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.

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.

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. AndI 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.

Butin 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 knowBut , I really in the beginning just had a real hard, hard time accepting it.

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 thi 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 morningShe says, Oh, you’re feeling grumpy, are youAnd I say, Yes.So don’tAnd 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.

…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-Jakobs 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.

I well, I know it’s not me getting older becauseI’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 includedcognitive 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, whos the prime minister and moving on tonumber 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 problemin 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 oryeah, 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.

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 stoppedNo, 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 thingsWhat are you seeing I say, My wifeShe died two years ago.

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 saidto, Go to the hospital tomorrowWhich [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 inThat 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 hereSo somebody said, She’s got a water infectionHe said, She, no, she hasn’tHe said, whatever the word was he used, he said, That’s common they get now and again when they’re on tabletsBut 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 wasthe 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.Bu he said, you’d have these hallucinationsSo he had to cut them down.

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 apsychologist 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 marvellousHe said, I’m sorry you have to come offPergolide that’s what it was called.So that was a drug that affected me.

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 andsee 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.

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 doingAnd 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.

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 goodAnd 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 thisAnd 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 oddShe, I said, Well, n and I said, I’ve been playing a bit of bingoAnd she said, You’ll have to watch thatAnd I said, What do you mean, you’ll have to watch itAnd she said, Well, because some tablets can give you addictive tendencies, and gambling is one of itAnd I said, Oh, but I’m not gambling, am I?I’m only playing bingo and having a go on a few slot machinesAnd 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.

They took me off the tablets straight away.The neurologist was really concerned about me.Because I, I just broke down crying.I said, you know, I’m lucky my husband is still here reallyBecause it, it was, it was thousands and thousands of pounds that I gambled.And she took me off in the April, and it took till June, beginning of June.And I still gambled a little bit, but it just went away.

I may talk in a minute a bit more about that but after being diagnosed initially my initial drug regime wasa agonist drug called requip (ropinirole) which was great.It controlled my symptoms very well.And it can takequite a long time to get a stable drug regime andso 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 somechanges in in my behaviour and and specificallyI’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 anymoreand 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.Soat 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 toto 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.