Parkinson's disease

Telling others

After learning their diagnosis, people had to decide who else to tell and how to tell them. Some people told others straight away, others did not tell anyone for quite a while. Natalia felt it was important to tell people so that they could try to understand what people with Parkinson’s disease experience. She said “I don’t want their pity. I want their understanding. I want them to realise what I’m going through.” She felt that when others saw her looking OK they found it hard to understand that she was feeling terrible.

Several people had to tell their partner, some were not surprised since they had suspected Parkinson’s disease as a possible diagnosis. Ruth who had gone to her appointment with her daughter, found it very hard to tell her husband when she got home. Wendy’s husband was not very supportive, when a neurologist told her that that she might have PD. She got very depressed for a while until she got some support from a friend who was a GP.

Parents of dependent children had to decide how much to tell them. Helen used a book called “My mum’s got Parkinson’s” to tell her young children. She believes that it is only now that they are in their teens that they realise the ways in which she is affected by it. Karen told her teenage children straight away so that they would know why she was upset. She told them that she had a disease which wasn’t life threatening but it would affect the family’s future and they would all learn to live with it.
Rafa and Anna decided not to tell their teenage children.
Gaynor’s sons, in their twenties, didn’t understand what Parkinson’s disease was until they read on the internet that it was what Michael J Fox had. They understood it after reading his book.
Some people had to tell their parents that they had Parkinson’s. Neil's parents were very upset because they felt they were to blame, but felt reassured when they realised that no-one in his family had had the disease. Gaynor’s mother-in-law found it hard that she should be well when Gaynor was not.
Some people told no-one or only a few people for quite a while after they got their diagnosis. With medication controlling symptoms well, they could carry on as normal without anyone knowing. Some people worried how others would react and thought they might be treated differently.
But not telling others also created difficulties. Fiona’s husband wanted to protect their children from worry and so decided not to tell anyone about his diagnosis. Fiona found it hard to keep her worries to herself but respected his decision. Later when the children started to notice that their father was walking differently, they decided to tell them.
Some people talked about their experiences of telling friends and acquaintances they saw less often. Gaynor, who outwardly has no signs of Parkinson’s, found it difficult dealing with the shocked reactions of some friends she hadn’t seen for a long time at a school reunion.
 

Last reviewed May 2017.
Last updated December 2010.

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