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Parkinson's disease

Information about Parkinson's disease

Most people knew little about the disease before they were diagnosed. Few realised that it could affect people in middle age or that symptoms could be relatively mild. Those who had known someone with Parkinson’s often described an elderly person with pronounced symptoms.

 

When he was a child Humphrey knew two people who had clearly recognisable symptoms of Parkinson’s.

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Age at interview: 57
Sex: Male
Age at diagnosis: 54
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Well, I just thought it seemed a bit like Parkinson’s. I mean I, I’ve seen people with Parkinson’s    
all my life. The first one was when I was a small boy and my mother used to take me to visit the gynaecologist who’d helped me be born, who was a Jewish refugee living in London in a flat, and he was very bent and shaky. And, you know, she said, “This is Parkinson’s”. And when I was at boarding school there was a retired teacher, who lived on the premises in a rather remote flat, who had it and would come out at night because he was embarrassed to be seen in the daytime. So both of those I suppose might have set up more sort of fear in me than it, they did. But, oh, and I mean, you know, if you’ve got a series of symptoms building up you begin to think, “What could this be?” And it became a fairly obvious explanation so I don’t claim any great skill with that. 

The father of one of K’s friends had dementia as well as Parkinson’s, leaving her with a rather negative image of the disease. Alan said that it was hard to disentangle what he had known about the disease before he was diagnosed from what he had learnt since.

Some people were in a dilemma about how much they wanted to know about the disease. K did not want to spoil her life now by finding out too much, or thinking about it too much. Keith suggested that it depends on your personality how much you want to find out.

 
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Finding out about the disease has its pros and cons. Because the disease and the symptoms vary so...

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Age at interview: 74
Sex: Male
Age at diagnosis: 70
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I think a lot depends on people’s personality. Do they want to know as much as possible about it? I mean if people are curious and want to know as much as possible then join the Parkinson’s Disease Society and get hold of their booklets. And go along to the Parkinson’s support groups if there’s one in the area or Parkinson’s Disease Society branch because that’s where you can meet other people with the problems. I suppose before I was diagnosed I didn’t know anybody with Parkinson’s, never had met anybody with Parkinson’s. And then suddenly if you go along to these branches or support groups you meet other people in the same boat and you realise that you could be a lot worse. Mind you, that’s got good sides and bad sides, you might realise that’s what you’re going to be like in due time, few years.  

                                                      
I mean, you know, I’d rather have Parkinson’s than have a sort of a form of cancer that was developing rapidly. So things can be worse. But they can, you have to just keep adjusting to your own sort of problems. And sort of, that’s the other funny thing about Parkinson’s that it’s, it’s very individualistic. Not everybody has the same symptoms whereas lots of other diseases the symptoms are very, very similar and you can sort of go straight from the symptoms to specific diagnosis. Whereas with Parkinson’s, the symptoms vary tremendously from one person to another, and the combination of symptoms that people have vary tremendously. And this is a very sort of intriguing thing in a way but sort of also a very sort of frustrating thing. You’re not quite sure which aspect is going to get worse and which you can live with and which you’re going to find frustrating. So that’s one frustrating aspect of Parkinson’s.              

Many people we talked to had avoided potentially depressing information about the disease. Some asked family or friends to look at books and internet sites for them so that they could be warned off any material that might upset them.

 

They were initially careful to avoid upsetting information – Fiona would read things before her...

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Age at interview: 46
Sex: Female
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But I know my husband felt the same it was almost, you felt you read so much and you got to the point where that,  that was enough. You sort of, it’s been a bit like a drip feeder almost, it’s almost, protecting yourself really. I know everybody treats it differently but it, but because it’s such a lot to take in we’ve just sort of done it in chunks really.  

I mean it probably was all there it, it’s just finding out about it really I mean like you say because he is younger. I think in the early days we didn’t want to find out too much, which sounds a bit sort of, don’t know, it’s almost as if you’re protecting yourself and sometimes when we first subscribed to a magazine that we got I, I would have a look through it first and then, I would sort of  field some of the information and sort of share it with him. Because I was trying to protect him in a way really because I felt, some of the things I was reading about it was scaring me and I thought ‘well if it, if I feel like that, how’s it going to make him feel?’ I know there is a, there is a YAP magazine that we get now which is for younger people and that’s quite helpful. And I, I’ve started to, I’ve, I had an idea for doing a fundraiser so I’ve contacted a few other support group branches and I’ve had some emails from people, just with a few words of support or comfort saying, “You know, we know what you’re going through and if ever you want to give us a ring.” So that, been quite good, being able to do that really.
 
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Peter's colleague warned him off a 'frightening' book on Parkinson's. He has decided he would...

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Age at interview: 72
Sex: Male
Age at diagnosis: 67
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And I’ve had, again this colleague of mine that I mentioned earlier, he has always very, been a very technically minded, nosy person, so he bought a, himself a really big hardback book from somewhere or other, a medical book on Parkinson’s disease. He said, “I found it really frightening.” “So” he said, “I wouldn’t recommend it to you.” I said, “No.” He’d, he’d offered to lend it to me but with that warning and I said, “No, I don’t think I want to know.” I’m not saying that I’m, I, I don’t want to become, I don’t want to look ahead. I want to sort of just make the most of what I’ve got now and not worry about what, where we might be next year. Obviously we think, we have to think about certain things.  

Fiona and John said that it had been scary at first to read about what might happen. K, whose partner was diagnosed early, reflected that ‘blissful ignorance’ might have been better for a bit longer.

Tom thought that doctors must find it difficult for to judge how much to tell people because some 'will want to know the whole lot and [others] only want to know three days ahead.’

Sharon remarked that she had never wanted to be an expert in Parkinson’s and that her friends and family have learnt much more about it than she has. Her consultant said that he could not tell her what the future holds because it affects people in such very different ways.  Elaine concluded that, since the future is so uncertain, why worry about it? ‘Why waste the rest of our life worrying about something that may not happen?’

For those who do want to find out about Parkinson’s there are many sources of information, but several people wished that their medical team had not left them to find things for themselves. Specialist nurses were much appreciated by the people we interviewed, but many people did not have one at their clinic in 2008 and there are still some areas with little or no access to a specialist Parkinson’s nurse.

People used their local libraries, bought books, found other people with Parkinson’s, picked up leaflets at the hospital and pharmacy, used the internet and contacted Parkinson’s UK. David said that he always made a point of reading the information that came with his medication which is why he was dismayed when he developed side effects which he later discovered were known to be a side effect of the beta-agonist medication he was taking.
 

David always read the leaflets which came in the pill packets which is why he is sure compulsive...

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Age at interview: 54
Sex: Male
Age at diagnosis: 48
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The seriousness of it is is because the drug manufacturer it’s claimed knew that this was a problem with the drug and didn’t warn anybody about it as a potential side-effect. Being qualified as it were with a degree in psychology and neuroscience I’m very careful about all the drugs I take. I read all the instructions from word for word, everything, all the side-effects so that I know what I’m dealing with. There was absolutely no mention in any of these drugs about potential compulsive side-effects. And that’s the basis of the law-suits now. Not that it causes these side-effects but that nobody was warned about it and the drug manufacturer knew.
 

Rex found information in the library and then contacted the Parkinson’s Society (now Parkinson's...

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Age at interview: 70
Sex: Male
Age at diagnosis: 63
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So the first thing we did was beetle off down to the library to find out as much as we could about the disease. I don’t know that we learnt a lot. There was, it was a lot of highly technical stuff in the library. But where did we go from there, we, we sent away to the Parkinson’s Society for booklets on various aspects of the condition and took it from there really.

And the type of information that you were looking for. What was it you wanted to know?

Well how the disease, I knew little about Parkinson’s. It had never crossed my mind that that’s what was causing this tremor and I knew nothing about the disease and I wanted to know how it would progress, how it would manifest itself and what the prognosis was for me. My job was fairly demanding and it did entail a lot of driving. As it ended up I took early retirement in the end because I couldn’t cope with the job and the Parkinson’s. And thank the Lord I did do it.
 
Okay. I just wanted to ask you a bit more about the health services and the service that you’ve got from the health service. Is there anything you think could be provided for people with Parkinson’s within this area, that could be improved?

I think knowledge of the condition, information about the condition,could be improved greatly. And I feel, we in the branch to which I belong, have over the last couple of years, have started putting up literature in hospitals and GP’s surgeries and I would like to think that that is giving people the opportunity to find out just at the time when the, when the news hits them that there is some information and there is somebody they can talk to, because that’s vital.

Some consultants had actually discouraged people from looking for information, particularly on the internet, though as Fiona and John said, they did not always follow this advice.

 

Although the consultant advised them against looking at the internet, there was so much they...

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Age at interview: 46
Sex: Female
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… then came back and sat down and looked at us both and he said, “I’m sorry to tell you.” He said, “But I, I think you have the early onset of Parkinson’s Disease.” And, you know, [my husband] looked very shocked and I’d got all sorts of things going on in my head and he said to us, “I don’t want you to go away and start looking at things on the internet.” He said, “I’m going to ask you to come back and have an MRI Scan.” And he said, “And then we’ll take it from there.” But of course the one thing you do is you go back home and you look on the internet and you do start, you know, thinking ‘well what does this mean? What’s going to happen?’ and it, it was a real shock because it was something, I thought it happens to older people. Very naively I didn’t realise it affected younger people.

Several people had read the Parkinson’s UK magazine from cover to cover and found the website very useful. Steve, who joined Parkinson’s UK, said that he had no information needs because he knows that can find out anything wants to know. Karen agreed that the Parkinson’s UK website and DVD are both very good and wishes it had existed when she was diagnosed 6 years ago.

 

Wendy enjoyed reading a book written by an American woman who had rather similar symptoms and a...

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Age at interview: 62
Sex: Female
Age at diagnosis: 57
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I have two good friends and one happened to be a GP and the other is a practice nurse, whose husband has PD. And the GP friend said to me, “You need information, it is better to know the worst than to not know”. And so she put me in touch with the Parkinson’s Disease Association, who were very good. They sent me little bits of information as I requested them. They didn’t bombard me with information which would’ve been a mistake I think. And little by little I found out about PD, still having no certain diagnosis. But the more I read and the more I discovered the more sure I was that this was my problem.

The practice nurse friend lent me a book by an American who had had PD for ten years before she wrote it. And her circumstances were in some ways quite similar to mine, in that she had to give up teaching because of it and the emergence of her symptoms were similar to mine. But she was so positive, so upbeat, so “enjoy every minute” sort of person that she made me stop being afraid and helped me to cope with it. She gave very good advice such as see a physiotherapist, get some exercises to keep as fit as you can. And after a year I went to see the neurologist again and I said to him, “I want a diagnosis. I want to know. I don’t want to be unsure about what’s wrong with me”. And he said, “Yes I’m sure that you’re right. It is PD”. And that was five years ago almost exactly to the day. And I’ve joined the local Parkinson’s Disease Society. I’ve met some wonderful people and I think that being able to help them has helped me enormously.

Other people’s experiences of Parkinson’s were sought for various reasons including reassurance, practical tips and information. Gina asked around – wondering if anyone in her circle knew anyone else who had had the disease. She was very reassured to hear of a relative of one of her husband’s colleagues who had been diagnosed 20 years earlier and only had a shaking arm ‘which had never got any worse.’

 

Humphrey was curious about other people’s experiences of Parkinson’s and joined a group for...

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Age at interview: 57
Sex: Male
Age at diagnosis: 54
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Well, I looked, yes, I did, I mean both, the people I, I know now who’ve got it, are both, I discovered them by accident and then pursued them. I don’t go to the Parkinson’s Disease Society local meetings and I ought to. I’ve no objection to going, I’m not.

I did join, I, something called YAPPERS which is Young Adult Professional or something, people with Parkinson’s who are still up and about and not old, not old. The branch I joined seems to have petered out or if, if it hasn’t it’s lost me, my mailing list address. Nothing’s really happened. I must make, I must make more effort about that because I am curious to see what other people experience and, after all you can often pick up tips. I think it’s important to try to share problems and look for solutions jointly.

Karen said that contact with a girl who was in a similar situation really helped her to cope – they were ‘able to share each other's experiences and cry on each other’s shoulders and just really learn to cope together … that was a real Godsend’.  

David talked to no-one else with PD for the first few years after diagnosis and described it as a solitary, secretive disease. K, whose partner had been diagnosed early and had not told family or colleagues, said that it would be useful to hear that others are coping well with PD because the image can be overly depressing.
 
It may seem a bit contradictory but Tom said that he very much wanted to hear about other people’s experiences because everyone has PD in a slightly different way.
 

Natalia enjoyed meeting a local man with Parkinson’s and found a local group more reassuring than...

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Age at interview: 63
Sex: Female
Age at diagnosis: 55
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Yes, how old was I? Let me think. 55, I was 55, yes. Yes, of course I thought Parkinson’s was an old persons' disease, but again you realise when you read that it’s not necessarily.

Well, I deliberately didn’t really want to join the Parkinson’s, local Parkinson’s Society, because I thought I would be depressed if I went there seeing lots of people in wheelchairs and seeing people much worse than myself. But I did get in contact, somebody put me in contact with a well-known writer [who lives here] who had Parkinson’s. And we used to meet every month, and we used to meet over lunch and just talk about our symptoms, and unfortunately he died recently. But that was very useful actually. The only thing is that my Parkinson’s wasn’t progressing as quickly as his was. So that was a bit depressing for him. But to actually talk to someone who’s very articulate is, is quite helpful. And of course I joined the Parkinson’s Disease Society, the, the national one and I find their magazines are very helpful. And then recently my doctor friend said that she had a patient who had Parkinson’s and who was involved in the [local] Parkinson’s group, and would I like to meet her? So I rang her up and I, and I’ve been to one or two meetings. The first meeting I went to was, actually my consultant was there doing a question and answer session. And the people that were there all seemed much older than me. And they weren’t too bad at all.

They were, I think there was one in a wheelchair. You know, they weren’t in any bad state, which shows you that the Parkinson’s drugs have improved considerably. And this is in fact what the, the lecturer they had, my consultant said. He said, “I’ve been doing these talks for many years” he said, “And say fifteen years ago I would have been in a room like this and everybody would have been twitching and moving round. And here everybody’s sort of normal.” And that was quite heartening.

People often become acutely aware of media articles and programmes about PD and wonder if the media interest in PD has always been there, but unnoticed by them. Certainly people thought they now noticed any hints of medical breakthroughs, or reports of famous people who share their diagnosis. Gaynor read a book about the actor Michael J Fox after her children vetted it and told her it was OK to read.

 

Khadim was very interested by a television programme about Mohammed Ali and another about a...

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I only I’ve seen three programme on televisions, one was about Mohammed Ali the ex-boxer, yeah? That I heard that he has a Parkinson, due to the damage brain or whatever, and I saw one programme, the great interest, that a bloke had his surgery done in France, took twelve hours to operate, they put a cage on his head and whatever, you know, he was a journalist, British journalist. There was no cure available in the UK, or some other reason, and he had that treatment done in France and he recovered, and I watched that programme very carefully and deeply got involved in it and it looked so frightened, but then when I, when I heard that, they’ve cut the operation time from twelve hours to about four or five hours then it was encouraging that at least technology has gone advanced and, and the third programme I saw was in a local, not local, national newspaper that it say, I’ve still got a cutting upstairs, that a famous TV celebrity, you know, British celebrity had this problem and he was a cook on the TV, you know, and he used to cook brains and ears and, God knows what you know? He said it was a time that it’s his brain is being cooked, you know, you know? So he had a surgery done and, he explained in the newspaper, you know, he wrote the article himself, you know, that he’s feeling a lot better compared with what he was before, you know? Eating with the family on the dining table and the spoons flying away and things like that you know?

Gina who had compulsive gambling as side effect of her medication was given an article in US paper about a man whose wife had divorced him because of an adverse effect of his medication. She gave the cutting to her solicitor. She believed that her problem would not have arisen if the information which came with the pills she had been prescribed had indicated that gambling was a known side effect of this medication.

The internet was the first source of information for many people, but there were some concerns, particularly about commercial sites or biased information from people wanting to sell untrustworthy cures. The Parkinson’s UK site, Cure Parkinson’s and the European Parkinson’s Disease Association were all recommended (see Resources).
 
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Tom says that the internet has dramatically altered how people experience illness. Patients want...

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Age at interview: 40
Sex: Male
Age at diagnosis: 27
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How do you think the services could be provided, improved for people with Parkinson’s?

I think all people should have access to a multidisciplinary team. I think  people should have the ability to, to draw on other people’s experiences  because actually that is what people with Parkinson’s want to, want to hear. We don’t necessarily want to hear the science. We want to hear how other people cope with it. And I think the Internet is a huge, huge bonus for that. And, and is an important, important communication media to provide information to people with Parkinson’s. But actually the elderly generation at the moment don’t necessarily have access to the Internet. So I think things will improve and I think that there’s a lot more information coming to patients now. But it’s a slow process.

And actually scientists have got to and physicians need to listen more to patients. Because actually the way that we’re going to beat this thing eventually is by, through patient insight. And it’s very easy, it’s easy to sit in a chair and, and dish out your knowledge of, of neurology books but they don’t experience it. And, actually it’s, what is right for the patient is, can only be found by listening to the patient. And what is right for one patient isn’t right for another one so that, so listening is key. And because everyone has, with Parkinson’s is slightly different that, that if, if you listen then you, then you can learn what is right.

Natalia said that she had used the internet to find out about new treatments, though sometimes they turned out to be ‘pie in the sky’. She also warned that some information on the web can be frightening.

Alan had bought books on the internet, but now found that he was constantly getting alerts, which were not always welcome, whenever a new book on PD became available. People who did not have internet at home usually had a family member or friend who could look things up on their behalf.

 

David set up a website message board for people in the UK with Parkinson’s but when it started to...

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Age at interview: 54
Sex: Male
Age at diagnosis: 48
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So one of the first things I did when I was diagnosed was to get on the internet and start to search for information and I came across several websites which were support group type websites  for people with Parkinson’s and their carers where you all get together, exchange messages or post stories. And then I wrote a few short stories about having Parkinson’s about my experience. That were put on the website just for people to read and things like that. But all the websites we came across tended to be US based because it’s a bigger country. There’s more internet use in America and I think they’re more familiar with the technology so they tend to gravitate towards the internet so any website that pops up, yeah, so any website that pops up would tend to be not overrun by US based people but there would be a majority of US people on it. Like you could set a website for Parkinson’s disease and maybe get one in a thousand Spanish people come out so where do all the Spanish people go? Or one in a thousand Belgian people. Where do they go for information?

Anyway, on one of these US websites I met a woman with Parkinson’s who lived in Birmingham. And we got chatting and started exchanging e-mails. Then it turned out she was a web designer and we discussed the fact that every website you go to is US based and the information is US based as well. That was the important thing about these websites is that people give you information about doctors and hospitals and treatments and it’s all US based so it’s not really a lot of good to people in England.

So this friend of mine and I decided that we would set up a website that was based in the UK and contained UK based information. So that’s social services information, benefits information, NHS drug treatment, you know, all the everything would come from a UK based source. So we set up this website and I paid for it. Which was okay at first but then it started to grow we ended up we started with ten people, then twenty people and after a very short time, six months we had like a thousand members and started to be a lot of US members. So the message board started to fill up with US based information again and stuff like that. And as it expanded we needed more and more server space and it became and I was paying for this out of my own pocket with no way to get any income from it. And I didn’t want any income from it but I managed to carry on paying for it for a couple of years but one of the problems I found with it was that it was very difficult to control misuse of it. And that that was people coming on misusing the live chat rooms, misusing the message board.

People we talked to told us that they had found practical information and tips about living with PD, as well as advice about benefits and how to manage at work. However, the key question for many people was how their own disease would progress, but that was not answered. Some people found this uncertainty hard to live with, but it gave others found reasons to be positive.

Last reviewed May 2017.
Last updated May 2017.

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