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Tom - Interview 06

Age at interview: 40
Age at diagnosis: 27
Brief Outline: Tom was 27 when he was diagnosed. His medication includes levodopa. He experiences 'on' and 'off' periods most days. During the on period he may also have dyskinesia. He set up the Cure Parkinson's Trust.
Background: Married, runs cureparkinsons.org

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Tom was traveling in Australia when he noticed that he was having difficulty with handwriting and also that he had developed a slight tremor in his right hand.

 

On his return to England, he saw his GP who thought it might be a trapped nerve but referred him to the neurologist anyway. The neurologist gave him some medication and asked him to tell him if his symptoms eased, which they did.  Tom was referred to another neurologist who diagnosed Parkinson’s Disease.  He was very shocked. Being only 27 years old at the time, it was not something he associated with young people. He started taking Levodopa.

 

He felt angry and sad for a while. He didn’t tell most people about his diagnosis for six months because his symptoms were well controlled with medication. He was worried that his friends might treat him differently. But they didn’t, they treated him as they had always done.

 

After five years, he decided to leave his job and get involved in finding a cure for Parkinson’s disease. He set up the Cure Parkinson’s Trust. Over the years he has done many fundraising activities, including walking from John O’Groats to Land’s End and also a 4,5000 mile walk around the coastline of Britain.

 

Tom now experiences ‘on’ and ‘off’ periods throughout the day. When he is ‘on’, he may experience dyskinesia and when he is ‘off’ he has too little movement, episodes of freezing and a tremor in his hand. The levodopa he takes affects the dyskinesia, but he would rather have dyskinesia than take medication that influences how he feels mentally.

 

He is able to regulate his symptoms to some extent by adjusting the timing and dosage of his medication and by avoiding protein intake before and immediately after taking levodopa.

 

Tom believes that the substantial research taking place at the moment will lead to an improvement in the treatment of Parkinson’s disease, which gives him huge hope for the future.

 

Tom realised it was more important to overcome the mental reaction to having Parkinson’s than to...

Tom realised it was more important to overcome the mental reaction to having Parkinson’s than to...

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For a while after that I lived in denial and, not for very long for probably about three months or so and tried not to contemplate it too much and then, and then I decided that actually probably that was the wrong way because I had some incredible friends, I had amazing support from family and friends, and, I decided that rather than lie back and, and hide something that was becoming increasingly visible as a physical illness which, which it obviously is, I would well try and embrace it, try and sort of work with it, try and fight it.  

 

How can you work with it and fight it I don’t know, but that’s kind of, that’s kind of  kind of what it was. So rather than live in this sort of, because at the beginning I think a lot of people live in this sort of.. in a sort of tragedy of a perceived future which might never have ever come across, might ever  never materialise. It’s.. people so often think, you know, ‘wow I’ve got Parkinson’s that’s’ and actually it doesn’t affect them too badly it’s only a mental, it affects you mentally to begin with. It’s not the physical challenge so much, and I think if you’re diagnosed early enough you can, you can perhaps overcome the mental side before the physical side really, really gets too bad. And if you can get over the mental side and if you can accept, accept Parkinson’s for what it is and accept that you have it then the mental battle, you can beat the mental battle with Parkinson’s and then the physical battle you may lose eventually but, but I  know which battle I’d rather win. The, the mental battle’s far more important than the physical one, and, and hopefully that’s what I’ve, what I’ve achieved. 
 

Tom's charity work stemmed from his 'incurable optimism' but the results were spectacular.

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So I walked from John O’Groats to Land’s End which was something I’d always wanted to do and Parkinson’s  sort of gave me the opportunity really to do it.  And so I went for, I’d sort of got a sponsorship pack and sent it out to friends and family and, I was amazed by the support. It was wonderful. And I set off and not really expecting to raise more than sort of £3,000 from this thing and enjoyed the walk thoroughly. But it was, it was tremendous. It took two and a half months. And raised £14,000 and it gave me such a fantastic buzz to have, to raise that money. And  it was a wonderful experience and then I went back to workand decided that while my work was being impacted sort of quite heavily with becoming more and more sort of, Parkinson’s disease was becoming more and more of a burden. And actually I was getting worse at what I was doing because the physical symptoms were beginning to sort of kick in.

 

That I then decided to go off on another walk sort of bigger and better. Decided to get companies involved. And  so I got pharmaceutical companies and various supporting organisations and, and went off on a four and a half thousand-mile walk around the coastline of Britain which took a year, exactly a year. And it was the most marvellous experience that I’ve ever, ever experienced. It was, it was the best year of my life by a long, long way. It was, it was, it was just, restored your faith in humanity really. It was, it was, it was wonderful and, and ended up raising £350,000 from that. And it was, it was astonishing the support, absolutely wonderful.

 

And so with that. I decided that actually, that  actually I was more, of more use for the world by, by doing something involving myself in, in the disease because I was certainly slightly unique in that I was someone so young with Parkinson’s. And actually, you know, with Michael J. Fox coming out of the closet and saying he had Parkinson’s and, and  but even with that people didn’t really realise that young people could get it. So, so I felt I was doing good by, because charity is so much more compelling when it involves younger people. You know it’s a sad fact of life and  And so I decided that a better way is to make myself of use was to go into the, into the Parkinson’s world fully fledged. And it’s almost a case of sort of, you know, because I’d been useful with Parkinson’s it’s a case of shake well before use, sort of thing.

 

Tom thought that because some pink tablets relieved his symptoms this meant he was OK. He didn't...

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I first suspected there was something wrong when I was travelling and I was writing a postcard to a friend of mine in, in Australia whose name is Anthony Diecopolis. And, and I got to the Anthony Diec and I couldn’t finish the opolis. And it’s very strange my hand had sort of gone into a sort of spasm and it just wouldn’t, wouldn’t finish writing the, the, the word. And so that’s a bit strange.

 

And so I went when, when I got I, I went to the doctor and said, “What on earth’s going on?” And I had since then I’d also developed this slight tremor in my right hand. He said, “Well it’s probably, Essential Tremor or trapped nerve or something like that”. And anyway, then it got a bit worse and then I was, I was recommended to go to a neurologist. And the neurologist had a look at me and gave me some pills. And he said, “Come back and tell me if these work”.

 

This is about, about sort of, nine months after my, my not being able to finish the, the postcard. And, and he said, “Take these pills”. And the pills worked. Magically the tremors stopped and I thought this is wonderful. And so I went back to the neurologist and I said, “Yes everything’s fine now. The pills have, the pills have worked.” And far from looking happy about this he looked rather, rather grave and he said, “I think you’d better go to another neurologist.”

 

And so I went to another neurologist and he said. He did loads of tests, you know, and doing all this, and the usual things that become very natural to me now. All the sort of tapping the foot and banging the hands on the table and stuff. And, and he said, “You have something that is within the, falls within the parameters of Parkinson’s disease”. And I thought, “Parkinson’s disease, it can’t be Parkinson’s disease, ” that. And you know I’d associated Parkinson’s disease with elderly people as most people would and I was twenty-seven at the time.
 

Tom told only a few people because he worried that he might be treated differently; when he did...

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And then you go through a period of denial. Where you don’t really want to tell people about it because your symptoms aren’t bad. And with Parkinson’s your symptoms are, vanish at the beginning through the medication that you’re taking so no one knows you have Parkinson’s. And actually you can keep it a secret. And I did that for a while, for about six months only telling a few people.
 
And then I realised that my life had, had changed irretrievably and that actually I couldn’t deny it any longer. I had to sort of tell people about it. So I started telling friends and coming to terms with the Parkinson’s. And I was surprised with the reaction actually that most people were, they, they, I was worried that there might be a stigma attached. I was worried that people might treat me differently but actually that wasn’t the case at all. And instead I was very pleased with the way people responded. And everyone was, didn’t sort of treat me with pity or sympathy. They treated me as they always had done. And actually if anything they were more inclined to sort of ring me and sort of, and help out, which was great.
 

Tom wonders if people should be worrying so much about causes when what is really needed are cures.

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Tom wonders if people should be worrying so much about causes when what is really needed are cures.

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I think people are people are obsessed with the, with the causes of the disease when actually maybe the cause is not, is perhaps ought not what we want to focus on. I think it’s important to find a cause because people say “You can’t find the cure without the cause”. But I would argue that because actually with Parkinson’s I think there are so many causes and that everyone’s probably got different causes to their disease. Actually why not go to the end game and try and find the cure. That may be just as easy as, as looking at all the causes. So I think as much, as much research should be going into the cure as to the reasons why. And what’s the point of fiddling around with all those sort of minutae of what might be causing one person’s Parkinson’s disease if there are treatments now which have been shown to, to help. We should more focused on what people are experiencing today than what, than trying to build all the blocks to, to find the sort of, the every minutiae of, of detail about the disease in order to find the perfect cure. Maybe, maybe we don’t need something that’s perfect now maybe we need something that’s just can manage the disease for people.
 

When Tom was put on levodopa he thought it wonderful because his symptoms went away. He didn't...

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I first suspected there was something wrong when I was travelling and I was writing a postcard to a friend of mine in, in Australia whose name is Anthony Diecopolis. And, and I got to the Anthony Diec and I couldn’t finish the opolis. And it’s very strange my hand had sort of gone into a sort of spasm and it just wouldn’t, wouldn’t finish writing the, the word. And so that’s a bit strange.

 

And so I went when, when I went to the doctor and said, “What on earth’s going on?” And I had since then I’d also developed this slight tremor in my right hand. He said, “Well it’s probably, a central tremor or trapped nerve or something like that”. And anyway, then it got a bit worse and then I was, I was recommended to go to a neurologist. And the neurologist had a look at me and gave me some pills. And he said, “Come back and tell me if these work”.

 

This is about, about sort of, nine months after my, my not being able to finish the, the postcard. And, and he said, “Take these pills”. And the pills worked. Magically the tremors stopped and I thought this is wonderful. And so I went back to the neurologist and I said, “Yes everything’s fine now. The pills have, the pills have worked.” And far from looking happy about this he looked rather, rather grave and he said, “I think you’d better go to another neurologist.”

 

And so I went to another neurologist and he said. He did loads of tests, you know, and doing all this, and the usual things that become very natural to me now. All the sort of tapping the foot and banging the hands on the table and stuff. And, and he said, “You have something that is within the, falls within the parameters of Parkinson’s disease”. And I thought, “Parkinson’s disease, it can’t be Parkinson’s disease, ” that. And you know I’d associated Parkinson’s disease with elderly people as most people would and I was twenty-seven at the time.
 

Tom goes through many states with each dose of levodopa. Moments later he realised he had...

Tom goes through many states with each dose of levodopa. Moments later he realised he had...

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The pink tablets were L-dopa [levodopa] which is the gold standard for treatment of Parkinson’s and is, is the thing which, which, allow me to, to talk to you now because without them I wouldn’t be able to move. In fact they’re making me move rather too much as you can see, but that’s just a side effect which comes about, usually about, after about four or five years of taking them, and it, I don’t have it all the time but this morning I have it. It usually comes about one, particularly when you’re being interviewed actually if you have a bit more adrenaline than usual then you get more dyskinesia so probably find that after this interview I, it’ll settle down again but it, it’s just any sort of stress or adrenaline or.

 

Is it quite uncomfortable for you?

 

Yeah, yeah probably, it is a, it is at the moment it’s [sighs], it’s not that uncomfortable it’s more that I’d rather not be doing it in front of the camera, and, you know, and it’s not very pleasant to be sort of, you know, and people watching this thinking ‘oh look at him waving all around’ and, and knowing that people are thinking that and [laughs] it’s just not very nice, but it doesn’t bother me that much.

 

To what extent is it related to stress? And to what extent is it related to when you last took the L-dopa or how much?

 

Yes it is very much related to that, and usually the worse it gets, it’ll get worse at the end of the period of the dose so that it gets worse and then it’ll disappear completely, and then it’ll fade away into tremor if I didn’t take the next load, lot of pills, and then the tremor will get awful and then if I didn’t take any pills after that then I would eventually become frozen, so. So it’s almost like too much movement, normal movement, tremor, no movement.
 

Tom’s ‘offs’ are both dramatic and scary to anyone observing them though he knows he always comes...

Tom’s ‘offs’ are both dramatic and scary to anyone observing them though he knows he always comes...

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Off and on are so unbelievably different they’re like sort of Jekyll and Hyde really, they’re, off is, my off can be so horrendous that I am unable to move, I’m totally unable to move, unable to move a single, and this is far worse than, than I would be at night. It’s, you know this can be this can be sort of well I. Unable to move a muscle and if I try and move a muscle I would, the tremor would be so awful that I would be literally flapping around like a, like you see those fish, you know, coming, coming out of the sea, you know, flapping around like that, you know, just awful, awful, awful. And, it’s, I mean it’s, I’m so used to it that it’s, it’s kind of, par for the course for me but when people see it for the first time, in fact I had someone interviewing me once who, who saw it and she, she wrote that she was about to call 999 but she was, she decided not to because I was kept on joking, making jokes about this so, so and actually I got asked on a plane once she, someone was, the stewardess went for my tongue because she thought I was having an epileptic fit, and that, that I mean it’s literally like, like being in an electric chair it’s kind of, you know, it’s that, it’s that violent.
 

Tom had forgotten to take his amantadine and was able to demonstrate its immediate effect on his...

Tom had forgotten to take his amantadine and was able to demonstrate its immediate effect on his...

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So that’s, so that the dyskinesia you, is, is caused by the medication?

 

It is yeah. It is.

 

And, and have you, is, is that the only medication you take?

 

No, no I take all sorts of other things. I take something called a COMT inhibitor, I take an agonist, I take amantadine which is a sort of strange thing which it seem to, seems to help with the dyskinesia. Actually thinking about it I haven’t taken it this morning which was pretty stupid Thank you for reminding me.

 

How quickly does it work?

 

I can’t believe I haven’t taken it stupid.

 

Would it, would it be worth your taking it now?

 

Probably would yeah, why don’t, why don’t we give it a go?

 

Shall we?

 

I can’t believe I haven’t done that.

 

Shall I get it for you?

 

So you’ve now taken some amantadine?

 

I have.

 

How, how soon do you think it might work?

 

It seems to have worked already doesn’t it?

 

It does, yeah.
 

Tom describes why he feels it is appropriate to self-medicate and why he doesn’t take any pills...

Tom describes why he feels it is appropriate to self-medicate and why he doesn’t take any pills...

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Yeah I self-medicate completely and sometimes I have real problems with my chemist and my doctor’s surgery because they just contemplate ‘self-medication, ridiculous, you know, how can anyone self medicate?’ and because I have a brain.

 

So what are the kind of principles of your self-medication?

 

Well basically I mean I take a pill when I need one and I know when I need one and as long as I know that taking too many pills is bad for me because there’s, I’ll get the side effects so, so. It’s a case of, you know, I know what, no-one knows what’s best for me other than me because I know how my body feels at any particular time, I know that when I’m, when my, if I’ve eaten too much or if I’ve eaten any food and then, and then I, my drugs kick out then I know if I take another pill with a full stomach it’s not going to work. So I might as well wait for a, for another hour and a half and, and suffer from the tremor and then take a pill rather than try and take a pill immediately, but, but you see not, not everyone’s like that so.

 

Yeah the decision is based really on, on a, a sense, perhaps mistakenly that actually by freeing my body for, for eight, eight hours or so from any kinds of, any kind of pill that perhaps it will recover itself in some way without being stimulated or artificially. What I’m trying to do is get my brain to naturally produce the good things, the good dopamine and etcetera and, and actually I’ve found that, if I don’t take pills at night sometimes in the morning if I’ve taken, if I, everything is going right then I can get up and I can go on the rowing machine without, you know, first thing in the morning without actually having any pills and actually I know that by the time I do on the rowing machine exactly what sort of day, day I’m going to have. so I can actually, I absolutely know from the time that I do, because I do the same thing every, every morning on the rowing machine, what sort of day I’m going to have so that, so that, that way I can plan my day and so if I’ve got too much on, on, on that day and I’m, have a really bad, I do ten minutes on the rowing machine which is a bad time then I can cancel a few things and because I know that that’s.
 

Tom would like to know that his needs will be recognised and that appropriate support would be...

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No there was no plan whatsoever. And yeah that would have been, that would have nice actually to sort of, to know that there was that support if I needed it. And you know, these are the things you have access to and this is what’s going to happen when such and such happens and, It’s very difficult to know because everyone is different and this is why, this is the, this is why I think it’s important to listen to the patient, to listen what the patient wants and to ask the right questions to ensure that, you know, you know what the, the patient wants. Because only then can you make the right decisions for them or discuss the decisions with them so right ones are taken.
 

Tom feels that a multidisciplinary team is essential to the proper management of a condition like...

Tom feels that a multidisciplinary team is essential to the proper management of a condition like...

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It’s so important there’s a multi-disciplinary team for someone with Parkinson’s. They can’t just rely on one person to look after them who, who sees them for twelve minutes every six months or something. It just can’t work like that because someone needs to be monitoring them and actually they should be monitoring themselves as well. There needs to be more self-assessment in Parkinson’s, and patients looking after themselves, engaging more in their own illness, communicating with their clinician, with their nurse specialist, with physiotherapists, all the team they need to have a whole team around them to look at the various aspects of the disease and to really be there to help. Because it’s not just about tremor, Parkinson’s it’s a whole different, there are all sorts of other things, behavioural, there’s muscle that, there’s sexual problems, there’s, dribbling, there’s constipation. All these, tons of things which are all involved with Parkinson’s which people just don’t think about and it’s only recently now that patients have actually kicked up a bit of a fuss about these things that, that actually neurologists and, and eventually pharmaceutical companies are taking notice and providing the treatments that are necessary, that are actually, you know, physically and mentally affecting patients with Parkinson’s.
 

Tom learnt from a nutritionist how regulating his protein intake could avoid interfering with the...

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The L-dopa pills react with protein in the brain so that I still do only take limited amounts of protein during the day and have my main protein meal at the evening. And in that way I limit the symptoms, side-effects of the drugs basically. And then actually if, if I had my pills with a, with a lump of cheese or something, you know full of protein, they wouldn’t work at all. So that so I only have food about 40 minutes after I’ve taken my pills. But once they’ve actually, once they’re actually working and, and effective because if they’re not then, well then you get these, then I’m getting more tremor and, and it can, it makes huge difference.

 

Is that something you’ve found out by trying it out or was it?

 

No I was told that, told that by a nutritionist. But there’s also, it’s astonishing today how many people don’t know that. And that, that is absolutely fundamental to, to the treatment of Parkinson’s. And I find it absolutely amazing.
 

Tom came out of the neurologist's waiting room to the horrific realisation that in time he would...

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

 

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

Tom admits to being irritable but says that is something both partners have a right to in the...

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Yeah it, it, it’s this thing about it affecting both of us which is annoying for me. It, it’s, it’s, it must be hugely frustrating for her. I actually think that Parkinson’s is almost as bad if not worse for the, for the, for your partner as it is for you because you can, you can see. You know what’s happening to you and, but actually your partner can only see you suffering from it. And it, it must be really difficult, to deal with because there’s nothing you can do. You can just sit and watch it. You can’t, you can’t actually help in any way. So it must be frustrating and again it’s this thing about planning. And communication is actually key to it, you know that it’s and we have. It’s hard but, but you know. And when there are times when we’re both saying, “Oh we hate this blooming disease”. You know it’s just, just a nightmare. But, but as long as, as long as you can communicate I think that you can get through it. But yeah it, it’s, it’s not easy.

 

Tom explains what he feels is wrong with being pitied.

Tom explains what he feels is wrong with being pitied.

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There’s nothing I, I can, nothing I hate more than, than the thought of someone pitying me which is, pity is just, just, terrible to contemplate and whilst I know that pity it comes out of probably comes out of a good, a good thought rather than a bad thought, it’s just, you know, it’s, [sighs] it’s well, it’s a very difficult thing because, you know, when I talk about patients but actually patient, the word patient has a, I don’t mind being called a patient, words are just words but, but, but actually the word patient implies something to, either sympathise with or, or to pity I think.
 

Tom explains the difference for him between getting stuck in doorways and going up stairs or...

Tom explains the difference for him between getting stuck in doorways and going up stairs or...

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It is, I get this, thing called festination which is, which is sort of lots of little steps basically and it’s very difficult I get stuck in doorways and things like that, And yet it’s very strange because I, it’s only open, open spaces that I can, I get this thing. If you get me in, in a, up a flight of stairs I’d be up them no problem at all because it’s this sort of queuing system where, where, and, you know, if, if, in the morning if, if someone chucked a ball at me my hand would go straight out like that. And yet if you asked me to put my arm out like that it would, it would go, like that so slow, and I could play ping pong and it would be no problem but, but ask me to, ask me to walk through a door I just get, I’d, I would get locked rigid it’s very strange.
 

Short section on film of Tom playing with a golf club and then with a football.

Short section on film of Tom playing with a golf club and then with a football.

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Tom playing with a golf club and then with a football.

 

When Tom gave up work he achieved a sense of worth by raising money for research into a cure for...

When Tom gave up work he achieved a sense of worth by raising money for research into a cure for...

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I remember thinking that, that ‘I was diagnosed with two conditions of the, conditions of the brain One was this Parkinson’s and the other one, and the other one was optimism and there was only one of them which was incurable and it wasn’t the Parkinson’s’. And, so what I decided to do was to, initially was to, was to do this walk, a walk that I’d always wanted to do because I’d, I had done a lot of walking while abroad, and, so I decided to walk from John O’Groats to Land’s End, and that was something I always wanted to do and I thought ‘well why not raise a bit of money while I was doing it for the, for the, for research and so. I did this and I just wrote to a few friends and family and was expecting to raise about one or two thousand pounds and ended up raising forty, forty thousand pounds which was incredible and I thought ‘well if I can do that by just’, It made me feel really good about what I was, people started saying that I was brave, I didn’t feel particularly brave but it was nice to be called brave, and, and that started making me think beyond myself really and, and sort of, because up until then it had been very much a sort of inward looking thing, I was looking at myself and trying to improve myself but, but it was after the walk that, after my first walk from John O’Groats to Lands End that actually I had, I took a slightly broader view and, and realised that, that the, the way to, the way to achieve fulfilment out of this thing, to get a sense of worth was actually to, to help other people with it because it, by that time I’d had it for quite a few years, I’d had it for about six years by now, and, no I’d had it for four or five years but , but it was while I was doing this walk that other people with Parkinson’s came up to me and said, “God what you’re doing is fantastic.” And that was, and that gave me a real sense of pride and a sense of fulfilment and, and, it, it, it really sort of heralded the start, the start of this new, this new sort of strategy for me which was not to look at myself as trying to, trying to cure myself but to actually to look at the bigger picture and, and see if there was anything I could do on a, on a wider scale. 
 
And, so then [laughs] I had this even more daft idea which was to walk around the coastline of Britain which was something called ‘coasting’ and that really was an absurd distance it was four and a half thousand miles, and, so I did this in two thousand and, two thousand and two to two thousand and three, and that raised [sighs] to cut a very long story short that raised three hundred and fifty thousand pounds. And, and then having done that it really sort of, proved to me that actually what, my, and my strategy was good and that it was, it was not, not only helping me but it was helping other people and it was, it was a momentum and, and, and, it was all good, it was good at every level really. 

 

And, so from then on I’ve, I then decided that actually there wasn’t enough emphasis on, on the word cure with Parkinson’s Disease because I’d met the scientists who were talk in terms of a cure and these were scientists who had a look in their eyes, some of them they had a look in their eyes to, to, to suggest that actually they really did think they could cure it, and, and I thought ‘well why not? Why shouldn’t it be cured?’ and So since then I’ve, I set up this charity with three other, three other patients.
 
I run the charity so, so I’ve got, yeah I’m, I’m involved in, in, in all sorts of things, I’m involved with the, there’s a World Parkinson’s Congress which is coming up in two thousand and ten which I&rsqu
 

Tom says that the internet has dramatically altered how people experience illness. Patients want...

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Tom says that the internet has dramatically altered how people experience illness. Patients want...

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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.

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