Webchat on Parkinson's Brain Donor Appeal

A live webchat was held on 24 April 2009 to discuss Parkinson's, recent breakthroughs in research and the vital role of brain donation.

Host Lis Speight spoke with Steve Ford, our Chief Executive, our President Jane Asher and Dr Lubna Arif, Research Liaison Manager.

The webchat took place during Parkinson's Awareness Week 2009, when we launched our Parkinson's Brain Donor Appeal

Watch the webchat

Watch the webchat here (20 minutes)

Transcript of the webchat

H: Lis Speight, host

J: Jane Asher, Parkinson's UK President

S: Steve Ford, Chief Executive

L: Lubna Arif, Research Liaison Manager

H: Hello and welcome to the Healthcare Show, I'm Lis Speight. Now then it's a sad fact of life for as we get older our bodies become more susceptible to disease and illness. One in 500 people in the UK is diagnosed with Parkinson's disease each year. It's a progressive neurological condition which affects movements such as walking, talking and writing, and it's a condition that currently has no cure.

As Parkinson's Awareness Week comes to a close, joining me on the sofa to talk in more detail and to highlight the desperate need for donors to help find a cure is Jane Asher who is the president of the Parkinson's Disease Society [now Parkinson's UK] - welcome along Jane.

J: Thank you

H: Chief Executive Steve Ford, welcome Steve, lovely to see you.

S: Hello

H: And also Research Liaison Manager Lubna Arif, welcome all of you. Now we are live and if you'd like to get any questions or comments about Parkinson's disease or about brain donation which we'll talk a lot about a little bit later on, then do get them into us. All you have to do is type your name and your question in the box that's on the screen, press submit and it'll come through to us here in the studio and we'll try to get through as many as we can during the course of the show. But let's talk a little bit first about Parkinson's disease – what exactly causes it?

S: Well what causes Parkinson's is the big question and that's what we're trying to find out. What happens in Parkinson's is that the brain cells die. These are brain cells that control movement, and so the kind of symptoms that people would develop would be stiffness, a slowness of movement, possibly a tremor, and a whole range of other symptoms as well, so problems perhaps of communicating, swallowing, issues of constipation, sleep problems...

H: Right

S: Really a whole range of issues that affect every aspect of living.

J: It can also be very painful, which is something I didn't realise.

H: No I didn't know that.

J: Until I became involved. Several people with Parkinson's have told me how it's like being crushed by an invisible weight all the time, that you can't get off your body. It's really a very distressing condition isn't it?

H: So Jane how did you exactly become involved with the Parkinson's Disease Society?

J: I originally became involved because my brother-in-law was diagnosed with Parkinson's about 5 or 6 years ago I suppose. He immediately joined his local branch.

H: Right

J: Of the PDS and was very impressed by the support and help he got.

H: That's encouraging isn't it?

J: It really made a big difference to him. But he did feel that perhaps the Society needed a bit more of a push in fundraising, raising awareness and so on, and asked me if I would consider helping them. Well of course you're so thrilled to be able to do something.

H: Yes

J: When somebody close to you is diagnosed with such a wretched disease, that I approached the Society and gradually got more and more involved, and help where I can to promote awareness and also raise money.

H: And what sort of effect does Parkinson's disease have on your family?

J: Well it's devastating. It's progressive. It's at the moment incurable, although we are working hard to change that. And of course for the rest of the family it's very upsetting. I mean it varies from somebody with perhaps just the beginnings of Parkinson's, may not be too much affected but towards the latter stages of the disease you know it may mean that your wife, your husband, your nearest and dearest become full time carers basically.

H: Yes it's very stressful isn't it?

J: And obviously depression is a factor, not just because the illness itself can be deeply depressing, but it can actually cause depression in the brain. So it's not an easy thing to live with, for the person with it, or their family.

H: So Lubna who's most at risk of developing Parkinson's? What are the sort of risk factors?

L: Well there are a number of risk factors, and what scientists do now know is for a majority of people, so about 95% of people who have Parkinson's, it's a combination of their genes, defects in their genes, but a combination also of things in the environment, it could be anything to do with their lifestyle, it could be exercise, things like that which also affect – some people develop Parkinson's – but we're still trying to understand exactly what those causes are and pinpoint them.

H: So there's a lot of research still to be done then?

R: Yes

H: But the Parkinson's Disease Society has come a long way – its 40th anniversary this year. Steve just tell us how it's progressed over those 40 years. You know in research terms and treatment terms.

S: Well it's 40 years since the Society was created, and as you say we have come a long way. We've now spent £40million on research over those 40 years. We're now spending £4million a year and there have been some really significant breakthroughs that have come from the funding that we've made. I think the big point is that we've got a very strong research community in the United Kingdom who focus on Parkinson's because we are the people who fund them. We're the largest non-commercial funder of research. So a lot about research, but I think it's also important to point out that we are here as a place of information and support for people living with the condition. Websites, helplines, local information and support workers...

J: The wonderful Parkinson's Disease nurses...

S: Well that's right.

J: ...who are such a help.

S: Yes I mean we invented Parkinson's Disease Nurse Specialists, and for people living with the condition, that's the best thing that could possibly happen, to be able to talk to someone who really understands the complexities of the condition, the day-to-day challenges, someone who can give you time to help work through some of those things.

H: So things that have come a long way but still no cure is there Lubna? Why is that?

L: Well Parkinson's is a very complex condition and as we've both described today, it affects your mind, it affects your mood and it affects your body, and unfortunately scientists still don't fully understand why Parkinson's develops in some people and why it doesn't in others. And if we just look at this, this is a model of a brain here. What we do know about Parkinson's is that the brain isn't working properly. We know that there are two specific regions in the brain, there's one on the left hand side and one on the right hand side, deep within the centre of the brain. And in these two regions there are nerve cells that die much earlier than they should. Now the reason why these nerve cells are very interesting and very special is because they produce a chemical called dopamine.

H: Right

L: And dopamine is really important because it helps nerve cells speak to each other

H: Ok

L: And it also controls major functions such as movement. So what scientists are trying to understand is why these dopamine-producing nerve cells die. So once we pinpoint the causes of Parkinson's, we can then figure out how to fix the brain and get it working properly again, and that will lead us to a cure.

H: OK

S: See there are – I mean there are lots of treatments for Parkinson's, but basically they're treating the symptoms. They're treating the problems...

H: ...not the cause

S: They're not actually stopping that fundamental issue of stopping the death of those cells, and that's what we're determined to try and find – a cure to stop those cells dying, maybe to restore cells that have died, so that people can live a life free of the symptoms. That's what we're determined to see.

L: And I think it's also really important to understand that only humans get Parkinson's, so it's really important that we actually look at human brain tissue as one avenue to try to figure out how we can find a way to a cure.

H: So there's a – the 40th anniversary, we have this big launch don't we Steve? Tell us a little bit about it, about the launch of this brain donation appeal.

S: Well we – as I said we fund lots of research and so what's needed is bright researchers, money to fund those researchers and brain tissue for researchers to work on. So what happens here is we want lots of brain tissue, so that researchers can have a look at a brain of someone whose got Parkinson's, and compare that with the brain of someone who hasn't got Parkinson's, and that's why it's really important that we get the message over that it's everybody who can support us in that way. So we thought, what a brilliant topic for Parkinson's Awareness Week – let's try and encourage the nation, everybody who's touched by Parkinson's, and it does affect the whole family as we've already discussed, to see this is a very practical way of supporting what we're doing and being part of this search for a cure.

H: And there's a website people can go to isn't there?

S: There is - if you come to the Parkinson's Society website which is www.parkinsons.org.uk then on there you can find all kinds of ways to support us actually. I mean this is a brilliant way of supporting us, to sign up and donate your brain when you die. But you know a whole range of other ways as well that people can just join us in trying to make a difference.

H: Yes. Now Jane you've obviously been making a difference as being the sort of figurehead of the Parkinson's Disease Society - now you went along to one of the research centres I understand. Tell us a little bit about that?

J: I went along to the Brain Bank itself, this is the Parkinson's Brain Bank which is owned, run and funded by us, at Imperial College in London. And it's remarkable. I mean the work they're doing is absolutely fantastic. What I was so impressed by was that every brain, by the way which are treated with huge respect.

H: Yes

J: It's really worth knowing that. I've seen how all the researchers and scientists are sort of handling the brains, and how they talk about them. I was most impressed. But every brain will be used in at least 50 different research projects.

H: Wow so it's really worth donating your brain.

J: Quite extraordinary. And all over the world. You know they are sending tissue all over the world. And every study that's going to be done, every project is evaluated properly, make sure it's really going to be worthwhile and hopefully going to produce results. And I was really impressed.

H: Ok. Now we've got some of your questions actually, we'll move on to some of those, and we've had one in from PDS, sorry from Darren. He said "how does one donate one's brain? Is there a form to fill in somewhere? I have no problem with experiments being carried out on bits of my body. It would save me a fortune in funeral costs!"

J: That's the attitude, terrific.

H: Ever the optimist.

J: It's true though.

H: So how do you sort of get involved with it, if you feel that you want to donate your brain to the Parkinson's Disease Society, how do you go about it?

J: Yes, Darren is absolutely right, there is a form, and if you go onto your website which Steve has already said is www.parkinsons.org.uk there are clear links to take you to where you ask to have a form sent to you, and you fill in the form and then when you die, your nearest of kin will ring up a certain number, and everything is taken care of. I mean it's extremely well organised, it really is.

H: Yes. And people carry donor cards don't they? Doesn't that just cover it?

S: No. I mean that's been one of the really interesting things over the last few days as we've had these conversations with people -  people are thinking well I've got a donor card, so everything's fine.

H: Yes, I've done my bit.

S: I think the important thing to understand here is that donor cards are for organ donation into other living patients.

H: Right, yes.

S: So it's transplanting your heart for someone else who needs that. It's not about medical research. So having a – it's great that people have got an organ donation card and what we're saying doesn't in any way cut across that.

H: No

S: People can still donate their organs for – to be transplanted into other people, but people if they want their brain to be used for Parkinson's research need to make that contact with the Brain Bank to sign up, so that all of those arrangements can be put in place. It's only through that arrangement being there that the brain would be used to support Parkinson's research.

H: And do you carry a card then, is it like a donor card in your wallet? I mean how would somebody know if you died?

J: You can...

S: Well I...

J: Yes once you've registered – I'm sorry, up to you. But also your family would know...

H: Right yes.

J: ...to phone a number. You have to obviously make sure they're all happy with it and talk about it, but they would know.

S: That's right.

J: You do also carry a card.

S: So it is the family kind of signing up to this in some ways?

H: Because not everyone's happy about brain donation. I've talked to a few people about it and people have sort of gone "oh that's a bit funny". Is it because we're not used to it?

S: Well we did a survey actually. We asked a whole number of members of the public, what do you think about donating your brain, and it was interesting 7% of people said that they would be prepared to.

H: Right, which is encouraging.

S: Compared to 60% of people who said yes they'd be happy to donate their heart or a kidney, so there is obviously something.

H: Something

J: I'd love to do another survey since this week, I have to say. I think a lot of it is because people aren't used to it, just as you said.

S: Yes

H: Yes

J: The new is always a little bit shocking and frightening. I remember when heart transplants were first talked about.

H: Yes

J: And you know people were relatively horrified at the idea of having their heart from them after death.

H: Now you're just used to it aren't you?

J: Now it's just sort of everyday. And I really think people – we've had such a phenomenal response to this campaign this week that I think people – once they know about it, once they understand it's really going to be useful, they're only too happy to do something after their death. You know it's hard enough to be useful in life, but the idea you could actually do something of use later on, it's wonderful. And otherwise, let's face it, your brain's going to rot in the earth or be burnt – I know which I'd rather have.

H: Not much use to anybody is it when it's like that?

J: Not really

S: But people do have, you know there are sensitivities around this and I think we say we understand and we respect that, but there are other ways in which you can help us and be part of this search for a cure. So we wouldn't want to discourage anybody from being...

H: No so people could fundraise or sort of help out in offices or whatever couldn't they?

J: That's right.

H: At the local branch and so on.

J: Lots of things.

H: It does touch so many families doesn't it, I mean 1 in 500 people it's incredible. I mean everybody really would know somebody who's got it.

S: That's right, I think that's right.

H: And we've had quite a few questions in about sort of the complexities of donating brains and what have you, and we've had one in from Aiden. He says "I'm dyslexic, would this make my brain unsuitable for donating because it works in a different way than most people? I should imagine that people with my condition can get Parkinson's disease like anyone else?" Do you have to be sort of fit and healthy and not have other conditions? Lubna, what do you say to that?

L: Well Aiden can certainly sign up to the Parkinson's Brain Donor Register. What we're looking for is for people with and without Parkinson's to sign up, because as Steve mentioned earlier to figure out what's going on in Parkinson's we need to compare brains with the condition to brains without the condition.

H: Right

L: So Aiden's case is very interesting, so to answer the question yes, people with dyslexia can develop Parkinson's and we would be very interested in him signing up, researchers would be very interested in his case. So what researchers would do is they would look at his brain to see if there are any structural changes there, any changes in genes, the proteins the cells. Figure out what changes are due to the natural ageing process, what changes are due to Parkinson's, if that develops and also what changes are down to dyslexia. So all really boils down to building a better understanding of the conditions and ultimately what we're trying to do is find a cure for Parkinson's.

J: So Aiden in fact you're actually even more special then.

L: Yes definitely

J: I think it's very touching that he might have felt that we wouldn't want his brain. We certainly do and yes, you're special.

S: I think one of the really interesting things actually is the Brain Bank – when they receive a brain from a donor also like to have a very good medical history of that person.

H: Right

S: As well so they'll know what other conditions the person might have had. If they had Parkinson's how long they'd had it, what kind of symptoms they'd had.

H: You need to be in touch with the family then really don't you?

S: That's right.

L: When you actually join the register you fill out a form that gives your full medical history, and this actually gets updated every two years.

H: Right

L: So when researchers receive samples of brain, they also get all the information off the donor regarding medical history so they can sort of marry that up to what they actually find in their investigations.

H: OK

J: And they keep in touch with the family afterwards too.

H: Yes well on that point actually because Nicola has sent a question in actually, she says "what happens to the brains after the research, are they disposed of sensitively?" Because if you have had someone that's died and your family sort of thinks where's their brain going – what sort of happens?

L: Well I think it's important to take a step back and firstly to understand that we don't just hand out samples of brain tissue to anyone. When researchers are looking for brain tissue they apply to the Brain Bank and they fill out a project application form, and they have to very clearly justify how much brain tissue they need.

H: Right

L: And what exactly they're going to be doing with it. Now all that information in the application goes towards our panel of expert scientists, and they review it and they check that the research that's going to be carried out is of a high quality.

H: Right

L: So what we then do is we give them just enough brain tissue for their experiments so there's no wastage.

H: Because it's very precious.

L: Oh definitely

H: Yes. Ok well that's reassuring for people then isn't it?

J: They're also totally anonymous. It's worth stressing that because I did have one – I was writing to some well known people you know, because it all helps to get publicity.

H: Well there are lots of celebs that have signed up actually – tell us a little bit about that Jane.

J: Yes wonderful – Jeremy Paxman said yes, and I have to say when I wrote to him I did say we'll obviously need a large box.

H: He's got a very large brain hasn't he!

J: Of course we now know that's nonsense because in fact the size of the brain has nothing to do with it. Women's brains are smaller – need I say more? But clearly size is not a factor. But yes Jeremy Paxman's been a great help in getting publicity, and Bill Neely and John Stapleton, we got some wonderful replies. But there was one well known person who I will not name who was terribly worried that they know it was his brain but absolutely not, completely anonymous, in case that might worry.

H: And you've signed up as well haven't you Jane?

J: Oh sure, I didn't think twice. It didn't occur to me to be worried, have any bits you want.

H: You're not going anywhere just yet.

J: Hopefully not just yet.

H: That's a good point isn't it, even though a lot of people have actually signed up on the register already because of the Awareness Week, even if sort of a thousand people have signed up, people aren't going to die overnight, so you're still going to need a lot more names on that list don't you?

S: That's right, there are a number of brains in the Brain Bank currently. The interesting thing is I think that something like 300 brains of people with Parkinson's, but only is it – 19?

L: 19

H: Oh that's...

S: Brains of people who haven't...

H: ...very few.

S: ...got Parkinson's. So actually the kind of urgency is particularly around people who haven't got Parkinson's so those comparisons can be made.

L: So if you imagine when scientists are at the bench doing experiments for every sample of a person with Parkinson's they also need a sample of brain that comes with somebody without the condition so they can compare.

H: To compare

L: So we really need to get those numbers up.

H: We're almost out of time actually but time for just one more question, I think from James – he says "is there any continued contact with the family of the deceased, and if so what is its nature? For example to garner further information about the deceased or to inform the family of any results from examination research? Particularly if a previously unidentified condition may be present in surviving members." So if you donate your brain and they find that you've got something genetic, would you then tell the family?

S: Yes that's a really good question, and I think what happens when you sign up to the register, you're really entering into a long-term relationship actually and so before you die you will be receiving regular updates and Lubna's talked about updating your clinical history as well. And then when you die, the staff deal very sensitively with the family actually and make sure information is given. When a person dies and their brain is examined, a report is produced and that's made available to the family, and then if there is anything that's picked up, that may have implications for surviving members, then the staff in the Brain Bank will talk to the GP.

H: Right

S: And you know assess the level of risk and how that communication is managed really.

H: So that might be quite useful actually in the long run?

S: I mean it could be useful. I just think it's really important to emphasise just how professional...

H: Yes

S: ...this service is.

H: And how valuable those brains are treated.

S: Yes and the high standards that are there, and the levels of communication and involvement.

J: And you're also of course told the results of the look at the brain as to whether this person did have Parkinson's, whether it was a slightly different condition.

H: That might be very reassuring.

J: Very comforting and reassuring to know exactly what it was that was wrong.

H: Ok guys well thanks very much for coming in, it's been really, really interesting. Now although there has already been a lot of support for the brain donation scheme, more names are needed on that list. So if you want to donate, or pledge to donate your brain, then all you have to do is to go to the website which is www.parkinsons.org.uk and there's also a helpline which is 0808 800 0303. Well thanks very much for watching the Healthcare Show and we'll see you next time, bye bye.

END

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