A-Z

Parkinson's disease

Redefining yourself

‘You don’t want the Parkinson’s to define who you are’ (Sharon)

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.

 

Sharon realised that once people knew they would see her in a different light and she wanted to...

Sharon realised that once people knew they would see her in a different light and she wanted to...

Age at interview: 57
Sex: Female
Age at diagnosis: 49
SHOW TEXT VERSION
PRINT TRANSCRIPT
I didn’t tell any of my family. I didn’t tell any of my colleagues at work. The only people I told was three or four close girlfriends who I swore to secrecy. I wanted, I wanted to see what happened when you told people. It almost felt that that was more difficult to manage than what I’d got. I mean, for me it’s about the way the world reacts to it that so defines it for me and I had to, had to be very careful that I didn’t, again it was about control of your own life. If you tell someone you’ve got an illness they go, “Oh my God, that’s ..” And you think, “Is it? I don’t’ think so. I think you know, I’m still here. I’m still doing it, I’m still getting on, I’m still achieving.”  
 
It’s difficult to pin it down. It’s, it’s something about my desire to just be normal and to vanish and just get on, but it’s also something in their eyes. It’s as a sort of turning off in their eyes, where they expect less of me than anybody else. ...And that, kills a bit of me.
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.
 

Khadim explains how he tried to deal with his embarrassment when he felt his symptoms were being...

Khadim explains how he tried to deal with his embarrassment when he felt his symptoms were being...

SHOW TEXT VERSION
PRINT TRANSCRIPT
I felt like, I felt like not, don’t go out, when I say I felt embarrassed I, if I’m sitting among, friends there, like you and two, three others there, you know, I always have this guilty conscience that they’re there watching me, my hand not shaking, and yet they are not watching I, I’m aware of that at the same time they’re not watching me but I’m saying to myself ‘ah well I’m shaking he must be watching me’ and they are not watching me, they are not criticising me’ that’s something inside me that was telling me that they are. So looking at that I was trying to be self, educating myself, you know, that, alright if they’re not worried about it why am I worried? Let’s shake you know, let it shake, that’s an embarrassment, you know, but.
Many people described embarrassing incidents where outside observers had assumed that 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.
 

Geraldine needed help when she would freeze while out walking and describes how some people...

Geraldine needed help when she would freeze while out walking and describes how some people...

Age at interview: 60
Sex: Female
Age at diagnosis: 42
SHOW TEXT VERSION
PRINT TRANSCRIPT
I can go from being perfectly fluid to being stuck like this. I could go through doorways I never got stuck so far, touch wood, about the doorways. But I would freeze in the street in the position I was in, you know, like a statue. You know those people who stand and collect money by not moving. And I I could only move if someone touched me. I touching myself wouldn’t work, someone else had to touch me and that’s difficult to do if you’re frozen because you’re standing there saying because your mouth is stiff too, you know, “Please, will you touch me.” And people are running in the opposite direction because they’re scared really, they think you’re peculiar which you are I suppose in a way.
 

Helen has learnt not to be upset when people seem to be commenting on her staggering.

Helen has learnt not to be upset when people seem to be commenting on her staggering.

Age at interview: 39
Sex: Female
Age at diagnosis: 33
SHOW TEXT VERSION
PRINT TRANSCRIPT
I think you learn to cope with things. I do get the odd comment. If we go out for meals and then or if I sit in a chair for very long I stand up I’m very stiff and I’m unsteady on my feet for a little while until I get the momentum. People comment, “Oh, she’s had a few.” Because we were out for a drink and that’s quite. I mean I almost laugh to myself now because it’s people’s ignorance but I, you know, that used to hurt my feelings a little bit. I think you just get used to it don’t you. People comment and but I’ve had that quite a few times and I don’t drink hardly well, a glass of wine with a meal but I don’t drink enough to be drunk. But people sort of because you’re swaying and not being, you know, normal people’s assumptions on you.
 

Neil describes two incidents when his slurred speech led to accusations of drunkenness.

Neil describes two incidents when his slurred speech led to accusations of drunkenness.

Age at interview: 48
Sex: Male
Age at diagnosis: 35
SHOW TEXT VERSION
PRINT TRANSCRIPT
Yes, it’s, the impression you give, you’ve got a job, it’s like, just slurred, everything’s all slurred. If people have never met you before, they’ll probably think, “Oh, Christ, he’s drunk.” Like I’ll give you an example, I went in a shop the other day in the morning. Because I weren’t too good, I was, you, you tend to drag your leg a bit, and your arm, people with Parkinson’s when you walk you don’t, my arms always straight down at my side. When I walked in this security bloke come up to me, he said, “No, you can’t come in.” I said, “Why not? I only want a packet of fags.” “No, you’re drunk mate.” Of course you’re ready to just blow your top. But anyway luckily I knew somebody who worked in the shop and she come out and explained to him. And of course he was all apologetic then. 

 

I can give another example. My eldest boy, it was back, oh, about a year or so ago, he walked, we had the garage door open and he, he accidentally walked into the garage door and gashed his eye. So I took him to the local hospital. Then because my speech was disturbed and slurred because I was concerned about him. The more frustrated I get, the worse it becomes. The receptionist, we was in this room waiting to see about his eye. I thought it strange that they come in, both of them come in the same room and he sat down and he said, “Do you want to tell us the truth now?” I said, “Pardon?” “You hit him.” I said, because they interviewed him as well, did I hit him? I said, “I can’t believe I’m hearing this.” He said, “The receptionist said that you was, you was, your speech was slurred and you staggered in.” So I said, “I can’t, I don’t believe you, you’ve asked me that.” So I said, “All right, I’ll tell you this, because I’m going, I’ve had enough of this now.” I said, “I’ve got Parkinson’s. I brought him in because he walked into the garage door, like he’s told you, and you’re accusing me of hitting him.” Well, of course they bent over backwards then, didn’t they? They wanted to know all about it. I said, “I ain’t got time for you.”
 

When a woman who thought David was drunk at 11am hit him with her walking stick he could see the...

When a woman who thought David was drunk at 11am hit him with her walking stick he could see the...

Age at interview: 54
Sex: Male
Age at diagnosis: 48
SHOW TEXT VERSION
PRINT TRANSCRIPT
I go out every day for a stroll and before I could walk better earlier on than I do now because obviously I’ve progressed but I could walk maybe a mile or so, you know. So I’d get the bus into town, it’s local town where we lived, and I’d just have a bit window shopping, pick up a bit of fruit and veg or whatever, you know, just so I wasn’t stuck in the house all the time. And it was about eleven o’clock in the morning and I had a carrier bag with a bit of fruit and veg in it and I and I tripped over a kerb and fell. And of course the anxiety of falling makes my tremor worse than it is so I’m now half on my hands and knees, because my arm’s shaking and not being able to speak properly. 
 
And an old lady came up to me, was on a walking stick, must have been well in her sixties or seventies, came up to me with a walking stick and I thought she was going to be helpful. And what she did was she poked me in the ribs with her walking stick and said how disgusting it was that I was drunk at that time of the morning. And, you know, and I thought but It I it bothered me at the time. I managed to scoop myself and get myself together and got a taxi home. And I was a bit concerned about it at the time. But afterwards I thought it’s really quite funny, you know, but yeah, I suppose some people could find that quite traumatic and that’s one of the things people think like, you’re drunk because I don’t walk in a straight line, you know. Or stagger a bit or whatever. That bothered me at first.
These incidents, and many were described, can be hurtful and contribute to a reluctance by many Parkinson’s disease sufferers to expose themselves to people who are not close friends or family. 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.
 

Fred regrets that parties no longer hold the charms he once enjoyed.

Fred regrets that parties no longer hold the charms he once enjoyed.

Age at interview: 70
Sex: Male
Age at diagnosis: 65
SHOW TEXT VERSION
PRINT TRANSCRIPT
Yes. I remember in the early days I used to go to cocktail parties. Couldn’t hear or make myself heard above the general chatter. And I had to sit down. So gone are the days when I could chat up women at parties. I just don’t like them any more. Cocktail parties.

 

Yes, I, yes, it is a, a problem. Not that you haven’t got things to say, but you can’t get it out in conversation quickly enough. People talk and exchange very quickly, very smoothly, get their ideas out. I can’t do that any more. I can think these things but by the time I’m ready to say things the argument, discussion has moved on a great deal.

 

I mean you come on to the question of being a burden and pity. I don’t want to be a burden to, to anybody and therefore would forgo certain social occasions if I’m going to be a burden or if people are going to pity me and talk to me from a sense of duty or pity. That I hate. I’d much rather people treat me as I am, for what I am, and not out of a sense of pity or duty, if you see what I mean.
 

Joe's social life improved at first after his deep brain stimulation operation but as some of...

Text only
Read below

Joe's social life improved at first after his deep brain stimulation operation but as some of...

Age at interview: 64
Sex: Male
Age at diagnosis: 43
HIDE TEXT
PRINT TRANSCRIPT
 
I find because I have difficulties talking now, I find it quite difficult to connect with even friends because conversation is not easy, and I suppose I tend to give up before I start. And certainly with strangers at parties it becomes something I find almost impossible to do, you know, the routine of where you live, what work you do, the sense of connecting with other people is difficult to get, so I begin to feel again some of that isolation I felt when I was pretty ill.
 

Stephen's friends treated him differently, although he wanted to be treated normally and as who...

Stephen's friends treated him differently, although he wanted to be treated normally and as who...

Age at interview: 42
Sex: Male
Age at diagnosis: 33
SHOW TEXT VERSION
PRINT TRANSCRIPT
The thing I find is that, this is weird but, some of my friends don’t come round and see me anymore because they feel awkward. But they shouldn’t feel awkward because I’m still the same person, I’m no, I’m no different to the person that was before he had Parkinson’s, but, they feel, awkward, and then there’s some that are treating me for who I am which is great, you know? But I’m, I don’t like to be treated no different really, no, and I don’t treat anybody no different who, who is, who are impaired by whatever disease they’ve got or disability, I treat everybody as an equal and I think you should always treat, treat anybody.

 

For instance, before you became ill did you, would you go to the pub?
 
I used to go to have a drink now and again, I When I had Parkinson’s with the shakes before my operation I didn’t hardly go out at all I, I isolated myself because it was embarrassment and unease. Since my operation, occasionally I’ll go out, my daughter and my son say, “Get on out dad, we’ll be alright.” And I stop and have a drink or two, but when I’m out I still find that there’s an uneasiness with my friends and they’re not the same as they were before I had Parkinson’s, you know? But I, I do try to get out and socialise.
 

David explains what it feels like when people address his wife instead of to him when they reply...

David explains what it feels like when people address his wife instead of to him when they reply...

Age at interview: 54
Sex: Male
Age at diagnosis: 48
SHOW TEXT VERSION
PRINT TRANSCRIPT
Does he take sugar? Well, the does he take sugar attitude. I mean is that the radio programme called on the radio used to be called, “Does he take Sugar. Because that’s what people do. And one particular incident like that sticks in my mind was I went to a well known pharmacist where I got all my tablets from. And I explained to him that one of the problems I was having was ninety per cent of my drugs came in blister packs and whoever put Parkinson’s drugs in blister packs wants their head examining. And that I hadn’t got these timing boxes at the time so I what I wanted was some a tray with the doses in at what times they had to be taken and all that. And I was talking to him and I said to him, because sometimes I can’t remember what time to take my medication or whether I’ve actually taken it or not so having a tray I would be able to see that the slot was empty and then know that I had taken it. And as soon as I’d finished speaking, he looked at my wife and said, “Well, we can provide you with a tray that does.” And he wasn’t even talking to me. And I… I was absolutely I couldn’t say anything. I was I was fuming inside but I thought I thought, you know, is it what is it my perception of what’s going on that’s wrong or is what this man’s doing is wrong that not even speaking to me, you know. Like people in a wheelchair and you and you talk over the top of them to the whoever is pushing them or whatever, you know. 
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.
 

Isabelle remembers how impressed she was by her mother’s reaction to her daughter’s illness.

Isabelle remembers how impressed she was by her mother’s reaction to her daughter’s illness.

Age at interview: 60
Sex: Female
Age at diagnosis: 44
SHOW TEXT VERSION
PRINT TRANSCRIPT
My mum rang me every day from the nursing home, “How is she? What’s going on?’ And asked me what was her symptoms. She went from being seventy eight with Parkinson’s and not really and most of us not really thinking anything and then saying, “Well, what are her symptoms? What are they saying? What medication is she on?” And it was almost like it revived all her information and news that she knew about everything. Very I think I said to her the other day that, Jack had to do something, having extra lessons of, you know, something to do with potential dyslexia or border line. “Oh, and what is he doing and how is he doing that.”
 

Mari describes how Humphrey’s ability to improve in the face of a social challenge was difficult...

Mari describes how Humphrey’s ability to improve in the face of a social challenge was difficult...

Age at interview: 60
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
I think that’s particularly true the difference as as family there’s a big difference you perceive between how the person with Parkinson’s is with you on a day, daily, twenty four hour a day basis and how they are with new faces. And I think that applies to the mask and it applies to lots of other things as well. But there’s something really horrible when you’ve had a large dose of the mask, somebody not smiling at you. Not warming to things you’ve said, jokes you’ve made, just sort of getting you’re getting that tired face. A new face walks in through the door and immediately it gets a warm smiling greeting.

 

And the hand that is shaking when pouring you a cup of tea is dead steady when pouring the visitor a glass of wine. And it’s really hard to feel that that’s not an insult to you, the family. And I think we had a lot of that and sometimes were able to say, “Well, that’s how it is.” And sometimes were impatient, showed that we were insulted.
For some, friends and family were important in insisting on maintaining normal social activities.
 

Ruth's friends and her daughter refuse to allow her to accept an invalid role.

Text only
Read below

Ruth's friends and her daughter refuse to allow her to accept an invalid role.

Age at interview: 56
Sex: Female
Age at diagnosis: 47
HIDE TEXT
PRINT TRANSCRIPT

A few friends I’ve lost. I think maybe the same that they just can’t cope with somebody not being as well as they are, you know. People that I, I’m saying ‘friends’ although they, my daughter will say that they haven’t been real friends if, if, you know, if you’ve lost. Others have been great. I’ve got two in particular who I go out with and they push me, you know, they’ll say, “Oh come on we’re going to do so and so.” And I say, “Oh, no I don’t know.” “Yes, you are you’re doing it.” And they’re good because they make me do things that I might be apprehensive about doing. But others I, maybe three or four other friends I’ve kind of lost over the time. And I know myself it’s because of the Parkinson’s because they feel uncomfortable about it and that that’s been hard to come to terms with, because you think that you know somebody, you know, you think you know a person inside out and it turns out you don’t at all. I mean if somebody had have said to me before the diagnosis what, what do you, how do you think they’ll react? I would never have said that they would have done, you know, just sort of literally walked away from me but then I suppose you’re, that way you do learn what true friendship is.

 

Mmm... and the ones that push you to do things what sort of things do they encourage you to do?
 

They will encourage me to eat out and to go like, in a few weeks I’m going to see Elton John in Perth, you know. They encourage me to do things like that.

 

They, want me to go on a shopping cruise with them over to Bruges, you know. You know, just things like I personally myself I wouldn’t do. But because they’re pushing me to do it I think ‘och aye, I’ll give it a bash anyway’. I think probably becauseI feel safe with them now, because I know that, you know, they accept the illness and they accept me how I am now. So there’s no problem with it and the more relaxed I feel about doing things, the more I’ll do, but when I’m really uptight about something I just won’t do it. So when I’m with them I’ll go for things that I normally wouldn’t, I wouldn’t go for by myself. It’s pretty much the same way that, that I am with my daughter, you know, she makes me, she’ll say, “Right we’re going for a walk.” And I say, “Oh no my legs are.” “No, come on we’re going.” And she kind of pushes me, but I know that it’s all done with the best intentions so it makes me think, ‘oh well, you know, for their sake I’ll, I’ll try and do that.’ So it’s quite good.
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 to relinquish their traditional role. They were embarrassed to be seen letting their wives do the carrying and worried about not being the main breadwinner. Though some like Gina were glad 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 to leave them to it - when they were obviously having difficulty with simple tasks. Philip said that, while his wife is concerned he doesn’t make an idiot of himself, she is endlessly patient and though she has a full time job, if he needed help she would give it.
 

Mari felt that at each stage she had to decide whether or not to offer to help.

Mari felt that at each stage she had to decide whether or not to offer to help.

Age at interview: 60
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
I can talk a bit more about helping. One of the things about Parkinson’s because it’s variable, because you keep moving from stage to stage is that it’s really difficult for carers and family to get the hang of how much to offer help. On the one hand you’re trying to allow somebody to be independent, on the other hand they want to do something faster. There are different answers at different times. Eating, particularly, is tricky. You don’t want to be seen to be chopping up somebody’s food for them. On the other hand Humphrey found that mealtimes could be a nightmare particularly in other people’s houses because he could choose to have items of food which were easy to spear on a fork or put in a spoon but cutting up food could be difficult. So we could chop it up for everybody but if he went to somebody else’s house and was presented with a large chunk of meat that he couldn’t deal with was he to ask his next door neighbour, what, should I go and do it for him? Again, hard to get right answers and he’d quite often, you know, in a buffet or something choose the thing that he could eat other than the thing that he fancied. 
 
Dressing was another one. He wrote a song called, “Putting on your socks.” Because putting on socks was really, really hard. Again, I think my daughter found a gadget called a Soxon which helps you put on socks. But the point was that it was something he could do. But the whole palaver of dressing including putting on socks in the morning took so much longer than he wanted to allow it. It was not an important enough activity in the day to take that much time.
 

Elaine's partner was perhaps too inclined to feel that she should not do things.

Elaine's partner was perhaps too inclined to feel that she should not do things.

Age at interview: 44
Sex: Female
Age at diagnosis: 43
SHOW TEXT VERSION
PRINT TRANSCRIPT
He’s more protective of me I suppose, I’ve noticed. I think he perhaps is a little bit worried because he occasionally says, “You shouldn’t be doing that.” Or. And then I’ll question him and say, “Well, why shouldn’t I be doing it because I’ve been told to carry on as normal which is what I’ve been doing.”

 

What kind of things has he told you not to do?
 
Like doing the garden and things, he doesn’t like me. I know it doesn’t look like it but when I when I do do some gardening and that, “Oh, you shouldn’t be doing that.” Cutting the hedges I was, a perfect example, I was cutting the hedges a couple of weeks ago and, “Oh, I you shouldn’t be doing that. I’ll do that.” 
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.
 

Tom admits to being irritable but says that is something both partners have a right to in the...

Text only
Read below

Tom admits to being irritable but says that is something both partners have a right to in the...

Age at interview: 40
Sex: Male
Age at diagnosis: 27
HIDE TEXT
PRINT TRANSCRIPT

Yeah it, it, it’s this thing about it affecting both of us which is annoying for me. It, it’s, it’s, it must be hugely frustrating for her. I actually think that Parkinson’s is almost as bad if not worse for the, for the, for your partner as it is for you because you can, you can see. You know what’s happening to you and, but actually your partner can only see you suffering from it. And it, it must be really difficult, to deal with because there’s nothing you can do. You can just sit and watch it. You can’t, you can’t actually help in any way. So it must be frustrating and again it’s this thing about planning. And communication is actually key to it, you know that it’s and we have. It’s hard but, but you know. And when there are times when we’re both saying, “Oh we hate this blooming disease”. You know it’s just, just a nightmare. But, but as long as, as long as you can communicate I think that you can get through it. But yeah it, it’s, it’s not easy.

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.
 

Nicolas regretted the effect his preoccupation had on his relationships.

Text only
Read below

Nicolas regretted the effect his preoccupation had on his relationships.

Age at interview: 47
Sex: Male
Age at diagnosis: 44
HIDE TEXT
PRINT TRANSCRIPT
Yes, it’s been difficult. I think having the disease has made me quite self conscious and quite internally focused. I’m separated now from my wife and I’m sure it had an effect because I found it difficult to express and articulate things myself. I couldn’t really involve her in what I was going through. It was a source of frustration, I believe. So that’s been awkward.
 
One of the things I’ve noticed more recently is that I’ve become quite anxious and nervous in public and so my relationship with people at work can sometimes be difficult. Because I feel anxious or nervous in front of them then I don’t give a good account, I feel I don’t give a good account of myself. So there’s another feature of the disease that affects you. I suppose, I’m not sure if that is neurologically or whatever but nervousness is important.
Perhaps the thing that people felt most uncomfortable about in their relations with others was pity.
 

Tom explains what he feels is wrong with being pitied.

Tom explains what he feels is wrong with being pitied.

Age at interview: 40
Sex: Male
Age at diagnosis: 27
SHOW TEXT VERSION
PRINT TRANSCRIPT
There’s nothing I, I can, nothing I hate more than, than the thought of someone pitying me which is, pity is just, just, terrible to contemplate and whilst I know that pity it comes out of probably comes out of a good, a good thought rather than a bad thought, it’s just, you know, it’s, [sighs] it’s well, it’s a very difficult thing because, you know, when I talk about patients but actually patient, the word patient has a, I don’t mind being called a patient, words are just words but, but, but actually the word patient implies something to, either sympathise with or, or to pity I think.
 

Gaynor is uncomfortable with being the object of pity or anger.

Gaynor is uncomfortable with being the object of pity or anger.

Age at interview: 54
Sex: Female
Age at diagnosis: 51
SHOW TEXT VERSION
PRINT TRANSCRIPT
But when, the first time that they rang it was, the most, well it was not supportive it was condescending, you know, it was, they were, it was as if they were get, they were showing me pity rather than anything else. And that’s, that’s easy, you know, easily done, but and I suppose I was sensitive as well. But I know that, you know, the person was doing it from the best intentions but it’s difficult to get the right balance.
 
Sometimes I catch people’s sort of eye, there’s this sort of, pity, not pity but, anger as well, you know that, and although I don’t get angry myself and because of, you know, there’s no good saying ‘why me?’ because ‘why me’ is ‘why not me?’ [laughs] and that’s a weird thing really. It’s really hard to explain sometimes.
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 May 2017.
Last updated May 2017.

 

donate
Previous Page
Next Page