Mark shares about the value of his lived experience in relation to research into Parkinsons.

this meeting is being recorded. OK, Brilliant. So, um hi, Mark. Um, I'm just going to invite you to introduce yourself, um, briefly and then talk to me about your experience of coproduction

Yeah. Hi. My name is Mark Hutchinson

Um, I'm Parkinson's, um, suffer to be called. I was diagnosed in September 2013, and, um, although a surprise at the time and a bit of a shock, I wouldn't say it was devastating at that particular point because you don't actually feel at all and, Well, really, you have some quirks in your movements or habits or whatever, uh, which gradually sort of decrease and increase over time. Um, I live with my wife

We do a little bit of property developing, and I manage to stay active pretty well. Uh, normally, um, although fatigue is a big factor in one of my symptoms, Um, almost from day one, I was quite keen to get involved with various research programmes and, um, research initiatives and most recently, coproduction in such as, um, such items such as better conversations, which is aimed at people who are struggling with Parkinson's and struggling to communicate principally with their immediate partner. Um, also, uh, about a year ago, I was involved in the co-production of Park, which is the Parkinson's research conference

Uh, with a team of about nine people, the better conversations was a team of, uh I hope we don't miss anybody out here. I think there were five of us all together, um, each with an interest in various aspects of communication. And one of my principal reasons for wanting to join in with that particular piece of research, uh, was the isolation that you can feel if you can't communicate clearly, uh, with other people, be it your own partner or people in the group

Uh, and it kind of leads us to quite a bit of loneliness and probably depression too closely followed behind. Um, as with all of my experiences, the better communications was led by somebody very, very helpful and very skilled. Philippa Clay, who brought the team together with, um, very clear advice, very clear guidelines about what might be expected and also making it clear that there's no right and wrong answers to any of these things

It's our experiences that are are being listened to and valued. I certainly felt like they were being valued. Um, we met monthly for about five or six months

If I recall correctly, uh, building up to putting together the final package for the researchers to formulate their programme and put it into action while it didn't mean that we were actually participating as, um, guinea pigs, so to speak for this programme, the insight that it gives you into what's going on, uh was fascinating and also very helpful, too. Uh, so from a purely selfish point of view, Um, I think these collaborations are very good therapy for anybody with Parkinson's because you feel like you're doing something at least because for the time being, while there isn't a cure or therapy that puts things absolutely back on the straight and narrow, you have to find your find your help and assistance from the experts and find it within yourself as well to make yourself feel like it's worth going on, which I very much do feel that way. Um, the the Internet has been extremely useful with this

I don't believe that the collaboration could have been nearly as successful without it, um, so lockdown has its uses in a way Uh, certainly. With the park on conference, Um, we had, uh, can candidates Should I call them from as far as the North? Very north tip of Scotland. Gloucestershire? Um uh, the Midlands

Uh, we're in Herefordshire. Uh, but we could also come together in one place very, very easily, which just wouldn't have happened. So I would foresee that that will be the format i e the internet from now on, simply because of the ease of getting to the people that are really willing and, um, wanting to be, uh, helpful with their input

Mhm. So So what? What was involved in the, um, park on? Then what was the breadth of, um, people, obviously yourself and other people, um, who are living with Parkinson's? Um, we had, uh, clinicians. We had lots of volunteers such as me

Well, there were I think there were nine of us, if I remember rightly then the full time staff at Parkinson's. UK, um, Liz in particular, uh, who sort of drove the programme? Um, we didn't get a sense of it while we were kind of participating in it, but I think towards the end towards the D Day, so to speak. It got pretty fraught and frantic back in Parkinson's UK office

Um, and indeed, they came to us, uh, for sort of picking, brain picking. Um, advice. Uh, I hesitate to say advice because we can only sort of share our experiences

We haven't got expertise, but actually, somebody put it very well and said, You're the experts in having Parkinson's, which is true. It sort of makes you feel valued, um, so you can express with, um, some authenticity. Uh, what? Your experience, what your feelings of it is the the breadth of knowledge and input for park on was quite huge

Really? Because we had dieticians. We had, um, speech therapists. We had neurologists, um, surgeons, um, research leaders, um, Parkinson's, uh, my neurologist is based in John Radcliffe Hospital in Oxford and the, uh, Parkinson's centre for Disease

I think I've got that right in. John Radcliffe is led by Michelle who who has got a huge depth of knowledge and research, and she was very much a part of, um, personally speaking, I found some of the more fringe aspects. Very interesting things

So for instance Oh, yeah, uh, explaining about how diet can dramatically affect your symptoms. So the research into finding a cure, Um, I forget the name of one of the last speakers. But he was a very expressive, very entertaining, um, neurologist who was full of life and enthusiasm for what's going on and was actually a very suitable round up to the whole, um experience because he managed to leave everybody on high

Um, there was a little bit of controversy as well. There was a correspondent from the United States that was, um, asking questions and actually wondering, were we going the right way with this research? Um, which I think brought a few people short. But actually, you know, you could ask these questions

Stir the debate up before you find the right answers. Um, the better conversations. Uh, I think, as I said was, um, led for our part by Philippa Clay who, um, brought us all together with varying degrees of interest, as I already said

And, um, the end result was very satisfying because, uh, we talked a lot about how the, um presentation to potential participants should look, and I think we all stress that it should be very straightforward as a Web page as a website easy to navigate, not because people participating needed the help of something easy, but simply because websites generally can get very complicated. And you can be searching around the screen for information and losing the interest in what the actual content is. Um, but I believe that what they've managed to find come up with in the end, uh, is straightforward, easy and very helpful

And hopefully we'll put people on the right track to, um communicating better as it's as its name suggests. So do you think, um, your involvement and the involvement of other people, um, who have Parkinson's has made a difference to, I guess, to those other people involved, um, and to the end, the end resort, I guess the event itself and the better conversations Do you have been different? I think, Yes. I think getting the, um, getting the opinion of people like us on the front line, so to speak, um can only be a good thing, because, um, I haven't got anything parallels in the business world

I mean, I'm actually a furniture maker by trade, and, um, I spent a lot of my life selling expensive furniture to people. Um, but the parallel there is simply that, um, without knowing what your end result is, what your target is, Uh, it's very difficult to put something together. Um, and I mean, we are the we are the target at the end of the OK, so to speak

Um, so guessing at what we might like was not nearly as good as actually asking somebody like us. Is this hitting the Is this hitting the spot? Um, apart from. And better conversations are quite often, um, read through research papers and, um, propositions for people looking for plain English

Basically, um, which I find quite interesting. I'm a bit of a nerd when it comes to grammar and spelling and punctuation. And simply putting that right in a document certainly makes sense

It's quite rewarding, but also, I think it's important to be read by somebody who really doesn't understand it deeply and thoroughly, so that they can say I don't understand it. You know, you can pick up parts of the text and say, Well, somebody like me doesn't get it. Um, that possibly is only of limited use because of the system, So I think it's probably important there to do them infrequently and make sure you're still an amateur, so to speak

Yeah. So there's a risk that you might become over professionalised or too professionalised at this. Exactly

Yeah. Yeah, that that that makes sense. Um, I've had had a few similar conversations, like like that

Interesting that you said you were really keen to be involved right from day one of knowing that you had Parkinson's. What? What do you think? Why, why? Why was that important to you? I think to sort of get on the bandwagon, so to speak. Um I mean, that initial shock, that surprise when he sort of diagnosed, I mean, um, I be before diagnosed before I even thought it might be Parkinson's

The symptoms were revealing themselves by, by way, very simple things, very straightforward things, but that kept recurring. That wouldn't go away. So I had neck and shoulder pain

And when it came to having a shower and getting out and drying your hair with a towel, for instance, my left arm, significant things in the red, right, but actually building up to sort of thinking Well, hang on, it's not getting better. I need to sort this out. And when I went to see the neurologist first time, I hadn't really a clue that I might be getting a diagnosis of Parkinson's within the hour

And, um, when it came, you sort of think, Oh, bloody hell, Where did that come from? And it takes. I'm sure it must take a different length of time for everybody to absorb it and come to terms with it. Uh, maybe some don't completely come to terms with it

Um, they for me. I think it took a few weeks and I thought, How can I can't fight this any other way than joining in and being part of research? It's not going to make any difference. It's not gonna make it worse

Uh, and hopefully mentally, it'll make it better because I can get the fulfilment out of it. Um, I keep mentioning that sort of fulfilment. It sounds very selfish, but actually, So what if it's helpful and he's doing you good too

Um, get on with it. Do you think Do you think part of that fulfilment is to do with actually understanding and being able to be alongside people who you would perceive to have more knowledge and experience. Um, but it's a learning thing, isn't it? I suppose it's something you've been able to learn about

We were doing so well. Uh, I can't remember exactly three or four or five years perhaps to come out to friends that I had Parkinson's, because initially, um, the symptoms were so mild and difficult to see for anybody else. I thought, Well, I don't really want to tell anybody how to get on with things and, um just live a normal life

Uh, the time came eventually and funny enough. I had it kept limping, kept stumbling a little bit, and people kept saying, What's wrong with your leg? And I thought, I'm not going to start lying to people, but I I'll come out with it and say, You know, uh, this is this is me. This is who this is, what the reason for this is

And I actually wrote a bit of a round robbing letter and send it out to friends by email, and their response was great. I mean, a lot of black humour came flying back at me, so I mean, being a furniture maker, the one wit came back and said, Oh, you'll be making shake of furniture out then, will you? And somebody else who loves a drink of the evening came back and said, Well, you can shake the cocktails for us. Um, slightly cliched, um, vision of what is Parkinson's? Um, And on that point, actually, um, being involved with collaborations gives you more knowledge and therefore enables you actually to sort of very politely and very kindly put people right as to what it is and how it's different from anybody else's Parkinson's

Um, them say saying, being that, you know, you meet one person with Parkinson's and you've met one person with Parkinson's, which is very, very true. Mhm. Yeah

Thank you. And what do you think? What do you think the impact of? Um, you know what? What you've done, what? The involvement in the research, what you've done and the conversation stuff the park on has been for other people. Um, with with Parkinson's, um, as part of the teams or people in general, Do you think both Either I think the people in the teams, um, would actually, um, say how much they sort of We're sorry that the different programmes come to an end because you get to know people really quite well, even though it's on the Internet

Um, and you you can see clearly that they've all got different angles on, and they've all got different inputs to offer. Um, and I think there's something quite humbling about having Parkinson's. You know, um, you can be a math professor or you can be a furniture maker or you can be anything you like And then the great leveller comes along and says, Hey, you like you've all got Parkinson's

So, you know, think on. Um, as far as other people are concerned, I haven't come across yet in collaborations, I would say, Don't hold back. If you feel it's going to help you and help other people do, get on with it and you'll get you'll get a lot out of it

Hm? Do you think people do you think it would help people to know that this is something that they could? There are opportunities for them to get involved with things like this from the point of diagnosis. Yes, definitely. Uh, and it seems actually to be a great there seems to be a great variation in what information and what advice people are given on day one, I think

Excuse me. I think I was very lucky living in Oxfordshire at the time. Uh so therefore, my contact was at John Radcliffe Hospital, which is, well, well renowned, isn't it? Um, so that was a really good start

I don't think anybody gets I don't think everybody gets quite that sort of same sort of start. And, um, they can be left sort of scratching around a little bit or feeling quite lost. Um, the the information I was given at the time um, it was quite very

You can pick and choose, and, um, do what you feel you've got most to offer them. Um, they are from a family of very good mumblers. So when the better conversations, one popped up

I thought I think I've got something to offer here. Um, I missed a bit of that mark because it froze again. Conversations? Yeah, Yeah

No, no, it's fine. Sometimes it's fine. I can hear you, but I can't see you

So if there's anything you think I've missed, please restate it. Um well, you got the part about um, being in Oxfordshire and being in the sort of John Radcliffe catchment area. Um, the information they were handing out at the time or offering at the time was very good

And I was put in touch with the Parkinson's nurse straight away. Um, and they stressed the importance of exercise, which I think, really, non medically is still the only thing that has been shown to slow slow the symptoms down. Um, the I think you may hear that

I'm not sure, but the only part of the research of the information I was given that I'm not quite ready for yet was that brain donations. Um, but having not finished with mine yet, I'm sort of just holding off on that one. But I think the the breadth of involvement that it can be, uh, is enormous

So you can pick and choose where you feel you've got most to offer. Hm. Yeah

Thank you. Is there anything else you'd like to add? Um, before I stop the recording Mark, I would think I would encourage everybody to partake, uh, and not feel that, you know, You know, I haven't got anything to offer because they certainly have simply by being a Parkinson's patient. Um, they'll gain a lot of information

They'll gain a lot of knowledge which builds and builds and helps. Um, a friend when I was first diagnosed, um, and I spoke to said, Do you wish you didn't know? Because the symptoms are so mild. And at the time I said, Yes, I think I do because, uh, now I'm sort of chewing it over in my head all the time

But actually that quickly dissipated and becoming more involved with the research. Um sort of showed you that there is some light at the end of the tunnel. Mhm

Yeah. Thank you. So

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