* (UPBEAT, ENERGETIC MUSIC) Captions by Glenna Casalme www.able.co.nz Captions were made with the support of NZ On Air. Copyright Able 2017 Guys, my name's Sam. I'm the official 'look after the audience' guy. So on the count of three, give me a big, loud clap. One, two, three. (AUDIENCE APPLAUD) If you're clapping like this,... (CLAPS WEAKLY) that's utterly useless to us. (LAUGHTER) We need you to full, proper, 'Oh, yeah, that's the stuff!' So, believe it or not, that is what I do for a job. (CHUCKLES) Sometimes it's good. Opinions about people's answers. I'm gonna sit in the audience with you. You'll hear me going like, 'Oh, yeah. That's a good one.' Please join in with me. Sometimes people don't join in with me, and it makes me sound like an idiot. 'A comedian with MS. This is what I do. This is who I am.' I really like it. It's good ` the comedian part of it; The MS thing could go away and I'd be all right. (PLAYS LAID-BACK MUSIC) I was just about to turn 30. I was working as a dentist. It was a couple of weeks after my son was born, and suddenly I woke up one morning and my right leg and my right arm were numb, which is a pretty freaky thing to wake up for. So, yeah, we went down to the hospital and talked to the doctors about it, and, um, many stages later, it turned out I had MS. (EXCLAIMS) What is all over your face?! (BABBLES) It was, sort of, six weeks into being a dad. I was really worried that I wouldn't be able to throw my bouncing baby boy up in the air and catch him like... you know, like... like what dads do. You have paint all over you. Good job! Must've been fun. About a month or so later, I had my second attack. I went into hospital one morning, just saying like, 'My symptoms have changed a little bit.' And they were like, 'OK, cool. Stay in hospital for a week.' (CHUCKLES) Um, so I did, and they put me on all the drips and everything. Buddy! Elmo! We didn't get the final d` like, a clear diagnosis until we went and saw a neurologist. After you've had an MRI. Mm. And I'd never seen an MRI before that. And she scrolled through all the images, sort of, like` It's like layers of your brain. And I saw all these big, white masses on his brain. I was like... I thought, '(BLEEP), he's got, like, brain tumours.' And I went to this hugely worst-case scenario, and she said, 'No, this is clearly MS,' and I was like, 'Oh, phew!' (CHUCKLES) So we got to a stage where I was good. You know, everything was going quite nicely, and I never really thought too much about the future. I guess I was thinking, in 10 years, 20 years in the future, I'll probably still be on some hopefully good medication. I had sort of fallen into the, 'Oh, I got time. This'll be fine.' Um... Uh... But as I, you know, hear more things about` You see how` You hear how differently it affects everyone, um,... I guess that's, um... that sort of got me thinking a bit more about the future. Let's pop you down in bed here, buddy. (BABBLES) Like, you could get hit by a bus tomorrow. But it just makes that sort of like 'your life could change tomorrow' thing just that much more real, so it does change the way you prioritise stuff. You know, and then something goes a bit wrong again. Like, Sam's been in hospital` He's been quite sick over the last few months, um,... and that... brings back the level of stress. And... Does it not change the way you think about the world? Sam's so relaxed about this and just... He's like, 'No, I'm fine.' There is a lot of misinformation about MS, and what a lot of people don't realise is that there's four main types of MS ` from mild effects to quite severe, terminal, in some cases. For some people, they get one or two attacks in life and no more. They're the lucky ones. In my case, I don't ever have remission. I don't go into remission. I have episodes of flare-ups, and they're mild flare-ups. It takes a lot of time researching, reading and understanding. Because if you just leave it, one day it's gonna hit you, and you're suddenly gonna go, 'I'm not prepared.' What we've got to realise is everyone is different. So you're not gonna get two cases of MS the same. We don't know what our futures are going to be. We have to therefore become quite proactive rather than reactive. If you deal with it from the moment of diagnosis, chances are you can keep yourself quite well ` in most cases. But there will always be the case of the aggressive form that will just hit you anyway, regardless. My journey of MS was that I didn't get diagnosed for 11 years. So it means I ended up in my wheelchair; I started going on opiates, and I ended up with those heavy opiates, feeling very doped out and zombied for a number of years. At the moment, I'm working. I don't know what my future holds next year. I would love to have, you know, the ability to work at least another 10 years. I don't know. But I'm not gonna turn around and focus on that, when I have to get through each day right now. Multiple sclerosis, or MS, it's your immune system attacking the nerve cells. So if you think about an electrical cable, it's got a covering around it. Now, you cut that away, the wire is exposed, at risk of anything that gets in there to damage it. And that's exactly what happens with the brain` with the nerve cells, where the wiring` or the cover around the wiring gets destroyed. And that is how the immune system can attack. And so what happens is, because it happens in different parts of the brain, or even in the neck, it then causes damage in different areas. So someone might feel that tingling, heaviness; it feels like concrete around your fingers and hands. Others might feel it in their feet. Others will have spasms in other areas. It can be things like I would be walking, and the next minute, I'd drop, because all of a sudden the brain would disconnect and say, 'I don't know how to climb those stairs,' and I'd be on the ground. I've broken my teeth so many times; I fractured my coccyx a few times. And I used to tramp and I used to run, but then I started tripping over myself. So, yeah, it starts to affect people very differently. (EXPECTANT PIANO MUSIC) The worst-case scenario is I'm going to lose all body function and end up having to be fed ` tube-fed ` and I'll lose my voice and I lose the ability to function, in any sense of the term. That's the worst-case scenario. I may not get there. I might stay as I am now, if I can keep my health regime up and just deal with the arthritis and all the age-related stuff that comes, but we don't know. I'm a lot weaker than I used to be, but at the moment I'm still quite stable. The progression's very very slow for me, but I've seen it where it's been rapid and sudden, and that's quite scary for a lot of people ` that you suddenly overnight can't walk or use your hands. Come on in, Sam. Thank you! (CHUCKLES) We'll have a seat over here. Thank you very much. Nice to be here. Yeah! Good to meet you. Now, I hear that you've got a diagnosis of MS. Yes. Yes, I've had it for, um... Oh, when did I get`? Um, like, two years now... Yeah? ...I've had it going on. Hands. My feet were my big problem. Oh, right, yeah, yeah. It felt like rock-solid concrete blocks. Yeah, yeah. Tingling all the time, and pressure on my toes. It felt like someone was squeezing them all the time. But, you know, you work around it. I work full-time I'm a post-doc research fellow at AUT. OK. I was a lawyer for 10 years. I haven't let it slow me down. But that's me. I don't say everyone can do that; I just think you've got to find your potential and your place. Yeah. And just readjust your goal to suit what you need and how you need it. Yeah, yeah. Mm. The first thing they said to me ` the very first thing ` was, um, 'We're gonna try our best to make sure you're not in a wheelchair.' OK. And I was like, 'What do you mean? This is MS. I'm gonna be in a wheelchair.' And they said, 'Well, no. Things are changing. We've got new medicines; we've got new things. 'It may happen, but we'll do what we can to keep everything working.' I guess you're lucky because they got to you early. Yes. Yes. Whereas it took 11 years for them to diagnose me. Oh wow. You've got your diagnosis at a really good point. Yeah. And I will reassure you ` I actually have several friends with MS who are working full-time and not in wheelchairs, because they were diagnosed right at the very early point, and so they're able to maintain and stay very well. So, do you find that you get fatigued? Oh, all the time! Yeah, me too. Yeah, it's a big part of it. And I was lazy to start off as well, so that doesn't help. You've got to just manage it. don't fight the fatigue. Yeah. Learn to deal with it early; don't fight it. Don't fight it, OK? Because it exists. Instead of doing stand-up comedy now, I'll do some lie-down comedy. That's the one, yeah. So what do you do to relax? What do you do to...? Oh, I like to do my cartoon work. I love listening to music. My greatest love is that I used to do a bit of blues and jazz over in Aussie. Nice! And I miss it. # Amazing grace, how... BOTH: # ...sweet the sound # that saved # a wretch # like me. I love my music. It puts me in a good space. I can just forget about my pain, forget about my spasms, just for a little time. # ...was blind # but now I see. # (ROLLING PIANO MUSIC) I'm Robert Irving, co-founder and co-inventor of Rex Bionics. At Rex Bionics, we've developed a robotic exoskeleton which allows wheelchair users to stand and walk. It is the only hands-free device of its kind in the world. The genesis for Rex was my diagnosis with multiple sclerosis. I called my best friend, Richard, and we had a chat, and what came out of that was, 'Let's design a set of robot legs.' Originally, it was designed for me, in case I needed it. But once we discovered we could actually achieve this, we realised there was potential for an awful lot of other people around the world to benefit from it. It grew from just being a set of legs for me, to something that was out there for the whole world. The expectation is now that if somebody has a spinal cord injury or, you know, any mobility impairment, then an exoskeleton is an option for them, and we helped change that expectation. We don't own much of it any more. So the actual company, no. But the mission is personal. If you want to go into stand, Michelle, you can push that forwards. Yup. Brilliant. (REX WHIRRS) Lean forwards. That's it. All right, well, let's go for a little walk. We can warm everything up. (BEEP! REX WHIRRS) See if you can put that arm down by your side, Michelle. So that's it. That's its Michael Jackson move. Yeah, it's good. (CHUCKLES) We'll just take a couple more steps, and then we'll stop here and we'll do some exercises. OK. Getting people upright is absolutely essential. Our bladder and bowel are gravity organs. So if you, say, sat in a wheelchair, then even your bladder and bowel function isn't going to work properly. When we walk, we're actually getting to stretch the hips out. Because we're taking in a nice stride, we're getting stretches around the ankles, around the legs. And one of the main things that happens when you come upright is that you're actually waking up parts of the brain that don't really work that much when you spend your whole time sat. Mm. (REX WHIRRS) What the Rex is for is from a rehab point of view. So Michelle can` We can actually be doing core work and getting everything moving. Michelle has been locked into her wheelchair for optimal position. But what the means ` now she doesn't move from, what, 8 o'clock in the morning till 6 o'clock at night. Keep going. Keep going. Keep going. Good. And then slowly control it down. Well done. (REX WHIRRS) Good. (THUD!) Good. Find that core balance. That's it. (WHIRRING) Good. Nice and tall. And go. (THUD! THUD!) Good. Now. (THUD! THUD!) Yeah, that's it. Gotta wait for it to ground, OK? Too fast! How do you feel after`? I feel really good. I feel as if we worked out everything. A lot of rehabilitation is boring to the person doing it. To do this is a whole new avenue that's opened up. Mm. What age were you when you got MS? When you found out you had MS? Uh, 39. And I was 42 when I went into a wheelchair. OK. And just before that, I... stumbled, um, for about eight weeks. So I was down to crutches. Yeah. So about eight weeks, eight weeks, going along, and I had a massive stroke. (GASPS) And that was all MS. OK. That caused me to have a stroke. Mm. Who would think? Yeah. It is very common for MS people to fall to stroke. OK. Yeah. So that's a complication you don't want. Yeah. I'll try and avoid that. Yeah, yeah, if you can. Do you have any tips on how to avoid that? Well, no, if I knew, I wouldn't have done` I wouldn't be in this position today. CHUCKLES: OK! First bit of advice I'm going to give you is about fatigue. we know that pain, medication, not sleeping properly ` all that type of stuff is gonna make you feel tired. OK? That's just kind of natural. But the main one that you need to be aware of is central fatigue. Mm-hm. And what they've done is when they've studied brain activity ` and we're looking at resting brain activities ` so while we're sat here, not really using our brains too much ` is that your brain can be working at rest 30% to 50% more than mine. Oh! OK? OK. So when you think, 'Oh, I'm gonna sit down on the sofa and have a rest because I'm tired,' actually, your brain is, like, clicking over nearly double the speed that mine might be. Wow. So you are just burning more concentration the whole time. So that's why you will often feel that, 'Oh, I just feel a bit blah,' you know, tired. So what you have to do is that if you ignore it, it's not gonna go away. It's only actually gonna get worse. It'll just be there. So you do have to proactively manage it. So what you need to do is basically schedule in a 20-minute rest at least once, if not twice a day. And we're talking complete rest. OK. No mobile phone, no TV, no radio, no nothing, OK? So you've actually got to switch off your visual, your auditory systems, everything like that. All right, so the next thing that's probably really key for me is what you do exercise-wise. So, the treatment of MS has radically changed over the last few years, OK? It used to be, um, very negative, cos it used to be like, 'It's a degenerative neurological condition. I'm sorry, there isn't really any meds that help, 'and there isn't much that you can do. You're gonna be tired. Don't exercise too much, 'cos you will tire yourself out, etc, etc.' And then what we realised is that that's completely wrong, from an exercise perspective. And what we've got now is a question I like to put out to people ` are people actually progressed with their MS, or have they got weak and deconditioned cos they've done nothing? Because we know, the less you do physically, the weaker you're gonna get, the more unfit you're gonna get, the harder life is anyway to function. Yeah, true. OK? So what we now know is that when you work vigorously hard ` so I'm talking puffing, panting, sweating ` we are looking at 70% to 80% of predicted heart rate, max, so going for it ` that is when you release a hormone from your skeletal muscle called BDNF. It's brain-derived neurotrophic factor. Goes into the blood-brain barrier, crosses that, and it increases the synaptic activity, which promotes things like remyelination. Wow! So the more you can do to make yourself stronger, fitter, the better you'll be. Because that's what promotes the body into plasticity and remyelinating, remodelling stuff. I've been living with MS for, to my knowledge, 13 years. Who knows how long before that, but it didn't affect me. I have to admit that for the first two years, I ignored it, um, as if it didn't exist. Then I had a really bad relapse, and that scared me, and I took it seriously from there on in. There are currently a number of medications which slow down the disease for a percentage of people. They don't all work for everybody. They tend to come with not-so-nice side effects, but usually it's worth it. The disease also can go to a secondary, progressive mode, where there is no current treatment. It wasn't that long ago that Robert was in bed for a month. It was only by the sheer will of him and steroids that got him back on his feet. He couldn't drive or anything, so, yeah. (CHUCKLES) It's pretty dramatic. If something's gonna happen, you can't gauge what it's gonna be and how long it's gonna be. The worst part, for myself, personally, and I think for most people with MS, is the unknown. You do not know what's gonna happen next or when. It's not really an if, it's just what's gonna happen, how bad it's gonna be and how permanent it's gonna be. And no matter how you try, you cannot get that out of the back of your mind. I'm currently looking to get a medical treatment which will halt my MS progression. The treatment I'm seeking in Russia basically relies on chemotherapy to wipe out your faulty immune system. Your previously harvested stem cells are reintroduced to you to reboot the immune system, the theory is, with no memory of MS. 10 years after this process, people have had no more relapses. The longer you wait, the worse you're likely to be. And there are no guarantees of any recovery of lost function. Yeah. The 80% of people do recover some, but there is no guarantee what you will recover, if any. Um, it just stops it. So the sooner you do it, the better off you are. (PILLS RATTLE SOFTLY) Drugs do help. Like, they do tend to come with some not-too-pleasant side effects ` thyroid damage, eye damage, constant blood tests. The more effective the drug, the worse the side effects. And one a day for the rest of my life. That's over $70,000 a year. So for one year's worth of drugs, I can almost get the HSCT treatment ` the stem cell treatment. (UPBEAT MUSIC) This is my favourite toy ` a 1986 Audi GT coupe. Unfortunately I'm gonna have to say goodbye to it now. I have to sell it to try and raise some money towards my treatment in Russia. And though I've spent three years and more money than I care to count on this baby, um, in reality, it's not that hard a decision. Toy or health? Health has to come first. And so I've got to say goodbye to it. I'll never make my money back on it, but hopefully I'll raise enough to go part way towards getting to Russia. Treatment in Russia costs around` Well, not around. It costs US$50,000. They are one of the cheaper places in the world that do the treatment and have done probably more than anyone else ` because they're slightly cheaper. It's a big investment in money. Um, don't have that kind of money lying around spare. Have to try and pull it together. Um, selling this is part of that goal. I hear you're going to Russia. Are you getting the stem cells there? Yup. Plan to go to Russia ` Moscow. Um, the stem cell name is a little bit of a misnomer. Oh, OK. Um, it's a combination. They treat you with chemotherapy. Mm. Sorry. They harvest your stem cells first. 'Harvest' is a horrible word, eh. And then` It's only done from blood, so it's easy. Yeah, cool. It looks a bit weird, but it's OK. Yeah. Then hit you with high doses of chemo to wipe out your immune system and give you your own stem cells back to basically reboot your immune system, so it has no memory of MS. But it's a lot of money and a lot of effort. So I might have to go back to being a dentist to raise the money for that, eh? Would you ever think about a permanent fix with no side effects? Oh, yeah! Well, maybe. I'd have to learn more about it, of course. This is very helpful. I spent three years studying it before I decided. Yeah. It's such a big thing to do. And of course it is quite a big thing to deal with. Well, Rob, thank you so much, mate. This is, um` You've given me a lot to think about. This is` I've gotta start putting those pennies aside to head over to Russia for a holiday. Hey, you never know. They might, by that time, be finally here. That's right. Oh, hey, let's drink to that. That'd be good. Definitely. I hope they don't bring it to here, like, two weeks after you come back from there. That seems like a... If I've got it done, I don't care. Me! I'll make a big butterfly. OK. Let's make a big one. (ROLLING, FLOWING PIANO MUSIC) I was diagnosed with MS about three years ago. I lost the feeling of my legs. I went to my doctor, and he said, 'Oh, you've just overdone it, pinched a nerve or something.' And I took a week off, and it ended up turning into a six-week process. Finally got to the hospital and had an MRI, and that's when they confirmed that it was MS. (BABBLES SWEETLY) Yeah. And so when I was diagnosed, I was really upset, because my husband's in a wheelchair. He had a spinal cord injury, um, probably about 15 years ago, and I always sort of thought I was the` my role is the caregiver, in that I was gonna look after us, you know, and now it's sort of that unknown. At the moment I'm OK. But I could later on end up in a wheelchair. So the two of us will be rocking around in our wheelchairs. I've kind of gone and thought, 'Well, life's too short. 'I'm just gonna do whatever I feel like doing.' I didn't wanna be that, 'Oh, there's that mum with MS. Oh.' You know? I was really careful about who I talked to about it as well, cos I didn't wanna be that, 'Oh no. She's gonna come and talk to us about it,' you know? And I didn't wanna be all 'me, me' and 'Oh, poor me.' Yes, I've just` I try to live every day and, you know, make the most of things. I do wonder what I'll be like when I'm older and just how it's gonna affect our family life. I've got MS, but I don't know whether it's gonna go to the next level, and that, I think, is what's hard. It's that not knowing. Unfortunately, haven't been able to pull together all the funds to get to Russia, so I've had to postpone that for now. Um, I still very much want to go. Um, it's just gonna take a little bit longer. It's very disappointing that we didn't manage to make it on this trip. I'm now back in the queue to get another appointment. Um, we'll continue saving as much money as I can to get to that appointment, whenever it might be in the future. Um, my age is starting to count against me. I'm getting very close to the cut-off age for them being happy to do it, presumably because the chemo is so hard on the body. So the sooner, the better... is basically the way ` before I have another relapse... would be a good thing. (GENTLE, ROLLING PIANO MUSIC) Hi! Nice to meet you. You too. How are ya? Good. Come in. Thank you very much. (BOTH CONVERSE INDISTINCTLY) Dig in, guys. Nice. Thank you. Oh, this is great. There we go. That looks like Hawaiian. Oh yum! Pineapple. What do you mean 'ew'? Yum. It looks delicious. That's for you. Thank you. I'm gonna dig in guys, I'm sorry. Um, so, Becks, I notice I'm eating a big, greasy pizza, and you're eating a beautiful chicken salad there. Am I doing this right? Well, they do suggest that you eat, um, healthy. Have you changed your diet since you've been diagnosed with MS? Well, yes, I have. We went` We tried to go vegan for a little bit. Lots of salads. I know that it's actually not the greatest. It's good to have lots of protein in your diet as well. So we stopped that, also because vegan diet is disgusting. Oh boy, it's hard to stay away from this stuff and... Yeah. And so what are you doing now for your diet if you're back to not being a`? Trying to do lots of salads. I admit, I am not very good at staying away from the carbs and the sugar, but that's what I have to work on. Yeah. That's my thing. (ROARS, LAUGHS) (CHILDREN LAUGH) 'Hello.' Don't read th` Oh, right. Sorry. Um, are you on meds for it? Yeah. What are you taking? Tysabri. Oh, good. If I'm pronouncing it right. Yes, yeah. It's a big, long name. Natalizumab. Oh wow. You did well. (LAUGHS) I took ages to get that. Yeah, yeah. Are you on that too? I was. I just, um... Cos it brings your immune system down so much, I got a virus. So they then took me off it and I'm now on Tecfidera. Oh. Which is another long name. So it's a tablet? Yeah, a tablet. Which is nice cos I don't have to go into the hospital every month. Oh, that's good. But I quite like going into the hospital every month. It was great! Yeah, I must say I do like my two-hour break, you know? And nobody's allowed to annoy me. (LAUGHS) And so how did it change your life? Just making sure I take time for my self-care and, you know, things like that. If I feel like I'm not well, just don't keep going like I probably would've if I didn't have MS. I'd probably just, you know, have another coffee. I don't drink coffee now, but, you know, you'd take something just to get you through the day. Whereas now, I have to really go, 'OK, no, I am tired. Take a break.' Otherwise, you know, everybody pays for it. (LAUGHS) Yeah, yeah! Stress! That's correct. Yeah. I do notice when I yell at the kids, my leg plays up. Oh. Yeah. It's that stress, I think. They say there's stress in that. Cos I feel like I'm a bit of a ticking time bomb ` cos it's all that unknown. You don't know what's gonna happen, and I think` I just try to focus on what's gonna happen tomorrow. Cos that's one big thing ` you don't wanna be worrying and stressing over` Exactly right. Yeah. ...stuff that might not happen. (POIGNANT MUSIC) So this is me, I guess. I have MS. It's not great. But what meeting all these people over the last little while has shown me is that it's also not the end of your life. MS is a big, life-changing, crappy thing, but that` I think Sam just has the right attitude, that he will always make the best of it. For as long we can possibly make it, it won't affect how we enjoy life. You know, it's really just shown me that even though you have MS, you can still be a great, positive person. That's what everyone I've met has shown me. Um, so that's my plan! Keep going strong, few slight, little changes, keep being the positive person I've always been. Right? Yes. Right. Great. Captions by Glenna Casalme www.able.co.nz Captions were made with the support of NZ On Air. Copyright Able 2017