the condition make it impossible, except when their medication is working very successfully, for them to hide from others that something is wrong. This section tries to describe the feelings people with PD have about themselves and how the reactions of others affect these feelings and some of the ways they use to deal with this; this of course also affects other people's perceptions of the person with PD.
Many people felt embarrassed by their symptoms; some could hide them like John who would try to conceal his tremor by hiding his hand in his pocket or Elaine who hid a facial spasm by covering that side of her face with her hair.
Many people described embarrassing incidents where outside observers had assumed that a their behaviour was caused by drunkenness or something worse. When George is out somewhere people tend to assume that he is drunk and that his mask-like appearance makes them think that he has severe mental problems.
These incidents, and many were described, can be hurtful and contribute to a reluctance experienced by many Parkinson’s disease sufferers to expose themselves to people who are not close friends or family. We will discuss elsewhere (see
Telling others) how people dealt with situations where they risked exciting unpleasant comments on their failure to behave like others.
Other constraints are described which affect the ability to continue to enjoy the challenges of social engagement. Parties were a trial for many people. Brian described how he was bad company because of his bad thoughts. Nicholas had noticed that in certain social situations he would become nervous and tongue-tied and his voice went.
Some people however described a different response to social situations in which temporarily at least there could be a renewed vigour and responsiveness. Isabelle, whose 78-year-old mother had had Parkinson’s disease for 12 years and now lives in a home describes how she can emerge from an apparently frozen state in response to engagement and interest from friends and family.
For some, friends and family were important in insisting on maintaining normal social activities.
Being yourself with friends and family
For families of people with Parkinson’s disease the problem was often a difficulty in deciding how far to accept changes within their relationships. Several men had found it hard they to relinquish their traditional role. They were embarrassed to be seen to let their wives do the carrying and worried about ceasing to be a main breadwinner. Though some like Gina were glad to note that her husband and even her sons had occasionally started to carry out tasks not usually given to men in their Portuguese culture.
Sometimes carers found it hard to decide how much help to offer - whether to treat their partner as an invalid and when leave them to it when they were obviously having difficulty with simple tasks. Philip said of his wife that, while she is concerned he doesn’t make an idiot of himself, she is endlessly patient and effective and that, though she has a full time job, if he needed help she would give it.
Another problem within families was the reaction to changes in mood of the person with Parkinson’s. Some people had to cope with irritability which they attributed to the disease.
What Tom stresses here is the importance of communication between partners. Several people confessed that self absorption and their inability to share their thoughts and concerns with their partner had probably contributed to the breakdown of their marriage following their diagnosis with Parkinson’s disease.
Perhaps the thing that people felt most uncomfortable about in their relations with others was pity.
Somehow pity seems to emphasise the very thing that is difficult: now that they have Parkinson’s disease they are no longer the same as everyone else.
Last reviewed December 2010.
