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.
When Ruth's family started to telephone after her husband told them her diagnosis, she couldn't cope with their sympathy and wanted to be well.
When Ruth's family started to telephone after her husband told them her diagnosis, she couldn't cope with their sympathy and wanted to be well.
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And I had to tell my husband which was quite hard telling him, and my son, and then my husband just phoned round my family because they had all been waiting for me coming back from hospital to see what, you know, how I had got on. And that, then they all started phoning to say, “Oh, I’m really sorry and everything.” And that was just making me worse. I just felt, no I don’t want anybody’s sympathy, I just want to be well. That’s all I want is to be well. And I was okay for a couple of days because I think it probably hadn’t hit me properly and then when it did that was when I got really down and depressed.
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.
Sharon didn't tell her teenage children for six months because she didn't want them to start looking after her.
Sharon didn't tell her teenage children for six months because she didn't want them to start looking after her.
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The bit that I was determined to stay in control of was my relationship with my children. Because I knew as soon as they knew about it the tables would turn and they would become the carer and I would become the cared for. And they were older teenagers, they were too young to be doing that. I wanted them to be free to lead their own lives. So I didn’t tell them for six months, I kept it secret. And in the end my girlfriends persuaded me to tell them. They said they wouldn’t trust me again if I didn’t tell them the truth. So I sat them down and just said, “I’ve got an illness that meant I would shake a bit.” So they asked me questions but I didn’t give it a name because I didn’t want to scare them. I don’t know who was kidding who, modern child, hit the internet, and eight minutes later came back and said, “Mum, you’ve got Parkinson’s disease” So, fine, right, yeah.
When I told my children it did definitely alter the relationship significantly. But then they pulled themselves together and got on with their own lives. So that they dip in and out of care for mum. But most of the time they’ve got over that bit and they’re just getting on with their lives which is what I wanted.
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.
Fiona and her husband are glad that they waited a while before telling their family because it gave them confidence to present it in a more positive way.
Fiona and her husband are glad that they waited a while before telling their family because it gave them confidence to present it in a more positive way.
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My husband decided he felt it wasn’t fair to tell our children because they were only, sort of early teens. And we weren’t going to tell our parents because again we didn’t want to worry them. We felt that we were worried about it and for the time being we just decided that was it, we wouldn’t say anything to anybody. I found that quite difficult because, that’s [not] my nature that I, I find it easy to talk about a things but I respected [my husband’s] wishes.
I think really one of the things I know that I had in my head [was] that everything would change overnight that, the symptoms I was reading about would all start to happen straightaway. And I think because, although I said that we didn’t tell people at first, and I know it sounds a bit bizarre but it felt like, sort of almost like our little secret, in a way that, that time just gave us, a bit of confidence to know that things were stable and, you know, things were carrying on as normal and that gave us a little bit of confidence that when we did share the news with my parents and the children we were able to say, you know, look, you know he is okay, he’s coping alright and it affects everybody differently. And it did give us confidence to think well, you know, perhaps things weren’t going to change overnight and everything.
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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