Parkinson's disease
Mental disturbances with Parkinson's disease: depression, hallucinations and compulsive behaviour
This section discusses depression, changes in memory and intellect, hallucinations and compulsive tendencies. These are not by any means conditions which occur only in people with Parkinson’s disease but they are of interest here because they appear to be intimately tied up with the use of dopamine and dopamine agonist drugs used in Parkinson’s disease and their treatment.
A very difficult symptom to unravel in this respect is depression. Some people feel sure that their depression was caused by Parkinson’s disease and that the drugs used to treat the Parkinson’s symptoms also helped to remove their depression. Philip was certainly surprised and pleased to find that the severe depression he had attributed to the problems he was having with a painful hip joint disappeared once he started on anti-Parkinson’s medication so that he no longer needed to take an antidepressant. Elisabeth compared her depression to an iron cloak and described how it was affected by her medication: ‘I tried to get rid of it by taking increased amounts of medication and when it worked it was as if the iron cloak just slid off my shoulders’.
Humphrey's psychotherapist suspected that the depression he had could be related to his other symptoms. He finds that PD medication also helps his depression and insomnia.
Humphrey's psychotherapist suspected that the depression he had could be related to his other symptoms. He finds that PD medication also helps his depression and insomnia.
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And I was actually going to a psychotherapist at the time or shortly afterwards for depression, which has a link with Parkinson’s too because a lot of people, possibly even the majority of people with Parkinson’s have experienced depression. Now you might say that’s because they’ve got something to be depressed about, but it’s not as simple as that. It’s real clinical depression really, everything seems black. And I certainly had a, a lot of that around this time. And anyway the therapist I was going to eventually said, “I think you ought to try and sort out the physical diagnosis of your problems.”
You look it up in the encyclopedia, it probably says, you know, impotence and depression and so on and so on. But, no. I mean the depression I mentioned earlier, that is actually, that is interesting because the, the, antichol-, the dopamine agonist I take, pramipexole alias Mirapexin, they think of these names, don’t they, wonderfully cleverly? Buy one now! This, and when I started taking this I realized I didn’t need to go on taking the antidepressant and the sleeping pill I was using because this actually was, this was doing the job very well, and I discovered afterwards that it actually was developed as an antidepressant and then, they then discovered that it had beneficial effects on Parkinson’s as well. So it’s a, it’s a good little thing, this. And far from having side effects it has, has beneficial side effects.
Karen accepts that depression goes with the disease but feels that the only way to come to terms with it is to accept it for what it is.
Karen accepts that depression goes with the disease but feels that the only way to come to terms with it is to accept it for what it is.
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Unfortunately with Parkinson’s, depression is also a very common side effect of the actual disease and I am on antidepressants and have been for a while to help me cope with, not only the disease but just the general living with the disease.
Yes I think you go into a state of denial when you’re first diagnosed and you’re adamant that you haven’t got the disease, especially myself because for the first four years they actually thought I might have had MS. Nothing was conclusive enough to point to Parkinson’s and everything was ruled out but there was a possibility of MS. After four years the symptoms progressed and that was when they were able to say it was probably Parkinson’s. And it was then really that I felt very confused. Didn’t really believe the diagnosis because I’d already sort of gone through the stage of trying to accept one diagnosis although it wasn’t confirmed, and I think that’s when I started to go into denial that I didn’t have the disease. And that’s when you start to, just sort of curl up into a bit of a ball and, and not want to face the world. But at the end of the day the disease isn’t going to go away. You’ve got the disease. You have to learn to deal with it.
I don’t think you ever accept the diagnosis but you learn to live with it, and you learn to live your life as best you can. I think it’s very, very important to talk to lots of people, do what you can when you can, and if you can’t, well do it another day. You know, rest when you need to but don’t put off doing things you want to do because there’s always a way round something.
Others were less convinced and attributed their depression to other things in their lives (see Early symptoms of Parkinson's disease) but the most common feeling was that it is depressing to have Parkinson’s disease and that is why they were depressed. Rex said that he sometimes felt sorry for himself but that his wife was very good at encouraging him to snap out of it. Ruth felt desperately unhappy when she was first diagnosed, thinking that the disease would progress rapidly. In time she realised that it was not doing so and she also met other people with Parkinson’s who helped her to realise that life could go on.
Ruth's depression, panic attacks and paranoia were a reaction to being diagnosed with Parkinson's disease.
Ruth's depression, panic attacks and paranoia were a reaction to being diagnosed with Parkinson's disease.
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So do you say you’d felt depressed?
Oh in the beginning very, very down yeah. Didn’t want to eat, didn’t, I couldn’t sleep I was just pacing the floor all night thinking ‘what am I going to do? How am I going to survive I’ve got Parkinson’s Disease?’ I expect, I had a feeling that everybody was, everybody knew, when I went outside I used to think ‘they know that I’ve got that that’s why they’re looking at me like that’ and I was being totally paranoid. And I wouldn’t go into shops because I took panic attacks when I went into shops and I wouldn’t travel on the bus because I took a panic attack and, I wouldn’t go away on holiday or anything, and it just got to the stage where, I, I mean fleetingly I thought you know, ‘maybe I’d be better just taking a handful of tablets and being away rather than what I’ll have to go through as, as the illness progresses’ and then I thought ‘och no that’s just being stupid because it might never, you know, get to the stage where it’s really, really bad.’ I mean in the beginning I pictured myself in a wheelchair within two or three years, and here I am nine and a half years later, you know, and, not in a wheelchair, thankfully.
But in the beginning I was really, really down and depressed, felt dreadful, just. And I felt like there was nowhere for me to turn, nobody to, nobody that could under, I felt that nobody could understand the illness the way that I was feeling about it, I thought ‘nobody else knows because they have not got it.’ And it wasn’t until I spoke to somebody from the Parkinson’s that, I kind of felt, “oh well there is other people that have got it and they, they’re getting on with their lives, you know.” But , I really in the beginning just had a real hard, hard time accepting it.
Peter describes learning to handle the times when he is feeling down.
Peter describes learning to handle the times when he is feeling down.
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The thing I always think when I’m at my darkest, which doesn’t happen very often, I’ll see something on TV which will move me almost to tears and I think, “There’s always somebody . . .” That always makes me feel better about myself. You can always find somebody worse off than yourself. And, yes, I think that, that, that’s important to see things. It gives us all a reminder now and again sort of thing about how, how lucky we are.
I’m perhaps getting used to the idea of, “There ain’t no way out of this” sort of thing, you know. My wife will happily confirm that I’m a fairly quick-tempered man, which probably is the reason for my blood pressure, but I always cool off very, very quickly. But I, I, but because she is such a strong person, when she and I came together I found out I was on a losing streak every time I threw a paddy. So we talk, we, we talk. And I’ve learnt now to say to her in the morning if I’m having a tough time, which happens more and more now, I say, “Don’t speak to me this morning.” She says, “Oh, you’re feeling grumpy, are you?” And I say, “Yes. So don’t.” And she leaves me alone which is fine. Because otherwise she would, she would see that I was sort of under the weather and so ask lots of caring questions, “Can I do this? And can I do that?” because I mean she’s super, bless her, I don’t know where I’d be without her, and I would snap. So I, what I’ve learnt now to do is to tell Barbara when I’m feeling a bit down, a bit depressed. It doesn’t happen as much as it did, I don’t think. No, I think I’m, I’m getting, getting used to it sort of thing, you know. I’ve got to. I’ve got no alternative sort of thing. And at the moment good days are more often than bad days.
Having done some research on the internet Brian feels confident the changes he notices are to do with ageing and not dementia.
Having done some research on the internet Brian feels confident the changes he notices are to do with ageing and not dementia.
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...they don’t really know what causes the cells to die. They don’t know what these strange Lewy bodies or Levy bodies are that appear in the brain. It’s a symptom something like what happens with Creuzfeldt-Jakob’s disease or senile dementia. That, that I would be frightened of but probably if I had it I wouldn’t be. But of course my memory’s not getting very good, memory, your memory, it gets worse anyway as you get older and I notice it more. Trying to remember the name of a plant or, or if somebody, somebody who I’ve recently met I can’t remember names, only nouns and names. Another rather frightening thing if, if you’re trying to give lectures. If you speak off the cuff, if the names don’t come it’s embarrassing.
David says his problem finding the right word is not due to his memory failing.
David says his problem finding the right word is not due to his memory failing.
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I well, I know it’s not me getting older because I’ve done other research projects for other people. I’m quite happy to do to do research things. And the last couple I’ve done have both included cognitive tests beforehand for so you can have a cognitive assessment. And basically, what they’re looking to is things like Alzheimer’s issues so you do the usual things about object recognition, what day is it, who’s the prime minister and moving on to number remembering. What your short term memory is like. So you start off with two digits, one two, and you have to repeat it. And then it goes to three then it’s and up to nine. And I’ve found, well, the guy who was doing it on the add up to eleven digits and I could do eleven digits, remember what he’d read them out and I’d say them back. And I could also do it backwards up to eleven which he said he’d never seen anybody do that before. So but it’s only a technique you learn for short term memory.
So that’s what I’m saying. I’ve not got a memory problem in fact I can still remember some of the numbers now just thinking about it going through my head and it was two years ago. But I, you know, I haven’t got a memory problem. It’s a a retrieve a problem of retrieval and it’s particularly of names or yeah, names in particular but sometimes other words. And it might be it might be in a sense and I might be talking to you, I’ve probably done it a few times today where we’d just be talking away and all of a sudden I’d go and I’d stop talking it was because it’s not because I’ve forgotten what to say, that word that was in that sentence and it just won’t come out of my head. I just can’t get it. It’s, you know, I’ve searched through the memory filing cabinets for it. I know where it is and I know which drawer it’s in but I can’t find it. So I have to develop a technique for overcoming that so then I have to. I know what the word is so then I have to find in my brain other associations with the same word to find another path to find it which is why sometimes I stop and think for a second and try to find another way to.
Another curious symptom which again seems to be both part of the illness and to be connected with the medication used are hallucinations. On the whole these seem not to be of particularly disturbing visions. In some cases the person having them was not altogether sure whether they had really happened. Helen thought she had seen a large rat while she was in bed but something about it convinced her later that it hadn’t actually been a real rat. Philip sometimes felt there was someone standing behind him while he was working at his computer.
Andrew has had many hallucinations in which he sees his late wife.
Andrew has had many hallucinations in which he sees his late wife.
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I get, get a lot of hallucinations now.
Do you?
Yeah I’ve just got through a bad one. I’m back to normal but my wife and my daughter were sitting there, but they don’t talk they just stare. And my daughter’s, my daughter’s sitting at the back. It’s a hard thing to talk about.
Are they very clear the hallucinations?
Extremely, extremely clear. It’s company even though they don’t move or talk, they’re there.
How long does it last for?
Oh it’s there all the time, most of the time. It’s my daughter at the moment.
I’ve had it for a wee while. But the funny thing was the, they’re moving, and they’re talking because when I was, I’ll live with that, you know, they, they didn’t do me any harm. But one day my wife was standing at the door talking and suddenly she stopped and went into the kitchen and I went to the kitchen and says, “Why have you stopped?” No, it was hallucination. I think it was between the two operations or close to the second one, when I was getting these hallucinations. But they stopped. About six months ago I’d say they started.
And is it always your wife and your children?
No, no. I occasionally get, if I’ve had a, you’ll come up tomorrow or the next day. Somebody you’ve talked to. I went to the doctor and I said, “I’m seeing things.” “What are you seeing?” I say, “My wife.” She died two years ago.
Jean's hallucinations were very clearly related to her medication as she discovered after she was admitted to hospital with what doctors initially thought was a urinary infection.
Jean's hallucinations were very clearly related to her medication as she discovered after she was admitted to hospital with what doctors initially thought was a urinary infection.
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Well, I went in because I started to hallucinate. And they were sorting me tablets out. But one night I was pretty bad, very bad. Not that I remember. I remember shouting, and I’ll never forget that. And the doctor or someone come round here, it wasn’t my doctor, no way, and they said to, “Go to the hospital tomorrow.” Which [husband] did do, he took me up there. And that, that was a Friday, and then they said, “You’ve, you’ve got a water infection. So you should really be in.” That was on the Friday. And on the Saturday when I went up there, you had to see the doctor obviously to get in, they said, “I don’t know what this one’s here for. She needn’t be here.” So somebody said, “She’s got a water infection.” He said, “She, no, she hasn’t.” He said, whatever the word was he used, he said, “That’s common they get now and again when they’re on tablets.” ”But they was in, they were adamant I was going to have to stay there. So that was there, that was on the Saturday. And on the Saturday they decided, “We don’t understand your case, so we’ll take you off your tablets.”
So at this point they’d taken you off the tablets?
Yes.
And had you started to have all the symptoms come back yet?
Yes, that’s what I say. I couldn’t walk and I was shaking, just shaking. And [husband] got me up to the, well, he phoned up the professor and he got me up there.
And did he say that the hallucinations had been caused by the tablets?
Yes.
He did? So did he change the tablets?
Yes, he knocked them right down. And in actual fact when he knocked them down, that was the start of my legs starting to ache like. But as he said, he’s having to find a happy medium, you know, with the tablets they ain’t working. He said like, “If I, if I give you more, you’ll be perfect walking all of the time and you wouldn’t ache. But” he said, “you’d have these hallucinations.” So he had to cut them down.
Side effects of medicines for dementia and compulsive behaviour
Compulsive behaviour amongst people with Parkinson’s disease is linked to medication use. The problem can arise with both dopamine and with dopamine agonist drugs (see Dopamine receptor agonists). Such effects are now listed in the information issued with the medication but this is relatively recent. In some cases the risk had been explained to people prescribed the drug, but by their very nature these disorders involve secretive behaviour so that people tended to deny the problem when questioned by their doctor.
Joe experienced a kind of compulsive behaviour which seemed to him excellent till he was warned off it.
Joe experienced a kind of compulsive behaviour which seemed to him excellent till he was warned off it.
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There’s a drug I was on for some time, about ten years ago, I wish I could remember it, I can’t remember what it was called, but I was doing it, a creative a writing course in [city] at the time, and it made me very creative, and I didn’t need much sleep, I slept very few hours and I wrote screeds and screeds but when I saw again a psychologist I was seeing at that point because I was suicidal, he said, “You’ll have to stop this, this drug because you’ll crash. Do you feel wonderful?.” And I said, “Yes I feel marvellous.” He said, “I’m sorry you have to come off.” Pergolide that’s what it was called. So that was a drug that affected me.
Elaine's partner has commented that she is shopping a lot.
Elaine's partner has commented that she is shopping a lot.
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My partner thinks that I’m shopping too much which maybe I have to agree with him because I do have to go shopping a lot of the time. I know it sounds silly but I’m not happy unless I’ve bought something when I go out which I wouldn’t have done years ago because I was very, very conservative, you know, savings put away and everything covered. But I am a little bit more nonchalant about it nowadays I have to say which could be could be connected. I have been warned that are there are there is a possibility of that happening so I need to pull the reins in I think and see what. But then I am a woman so is it just being a woman because women like to shop don’t they, well all my friends do anyway.
Helen's compulsive shopping turned into secret online gambling with disastrous consequences.
Helen's compulsive shopping turned into secret online gambling with disastrous consequences.
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It started off started off with shopping and apparently there are three things there’s shopping addiction, a sex addiction and a gambling addiction and I had the shopping one originally. But people I used to have a lot of parcels come to the door and then people were noticing so I think then it went to I obviously I had this urge to, they say it’s to do with the dopamine isn’t it, the reward centre in your brain or something. You it lacks reward so you over compensate by this addiction to shopping or gambling, you know, to give get a it’s like a short term fair thrill I suppose, I don’t know. And because I think people would notice my shopping more I must have thought, I don’t remember, but I think obviously gambling was more discreet.
Did you think there’s something wrong here?
I think I did towards the end because it got very bad. I was losing a lot of money in a day, a huge amount of money to be honest and I think something must have triggered in my mind, I don’t know what, one day I thought, “Oh my gosh, what am I doing?” And I just took all my courage to own up but I did and it’s the best thing I ever did because I didn’t realise it was the drugs I just thought it was me breaking down really. And I got very depressed but as soon as I knew there was a reason and that it can be sorted and it was and it was turned around very, very quickly. But because because I can’t now have any drugs linked to that type of thing at all because I’m obviously susceptible to it. So and to, you know, if anybody else had been sat there and told me this I wouldn’t have believed them so so for me to have gone through it is quite unbelievable really.
Gina's doctor asked if she had noticed anything unusual like gambling but she denied it. By the time of her next appointment 1 year later she was '75,000 in debt.
Gina's doctor asked if she had noticed anything unusual like gambling but she denied it. By the time of her next appointment 1 year later she was '75,000 in debt.
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I had a tablet that they prescribed me and I was okay for a couple of years. And then they prescribed me another tablet, called Ropinirole back in 2002. When was it? About three years ago? About three years ago, yes, Ropinirole. And I started to take it. And we’d just got the Internet on the computer. So I happened to go into a gambling site on, on the computer and found this Virgin bingo game. And we, we, me and my little boy were on there playing bingo and I won £17. And I thought, “Oh, this is good.” And then I started to play this bingo more and more and more. And then I got into this, slot machines. And I thought, “God, this is really good. I’m really enjoying this.” And this went on. And I was playing it every night, coming home from work and I, really enjoying it. My husband knew I was playing and stuff. And I thought, I didn’t think that anything was wrong. And what happened next was, I went to the hospital four months later and she said, “Are you doing anything odd?” She, I said, “Well, no” and I said, “I’ve been playing a bit of bingo.” And she said, “You’ll have to watch that.” And I said, “What do you mean, you’ll have to watch it?” And she said, “Well, because some tablets can give you addictive tendencies, and gambling is one of it.” And I said, “Oh, but I’m not gambling, am I? I’m only playing bingo and having a go on a few slot machines.” And I didn’t, really take much notice of what she said. And I got into such a state with the tablet that was giving me this addictive ten-, tendencies. I gambled and I gambled and I gambled. And we’re lucky to still have our house at the moment because I, I spent lots and lots of money, which we didn’t have. So a year and a half, two years ago we went insolvent, still because I couldn’t, we couldn’t pay the bills. My husband really, was really upset about all this. And we, we manage by hard work now. We’re both, my husband works seven days a week most weeks and I do a bit of overtime and we’re just managing to keep our heads above water, because of this gambling thing when I spent all this money. But I didn’t realise, I’d never gambled before and I didn’t realise that gambling was such an addictive thing. And I stopped taking the tablets. They changed my tablets and it stopped. I don’t, I do my lottery ticket once a week, but the gambling stopped. I don’t want to do it any more. So that was a really really bad experience for all of us.
David's first dopamine agonist caused hypersexuality. When he was changed to another type he developed compulsive gambling.
David's first dopamine agonist caused hypersexuality. When he was changed to another type he developed compulsive gambling.
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I may talk in a minute a bit more about that but after being diagnosed initially my initial drug regime was a agonist drug called requip (ropinirole) which was great. It controlled my symptoms very well. And it can take quite a long time to get a stable drug regime and so I started on a very low dose of requip and you have to build it up over weeks and months and even years sometimes. And once I got on to the higher dose I saw some changes in in my behaviour and and specifically I’m not embarrassed by talking about this it’s just looking for the right way to say it, I became more sexually active. And I just put it at the time I put it down to the fact that I wasn’t working anymore and my wife was at home looking after me and we just had more time to engage ourselves if we wished to. And I just, you know, I wasn’t concerned about that and then by chance I read an article about requip causing problems with hypersexuality. So at my next appointment I discussed this with my doctor, a neurologist, and by this time I’d found that this increased amorousness if you like, was was spreading into the outside world. I wasn’t becoming a problem to- I wasn’t I wasn’t trying to get another female as it were. I wasn’t trying to to engage with other women it was just that I used to, to be blunt, used to spend half my life walking round with an erection. And that was a problem and it was uncomfortable.
So it was then when I saw the neurologist that he told me all about this thing and changed my drug and changed me onto a drug another agonist drug called mirapexin. The hypersexuality problem disappeared and everything was going fine and again, I was building my dose up to the to the requisite treatment level. And I started to notice another change in my behaviour but this time is was gambling. Now, I’d had a little flutter every now and then, Grand National, National Lottery and things like that but I’ve never been a gambler. Never been to casinos and things like that but again I found myself walking through town and popping into a bookies and having a quick bet and it turned out from having a quick bet to spending an hour in there. And after a few months, I found I was spending all day in the book in the betting office playing various roulette machines, going to casinos and over a fairly short period of time, probably six months, my wife and I lost virtually everything we had.
A striking feature for all these people caught up in compulsive behaviour was that it disappeared when they were taken off the offending medication or the dose was greatly reduced. An intriguing aspect of this is their experience that while on the drug, and behaving in a way that they would never have done otherwise, they were turned into someone who they cannot recognise in themselves. As Helen said, ‘I don’t even think about it now, it’s unbelievable how you can be so obsessed with something and then it just stops. And how can a drug do so much to change somebody and if I hadn’t owned up to it, you know, I’d have got into terrible, terrible trouble and I would have just become more of this person that wasn’t me really.’
David fears that a drug could so manipulate his identity that he is willing to forego certain improvements in his symptoms rather than risk it happening again.
David fears that a drug could so manipulate his identity that he is willing to forego certain improvements in his symptoms rather than risk it happening again.
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It has been suggested to me now that a a combination of the levodopa based drugs and an agonist, a low dose agonist, might be beneficial to me. And I probably wouldn’t have the same problems again because it would be a very low dose compared with to what I was taking before. But in a sense although I still have visible symptoms and still have symptoms that cause me problems in my day to day life, I think I’m content to the extent that it’s not worth the potential risks of doing it again. Because of the risks, the problem with it is especially Mirapexin and the gambling is that although you know you’re doing it it’s not a problem. It really, you know. Even now afterwards when I with hindsight of this happened two or three years ago, and everything that my family said to me and all the people that that rallied round to help us out and everything and, deep down inside I still I’m still not sure that there was actually anything wrong with me. I know it sounds silly to say because it was so clearly a problem but inside of me, in this little tiny corner, I’m not sure that I believe it that I could do something like that. That it was me. That it was a problem. So if I took the drug again, would I be aware that this tiny little problem was creeping up again. That's what frightens me.
'The agonists are very good at controlling symptoms but do have many more side effects in my opinion than levodopa based drugs do. The ones I’ve described are extreme and really quite rare. I wouldn’t want anybody to worry about that too much. Be aware of it but, you know, don’t be concerned because it’s quite rare. I mean I through my website I know thousands and thousands of people in the UK with Parkinson’s and it’s only about two or three people who’ve suffered the same way I have. So it is really quite rare.'
Owning up to the compulsive behaviour was the most difficult thing for them to do but as they all agree the best thing they ever did.
Helen couldn't at first own up to her secret gambling; it was a huge relief when eventually she did.
Helen couldn't at first own up to her secret gambling; it was a huge relief when eventually she did.
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And he asked me if I had any problems and I lied and said, “No.”
Because I because my husband was sat there or I don’t and even if he wasn’t I don’t think I would have been big enough to have said actually, “I have a problem.” Because it’s quite a big thing to admit to really. It’s quite I was very ashamed. I’m not ashamed now because I didn’t think it was my fault so I can talk about it quite openly but, at the time, I was very, very ashamed.
Well, I it’d be good if somebody else listening can think, “Oh my God, that’s me.” And because it is the best thing to it’s the hardest thing you can ever do, it’s a bit like saying you’ve had an affair isn’t it. It’s the hardest thing to sit there and face somebody you love and tell them something awful that you’ve been doing for so long. But it’s the best thing I ever did and it almost instantly the pressure lifted from my shoulders instantly that I was owned up at least.
Last reviewed May 2017.
Last updated May 2017.
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