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Parkinson's disease

Getting the diagnosis of Parkinson's disease

It is very hard to imagine what it would be like to be told that you are suffering from a condition which, so far it may have little impact on your life, is going to be there for life and may drastically affect the quality of your future.

Anyone reading this account of patients’ experiences of receiving their diagnosis may feel annoyed that the doctor giving the diagnosis did not do more to comfort, inform or generally reassure them about the future. Maybe they did. But for the person being told the diagnosis the memory of it includes their initial impression and the information that they went on to uncover about what someone describes as their ‘unwelcome guest’.

The doctor may have had to break such news many times before, but it may still be something which is not easy to do right. Some people mentioned how difficult it must be for a doctor to deliver such a ‘daunting’ sentence.

 

Fiona realised that it might not have been easy for the consultant having to tell them the...

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Age at interview: 46
Sex: Female
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I think probably when my husband was referred by his GP to the consultant I think, although we didn’t realise it at the time, I think then he had an idea of what it was going to be. And that was fine I think that he didn’t say because at that point he wasn’t sure. And then when we went to see the consultant, perhaps in hindsight it might have been better to wait until after he’d had the MRI Scan. I don’t know whether we could’ve prepared ourselves any better because, probably at that moment of being told will always stay with us. I thought when the consultant went out of the room and then came back in again, I almost felt afterwards that it was hard for him to say to us, and he, he was almost sort of, you know, preparing himself because, although he’s probably done that lots of times it was difficult for him too, because he was giving us bad news and it was a shock. And I think probably he did it the best way that he could and that, that was fine for us. So it would’ve been there, sooner or later. So probably, that was the best way that we were, we were told really.

Many people we talked to felt that their diagnosis had been delivered quite brutally, that the significance of what they were being told had not been made clear.

Tom complained about the use of long words like idiopathic, substantia nigra and cogwheel rigidity. Others supposed, hearing the word disease, that this was a fatal illness, even that they might not have long to live.

 

Gina, who knew nothing about Parkinson’s disease at the time of her diagnosis went away confused...

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Age at interview: 49
Sex: Female
Age at diagnosis: 42
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I was unfortunately seeing a neurologist that was on his day of leaving. He was leaving that hospital, moving to another hospital. And he just, he examined me and came and said, “Oh, you’ve got Parkinson’s.” And I said, “Pardon.” He said, “You’ve got Parkinson’s.” I said, “Well, what’s that?” And he said, “It’s a, not a disease, a condition where a certain chemical isn’t going to your brain. It’s not making enough chemical going to your brain.” So I said, “Oh.” And I, I was a bit in shock. Because I, I’ve heard the word Parkinson’s and I thought of Michael J Fox. I’ve seen him on the TV. I thought, “Well, he, he had Parkinson’s. And Cassius Clay, I think he, he had Parkinson’s.” I still wasn’t quite sure what it was. And he just said, “Yea, you’ve got it.” And I said, “Well, can I have a second opinion, please? Because I’m not . . .” The way he spoke to me, I was in quite a, a state of shock. And he said, “Well, you can come back in a couple of months’ time when the lady who’s taking over from me will examine you as well.”

 

So when I went back in the April, I said to the, this new neurologist, “Is there any chance that for the next twenty years that I won’t get any worse?” She said, “Oh, no, you will definitely get worse.”  And I thought, “Oh, God.”  And all that I could do was cry, because I thought, “Well, I really don’t know what this is.” And I just come in and I just burst out crying.

 

... You might find this odd, when he, when he said Parkinson’s, I was thinking of leukaemia and that type of thing. And I, I thought, “Oh, does that mean I’m going to die? Or, you know, will this thing take over my whole, whole body? And will my husband have to look after me?” I, I just, I, I didn’t know what, what it was.
 

Judie described the unfeeling attitude of the neurologist she had gone to see privately and...

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Age at interview: 62
Sex: Female
Age at diagnosis: 52
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It was almost as if, oh I’ve diagnosed what this person’s got. I’ll tell her and that’ll be it. He didn’t give any offer of any support. He just said that he’d make me an appointment at the hospital and I would go along and see him again and issued me some pills. And I think, I think you need to know some support that you can go to. I mean I stayed awake that night and I did think to myself there must be a support group somewhere. But the support I got [laughs] was not the best kind at that particular time. But the course that I went on was fantastic, and I think they need, all medical staff need to have booklets of something to give you that explains what it is. I mean, he told me that my condition was going to get worse but I didn’t know what it was going to be like. I didn’t know whether I wasn’t going to walk or, move or whatever. I just didn’t know. I was left in the air, and it was my friends and that, that had got information together. And but it, we hadn’t got the internet at that time and, there’s a lot of information available now for people that are diagnosed with it. And I think, over the last nine years that’s improved an awful lot.
 

Ruth described the brutality of the original delivery of her diagnosis, her immediate reaction,...

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Age at interview: 56
Sex: Female
Age at diagnosis: 47
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And it was quite brutal the way it was diagnosed. He just said, “You’ve got Parkinson’s Disease but you won’t die with it, and the tablets we can give you should cover about the next ten years. After that they start not to work so much and your symptoms will get worse.” And that was about it.
 
Really that’s how I was left, which was quite upsetting. And coming home telling my family, it was upsetting to tell them too. And, I took a, it was a good month to six weeks, I was really down and depressed. And I got a phone call from the Parkinson’s Disease Society after about the six weeks and the lady talked it over with me, my diagnosis and what it could mean for me, what it probably would mean for me. Explained that everybody with Parkinson’s is different and some people it, it escalates quite quickly and others it doesn’t. So something hit a chord with me then and I, I just thought, ‘oh well I’ve got this I’m, I just have to get on with it now. There’s not much more I can do about it’. 
 
But it, it has been a long process coming to terms with it. I mean, first of all I was very, very down and depressed. Then I was very, very angry because I just thought ‘well why should, why should it be me that gets this at my age?’ and after the, the anger has sort, it was a, a form of acceptance. Even yet after all this time though I feel quite angry about it because I just think that I stopped being the person that I was when I was, when I was forty-seven and a different person took over sort of thing. I’ve never, I’ve never felt back like myself again from that day that I got that diagnosis. I’ve, I’ve always felt someone, that I’m someone different. 

Certain things said in Gaynor's first consultation stuck in her mind - ‘You and I are going to get to know each other well over the next few years if we don’t fall out or you don’t move’; and to 'explain' why she should have developed Parkinson’s disease that it was ‘the way the dice has fallen’. Her doctor also advised her to join the Parkinson’s UK.

When Rachel was told when she was 71 that she had mild early Parkinson’s disease she was advised “to regard it as a nuisance and not a tragedy,” which she thought was a very good piece of advice. 

Peter’s GP surprised him by seeming to be prepared to take a bet on his having Parkinson’s disease and offering to prove it by giving him a trial of medication.
 
One woman, who feels she had made the mistake in going alone to her first appointment, remembers she had been shocked after being told that, while Parkinson’s disease was the most probable diagnosis, only time could reveal whether this was really the case. During the next year her husband refused to accept the diagnosis and this uncertainty seriously depressed her.
 
Some people were not fully informed what was going on in their GP’s mind. For instance when they referred them on to a neurologist without actually explaining why they were doing this (some were even confused about whether neurologist wasn’t another name for a psychiatrist).
 

When Penny was referred on by her GP she was expecting to discover that her symptoms were caused...

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Age at interview: 53
Sex: Female
Age at diagnosis: 51
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I was very, very stressed and I just felt, my body just seemed to be getting more and more stiff up one side. And I went back to my doctor who had, who had been monitoring me through that period he knew I was under a lot of stress, and I just said, “Look, you know, I’m so stressed my body’s atrophying.” [Laughs] and at that point he said, “Oh, you know, I think we might need to send you to a neurologist, it probably is just stress but we need to send you just to see.” And I had no idea, I had no idea what that might mean. I still assumed that I was just so stressed because I was fighting this redundancy [tuts] so I got this, they got this appointment which did come through reasonably quickly and it was two days after the date of which I was made redundant and then redeployed [laughs], so I was really quite a shell-shocked anyway. And I just went into this consultant’s room and he said, “Oh you’ve got Park….” “Oh.” He said, “Do you want me to tell you what the matter is?” And I wasn’t expecting, I hadn’t done any background research, I’d assumed it was all connected to just being stressed because of this redundancy, so I had no reason to think that he was going to tell me anything difficult. So I said, “We, yeah there’s no-one else here so you may as well, may as well tell me because I’m here now and I’ll, I’ll worry if you don’t.” So he just said, “Oh you’ve got Parkinson’s.” And I was just absolutely dumbfounded... and I felt unable to, I wasn’t even taking the information in, I hadn’t, I’d no idea what was, what even to do about it, or what the impact would be, or anything really, and, what was interesting is I had told my manager I was going to go and see the neurologist and he obviously didn’t know what it meant either because otherwise he’d probably would have not had been able to, they would probably would’ve had to extend my redundancy date, because it’s not good practice to actually, you know, do what happened to me. So it, I suppose other people haven’t got awareness either.
 

Karen only realised that she probably had Parkinson’s disease when she looked up her medication...

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Age at interview: 45
Sex: Female
Age at diagnosis: 39
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In the beginning I’d had a lot of tests and they couldn’t actually confirm the diagnosis. And at one stage the neurologist said to me, “it could possibly be MS. You could be in a wheelchair in two years or running a marathon in twenty. I can’t tell you what’s going to happen” which was not very nice, very upsetting. And then of course four years later when my symptoms progressed I was then told that again they weren’t, that it wasn’t a conclusive thing, “but take this medication away with you and try it.” And so I found out I had Parkinson’s by looking on the internet and, it wasn’t a nice way to find out that you had a disease. 
 
And I really, then I went back to my GP and asked for a second opinion because I wasn’t convinced that they’d got it right the second time and for a good year or so I kept thinking, ‘No, I haven’t got Parkinson’s. They’re going to tell me I’ve got something else.’ And so it was a long time before I was able to start taking on board the fact that I did have Parkinson’s disease and how it was going to affect my life. And start to accept the fact that I had to live a life with a disease and taking medication for the rest of my life. And that’s I suppose really when I started to become very depressed.
Most people's symptoms at the time of their first consultation with a neurologist were quite slight, though persistent. This might explain why at least some people could be in denial (see Path to diagnosis & Early symptoms).
 

Elisabet was aware that something was wrong but didn’t allow herself to consider that it might be...

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Age at interview: 67
Sex: Female
Age at diagnosis: 50
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I looked at my legs, I was actually sitting on the beach and one of the legs was shaking but it gave me no associations. So when I was diagnosed I wasn’t shocked or anything I was, I just accepted it. And I think acceptance has been acceptance and denial, both have been my attitude to the disease. Acceptance of the fact that I, I was suffering a lot from tremor but denial that this in any way influenced me. I had a job at that time which was quite demanding and I continued to, to let me be in demand and I was responsible for a [public health] programme.
 
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Nicolas feels that he had been in denial and regrets that he failed to share with his partner the...

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Age at interview: 47
Sex: Male
Age at diagnosis: 44
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I think she was in the same situation as me, didn’t understand enough. So she was very helpful, in fact that she checked out websites and that sort of thing and she was very supportive. In fact, when I went on the conductive education course she came with me on a number of occasions. So she was supportive. So I think it was more the emotional side of things that caused the friction between us. I guess me not opening up and being clear about what the situation was, partly not being able to reconcile it with myself that was difficult. Also, I wasn’t going to talk about this but I am now, I think because I was tired and didn’t want to do things when she did, our social life might have suffered as a result. And obviously I wasn’t able to provide her with the support and social life that she felt we should have had, I think there’s something in that.
 
Some admitted to having had some idea about the possible diagnosis before first seeing a neurologist. Bob said that he had thought that it could possibly be something like that because of the symptoms, but he didn’t want to believe that his fears would be confirmed. Ann said that she had lived for three months with the idea that she might have Parkinson’s disease; she had dreaded having it confirmed.
 

Humphrey had looked up the symptoms and decided that he should write about his experiences.

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Age at interview: 57
Sex: Male
Age at diagnosis: 54
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I wasn’t unduly dismayed. I’d seen it coming by identifying the symptoms in the encyclopaedia. And I remember thinking the first day that I thought I might have it, I thought, “Well, if I have got it, I will have to write something about it” because I’m a writer by profession, or one of my jobs is being a writer. And so, it’s, the way out of all, all predicaments is to write, is to write about it. And I’m trying to do that at the moment. So it, it didn’t sort of, it didn’t sort of hit me, wham, like that, out of the blue, it was something that had been creeping up all along. 
 
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Keith had done quite a lot of research before going to the neurologist.

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Age at interview: 74
Sex: Male
Age at diagnosis: 70
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Well he confirmed that I’d got Parkinson’s. Mind you, the doctor had already suggested it and I was convinced I’d had it because I got lots of books out of the library and read up all about Parkinson’s. Looked at all the symptoms and ticked them off down the list. And so the neurologist’s letter to the doctor said I confirm yours and his diagnosis. So more or less he was accepting what the doctor and I had both agreed that I’d got Parkinson’s.

 

Okay and when you realised that you had Parkinson’s how did you feel about that?

 

Well I gradually got accustomed to the idea that I’d got it through looking at the books and realising what the diagnosis was. So it was a bit of shock really because until then I’d been very healthy.

But for many people the news came as a complete surprise, producing stunned disbelief.

One reason for refusing to accept the diagnosis was a belief that Parkinson’s disease affected only old people. Also their symptoms were at this point a long way from the image they had of people with the condition.

 

Stephen described his reaction to people with neurological problems before he became one himself.

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Age at interview: 42
Sex: Male
Age at diagnosis: 33
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When I first got Parkinson’s like it hits you because, it’s really strange because when you see somebody or you hear about somebody’s got some sort of disease or you sort of, they pass you by and you, you think to yourself ‘poor devil is she in there must be hard for them’ and, they go by and your life goes on and that’s passed sort of thing. But when it’s you it, it’s a hell of a shock and I was quite numb when I walked out of [the local] Hospital when they told me I had Parkinson’s and I sort of, for the first couple of weeks yeah I did get a bit depressed.
 
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Tom came out of the neurologist's waiting room to the horrific realisation that in time he would...

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Age at interview: 40
Sex: Male
Age at diagnosis: 27
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When we were coming out of the, of the consulting room and seeing the next man, he was about to come in. And, and he was writhing around in a, in a wheelchair and he had terrible dyskinesia which is this sort of writhing movement which you can see me doing a bit now. I’m rolling a bit from side to side. But his was far, far worse and his tongue was out and it was sort of. It was, he seemed to be sort of writhing around like a snake, like a, and he didn’t have any control of his, his motion at all. And I thought, “God this is awful. How, how long is it going to be until I am like that?” And, and it was a shock. It was, it was horrendous, you know to, to see that and, and suddenly going back into the waiting room and seeing the people who, who were, who I’d had been in the waiting room with before. And, and, and feeling before I’d gone into the consulting room I, I’d thought, “God I’ve got nothing to do with any of these people”. Because they were mostly elderly and, and their symptoms were quite awful. And then suddenly walking out and feeling, “Well actually I’m one of them now”. And that, that was pretty awful.

 

So the diagnosis is no, there’s no, there’s no easy way to be diagnosed with Parkinson’s. It’s, it’s a shock for anyone. Obviously it’s perhaps more of a shock for someone who’s only 27 years old but it’s a, it, it’s a horrendous experience.
 

Helen, then 33, was furious when her GP said he suspected she was suffering from Parkinson’s...

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Age at interview: 39
Sex: Female
Age at diagnosis: 33
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When I was about thirty three I started finding some strange feelings in my hand. Couldn’t put any finger on it, just they wouldn’t if I picked up a door key I found I couldn’t put it in the lock and using the mouse on the computer, certain things like that, just suddenly my arm it just wasn’t working. It felt it didn’t feel normal. And this went on for about four weeks and I kept saying to my husband, “I don’t know what’s wrong. Something feels strange.” So he suggested I went to see the doctor at six weeks so which I did and funnily enough the first thing he said was, “You’ve got early onset Parkinson’s disease.” Which I was outraged at because I thought, “What a terrible thing to tell a young mother and how ridiculous, it couldn’t be that.” But he was actually right [laughs] long term. 

 

...I think I was very fearful it was a brain tumour. I’ve always been scared of having a brain tumour and that was my biggest fear so when he plucked this out of the sky I just I thought he was a mad man [laughs]. I was very angry with him. I remember going back to my sister’s who was looking after my children for me while I went to the appointment and I was just so angry about it and we we almost laugh now say, “Do you know, actually he was right.” It just seemed a strange thing for him to have diagnosed me with really but he obviously knew his stuff.

Some people refused to believe that such a diagnosis could apply to them because they had always been so fit and healthy. In the case of two people who had been enthusiastic runners, their running may have helped the early discovery of their disease, as their first symptoms were problems with running.

 

Steve noticed that he had suddenly dropped from being first in the team to being last for no...

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Age at interview: 52
Sex: Male
Age at diagnosis: 50
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Well, ...Surprised, because I honestly thought well the idea of me taking up running was to keep fit, and I thought, great I’ve hit a, hit a level, I mean, if I told you my times it wouldn’t mean anything to you, because, you probably don’t understand times regarding running. But, I was on a, I was on a peak, every race I did, I was hitting PB’s [personal best's], and all of a sudden I go from that down to being last for the team, you know, and although I was shocked, I was also surprised that a fit person like myself could, could get it. You know you take up something like that to, you think well okay, end of all my troubles, the only injuries I’m going to get is running related injuries, like you do. And at my age I expect it anyway, but not, not to be diagnosed with something that I’ve got for the rest of my life.
Several people felt relief at the diagnosis because they had feared something worse, for instance a brain tumour. Others having had vague symptoms for years – fatigue, pains, cramps, spasms, shakes, had been variously diagnosed as depression, frozen shoulder, repetitive strain or felt they were being labelled as having generally hypochondriacal neurosis (an excessive fear of or preoccupation with a serious illness, despite medical testing and reassurance they did not have it). Philip had suffered from increasingly incapacitating depression which he associated with pain as he waited for a hip operation. Once Parkinson’s disease had been diagnosed and he had started on medication he soon found he no longer needed to take an antidepressant. Peter admitted that at first he felt relieved it was PD and he had not realised how serious the condition could be.
 

Jean had been told several times that she had nothing wrong with her so her diagnosis came as a...

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Age at interview: 72
Sex: Female
Age at diagnosis: 64
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Yes, I, I did used to get upset, because I knew something was wrong. And when you’re trying to get it through to somebody who tells you there’s nothing wrong with you, then, you, you know, the, the, it is a bit sort of hard. And you feel you want to get up and slosh them one really, you know, sort of.

 

I told one of me sisters about three years ago, and she told the rest. So obviously it was a shock to them when they knew. But because I had that ME as well, they thought it was just the ME and not, and not with that Parkinson’s. So I suppose, yes, maybe it might have been a bit of a relief. I don’t know. Because in actual fact one of these friends, because we were going away on holiday with them, and I’d been up and seen that consultant in [name of hospital] and he said there was nothing wrong with me, and we’d gone on holiday, because we was away with them. We came back from being out for the day and I sat down and they started. “Oh, oh” I said, “My arm is hurting me again.” I felt like just sitting down. And she said, “Now come on, get up. The doctor said there’s nothing wrong with you. So get on with it.” And that would annoy you like, you know. But then you can understand her because he said there was nothing wrong. So, yes, it was quite frustrating really because you can’t do no more and tell them like how you feel and that.
 

For Elaine too the diagnosis and also the start of treatment made sense of symptoms for which she...

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Age at interview: 44
Sex: Female
Age at diagnosis: 43
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So it was about six months ago that I was diagnosed finally and then everything has sort of happened all at once, all the drugs and different things. It was a relief to find out actually. I wasn’t fazed by it at all because I thought I was perhaps going a little bit crazy, imagining things etcetera or it was the death of my father or other outside influences that were causing these symptoms. So it it was a relief. I was glad that there was something wrong with me if you like. And then I got on to the medication and everything’s improved since then. I’ve just got better and better and better.
 

Sharon had suspected for some time that she might have a serious neurological disorder and was...

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Age at interview: 57
Sex: Female
Age at diagnosis: 49
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I knew what he was going to say. I knew what I’d got. I think you do. What he actually said is, “You’ve got symptoms that lead me to believe you might have ..” And I could have finished that sentence. But the very biggest one, the diagnosis was just an enormous shock. However much you know what you’ve got, to actually be told you’ve got it, I knew I’d got it, I didn’t want anybody else to know I’d got it. It was the bringing it out into the open that was so difficult because if you can keep it private you’re in control. Whereas as soon as it came out into the open my life was simply taken over. 
 

Ann came to adopt a very positive attitude to the diagnosis she had been given.

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Age at interview: 68
Sex: Male
Age at diagnosis: 66
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When we first thought about having Parkinson’s, my husband and I  were [name of town]. And we sat and discussed it and said, “If I have got this, let’s do something positive. Let’s go and have a holiday of a lifetime. Let’s live.”  So we, that first year we planned, the whole year, and the second year we went  to New Zealand for six weeks. Wonderful holiday, the best thing I ever did, we ever did.  It was just fantastic and it made me realise that life’s for living. And I didn’t know anybody who had Parkinson’s. But then found out that [in name of area] where I used to live, there was a lady who I was, an old lady who I was very fond of, who I found out had had Parkinson’s for ten years and I didn’t realise. And she was a fighter. She baked every day and gave things away, and said, “I’m never going to stop, because if I stop, I’ll never get going again.” So I thought, “Right, that’s the same with me.  I’m going to do things that,  that I want to do, that I need to do.  If I want to work in the garden, I’m going to work in the garden.”  
People who felt that the diagnosis could have been delivered in a better manner suggested that more information, help with coming to terms with the diagnosis or a referral to a specialist nurse would have helped. Several had unanswered questions. Over time people had found out what they needed to know from the Parkinson’s UK, websites and nurse specialists (see Information & Support and support groups), but others would have benefited from an earlier pointer. Above all they deserved a better appreciation of the loneliness and isolation of the person newly told that they have Parkinson’s disease.

"I walked out of his office and I was sort of stood in this massive corridor in an old Victorian building and there was not a soul in sight and nobody to talk to and nowhere to go. And I just had to walk home on my own with this in my head until I got home." David.

Last reviewed May 2017.
Last updated May 2017.

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