Captions by Faith Hamblyn and Pippa Jefferies. www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2014 INSPIRING MUSIC MUSIC CONTINUES So, what drugs do I need, kids? So, what drugs do I need, kids? Um, these ones? So, what drugs do I need, kids? Um, these ones? You need these ones. No, I think I'm OK for those. No, I think I'm OK for those. These ones? No, I think I'm OK for those. These ones? No, I put in some of those. OK. That should be enough drugs for a whole week. I won't be in hospital for that long. I should be back Friday. 'At 43 I was diagnosed with Parkinson's disease. 'Today, just five years later, I'm off to hospital to undergo a pretty intensive procedure ` 'deep-brain-stimulation surgery.' I'm gonna go on a big adventure. I'm gonna go on a big adventure. Yeah. (CHUCKLES) I'm gonna go on a big adventure. Yeah. (CHUCKLES) They're gonna put me to sleep. Then I'm gonna have nice dreams and I'm gonna wake up with two things in my head, and I'm gonna be just peachy. OK? OK? OK. I'm one of the one in 10 people with Parkinson's who develop it under the age of 50. It's a bit of a merciless disease, and it only goes one way. But I'm determined to try anything to buy myself more time with my family. Bye. See you. Be good. See you. Be good. OK. I love you. See you. Be good. OK. I love you. Don't worry about me. Help. Help. Daddy` Help. Daddy` Sweetheart. We need a bag, I think. May as well take a honey one. May as well take a honey one. I put my phone with my book bag. 'My life before Parkinson's was full on. I'd met Kate, 'we were in love, we were expecting our first child, I had a successful marketing career, 'but at 43, I felt like I was falling apart and with good reason.' He would, kind of, almost apologise to me, say, 'I'm so sorry,' you know. I was, like, you know, 'Don't be ridiculous.' It could so easy have been me or, you know, um... This is just what it's about. Right. So we organised? Right. So we organised? Yep. Right. So we organised? Yep. Teeth brushed? BOTH: Yes. BOTH: Yes. Hair done? BOTH: Yes. Hair done? Yes. Clothes on? Clothes on? Yes! Clothes on? Yes! Ready to rock 'n' roll? BOTH: Yes! BOTH: Yes! OK. Let's go. BOTH: Yes! OK. Let's go. Yay! I go from being at peace to being very angry. And I'll cycle through that all the time. It's internal. You know, you're always wrestling with it, so you've just gotta, kind of, be with that. ACOUSTIC GUITAR MUSIC For a start I've had to cut back my hours. Kate is working full-time, and it's me who runs the kids to and from school. MUSIC CONTINUES (GIGGLES) CHILDREN CHATTER OK, you have a lovely day. OK, you have a lovely day. All right, Dad. See you. OK, you have a lovely day. All right, Dad. See you. Mwah. (GIGGLES) CHILDREN CHATTER Morning, Trevor. How are ya, buddy? Morning, Trevor. How are ya, buddy? Hey, morning, mate. How are you doing? You all right? Yep. Yep. Good stuff. Three years ago I formed a partnership with Trevor Moodie. He's a great guy. We are The Department of Marketing. BIRDS CHIRP When people see me, they just go, 'Something's not right.' So if I don't deal with that quickly, they start filling in the gaps. I'm in a place where I can't really hide it, so I don't. Now, Peter, you haven't met me before, so before you start wondering what the hell's going on with my head, I've got Parkinson's. It won't affect anything I do, and I'm not drunk or... mad. Cool. Let's get on with it. I kind of forget I've got Parkinson's, you know, whenever I'm doing anything that I kind of love. And that's part of the conundrum of contemplating not doing it, because it keeps me very mentally alive. Thanks for that. Thanks for that. No worries, bud. Thanks for that. No worries, bud. Awesome. Yep. Good one, Andy. Sometimes I don't think I'm being fair to Trevor. You know, I don't have a lot of proactive energy. We aren't growing the business at a rate that I feel is acceptable, so I'm... I'm just working out what's next for me, because, you know, stress and fatigue aren't good for me. Um, and sometimes I just feel... I'm feeling like I'm not doing enough. Daddy! Hi, sweetheart. Hi, sweetheart. I love you. Mwah! Mwah! Ow! You kissed my ear. 'Our lifestyle has definitely changed. We rent now. The mortgage just had to go.' It's a simpler life, but I'm actually finding it... more... rewarding in a way. You have to get rid of all the clutter and really look at what's important and what's not, and, um, it's actually really freeing. We've gotten rid of the half-a-million-dollar mortgage. We've gotten rid of the half-a-million-dollar mortgage. (LAUGHS) Yeah. TINKLY MUSIC BOTH: Two. Three. Parkinson's kind of has a way of making you shrink, and you really have to physically fight back. A couple of times a week, I follow a physio programme that forces me to make all my movements bigger. The purpose and what we're focusing on is the bigness. And the purpose of why we're doing big is because, as you know, Andy, smaller is how we become. Smaller is definitely what I felt my life was becoming, so I made this video. SLOW PIANO MUSIC Hello. My name is Lily McDowell, and I want to share a poem my dad wrote for me and my sister, Pearl. So, it came about when I was contemplating having to tell these two one day. And, you know, every parent wonders how they're gonna... share that piece of news. And... as part of my process of going through it, I just jotted the poem down. When he told us, it wasn't very clear, and we were, like, 'Still don't know what you're talking about.' And so the poem is called Smaller, a poem about Parkinson's disease. PIANO MUSIC MUSIC CONTINUES READS: 'My balance, the space in the world I take up. 'It crept up on me in microincrements.' MUSIC CONTINUES THUNDER RUMBLES 'And...' THUNDER RUMBLES PIANO MUSIC 'And...' But I'm still me. But I'm still me. Yes, you are, Daddy. I love you. I love you. Mm. Hi, Johnsons. Hi, Johnsons. Hello. Hi, Johnsons. Hello. How are you guys? 'Two years ago I met AJ. He's also got what they call early onset Parkinson's.' Hey, mate. How are ya? Hey, mate. How are ya? Welcome. Good to see you, buddy. Hey, mate. How are ya? Welcome. Good to see you, buddy. Good to see you. 'What's really interesting is that he's had a treatment called deep-brain stimulation, 'and I could be a candidate for it too.' Our big news is that we've got an appointment to see Dr McAuley on the 19th of November. Oh, fantastic. Oh, fantastic. Yeah. Only 20 people are offered it in NZ every year. You have to be right for it, but it seems to have made a big difference for AJ. One of the main things that surgery has done, apart from providing me a much more stable on profile, is the pain is gone. Oh really? I haven't got a bad tremor, but I've got wicked dyskinesia. Yeah. Yeah. And so,... you know, I get looked at quite a lot when I go out in public, and the kids all stare at me and all that sort of stuff, cos I'm a bit... You kind of gotta put up with that, but my voice... I'm starting to have trouble swallowing. And I've had the odd choking episode, which just terrifies the pants off me. AJ had his operation 18 months ago. Now he has an electrode in each hemisphere of his brain, powered by a battery implanted under the skin on his chest. Can you actually see it? Can you actually see it? Yeah. It's quite a pronounced lump. That's where the neurostimulator sits, um, and the wire runs up there. um, and the wire runs up there. < Oh yeah. um, and the wire runs up there. < Oh yeah. < You can feel the wire. Yeah. Sits in there, and it's crossed over. There's two deep tunnels along the top of my skull. < Can you feel them? < Can you feel them? Oh yeah. And I've got two bumps here, two horns. I think fear is the only thing stopping me from doing it. It's a Band-Aid that's given our family some time. It's a Band-Aid that's given our family some time. I'm up for it. CHILDREN CHATTER Hello. Hello. Today I've got an appointment with my neurologist, Dr Barry Snow. The surgery will depend a lot on his recommendation. DBS is just a terrific and transforming thing for most people. Yeah. Yeah. But not everybody. I'm quite clear that there could be a lot of benefit or there could be minimal, but it's not gonna do any harm. but it's not gonna do any harm. Do you mind walking out there? No, that'd be fine. No, that'd be fine. OK. Hopefully, it won't be too public. Let's go open the door. DBS is only suitable for about one in 10 people with Parkinson's. Good. Now turn around. What's actually happened is you took your medication about 15 minutes ago, and it's starting to work. DBS won't fix everything, but it'll certainly help out my motor skills. So this is the miracle of Sinemet. > So this is the miracle of Sinemet. > Yeah. The miracle is it can improve the Parkinson's; the frustration is that you get these ups and downs. > Everybody with Parkinson's has their own version of the disorder, yeah. And, Andrew, that includes your own response to the deep-brain stimulation. And... And so it's reasonable to, uh, expect or hope... that the DBS will make you as good as your best levodopa response. that the DBS will make you as good as your best levodopa response. Yeah. OK? OK? That sounds pretty good. OK? That sounds pretty good. Yeah. Yeah, I think so too. Fundamentally, it should stop a lot of the shakiness that you're seeing now and the dyskinesia. It won't fix Parkinson's, but it will... fix a major... aspect of the motor symptoms. Deep-brain stimulation has become one step closer. I passed the test. Time to check in with someone who's been through it. Good to see you. Good to see you as well. Welcome back. Good to see you as well. Welcome back. Good to be back. AJ has made a video showing what happens if he turns off his DBS unit. It's gone viral, and it's been seen by millions. Hi. This is me... with the power on. (MOUTHS) And this is me... when I turn it off. Oh, you won't be able to read that ` it's shaking too much. So it's almost an instantaneous reaction. I can't control this. My voice has... gone. It's harder for me to... get words out and speak. And if I tried to stand up, I'd fall. Um, if anyone... thinks I'm faking this, um, I'm not. Um, I can't... control the tremors and... dyskinesia. The twisting in my neck is called dystonia, and it is really quite uncomfortable. So I think... party time is over. Um... BEEP! BEEP! Ohhh. Almost automatically. (SIGHS) The power comes back on. And I'm steady. The effects of DBS can be amazing, almost unbelievable. I can only hope it's the same for me. That, uh, is life-changing. Having surgery is pretty dramatic and pretty drastic. Having surgery is pretty dramatic and pretty drastic. Yeah. But, at the end of the day, neither you or I have really any choice in the matter. No. No. Um, and the results are fantastic. You've really filled in the holes. Cheers. No problem at all, mate. Well, best of luck. See you on the other side. See you on the other side. See you on the other side. See you on the other side. See you on the other side. Cheers, bud. This is your room today. This is your room today. Thank you. OK, and, uh, before I get things started, would you mind...? I'm just full of hope for this, and that's what DBS gives you. I'm not... It's not... I'm not expecting rainbows and fireworks, but if I can be better, if I can get back to work, if I can help raise my kids better, for this procedure, you know, that's why I'm doing it. Hi, Lorraine. Hi, Lorraine. Hi, Andy. Hi, Lorraine. Hi, Andy. How are ya, hon? How are you? Hi, Kate. Hi. Hi. What's the procedure from here? It's a pretty quiet afternoon, really. Oh, there's little bit going on. Oh, there's little bit going on. Yeah. So, the house surgeon will come and admit you. And then tomorrow morning, you'll be going to theatre. Cool. > Cool. > For the operation. And we'll get you through it. And we'll get you through it. Yeah. And we'll get you through it. Yeah. You'll be fine. He'll be fine. In the middle of the surgery, he put a probe in and everyone just came round the front, and he said, 'Move your fingers. Move your eyes left, right, up, down.' And, um, they were turning it on and were doing some testing to make sure it was in the right place. And so I got a little bit of a sense of what the tuning was like, and even under some pretty heavy sedation,... I got... I got quite excited, so, you know, that was the light at the end of the tunnel. Well, before the operation, um, I woke up in the middle of the night and couldn't stop thinking and basically was terrified so I couldn't sleep, so I got up and went and asked the night nurse for some paper and pen. It's called Will I? READS: 'Questions are buzzing around in my head as I lie here tonight in my hospital bed. 'Will I be more? Will I be less? It's freaking me out, I have to confess. 'Will I still be slow, still feel like lead, my face still a mask with these wires in my head? 'Will I be better or will I be worse? Are the risks worth taking to be free from this curse?' Part of this bionic man or Energizer Bunny kind of thing that I'm doing to myself by putting, you know, wires into my head and sticking a battery pack in ` at great personal pain, I might add, um, because it... it has hurt a hell of a lot so far ` um,... you know, I'm doing it because I wanna be more. I don't wanna be less. You know, I don't wanna go... to my grave slower and smaller. You know, I kinda wanna live as big and as large as I can. Dunno who sent these. Very generous. Kate's had to assume a huge extra load ` she's gotta be a mother, she works full-time, she's gotta look out for me. I'm still OK, but I do require more managing than your average husband. It's easier for me, because I'm having this thing done to me; she's gotta stand on the sideline and worry. I'm fortunate that I work somewhere that are very accommodating and understanding of, kind of, what's happened in our lives. They have made some wonderful allowances for me to be able to cope. At times I've thought that, you know, I'm not coping, but there is enough in there to actually... I've found enough inner resources and outer resources to actually, kind of, like, go, 'No? OK, come on. Off we go again.' Um, and I actually... I just can't sit in that place of actually... of thinking how miserable this is, because there's just absolutely no point. Um, I've just got to look at the time that we have and feel quite blessed that we actually do have it and that we've been given this gift of making, you know, Andy's life improve by so many years, you know? I mean, there's not a lot for me to sit around and wallow about. Um, it's not going to do me any favours, and it's not going to do the family any favours. And it's not how I feel. We're struggling to survive fiscally. With me not working, she just has to work. Well, it's two weeks since... two weeks and two days since I was actually under the knife, and there's just some little things happening which are kind of encouraging. So I'm feeling a lot clearer in my head. Just having a good night's sleep has just really changed my world. I don't wanna get too excited. You know, that would be, um, dangerous, if you like. I just think that would be probably foolish. Um,... I'm just quite happy to take what` what comes. BIRDS CHIRP Hello. Hello. Hi, gorgeous. How was your day? It was great. Look! Look! I have some Spanish homework, and... I have a journal. Um, pizza's made. In the oven. Just gotta put Pearl's pineapple on it. Lou's come up for a couple of days from Queenstown. She's just` She's picked the girls up from school the last couple of days and is helping us with the meals. Kate and I couldn't do it without our families. You know, we, um` We have all sorts of support at all sorts of different levels, but this is what` yeah, this is the absolute basis of it. Today I'm gonna go for a walk with the girls. That's what it's all about for me. I mean, people say look for those moments of gratitude in your life, and for me it's just about the kids, cos they just make me` they just make me laugh. They're just so priceless. It was really annoying because I don't know how to play any other position other than goalie. Right. Right. So I just` I didn't know what I was doing, > and I was really bad at kicking the ball cos I kept on falling over. > BIRDS CHIRP, PLANE PASSES OVERHEAD You remember the week before my operation, you were worried? Yeah. Yeah. You were having trouble getting to sleep? Mm. Mm. So how...? How is it now? When I saw your eye, it was a bit overwhelming. But now I can really understand it, and I'm fine with it. What about Pearl? What about Pearl? Uh, Pearl did, um, cry a bit at night just because it's a bit overwhelming for a 5-year-old and an 8-year-old to have their 48-year-old father go through surgery like this. Are you worried about the second procedure? Do you know what's going on? I... do. Um, when I... When I didn't know about it, I thought they were going to get, like, some AA batteries and just stick them in there. Right. Right. Yeah, and I already took the ones out of my remote. I'm proud of you both. I'm proud of you both. Thanks. I'm proud of you. > BOTH CHUCKLE PEOPLE CHATTER Hey. Hey. Andy, Dr McAuley. Hi. Dr McAuley has just come to see you this morning. How are you today? How are you today? Morning. How you doing? How are you today? Morning. How you doing? I'm doing OK. I wanted to tell you briefly about what's been done yesterday. This is one of the units exactly the same that has been put into yourself. So it's got a battery inside it and the electronics that produces the electrical pulses. And it's been put in here. You can feel the bulge of it just there. This is where the cut was done, where the surgeon placed it into a little pocket he's devised underneath the skin there. The pulses go up this wire, around up to the brain. Mm-hm. Mm-hm. So the wire's been put in through the top part of the brain, right down deep into this part of the brain, the brainstem. That's the wire that's actually in the brain, and you can see the four tiny, very fine wires running down it so that we can send an electrical pulse down any one of those. And today we have to work out which is the right one to send the pulse down to or which combination. And we can work out that by trying out each one in turn in various combinations. Cool. Let's get on with it. Morning, Andy. Morning, Andy. Good morning. Morning, Andy. Good morning. We're about to switch you on. Cool. OK, Andy, so we'll just put this receiver over the IPG, which is on your chest wall there. Now I'll get my table all set up, we'll turn the machine on and we'll get going. Cool. Um... Um... What's happening there? Um... What's happening there? Pins and needles in both of... We don't know how much difference it's gonna make, but just any difference is going to be, you know, um, a little bit being able to get to get some of` reclaim himself. Almost instantaneously you feel your limbs loosen up and the tremor would disappear and the coordination would improve. But we'd go through the range of having no effect, minimum effect, good effect and then, like, a really overpowering effect ` it was going too far the other way. Uh... Uh... < You OK? Yeah. Yeah. < You still feel nauseated? Yeah. < You still feel nauseated? I'm all right. < Just tell me, because I need to record all this. < Just tell me, because I need to record all this. Just` Just a touch. < Yeah, OK. So we've tested the four contacts, or the ports, as Dr McAuley called them, and we've found that the bottom two contacts probably were the best in terms of treating your Parkinson's, so it's all looking very promising. so it's all looking very promising. Cool. Looking back, I'm in no doubt that the procedure was worth` was worth all the angst. I've got a huge amount of time back and a huge amount of quality of life. He's actually able to go on bike rides with us. It's just really nice. It's just a really great change, and I think it's going really good for the family. Oh, bless you. I'll just give you a little bit. The motor symptoms have definitely almost disappeared. I'm a bit slow, but I'd rather` rather be a bit slow than being fast and jerky and those things, so it's better that I'm just a... a bit quieter. so it's better that I'm just a... a bit quieter. Yeah. Yeah. < Lift the cup again. < That's pretty good, isn't it? < That's pretty good, isn't it? Pretty good. < That's pretty good, isn't it? Pretty good. < (LAUGHS) It was a dangerous winter with you and a bowl of soup. I had to actually go and get special soup spoons, didn't I? The other thing I've got back is my smile. The other thing I've got back is my smile. Yeah. (LAUGHS) You know, I can't tell you how much that means to me personally. Just to have that part of you back, where you` I just get full engagement when, you know, we're talking, um, has just been, you know, immense. It's really nice to be smiling again. It's really nice to be smiling again. Yeah. I'm a lot slower. I have very little dyskinesia. I have the odd` the odd twitch. And I've got a lot less medication on board, and, um, I'm just` I'm a whole lot more at ease in my body, really. My voice is a whole lot b` more stable, and I'm not shaking, so I don't look as bad. Let's look in your room to see if it's in good shape or not, eh? Let's look in your room to see if it's in good shape or not, eh? OK. GENTLE MUSIC Physically, I don't manifest Parkinson's like I used to, but I've still got it. And the disease keeps rocking and rolling, but, um, I've got a whole lot of quality of life back. I've just got time back, really, you know? It feels like I've wound the clock back. MUSIC CONTINUES UPLIFTING MUSIC Captions by Faith Hamblyn and Pippa Jefferies. www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2014