FUNKY, UPBEAT MUSIC Captions by Glenna Casalme www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2016 # La, la-la, la, # la, la, la, la-la, la, la, la-la. # La, la-la, la, la-la. # URBAN MUSIC Have you ever wondered what makes you you? It all comes down to your brain. Your brain is the most mysterious and wonderful thing in the universe. My name is Dr Malvindar Singh-Bains. I'm 28 years old, and I'm a third-generation Sikh NZer, and I'm here to cure brain diseases. In the lab, I'm working hard to try and unlock the secrets of the brain. But a massive part of my job is to go out into the community and demystify the work that I do. So, this is a real human brain. What we try and do as scientific neuro-researchers is we try and find new ways to treat diseases. So for example, who's heard of Alzheimer's disease? Stroke? Parkinson's? What about Huntington's? No one? Because actually, my specialty is in Huntington's research. So, Huntington's is actually called Huntington's chorea. Chorea is Latin for 'dance'. So the way these patients look, they're continuously moving, and it's uncontrollable. Eventually the disease kind of takes over your body, and so you only have about 20 years to live. Where do the brains come from? So, the brains are from patients who agreed to donate their brain to science. People misunderstand what makes the brain sick, and there's also some confusion around brain donation. This misconceptions around brain donation get even more complicated when you bring culture or religion into it. ELECTRONIC MUSIC Many cultures share the view that the brain is sacred and it needs to stay with the body after death. That can be a hurdle for neuroscientists like me, who are working on post-mortem human tissue. Growing up, I've always been taught about this concept called sewa, which is Punjabi for 'service' ` to serve others. In my case, my skills are as a scientist, and I wanna be able to serve others by using my skill set to give people information. Brain diseases can affect anybody, irrespective of their cultural background or what religion they are. So I want to be able to reach out to all communities and be able to tell them about these brain diseases. BEEP! SYNCOPATED MUSIC People often assume that if you're a scientist, you're supposed to be an atheist ` that science and religion can't coexist. For me, science and my faith, or my religion, We're always talking about science, but we're also talking about those big life questions. I think it's perfectly doable to be a scientist and to be, um, a person of religion. For me, that's Christianity, and that's something I take wholeheartedly and marry the two things together. Do you guys ever feel weird about dealing with human tissue or... You know? Uh, I think there's, like, definitely a sacredness to it. That's what personally I feel. Mm. I don't know about you guys, but when I was growing up, when we used to go to, uh, funerals, for example, I was never allowed back in the house unless I put something on my head and, you know, I've washed my hands. Yeah. We have that in Sri Lankan culture as well. Like, I remember when I was little, like, it was the same kind of thing. I know that in my culture, you usually go to the grave and wash the grave or` and with rose water. Like, just to, you know` just to clean the house. But also, from a scientific perspective, it makes sense to be hygienically clean. ALL: Yeah. I know when I'm processing the tissue, sometimes, through my mind, I'm uttering a silent prayer. 'Bless me, for I'm about to conduct these ex` amazing experiments, 'and we really want to get the most out of it for the tissue.' At work we have to be very mindful that, you know, the tissue we work with comes from different cultures. We have to be mindful of the different cultural perspectives when it comes to the treatment of human tissue. Our attitude towards neuroscience at the Centre for Brain Research is quite unique. We collaborate with communities and families every step of the way. This type of approach was pioneered by my amazing boss, Professor Richard Faull. And the main thing, I think, with all interaction with all people is just to be honest,... < Yes. ...to have integrity,... < Yes. ...to show that you actually have a concern for the value of human life. Mm. 'How are we gonna get this out to the wider community?' < Yes. And is there a particular communities you want to relate to? < Yes. Your own community, for instance. < Yes. Yeah. Um, well, I have thought about going out into, um, the Indian community, in particular, starting with the Sikh community, which is quite a nervous, um, thought. I actually don't know how it's gonna play out. I'm thinking that there is going to be an initial closed, um, attitude to the idea of, you know, just talking about donation as a whole. One of the challenges in working with the human brain, of course, is that all of the different communities have different cultural attitudes to the brain. Yes. I found that out very early. I have very strong connections with` with Maori. Because I knew that Maori were very sensitive about, first, touching human tissue,... < Yes. ...let alone touching the human brain,... < Yes. I thought, 'How are we gonna do this?' And in fact it was Maori families themselves who developed the process and taught me that process, and we went on to maraes and talked. Right. And for your own communities, the process will be completely different to what you expect, and that'll be a journey. It'll be a journey of discovery, you see? HIP-HOP MUSIC My mum is a NZ-born Punjabi. My dad came from Fiji. My brother and I, we were born and raised in West Auckland. I` I would say I've grown up in a progressive Sikh family. So that means we do have our cultural values, but we also amalgamated into Western society. Hi, Mum! Hi! How are you? I'm good! What are you doing? Roti dahl. So, Mum makes the best rotis in the world. It's only flour, wholemeal, with a bit of salt and oil in it. That's it. Anyone can whip it up. Oh really? Yeah. Can I whip it up? Uh... (LAUGHS) Would you trust me in the kitchen? Uh,... no comment. (GUFFAWS, CHORTLES) And look who we found. And that's Dad! Hi, Dad! Hi, Malvi. How are you? Good. How was your day? Oh, I had a long day today. What are you doing, Dad? I was just having my kava a little bit. Is it nice? Yeah, it relaxes you, yeah. Oh. So` Especially hard day at work. It just relaxes me just a little bit. 'So, I know that my parents are both very very proud of me. 'However, with that comes the struggles they have with some aspects of the work that I do. 'There are a few topics that are... not taboo, but they're a little bit out of bounds, 'particularly where there might be cultural implications.' Brain donation is a really tough topic to discuss, and I haven't really had the guts to be able to speak about it with my family. So I don't know how wou` how they would react if I was to` to go down that path with them. BEEP! DREAMY, SUBDUED MUSIC So, as a scientist, sometimes we get caught up in our experiments and we get so enthralled in our lab work, we sometimes forget that we're actually trying to help people. So I've come to Wellington today to meet an incredibly courageous Huntington's family. So, Bridget Lyon, she's got the disease. Her mother had the disease as well. So it goes back generations. She's got two sons. One of them is gene-negative, but the other one has a 50-50 chance of getting the disease. This is the Aberdeen Lunatic Asylum, where my great-great-great grandmother died of Huntington's disease. That's me when I was a little kid, and my grandmother. She died when I was 3. She was just really drugged up the whole time. They didn't tell my mum what it was until she'd already had three kids. Right. And then` So then my mum of course developed it and then took 15 years to die. So our` our eldest son is at risk, and he` he knows it. We've shared it with him from the day we thought it was shareable. And what do you think? What does it feel like? Does it feel like you`? Do you feel lucky ` like, you won't get it ` or unlucky, like you will get it? Unlucky. POIGNANT MUSIC It` It's hard as a parent, because I say to him, you know, scientists are working madly to fix this, and` and I'm really confident, as his father, that they are. They're gonna fix it. Are you gonna fix it? So, in terms of research, what's happened in the past five years has been brilliant. We've got a drug that's successfully going to clinical trial. And so in my lifetime, I want to cure this disease. It's just a matter` I just wish you could, um... you could cure it in the next five to 10 years, and the reason is because I have two brothers, and of the, um, three of us, we've all tested positive for Huntington's disease. So you can see it coming. So while you're still sane, you can watch the scientists. And you watch them, and you're like, 'Please`' (CHUCKLES) You know, 'Please cure this. 'Um, please save me,' you know? Um, so we'd really like it if you could cure it in the next five to 10 years. Like, seriously, that would` that's the only kind of thing that keeps me from going completely insane. Yeah, I feel guilty every day that we haven't come to the cure yet. Um, because I see families with the next generation in line, and we haven't got an answer for them yet. And so we haven't got that magical drug. So I feel guilty that we've found the gene and we haven't found a cure for it yet, and we should've done it by now. POIGNANT MUSIC BEEP! The reality of, um, this disease that we're trying to tackle in the laboratory really came to light when I met the family. Um, we've got Bridget, who, you know... She wants to see a cure so that she can, you know, live happily and, you know, be a mother to her children. And I look at those children, and I think, 'OK, I` I really need to, um, pull out something extra.' And it's a huge motivational thing for me as well. UPTEMPO PIANO MUSIC BEEP! So I'm taking my outreach programme into my temple in order to address any myths and misconceptions there could be about brain donation or brain research. Traditionally, when I give presentations, I normally bring in autopsy tissue in order to highlight the disease. But here, it's a different story. I'm gonna have to ask permission from an elder to see if I can bring in this tissue, and whether it's culturally appropriate here. So, from my perspective, um, our community is just as affected by these diseases as other communities, and so I want to provide an equal opportunity for all communities to hear about the benefits of some of the work that we're doing and also create awareness as well. Oh, that's very good. Yeah. So would it be possible, um, to allow me to give a presentation here in a Sikh temple? So do you think there'll be any problem or any objection for me to bring any human specimens in ` so pieces of human tissue? Uh, not at all. No? Not at all. OK. That's wonderful. I'm always nervous about that. BOTH LAUGH DUB MUSIC BEEP! Being an organ donor on your driver's licence doesn't make you a brain donor. There's actually quite an application process you need to go through. Your entire family has to agree for you to be able to donate your brain to science. Hello! Hi, Malvindar. Today someone I know has agreed to donate his brain. His name is Peter Garelja. He's my former high school principal, and he has Parkinson's disease. Yeah, I think if you can give me a hand... Yeah. 'Course. One of the issues with Parkinson's is the resting tremor. And the fine motor` Can't do anything with fine motor skills. No, no! 'Course not. There you go. Ta. Thank you! Basically, what happens is when a brain comes in, it comes into this room. We have to dissect it. Each brain is designated with a number to respect patient confidentiality. So that's why I would never know if I was dissecting your brain or not, and I think that, you know, keeps a credibility. You know? Yeah. Just all I ask is please be gentle with me. I, um... I know you will be, but just one of the reasons for donating my brain is to know that there are people like you working with what's left of me, I think. Yeah. Every brain is treated with utmost respect. You know, the tissue is treated so incredibly well. We will never ever do your brain wrong. R & B MUSIC Why do you wanna donate your brain? I wanted to leave a legacy, and, um, all my` all my life's really been about learning ` professional life, anyway ` and now I've got Parkinson's, I've been trying to learn as much as I can about that, and it's one of those diseases that seems to have no diagnosis, no cause, no` no cure, um, and I'd love to be` And it's a brute of a disease. So I'd love to be able to help to get round that, I think. Have you spoken with your family about it? And how have they reacted? They just said, 'Dad, you just do what you wanna` You do what you think is right.' And so I think about what you're saying in the context of my own family, and I think, you know, cos the brain is such a, um, spiritually important organ, we always think about it as the most sacred part of the body. I think about this ` how` how I'd feel if I had the same conversation in my family. You know, how would my, um, dad react? Because we've got quite a big cultural aspect to it. It's a very heavy topic to discuss, but I think it's something that should be spoken about even now, in my community as well. 'That was a real humbling experience for me. Talking about the subject of brain donation 'and seeing him take that big step really was` was quite a big deal. 'So it's been a really important decision for Peter and his family to make together,' and it's really made me think about` I've never asked my family whether they'd consider donating their brains to science, and I think it's about time that I asked that question. BEEP! URBAN MUSIC BEEP! So, career-wise, life is on track. Um, my family are really supportive of everything that I do. However, one thing I've never discussed with them, and it has been in the back of my mind, is this topic of brain donation. Do you remember Peter Garelja? Oh, yes. Yup. Yeah? Yeah? Our principal. Yeah, yeah. Waitakere's principal. He has Parkinson's. > Oh. > Yup. He came in today because he actually wants to donate his brain. < Mm. Oh. OK. > That's good. > Does that freak you out? Yeah. Because it's the fact that it's you know` that we knew him. I find it disturbing, but... Do you? > A little bit disturbing. Just because you look at that` You see that person alive, and then it's, like, next minute you're seeing their organ in front of you. Well, no, because we` th` We don't get to know their names. Wouldn't you kind of develop an emotional connection, you know, if you did know? But we're emotionally connected to all of them,... because they've all come from a family ` a family who's agreed to donate. Remember how she said it's more precious than gold? That that is the most priceless gift... Yeah. Yeah. ...that anyone can give is something for people to look at, to continue research to try to find cures for those kind of illnesses. If you consider brain donation so priceless... Priceless, yeah. But then there's that turmoil. What's the turmoil? The turmoil is the fact that` that,... you know, when` when you die, for, like` for us, right, we have the crem` cremation. The whole` Your whole body should be cremated. Right. The act of cremation is getting someone to the other side, right? Yup. Would you put yourself at risk of not knowing whether you're gonna go to the other side or not, > or help the next generation? What would you choose to do? Well, I think it's very personal, because that's part of me. Right. The way that I was brought up, you're sort of made to think that, no, you shouldn't be doing that; you shouldn't be donating` < Why? Uh, tapu, I don't know. Like, maybe the Maori people would call it tapu, I don't know, or sacred in that everything should go. So, guys, here's the big question ` would any of you consider donating your brain to science? Oh, come on, Mal, that's not fair. You know, we've been discussing all these other things, and now you're trying to ask us to give you an answer on that. Personally, I wouldn't be able to give you an answer on that just like that. I'd have to put a great deal of thought, think about it. We need to discuss it more. Discuss it more as a family. I would do it. If that's gonna help, then I would` I would do it. I'm still 50-50. Mm. > I think... It's a` you know, like a very` you know, like a very... hard... discussion with the family members, then we should proceed, because this is not an individual... Choice. > ...choice. OK, that's it. (LAUGHS) That's final. SUBDUED MUSIC UPBEAT MUSIC BEEP! So, today I'm going to be talking to my people in a Sikh temple about the brain, how it works and about donation. So, brain donation's obviously a massive topic, as seen by the way my family reacted to it. There's obviously a lot of families who would have similar discussions, and this is talking to my people, in my temple, my community. It's the idea of bringing the lab and the temple under one vicinity. I'm quite nervous about it but also excited at the same time. We hold high spiritual and religious significance in covering our heads ` so whether that's the practice of covering our head to bow before the Guru Granth Sahib or if it's just a symbol of respect towards others. So the take-home message here is what we do on the outside to preserve our spirituality or our self-respect, through tying the pagri, it's just as important to focus on what we're doing on the inside to preserve our mind. Well, thank you, everyone for your kind invitation to have me here today. So if you have any questions afterwards, we can translate some of it into Punjabi for you. I would like to congratulate and thank Dr Malvindar Singh-Bains for the great presentation. She's an inspiring and brilliant young leader of our community. May God bless. SOFTLY: Thank you. APPREHENSIVE MUSIC This is first time I have listened to you, Malvindar. I really enjoyed. Just so brilliant. Do you know what I've felt? Not that you have only made the people aware of the three diseases, but you also have been a role model. I think we will have a few neuroscientists here today because` Oh, I hope so! This is what I know I want you to know too. That's right. Because no one should be ignorant of information. Just like sharing, actually. Yeah, exactly. Sharing is caring. Just getting the word out there. Because a lot of these families have no idea what's going on, and they might have elders in their family that are forgetful, and they're, like, 'Oh, yeah, it's just old age.' Yeah, but maybe it's not. But now it's like` It's the thinking twice thing. And in our community, what more can you ask for? BEEP! So, standing up in front of my own community to give a presentation is something else. It's one of the most honourable experiences I've ever felt ` just to be welcomed by everybody. And to be able to give a presentation in the context that everyone would understand is something really special. How hard is the plastic? So the plastic is very very hard. It's like a gel. For me it's a fantastic opportunity to be able to show that the lab work that I do and my religious beliefs can come together. Being received well by my own community gives me a lot of confidence. I will continue to reach out to other communities, because brain disease doesn't care about what culture you are or what religion you are or what you believe, but understanding it can change lives. Captions by Glenna Casalme www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2016