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.

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.

I couldn’t I don’t honestly see how I could cope with working and and being tired.

Do you find that depressing?

No, not really actually. Bizarrely as it sounds and II’ll tell a little short story as to why it’s not depressing.I mentioned to you perhaps when we were talking before about this.I went back to university when I was forty. And I decided, you know, I really enjoyed it.It was one of the best times I’ve ever had in my life three years at university.Well, it was four years because I had to do A levels first and then I went to university.

And I always said to my wife, you know, If I win the lottery, I’m going to go back to university and just stay there and do course after course after course. Because it’s just learning stuff and education is is just so good. And what I say now to people now is that having Parkinson’s in a way is like winning the lottery for me now because I’m doing the Open University.I’m on the internet.And I don’t just I don’t mess about on the internet with chat rooms and things like that. I am teaching myself about particle physics and stuff like that. And I spend hours and hours and hours reading books. I’m a big fan of poetry and and classic literature and I read, you know, I must have read more books in the last two or three years than I read in the rest of my life put together.And and I enjoy educating myself and learning things all the time.I don’t. Like I go out for a short walk every day and I take my wildlife and wild flower guide with me and and I’m looking for things to learn about all the time.And it’s great.That that was what I would do if I won the lottery would would just teach myself stuff all the time.So in a way I feel fortunate that I can do that and engage myself in that way.

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.

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.

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.

ne of the things that helps me walk better than most people with Parkinson’s and deal with it better is thatin my mind I have two different ways of walking. Right, I think one of the things that happens when you walk isit’s something that you do as part you do maybe twenty, thirty million times in a life you take a step.So you don’t think about it at all. But you have this short circuited system. You don’t need to think about it so the system the system that propels you when you’re walking becomes shorter and shorter and shorter because it doesn’t need to lots of processing to think about it.

But when I was eighteen I learned a different way of walking.I joined the army and I had to learn how to march which although it looks similar to walking, it’s actually different. So I have two different ways of walking in my brain so what I do is I employ marching as a means of walking better than I would walk if I just casually strolled along.

And the two techniques I use are flagstones to keep myself to keep my cadence and and stride correct. Cadence is the speed at which you take paces and stride is the length of your pace. So I use flagstones to keep the length of my pace correct and I have a brass band playing my head to keep my cadence correct.

Because as a soldier I’m very used to marching to a drum or a brass band and when I want to march to get somewhere not forcibly but, you know, deliberately walk properly like when I walked with you from the station I’m listening I’m in my head I’m keeping pace with a drum like from my walking.And that’s what I do I march really. And the other thing about marching as well is it also helps me to keep my arms swinging because if you don’t think about it my arms stop swinging and or swings when it shouldn’t do and things like that. But no, it doesn’t swing like a normal person’s arm.

But thenanother thing that I remembered waswhere I worked I’d got this nickname of shuffler and I really didn’t know why.I didn’t know what that was about or anything it was just I just thought it was something people, you know, decided they were going to call me that but it dawned on me afterwards that I was probably not walking properly for quite a long time before I was diagnosed.So that I picked up this nickname of shuffling because I tended to shuffle more than normal which annoyed me because I was a soldier and I, you know, used to pride myself on being upright and walking properly and etcetera but.So that was probably six or seven years before I was diagnosed that that happened.And with hindsight again I can see areas of my life where my co-ordination wasn’t as good as it had been previously but I’d just put that down, you know, to to middle-age and getting a bit older and.But apparently I, you know, I don’t think it was, it was probably the early signs of Parkinson’s.

I liken it to being a cartoon character, you know, when you see then run off onscreen and their legs start going but they don’t go anywhere. it’s like people take walking for granted but when a normal person walks what you’re actually doing is falling over in a controlled fashion.You allow your body weight to move forward and gravity to pull your body forward and you push your legs underneath your body and that’s how you walk forward.What festination does is it slows I think it slows down it seems to slow down the response of your legs to gravity pulling your body forward.So your body falls forward.Your legs don’t get there quite in time so you have to start moving your legs faster and faster and fa..until you end up with like this almost almost falling almost walking, speeding quick little tiny steps trying to catch up and it’s like this your legs are trying to catch up with your body in moving forward.

And when when does this happen for you?

As each drug phase starts to go to go down and it happens more and more then. And at other times like stressful times, like I discussed with you earlier on about being too hot, the weather too hot, the weather too cold or just a generally stressful time will.I think what it does it takes my mind away from concentrating on what I’m supposed to be doing because although you don’t have to think about walking, I have to think about walking when I’m walking.So things that distract me from thinking about what I’m supposed to be doing can cause that to happen.Like quite often when I’m walking with somebody if we step down a curb, if I’m trying to talk, I step down the curb and not.. my body doesn’t respond to stepping down a curb.So I don’t know if you’ve ever done it where you’ve stepped down a step and not realised it was there and you hit the floor with a jar because you’ve not bent your knee or whatever and not ready for that sudden stop at the bottom.And then that happens a lot as well so I have to think carefully about walking.

Like when I go out for walks I have to walk on footpaths.I can’t walk on grass because in grass you can’t see exactly what the solid surface is like because it’s covered with this layer of grass and you don’t know what you’re going to put your foot on that’s going to make you go over or fall.But walking next to the grass is good because if you do fall you fall on something soft.

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

I go out every day for a stroll and before I could walk better earlier on than I do now because obviously I’ve progressed but I could walk maybe a mile or so, you know. So I’d get the bus into town, it’s local town where we lived, and I’d just have a bit window shopping, pick up a bit of fruit and veg or whatever, you know, just so I wasn’t stuck in the house all the time. And it was about eleven oclock in the morning and I had a carrier bag with a bit of fruit and veg in it and I and I tripped over a kerb and fell. And of course the anxiety of falling makes my tremor worse than it is so I’m now half on my hands and knees, because my arm’s shaking and not being able to speak properly.

And an old lady came up to me, was on a walking stick, must have been well in her sixties or seventies, came up to me with a walking stick and I thought she was going to be helpful. And what she did was she poked me in the ribs with her walking stick and said how disgusting it was that I was drunk at that time of the morning. And, you know, and I thought but It I it bothered me at the time.I managed to scoop myselfand get myself together and got a taxi home. And I was a bit concerned about it at the time. But afterwards I thought it’s really quite funny, you know, but yeah, I suppose some people could find that quite traumatic and that’s one of the things people think like, you’re drunk because I don’t walk in a straight line, you know. Or stagger a bit or whatever. That bothered me at first.

But when I was working at the bakery before I was diagnosed, if somebody was off I had to step in to do one of the worker’s jobs and one of the things was packing into bread into trays. Now we don’t just pick up these are coming off loads of bread coming off one a second off the production line. So you’ve really got to pick them up with your hands, throw them from one hand to the other, and put them in the tray. So you’re picking off of a conveyor belt, throw it to other hand, put it in the tray and it’s one a second. it’s a really tough job. Now when I first started at the bakery I could do that. I was probably one of the quickest at doing it, you know, but when it was coming closer to me being diagnosed I had when I had to stand in for somebody else I found it really, really quite difficult to cope with that. To get the co-ordination right to catch it in one hand and I was, you know, throwing them over the top, throwing them over my shoulder. And occasionally, not all the time but, you know what I mean, it was just becoming more and more difficult to co-ordinate that action. So I don’t think I would be able to very effectively catch anything with my right.

One of the major problems I had at first was the fact that I’m left side affected mostly and I’m left handed so I’ve had to learn to do lots of things right handed that I could never would never have dreamed of being able to do right handed before. About the only thing I can’t do right handed is to actually write properly but everything else, tin openers, scissors all the things that I’d never tried before I can now do right handed. So you again you just have to learn to do find another way to do what it is you want to do to achieve it.

I mean they say silly things like stirring tea when if you’ve put sugar in learning to stir it up. If I try to stir with my left hand I end up sloshing the tea all over the place so I what I do is I don’t try to stir, I just hold the spoon and let my tremor stir it for me. And it sounds silly but I can because the tremor in my hand will make the spoon wag about in the cup but if I try to do it deliberately I wouldn’t be able to do it. And that it’s just a silly thing but that’s one way I’ve found of stirring tea.

I do a lot of swimming. I love swimming because it’s a safe exercise because I can’t fall. And it’s the most pain free exercise I do. I do a lot of exercise I don’t, I like to keep myself fit, but it’s the most pain free exercise I can do because you can swimming is one of those things where you can put as much or as little effort in as you want. You can lie on your back and just flip your legs a bit and float and that’s fine or you can swim purposefully and forcefully if you want. When I go swimming I always make sure I tell the lifeguard or the attendant that I’m there and that I’ve got Parkinson’s disease. There probably won’t be a problem but if I do get a problem what I will do is I put my hand up in the air and that, you know, just the warn them that I am there. But I try to swim down the left hand side of the pool because my left side is weaker than my right side.

If I was going to veer off course I would veer into the side of the pool rather than veering out of away from the side of the pool. So, you know, but swimming is good. I tried it in the I swim in the sea a lot when we go on holiday but, again, I don’t swim out. I what it is I walk out and swim along the beach and I always swim on my left side facing the beach so that if I do go in a circle, and I’ve tried it I’ve tried swimming for like a minute with my eyes closed in the sea and I actually go round in a circle because of the difference in power on one side than the other. Even if I try harder with my left hand side it just doesn’t work out that way. But swimming is good. I would recommend it to anybody.

I do a lot of swimming. I love swimming because it’s a safe exercise because I can’t fall. And it’s the most pain free exercise I do. I do a lot of exercise I don’t, I like to keep myself fit, but it’s the most pain free exercise I can do because you can swimming is one of those things where you can put as much or as little effort in as you want. You can lie on your back and just flip your legs a bit and float and that’s fine or you can swim purposefully and forcefully if you want. When I go swimming I always make sure I tell the lifeguard or the attendant that I’m there and that I’ve got Parkinson’s disease. There probably won’t be a problem but if I do get a problem what I will do is I put my hand up in the air and that, you know, just to warn them that I am there. But I try to swim down the left hand side of the pool because my left side is weaker than my right side.

If I was going to veer off course I would veer into the side of the pool rather than veering out of away from the side of the pool. So, you know, but swimming is good. I tried it in the I swim in the sea a lot when we go on holiday but, again, I don’t swim out. I what it is I walk out and swim along the beach and I always swim on my left side facing the beach so that if I do go in a circle, and I’ve tried it I’ve tried swimming for like a minute with my eyes closed in the sea and I actually go round in a circle because of the difference in power on one side than the other. Even if I try harder with my left hand side it just doesn’t work out that way. But swimming is good. I would recommend it to anybody.

I think one of the reasons I’m successful at controlling my symptoms with this tablet is because I’m very strict about my drug regime. I take the tablets at exactly the right time, not five minutes later not five minutes earlier, at exactly the right time. I have two little pill boxes that have an alarm on them. One that is small enough to carry in my pocket outside and one that I use in the house. When it peeps, I take the tablet. Not a minute later, not a minute before. And I think just keeping a rigid control over the dose level helps me a lot. Because I know, I’ve seen other people go, Oh oh, I’ve gone fifteen minutes over my time Or something, you know, and they’ve started to run down, then you’ve got to take a tablet, then you’ve got to wait while it starts to work again and so you’re going through all these like peaks and troughs. By being rigid about when you take your tablet it helps to smooth out all these peaks and troughs. And each individual finds their own best time. It may be two hours and fifteen minutes, maybe two and a half hours or maybe slightly less I say each individual over time will find out what’s the best works for them. And so I found I think that’s a very important part of the drug treatment is time and doses, and being careful about that.

I do have some dystonia now butfor me fortunately at the moment it’s only in my feet now.I can’t move my toes without them being on the floor.

Loaded up I can’t just freely just put my feet up and twiddle my toes backwards and forwards otherwise my muscles go into spasm and my toes curl up and that’s a sort of dystonia, you know, where the muscles contract uncontrollably.So it’s not a big problem for me.I just avoid twiddling my toes I know it sounds silly.But something like when you wake up in the morning you lie in bed and stretch and you stretch all your muscles.I can’t do that with my feet.I can’t allow my feet to stretch uncontrollably otherwise the muscles will just go into spasm and my toes will either curl right up or go right down.

Well, the levodopa which is undoubtedly the best drug for symptom control but not necessarily the best drug for each individual simply because it’s believed at the moment that levodopa may have a have a limited life as it were in individuals. And that and that and it’s best to leave it until absolutely necessary before you start using levodopa. it’s possible that each individual may only have something between five and say fifteen years until levodopa stops working for them. But there’s some debate as to whether that’s actually the case or not or whether it’s quite a complicated issue. It may be because people don’t get put on to levodopa until they’re older and therefore are getting towards the end of the Parkinson’s regime as it were. But for people like me who are younger may have twenty or thirty years to go yet. It might not actually be the case that levodopa runs out but anyway it’s believed that that’s the that may be the case that the effectiveness runs out. So they tend not to use it unless it’s necessary.

But now over the first six months one of the things I think a lot of people do is is try and look back and see where it started. Why did I get Parkinson’s? And what caused it and, as we know, there are there could be many causes of Parkinson’s and none of them are quite clear. But it some of the things I’ve read led me to believe that about five or six years previous to being diagnosed I’ve had a serious kidney and prostate infection which took a long time to clear up and I was on very high strength anti-biotics.

And there has been some links between anti-biotics and Parkinson’s due to toxin release in the death of bacterial cells maybe so I hung on to that as a possibility but whether or not that’s actually true, you know, remains to be seen and and in the end of the day, it doesn’t really matter what caused it. I’ve got it now and that and that’s that.

The question shouldn’t be Why did I get Parkinson’s Disease The question should be, Why haven’t you got it And it may be the case that everybody gets Parkinson’s disease so the question then arises not as why do some people get it. Some people don’t. The question should be why do some people get it sooner than other people. In effect you live long enough you will get it.

There are some studies which have suggested that in the US up to twenty five per cent of all Parkinson’s patients in the US have been misdiagnosed. They didn’t have Parkinson’s disease in the first place but one of the things about Parkinson’s and levodopa particularly is that if it’s not Parkinson’s disease, levodopa doesn’t work. If it’s something else, then taking levodopa doesn’t help. So the fact that when they try you on levodopa quite often what they do even if it’s not going to be your initial like it wasn’t with me, I was on Mirapexin and Requip at the beginning, they might give you some levodopa just to see if it works as a diagnostic tool. So I’m in the in the first year or so I was, you know, is it Parkinson’s, isn’t it Parkinson’s? Might be something else. Might have been misdiagnosed but I’m quite happy now and content that that is what’s wrong with me.

There is a scanning technique now that can scan for dopamine activity in the brain but it was brutally expensive like everything else new is and so you don’t get it on the NHS. I mean I wouldn’t think there’s anywhere in the UK outside the Hammersmith Hospital for Nuclear Medicine where you could probably get it done in England. And that scans your brain for dopamine activity and they can, therefore, see where dopamine activity isn’t and should be. So that they can use that to actually definitively diagnose Parkinson’s. But they don’t because of presumptive diagnosis is ninety nine per cent of the time okay.

Do you always see the consultant or do you see just the registrar?

No, you don’t.Most of the time you see a nurse actually a clinical specialist nurse in Parkinson’s and they’re very good.In some ways better than a consultant because they deal on a more personal level with individuals.

So they have more I think of an understanding about living with the disease and how your life is because that’s the aspect of of the things that they deal with so they’re very, very good.Very, very good idea and I don’t know why the NHS won’t pay for more of it.But most I believe most of the funding for them is paid for by the Parkinson’s Disease Society which is quite sad really but, you know.

Are they in a position to prescribe? Can they change your prescription?

Yes,I think they I think there are bounds put on them about what they can and can’t do.Like the Stalevo that I take my Parkinson’s nurse could say, Yes, okay. We’ll up you by, you know, a couple of milligrams a day or whateverBut like when I was put on to Gabapentin she couldn’t start me on a new drug as it were, do you know what I mean, that has to be authorised by the consultant or major changes I think have to be done by the consultant.But I don’t have to see him.She we talk about I talk about with her and and she’ll just nip in his office and say this is, yeah, and they’ll agree or not.But I can see him if I want to. If I ask to.In fact doctors for me is the one the one I’m with now because I’ve only see her once so far.She’s new to me. it’s the first consultant I’ve ever been to that’s given me her e-mail address.Any problems drop me an e-mailThe consultant who will get in touch is quite remarkable I think.

I’ve read a lot about Parkinson’s and all the different symptoms that there is and the different treatments there are. There’s one thing I have learned in that that is that worry doesn’t help any of them and doesn’t make any of them any better or stop them coming.So really I know it sounds it’s probably silly to say but worrying about it is a complete and utter waste of your energy. You… it’s going to be what it’s going to be and you’ve just got to find a way to work around it.To live with it. I have Parkinson’s disease.Parkinson’s disease doesn’t have me.It doesn’t rule I rule it, it doesn’t rule my life.I take the decisions not the disease.