1 00:00:15,020 --> 00:00:16,500 Hello. 2 00:00:16,500 --> 00:00:16,740 If you watched TV in the 1980s, you'll likely remember Hello. 3 00:00:16,740 --> 00:00:20,020 If you watched TV in the 1980s, you'll likely remember 4 00:00:20,020 --> 00:00:23,460 the effervescent Fiona MacDonald, the presenter of the game show 5 00:00:23,460 --> 00:00:23,740 the effervescent Fiona MacDonald, the presenter of the game show It's A Knockout and the kids' program Wombat. 6 00:00:23,740 --> 00:00:26,660 It's A Knockout and the kids' program Wombat. 7 00:00:26,660 --> 00:00:30,740 We first told you Fiona's story about a year ago, 8 00:00:30,740 --> 00:00:33,780 as she was fighting motor neurone disease and doing her best 9 00:00:33,780 --> 00:00:34,020 as she was fighting motor neurone to give it the middle finger. 10 00:00:34,020 --> 00:00:36,260 to give it the middle finger. 11 00:00:36,260 --> 00:00:38,940 Sadly, Fiona died earlier this month, 12 00:00:38,940 --> 00:00:41,260 three years after her diagnosis, 13 00:00:41,260 --> 00:00:42,500 and with her family's permission, 14 00:00:42,500 --> 00:00:45,500 we're bringing you her courageous story again. 15 00:00:49,820 --> 00:00:52,860 WOMAN: When Fiona was saying, "Let's do a road trip around Australia," 16 00:00:52,860 --> 00:00:55,940 I think everybody said, "What? Thelma and Louise?" 17 00:00:56,980 --> 00:01:00,140 I thought, "Oh," in my head, "Oh, no, far out." 18 00:01:00,140 --> 00:01:03,220 But of course I said, "Yes, great, let's do that." 19 00:01:03,220 --> 00:01:06,380 And we've got a couple of major issues with this map. 20 00:01:06,380 --> 00:01:08,660 We probably should have bought the more expensive one. 21 00:01:08,660 --> 00:01:10,300 JACKI MacDONALD: I said, "No, no, no, no, no. 22 00:01:10,300 --> 00:01:10,540 JACKI MacDONALD: "You can't do it. It's too far. 23 00:01:10,540 --> 00:01:11,900 "You can't do it. It's too far. 24 00:01:11,900 --> 00:01:14,380 "You're going in a tiny, little car 25 00:01:14,380 --> 00:01:18,140 "and you're going to put a wheelchair and a walker..." 26 00:01:18,140 --> 00:01:20,540 I said, "I expect you to get to Adelaide and turn around." 27 00:01:21,980 --> 00:01:23,820 MAN: Fiona is irrepressible. 28 00:01:23,820 --> 00:01:26,260 She never takes a backward step. 29 00:01:26,260 --> 00:01:27,540 Well, my little buttercup, what? 30 00:01:27,540 --> 00:01:29,580 Oh. I've got something really interesting for you. 31 00:01:29,580 --> 00:01:30,660 Have you? Yeah. 32 00:01:30,660 --> 00:01:32,220 What is it called? Your hat's about to fall off. 33 00:01:32,220 --> 00:01:32,460 What is it called? (LAUGHS) A prediction. 34 00:01:32,460 --> 00:01:33,420 (LAUGHS) A prediction. 35 00:01:33,420 --> 00:01:33,660 No, do you know what the most common (LAUGHS) A prediction. 36 00:01:33,660 --> 00:01:36,420 No, do you know what the most common name in the whole world is? 37 00:01:36,420 --> 00:01:39,700 Fiona was just... She was a natural at television. 38 00:01:39,700 --> 00:01:42,900 All of her life, people have been drawn to her 39 00:01:42,900 --> 00:01:46,380 because of her enthusiasm and her joie de vivre. 40 00:01:46,380 --> 00:01:49,100 ANNOUNCER: Billy J. Smith and Fiona MacDonald! 41 00:01:49,100 --> 00:01:49,340 ANNOUNCER: Billy J. Smith (CHEERING, APPLAUSE) 42 00:01:49,340 --> 00:01:51,740 (CHEERING, APPLAUSE) 43 00:01:51,740 --> 00:01:53,820 And just to make sure you know who you're cheering for, 44 00:01:53,820 --> 00:01:54,060 And just to make sure you know here are the team colours. 45 00:01:54,060 --> 00:01:55,100 here are the team colours. 46 00:01:58,540 --> 00:02:01,940 MAN: Fiona is driving around, I think, with two goals in mind. 47 00:02:01,940 --> 00:02:05,500 Number one, irrepressibly, to have fun. 48 00:02:07,740 --> 00:02:11,700 And secondly, to raise money for motor neurone disease. 49 00:02:13,740 --> 00:02:15,700 WOMAN: I think Fiona, once she decided 50 00:02:15,700 --> 00:02:18,260 that she was going to be a warrior for MND, 51 00:02:18,260 --> 00:02:21,420 she decided, "I'm going to use my profile. 52 00:02:21,420 --> 00:02:21,660 she decided, "I'm going "I do have a history. 53 00:02:21,660 --> 00:02:22,860 "I do have a history. 54 00:02:22,860 --> 00:02:24,100 "I've got... I've done things, 55 00:02:24,100 --> 00:02:26,220 "so why don't I make those things count?" 56 00:02:35,780 --> 00:02:38,500 Sitting on the couch, doing nothing. 57 00:02:41,940 --> 00:02:43,380 Waiting for it to get worse. 58 00:02:43,380 --> 00:02:43,620 Waiting for it to get worse. You know, just thought, "Let's just do something about it." 59 00:02:43,620 --> 00:02:47,300 You know, just thought, "Let's just do something about it." 60 00:02:48,940 --> 00:02:52,180 Others who have got motor neurone. Yeah. 61 00:02:52,180 --> 00:02:54,900 WOMAN: And did anyone try and talk you out of it? 62 00:02:54,900 --> 00:02:55,140 WOMAN: And did anyone try (BOTH LAUGH) 63 00:02:55,140 --> 00:02:56,660 (BOTH LAUGH) 64 00:03:09,860 --> 00:03:11,420 MAN: Hey. 65 00:03:11,420 --> 00:03:12,700 Welcome. 66 00:03:13,900 --> 00:03:14,980 Good to see you. 67 00:03:15,980 --> 00:03:20,740 Fiona was diagnosed with motor neurone disease in November 2021. 68 00:03:20,740 --> 00:03:20,980 Fiona was diagnosed with motor Come on in. 69 00:03:20,980 --> 00:03:21,780 Come on in. 70 00:03:21,780 --> 00:03:22,020 MND is a neurodegenerative disease that damages the special cells Come on in. 71 00:03:22,020 --> 00:03:25,740 MND is a neurodegenerative disease that damages the special cells 72 00:03:25,740 --> 00:03:30,300 that enable us to move, breathe and swallow. 73 00:03:30,300 --> 00:03:30,580 that enable us to move, breathe and swallow. It kills you, on average, 27 months after diagnosis. 74 00:03:30,580 --> 00:03:35,220 It kills you, on average, 27 months after diagnosis. 75 00:03:35,220 --> 00:03:40,420 Most people do lose weight because it becomes harder to eat. 76 00:03:40,420 --> 00:03:45,060 We must unpick why people get the disease 77 00:03:45,060 --> 00:03:49,060 and what in the environment has caused it. 78 00:03:49,060 --> 00:03:52,340 It's one of the very important things that we watch. 79 00:03:52,340 --> 00:03:52,580 It's one of the very important Eating Fat Bastard food... 80 00:03:52,580 --> 00:03:54,060 Eating Fat Bastard food... 81 00:03:54,060 --> 00:03:56,100 (LAUGHS) 82 00:03:56,100 --> 00:03:57,700 ..and keeping your weight off. 83 00:03:57,700 --> 00:03:59,980 MAN: As a fellow scientist, Dom is gold for me 84 00:03:59,980 --> 00:04:00,220 MAN: As a fellow scientist, because he's a neurologist, 85 00:04:00,220 --> 00:04:01,460 because he's a neurologist, 86 00:04:01,460 --> 00:04:04,260 where he's got a great investment in the science. 87 00:04:05,220 --> 00:04:06,820 He's very passionate, 88 00:04:06,820 --> 00:04:08,580 he loves research, 89 00:04:08,580 --> 00:04:10,980 and he's really driving this, 90 00:04:10,980 --> 00:04:11,180 and he's really driving this, "Let's find the cause of MND." 91 00:04:11,180 --> 00:04:13,420 "Let's find the cause of MND." 92 00:04:13,420 --> 00:04:16,900 If you want, I can put some Botox into the muscles here. 93 00:04:18,180 --> 00:04:20,380 (MURMURS, LAUGHS) 94 00:04:20,380 --> 00:04:22,620 KYLIE: Around here as well. 95 00:04:22,620 --> 00:04:22,860 I won't tell anyone KYLIE: Around here as well. 96 00:04:22,860 --> 00:04:24,700 I won't tell anyone if you don't tell anyone. 97 00:04:24,700 --> 00:04:27,460 Following the initial shock of the diagnosis, 98 00:04:27,460 --> 00:04:32,020 Fiona put her armour back on, pulled herself together, 99 00:04:32,020 --> 00:04:35,140 and with a bit of a... 100 00:04:36,660 --> 00:04:38,900 ..hmm, "fuck you" approach... 101 00:04:40,020 --> 00:04:42,940 ..said, "This is what I'm going to do." 102 00:04:46,020 --> 00:04:49,060 MAN: Mum and Kylie started their 15,000-kilometre road trip 103 00:04:49,060 --> 00:04:49,300 on the 6th of July from Sydney. 15,000-kilometre road trip 104 00:04:49,300 --> 00:04:51,620 on the 6th of July from Sydney. 105 00:04:55,660 --> 00:05:00,380 Mum set up a GoFund raise page as well as an Instagram account 106 00:05:00,380 --> 00:05:00,620 Mum set up a GoFund raise page to ask for support. 107 00:05:00,620 --> 00:05:01,780 to ask for support. 108 00:05:06,300 --> 00:05:07,340 It was pretty amazing. 109 00:05:07,340 --> 00:05:10,420 Hundreds of donations just flowed in as they travelled. 110 00:05:12,780 --> 00:05:16,220 To drive around Australia, it's extraordinary. 111 00:05:16,220 --> 00:05:16,460 Let alone battling a disease it's extraordinary. 112 00:05:16,460 --> 00:05:19,420 Let alone battling a disease 113 00:05:19,420 --> 00:05:19,660 Let alone battling a disease that's robbed you of your ability to...to speak, 114 00:05:19,660 --> 00:05:22,500 that's robbed you of your ability to...to speak, 115 00:05:22,500 --> 00:05:27,540 impacts your ability to drink, to eat, to walk. 116 00:05:27,540 --> 00:05:27,780 impacts your ability to drink, We made it. (LAUGHS) 117 00:05:27,780 --> 00:05:30,220 We made it. (LAUGHS) 118 00:05:30,220 --> 00:05:32,780 To do that is a marathon, 119 00:05:32,780 --> 00:05:34,540 gargantuan effort. 120 00:05:34,540 --> 00:05:37,660 Ready? Hooray! 121 00:05:37,660 --> 00:05:38,900 Go. Hooray. 122 00:05:38,900 --> 00:05:41,580 Oh. (LAUGHS) 123 00:05:43,220 --> 00:05:45,820 I think that the positive 124 00:05:45,820 --> 00:05:46,060 I think that the positive "gotta keep going, gotta keep going" 125 00:05:46,060 --> 00:05:48,020 "gotta keep going, gotta keep going" 126 00:05:48,020 --> 00:05:50,220 has definitely been instilled in Fiona from our parents. 127 00:05:54,420 --> 00:05:57,620 Our family grew up in Blackwall, which is central Queensland. 128 00:05:58,540 --> 00:06:01,740 Dad was a grazier and had cattle and dams and sheep. 129 00:06:02,740 --> 00:06:04,620 It was a massive property. 130 00:06:05,820 --> 00:06:09,140 Mum and Dad, salty, crusty, beautiful people. 131 00:06:10,500 --> 00:06:14,300 The glue of the family was the fun, the laughing and the jokes, 132 00:06:14,300 --> 00:06:19,100 and, you know, scrambling over the bad bits with a sense of humour. 133 00:06:20,940 --> 00:06:24,340 Our house burnt down a couple of times in the bush 134 00:06:24,340 --> 00:06:24,620 Our house burnt down a couple of times in the bush and they'd never make a big fuss about it. 135 00:06:24,620 --> 00:06:26,780 and they'd never make a big fuss about it. 136 00:06:26,780 --> 00:06:28,580 I'm sure they were devastated. 137 00:06:28,580 --> 00:06:32,180 But instead of giving it to us to have the burden of, 138 00:06:32,180 --> 00:06:32,420 But instead of giving it to us they'd say, "Don't worry. 139 00:06:32,420 --> 00:06:33,660 they'd say, "Don't worry. 140 00:06:33,660 --> 00:06:35,660 "We'll all go into town and buy new clothes." 141 00:06:37,660 --> 00:06:41,540 I do think that positive attitude has rubbed off on Fiona. 142 00:06:41,540 --> 00:06:41,780 I do think that positive attitude WOMAN: What's that one? 143 00:06:41,780 --> 00:06:42,540 WOMAN: What's that one? 144 00:06:42,540 --> 00:06:44,060 I think it was Wombat's... 145 00:06:44,060 --> 00:06:47,060 ..Wombat's fifth birthday or something like that. 146 00:06:47,060 --> 00:06:49,980 In the 1980s, our television screens were lit up 147 00:06:49,980 --> 00:06:50,220 In the 1980s, our television by the two MacDonald girls. 148 00:06:50,220 --> 00:06:51,540 by the two MacDonald girls. 149 00:06:51,540 --> 00:06:51,780 Jacki was on Channel Nine with Hey Hey It's Saturday. by the two MacDonald girls. 150 00:06:51,780 --> 00:06:56,660 Jacki was on Channel Nine with Hey Hey It's Saturday. 151 00:06:56,660 --> 00:06:56,900 Jacki was on Channel Nine with Hey Hey It's Saturday. BOTH: # I got you, babe... # 152 00:06:56,900 --> 00:06:58,660 BOTH: # I got you, babe... # 153 00:06:58,660 --> 00:07:00,460 This show is deep. 154 00:07:00,460 --> 00:07:00,700 One day, the producer came down This show is deep. 155 00:07:00,700 --> 00:07:03,940 One day, the producer came down and he said, 156 00:07:03,940 --> 00:07:04,180 One day, the producer came down "We wish we had someone like you. 157 00:07:04,180 --> 00:07:05,180 "We wish we had someone like you. 158 00:07:05,180 --> 00:07:08,060 "Who is as silly as you? Who are we going to find?" 159 00:07:08,060 --> 00:07:11,740 And I said, "I know the perfect person. My sister." 160 00:07:11,740 --> 00:07:14,820 You did something called The Fun Factory. 161 00:07:14,820 --> 00:07:17,020 You did that for a few years, didn't you, 162 00:07:17,020 --> 00:07:17,260 You did that for a few years, before you went to Wombat? 163 00:07:17,260 --> 00:07:18,700 before you went to Wombat? 164 00:07:18,700 --> 00:07:19,860 # Wombat! # 165 00:07:19,860 --> 00:07:23,260 See this effect here of these beads coming down? 166 00:07:23,260 --> 00:07:25,500 Really superb, don't you think so? Just hang on to those for a sec. 167 00:07:25,500 --> 00:07:28,900 And if you need, I think a touch of brightness in the handbag. Just... 168 00:07:28,900 --> 00:07:33,460 Fiona, when she joined Channel Seven, she was doing Wombat, 169 00:07:33,460 --> 00:07:37,020 and she was one of the major reporters. 170 00:07:38,340 --> 00:07:41,420 Children's television was quite new in those days. 171 00:07:41,420 --> 00:07:42,820 By the way, in case you were wondering, 172 00:07:42,820 --> 00:07:46,820 this story has been brought to you by me dressed as a Ming Empress. 173 00:07:46,820 --> 00:07:49,140 Fiona was a very successful presenter 174 00:07:49,140 --> 00:07:51,380 because she actually cared about what she was doing. 175 00:07:51,380 --> 00:07:56,500 But she also had a zest for everything and an enthusiasm. 176 00:07:56,500 --> 00:07:56,740 But she also had a zest Children's television was important. 177 00:07:56,740 --> 00:07:58,700 Children's television was important. 178 00:07:58,700 --> 00:08:02,340 Make 'em curious. Yes. 179 00:08:02,340 --> 00:08:04,820 It was a wonderful time for me. 180 00:08:04,820 --> 00:08:09,540 The last program she worked on was a colourful game sort of show 181 00:08:09,540 --> 00:08:09,780 The last program she worked on was called It's A Knockout. 182 00:08:09,780 --> 00:08:11,020 called It's A Knockout. 183 00:08:11,020 --> 00:08:13,500 That was in the '80s with Billy J. Smith. 184 00:08:13,500 --> 00:08:15,940 That was absolutely brilliant! 185 00:08:15,940 --> 00:08:16,180 Top fun, hey? That was absolutely brilliant! 186 00:08:16,180 --> 00:08:18,180 Top fun, hey? Don't call us Builders for nothing. 187 00:08:18,180 --> 00:08:18,420 Top fun, hey? (LAUGHS) 188 00:08:18,420 --> 00:08:19,620 (LAUGHS) 189 00:08:19,620 --> 00:08:20,860 You guys deserve a medal. 190 00:08:20,860 --> 00:08:23,060 But I suppose you'd rather have the four points. 191 00:08:23,060 --> 00:08:24,820 That's for sure, Fiona. OK. 192 00:08:24,820 --> 00:08:28,100 Fiona left television after It's A Knockout 193 00:08:28,100 --> 00:08:32,460 and slotted almost seamlessly into the wine industry, 194 00:08:32,460 --> 00:08:32,700 and slotted almost seamlessly where she was... 195 00:08:32,700 --> 00:08:33,620 where she was... 196 00:08:33,620 --> 00:08:38,140 She wrote beautiful brochures and wine descriptions 197 00:08:38,140 --> 00:08:39,900 and became an absolute expert. 198 00:08:44,460 --> 00:08:46,220 Fiona was married in the '90s 199 00:08:46,220 --> 00:08:48,780 and had two beautiful boys, Harry and Rafe. 200 00:08:50,220 --> 00:08:53,100 But she's been single ever since they were little. 201 00:08:56,220 --> 00:08:58,740 HARRY: Mum has always embraced life with gusto. 202 00:08:58,740 --> 00:08:58,980 HARRY: Mum has always embraced life She's a massive extrovert. 203 00:08:58,980 --> 00:09:00,460 She's a massive extrovert. 204 00:09:02,980 --> 00:09:06,540 Then back in early 2021, out of the blue, 205 00:09:06,540 --> 00:09:09,060 she started to have a couple of weird symptoms. 206 00:09:10,500 --> 00:09:15,380 She'd ring me in the afternoon and I did notice a slight sort of, 207 00:09:15,380 --> 00:09:18,660 you know how you are when you've had a couple of drinks? 208 00:09:18,660 --> 00:09:18,900 you know how you are when And then one day she asked me, 209 00:09:18,900 --> 00:09:20,860 And then one day she asked me, 210 00:09:20,860 --> 00:09:21,100 "Do you notice that I'm slurring at all when I talk to you?" And then one day she asked me, 211 00:09:21,100 --> 00:09:23,380 "Do you notice that I'm slurring at all when I talk to you?" 212 00:09:23,380 --> 00:09:26,420 And I said, "Not really. Only when you've been out to lunch." 213 00:09:26,420 --> 00:09:26,700 And I said, "Not really. Only when you've been out to lunch." And she said, "I haven't been out to lunch." 214 00:09:26,700 --> 00:09:28,340 And she said, "I haven't been out to lunch." 215 00:09:29,740 --> 00:09:31,940 That was the very first sign. 216 00:09:34,300 --> 00:09:37,820 And then she had a fall, bit of tripping, 217 00:09:37,820 --> 00:09:41,420 which was when we were saying, "Just go and find out what happens." 218 00:09:41,420 --> 00:09:41,660 which was when we were saying, "Just go and find out what happens." And once you go down that road, 219 00:09:41,660 --> 00:09:43,460 And once you go down that road, 220 00:09:43,460 --> 00:09:47,180 it's many, many tests until you get a diagnosis. 221 00:09:49,180 --> 00:09:50,740 COMPUTERISED VOICE: I was blown away. 222 00:09:50,740 --> 00:09:50,940 There's no family history of MND. COMPUTERISED VOICE: I was blown away. 223 00:09:50,940 --> 00:09:53,300 There's no family history of MND. 224 00:09:53,300 --> 00:09:54,540 It was a big shock. 225 00:09:56,500 --> 00:09:57,940 Initially I withdrew. 226 00:09:57,940 --> 00:09:58,180 I wouldn't talk with anyone Initially I withdrew. 227 00:09:58,180 --> 00:10:02,500 I wouldn't talk with anyone about having this terminal disease. 228 00:10:02,500 --> 00:10:02,740 I wouldn't talk with anyone My world came crashing down. 229 00:10:02,740 --> 00:10:04,540 My world came crashing down. 230 00:10:06,580 --> 00:10:10,300 When talking about the diagnosis of motor neurone disease... 231 00:10:11,740 --> 00:10:17,700 ..in my experience, the most critical element is to be honest... 232 00:10:19,060 --> 00:10:20,740 ..and compassionate, 233 00:10:20,740 --> 00:10:23,140 and sometimes profane. 234 00:10:24,460 --> 00:10:28,060 Because...it is a fucked disease. 235 00:10:29,500 --> 00:10:30,860 You know? 236 00:10:30,860 --> 00:10:33,380 So if it's fucked, call it fucked. 237 00:10:33,380 --> 00:10:33,620 If it's a shit sandwich, So if it's fucked, call it fucked. 238 00:10:33,620 --> 00:10:37,060 If it's a shit sandwich, call it a shit sandwich. 239 00:10:37,060 --> 00:10:37,300 If it's a shit sandwich, Don't pretty it up. 240 00:10:37,300 --> 00:10:39,140 Don't pretty it up. 241 00:10:39,140 --> 00:10:42,140 Don't put hundreds and thousands on it. 242 00:10:42,140 --> 00:10:44,660 And don't pretend it's something else. 243 00:10:46,620 --> 00:10:48,660 COMPUTERISED VOICE: Before I lost the ability to speak, 244 00:10:48,660 --> 00:10:52,340 I recorded my voice, which is now computer generated. 245 00:10:52,340 --> 00:10:54,220 WOMAN: (OVER PA) Qantas Airlines would like to welcome 246 00:10:54,220 --> 00:10:54,500 all guests travelling through to Port Hedland WOMAN: (OVER PA) Qantas Airlines would like to welcome 247 00:10:54,500 --> 00:10:57,340 all guests travelling through to Port Hedland 248 00:10:57,340 --> 00:10:59,380 on Flight 213 to board now through Gate... 249 00:10:59,380 --> 00:10:59,660 on Flight 213 to board now through Gate... COMPUTERISED VOICE: It took some hard work to accept my new reality 250 00:10:59,660 --> 00:11:02,420 COMPUTERISED VOICE: It took some hard work to accept my new reality 251 00:11:02,420 --> 00:11:02,660 COMPUTERISED VOICE: It took some and get on with living my life. 252 00:11:02,660 --> 00:11:04,660 and get on with living my life. 253 00:11:04,660 --> 00:11:06,700 But I still needed some purpose. 254 00:11:07,940 --> 00:11:09,860 I wanted to give back. 255 00:11:09,860 --> 00:11:12,900 That's when I thought of driving around Australia to raise money 256 00:11:12,900 --> 00:11:13,140 That's when I thought of driving for research into MND. 257 00:11:13,140 --> 00:11:14,780 for research into MND. 258 00:11:16,460 --> 00:11:18,940 You'll be alright. It's exciting. 259 00:11:18,940 --> 00:11:19,180 You'll be alright. One of the highlights of the trip 260 00:11:19,180 --> 00:11:20,700 One of the highlights of the trip 261 00:11:20,700 --> 00:11:23,180 was when Harry flew into Broome to join us. 262 00:11:23,180 --> 00:11:24,460 (WOMEN LAUGH) 263 00:11:24,460 --> 00:11:25,700 How are you? 264 00:11:25,700 --> 00:11:28,500 (LAUGHTER) 265 00:11:31,100 --> 00:11:32,140 How are you? 266 00:11:35,980 --> 00:11:38,340 How are you? She can't talk. 267 00:11:38,340 --> 00:11:38,580 How are you? She's too emotional. 268 00:11:38,580 --> 00:11:39,820 She's too emotional. 269 00:11:42,220 --> 00:11:47,220 It is frustrating to see, and frustrating to... 270 00:11:47,220 --> 00:11:52,300 It's why, why her, or why is this happening to us, to her? 271 00:11:52,300 --> 00:11:52,580 It's why, why her, or why is this happening to us, to her? But I think, like I've learned from her 272 00:11:52,580 --> 00:11:56,660 But I think, like I've learned from her 273 00:11:56,660 --> 00:11:58,820 you deal with the hand that you're dealt. 274 00:11:58,820 --> 00:11:59,060 you deal with the hand It's that MND getting 'em emotional. 275 00:11:59,060 --> 00:12:02,380 It's that MND getting 'em emotional. 276 00:12:05,620 --> 00:12:07,540 I've missed you guys. 277 00:12:07,540 --> 00:12:11,340 Being sad about it around Mum doesn't help her enjoy her life 278 00:12:11,340 --> 00:12:11,580 Being sad about it around Mum and enjoy what she wants to do. 279 00:12:11,580 --> 00:12:13,020 and enjoy what she wants to do. 280 00:12:13,020 --> 00:12:15,540 And that's not how she would want me to be. 281 00:12:15,540 --> 00:12:16,420 You need to be careful, 282 00:12:16,420 --> 00:12:18,660 she's worked out how to drive this at high speed, so... 283 00:12:18,660 --> 00:12:21,180 (SHRILL BEEP) Watch out. What does that mean? 284 00:12:21,180 --> 00:12:22,660 Was that a beep? Yeah. 285 00:12:22,660 --> 00:12:22,900 Was that a beep? (ALL LAUGH) 286 00:12:22,900 --> 00:12:24,180 (ALL LAUGH) 287 00:12:29,460 --> 00:12:31,700 When we were at Cable Beach in Broome, 288 00:12:31,700 --> 00:12:35,260 it just felt kind of like nothing really else mattered. 289 00:12:35,260 --> 00:12:35,500 it just felt kind of like That'll be alright now. 290 00:12:35,500 --> 00:12:37,060 That'll be alright now. 291 00:12:37,060 --> 00:12:40,020 You could just see that it meant so much to her. 292 00:12:42,300 --> 00:12:45,260 Fiona's always loved the ocean. She loves to swim. 293 00:12:45,260 --> 00:12:48,180 She loves to, you know, just get in the water. 294 00:12:48,180 --> 00:12:48,420 She loves to, you know, (ALL LAUGH) 295 00:12:48,420 --> 00:12:50,780 (ALL LAUGH) 296 00:12:50,780 --> 00:12:52,580 Now the ocean is dangerous. 297 00:12:52,580 --> 00:12:52,820 Because her mouth Now the ocean is dangerous. 298 00:12:52,820 --> 00:12:56,140 Because her mouth won't close properly, 299 00:12:56,140 --> 00:12:58,060 so when she gets in the water, if a wave comes 300 00:12:58,060 --> 00:12:58,300 so when she gets in the water, and splashes down her throat... 301 00:12:58,300 --> 00:13:00,900 and splashes down her throat... 302 00:13:00,900 --> 00:13:02,580 Oh. 303 00:13:02,580 --> 00:13:02,820 I reckon just go down to your knees Oh. 304 00:13:02,820 --> 00:13:06,780 I reckon just go down to your knees and then just fall into the wave. 305 00:13:06,780 --> 00:13:07,020 I reckon just go down to your knees Really? OK. 306 00:13:07,020 --> 00:13:08,940 Really? OK. 307 00:13:08,940 --> 00:13:10,620 Get down on your knee, Harry. You suggested this. 308 00:13:10,620 --> 00:13:13,180 Alright. And then just fall into the wave. 309 00:13:15,340 --> 00:13:17,260 Yay! Yeah! 310 00:13:19,700 --> 00:13:22,140 (ALL LAUGH) It's so shallow. 311 00:13:22,140 --> 00:13:25,060 Although Mum can't go in the water unassisted, she loves it. 312 00:13:26,500 --> 00:13:29,460 I'm hoping she can still enjoy it for a while yet. 313 00:13:30,420 --> 00:13:32,860 Go hard. On a turn. Yeah, hard left. Hard left. 314 00:13:33,820 --> 00:13:35,460 Yeah. Now back it in. 315 00:13:35,460 --> 00:13:37,380 Yeah, nice. 316 00:13:37,380 --> 00:13:38,740 Nice. Right up to the kerb now. 317 00:13:38,740 --> 00:13:39,780 Keep going. Yep. 318 00:13:39,780 --> 00:13:40,060 Keep going. Keep going. Yep, yep, yep, yep, yep. Yep. 319 00:13:40,060 --> 00:13:42,380 Keep going. Yep, yep, yep, yep, yep. 320 00:13:42,380 --> 00:13:43,860 Alright, beautiful. 321 00:13:43,860 --> 00:13:44,060 Alright, beautiful. One, two, three! 322 00:13:44,060 --> 00:13:45,460 One, two, three! 323 00:13:46,820 --> 00:13:50,220 It's pretty terrible that she's lost the ability to speak 324 00:13:50,220 --> 00:13:52,100 because that's just... that's her tool. 325 00:13:52,100 --> 00:13:52,340 because that's just... Beautiful. 326 00:13:52,340 --> 00:13:53,100 Beautiful. 327 00:13:53,100 --> 00:13:54,740 Is that the last one of the ones I took? 328 00:13:54,740 --> 00:13:54,980 Is that the last one Yeah. 329 00:13:54,980 --> 00:13:56,060 Yeah. 330 00:13:56,060 --> 00:13:56,300 She loved, yeah, being Yeah. 331 00:13:56,300 --> 00:13:58,260 She loved, yeah, being the life of the party, 332 00:13:58,260 --> 00:14:03,420 sort of being able to have that voice and command a room. 333 00:14:03,420 --> 00:14:03,660 sort of being able to have That's amazing. 334 00:14:03,660 --> 00:14:05,340 That's amazing. 335 00:14:05,340 --> 00:14:08,460 COMPUTERISED VOICE: I'm struggling to come to terms with my loss of speech. 336 00:14:08,460 --> 00:14:08,700 COMPUTERISED VOICE: I'm struggling to It's a deep grief. 337 00:14:08,700 --> 00:14:10,140 It's a deep grief. 338 00:14:10,140 --> 00:14:10,380 Talking is so much a part It's a deep grief. 339 00:14:10,380 --> 00:14:12,940 Talking is so much a part of being human. 340 00:14:12,940 --> 00:14:13,180 Talking is so much a part It's like rain or snow. 341 00:14:13,180 --> 00:14:15,420 It's like rain or snow. 342 00:14:15,420 --> 00:14:17,100 It comes in many forms. 343 00:14:17,100 --> 00:14:22,140 The live patter, the intense discussion, the passionate argument, 344 00:14:22,140 --> 00:14:24,380 a quick, witty aside. 345 00:14:24,380 --> 00:14:27,140 Jokes that make you cry with laughter. 346 00:14:29,340 --> 00:14:33,220 Do you find that people react to you differently 347 00:14:33,220 --> 00:14:33,460 Do you find that people when you can't talk? 348 00:14:33,460 --> 00:14:34,900 when you can't talk? 349 00:14:34,900 --> 00:14:35,140 What, they think you're deaf? when you can't talk? 350 00:14:35,140 --> 00:14:37,140 What, they think you're deaf? (LAUGHS) 351 00:14:37,140 --> 00:14:37,380 What, they think you're deaf? Do they shout at you? 352 00:14:37,380 --> 00:14:38,740 Do they shout at you? 353 00:14:38,740 --> 00:14:41,220 Oh, they think you're stupid when you can't talk? 354 00:14:41,220 --> 00:14:42,780 Yeah, that's a common thing. 355 00:14:42,780 --> 00:14:43,020 DOM ROWE: She's on a journey Yeah, that's a common thing. 356 00:14:43,020 --> 00:14:45,940 DOM ROWE: She's on a journey with her motor neurone disease, 357 00:14:45,940 --> 00:14:46,220 and Fiona is, quite rightly, completely the captain of her ship. DOM ROWE: She's on a journey with her motor neurone disease, 358 00:14:46,220 --> 00:14:51,820 and Fiona is, quite rightly, completely the captain of her ship. 359 00:14:51,820 --> 00:14:52,060 and Fiona is, quite rightly, completely the captain of her ship. My job is to be her navigator 360 00:14:52,060 --> 00:14:54,540 My job is to be her navigator 361 00:14:54,540 --> 00:14:57,860 and to whisper in her ear as to what I think we should do. 362 00:14:57,860 --> 00:15:01,420 There are two new trials coming through. 363 00:15:01,420 --> 00:15:04,940 We're not yet ready to get to the start line there. 364 00:15:04,940 --> 00:15:09,820 Since I moved to Macquarie University in 2010, 365 00:15:09,820 --> 00:15:14,140 I looked after my 1,000th patient with motor neurone disease. 366 00:15:15,780 --> 00:15:17,780 830 of them are dead. 367 00:15:18,900 --> 00:15:21,980 That does come 368 00:15:21,980 --> 00:15:25,060 with an emotional cost 369 00:15:25,060 --> 00:15:28,180 because if you were not... 370 00:15:29,260 --> 00:15:32,740 ..affected by 371 00:15:32,740 --> 00:15:34,940 the death of the people that you've looked after, 372 00:15:34,940 --> 00:15:35,180 the death of the people you shouldn't be doing the job. 373 00:15:35,180 --> 00:15:37,820 you shouldn't be doing the job. 374 00:15:37,820 --> 00:15:39,100 How's your mood? 375 00:15:40,980 --> 00:15:42,620 Down. 376 00:15:42,620 --> 00:15:44,420 COMPUTERISED VOICE: Professor Rowe is a legend. 377 00:15:44,420 --> 00:15:44,700 Not only because he is tenaciously fighting COMPUTERISED VOICE: Professor Rowe is a legend. 378 00:15:44,700 --> 00:15:47,020 Not only because he is tenaciously fighting 379 00:15:47,020 --> 00:15:49,700 to find treatments or a cure for MND, 380 00:15:49,700 --> 00:15:49,900 to find treatments or a cure for MND, but because he is so kind 381 00:15:49,900 --> 00:15:51,220 but because he is so kind 382 00:15:51,220 --> 00:15:54,180 and offers an unusual amount of warmth and support. 383 00:15:54,180 --> 00:15:57,340 I don't know how he does it, knowing his best efforts 384 00:15:57,340 --> 00:15:57,580 I don't know how he does it, won't save any of us at the moment. 385 00:15:57,580 --> 00:15:59,580 won't save any of us at the moment. 386 00:16:01,460 --> 00:16:05,820 So, the number of deaths from MND have more than doubled 387 00:16:05,820 --> 00:16:09,820 in the last 30 years in Australia and also worldwide. 388 00:16:09,820 --> 00:16:10,100 in the last 30 years in Australia and also worldwide. 10% of cases are genetic, they're inherited, 389 00:16:10,100 --> 00:16:13,620 10% of cases are genetic, they're inherited, 390 00:16:13,620 --> 00:16:16,980 and the other 90% we really don't know what causes it. 391 00:16:16,980 --> 00:16:20,260 'Cause your muscles don't ask your arteries to... 392 00:16:20,260 --> 00:16:23,860 The frustrating thing from where I sit 393 00:16:23,860 --> 00:16:28,420 is that when Fiona says to me, "Why did I get motor neurone disease?" 394 00:16:29,660 --> 00:16:33,260 ..I have to say, "I don't know." 395 00:16:33,260 --> 00:16:39,140 Dom believes if we can identify the causes of motor neurone disease, 396 00:16:39,140 --> 00:16:39,380 Dom believes if we can identify it will help us identify a cure. 397 00:16:39,380 --> 00:16:41,180 it will help us identify a cure. 398 00:16:43,900 --> 00:16:46,460 The Riverina, in south-west New South Wales, 399 00:16:46,460 --> 00:16:48,140 is a big agricultural area 400 00:16:48,140 --> 00:16:48,380 is a big agricultural area and there's a high incidence of MND there, 401 00:16:48,380 --> 00:16:51,180 and there's a high incidence of MND there, 402 00:16:51,180 --> 00:16:54,700 about five times the national average. 403 00:16:56,860 --> 00:17:00,620 One theory is that toxins produced by 404 00:17:00,620 --> 00:17:00,860 One theory is that blue-green algal blooms, 405 00:17:00,860 --> 00:17:02,420 blue-green algal blooms, 406 00:17:02,420 --> 00:17:07,380 which are present in our waterways, are causing motor neurone disease. 407 00:17:08,940 --> 00:17:13,620 We have multiple harmful algal blooms in many waterways 408 00:17:13,620 --> 00:17:14,780 in Australia. 409 00:17:16,980 --> 00:17:18,700 KEN RODGERS: I'm a biomedical scientist 410 00:17:18,700 --> 00:17:18,940 KEN RODGERS: I'm a and my interest is in neurotoxins, 411 00:17:18,940 --> 00:17:20,860 and my interest is in neurotoxins, 412 00:17:20,860 --> 00:17:21,100 trying to understand and my interest is in neurotoxins, 413 00:17:21,100 --> 00:17:23,820 trying to understand how these toxins 414 00:17:23,820 --> 00:17:24,060 trying to understand are causing neurological diseases. 415 00:17:24,060 --> 00:17:26,460 are causing neurological diseases. 416 00:17:27,860 --> 00:17:31,340 Lots of links have been made overseas between 417 00:17:31,340 --> 00:17:35,700 exposure to blue-green algal toxins and motor neurone disease, 418 00:17:35,700 --> 00:17:39,180 but we really need to do our own research here in Australia. 419 00:17:41,420 --> 00:17:47,220 One of my areas of research is on one of these toxins called BMAA. 420 00:17:48,340 --> 00:17:52,620 And we believe that it's capable of damaging the nerves in a body 421 00:17:52,620 --> 00:17:56,380 and thereby contributing to motor neurone disease. 422 00:17:59,180 --> 00:18:01,700 BMAA and blue green algae, however, 423 00:18:01,700 --> 00:18:01,940 BMAA and blue green algae, are not the only element in water 424 00:18:01,940 --> 00:18:03,900 are not the only element in water 425 00:18:03,900 --> 00:18:04,140 that may be associated are not the only element in water 426 00:18:04,140 --> 00:18:07,220 that may be associated with motor neurone disease. 427 00:18:07,220 --> 00:18:11,100 You have other things like pesticides, heavy metals 428 00:18:11,100 --> 00:18:15,660 and just generally toxic chemicals that we can be exposed to. 429 00:18:18,140 --> 00:18:22,420 We should make motor neurone disease a notifiable disease 430 00:18:22,420 --> 00:18:27,620 because currently we do not know who has it 431 00:18:27,620 --> 00:18:27,860 because currently and where they live. 432 00:18:27,860 --> 00:18:29,380 and where they live. 433 00:18:29,380 --> 00:18:32,700 KEN: If MND was a notifiable disease, 434 00:18:32,700 --> 00:18:36,860 governments would be obliged to keep accurate data 435 00:18:36,860 --> 00:18:39,660 on who gets the disease. 436 00:18:39,660 --> 00:18:43,540 So the Riverina might just be one of many clusters around Australia. 437 00:18:43,540 --> 00:18:43,780 So the Riverina might just be one And if we can identify who gets it, 438 00:18:43,780 --> 00:18:47,460 And if we can identify who gets it, 439 00:18:47,460 --> 00:18:50,620 we can work out if there are other hotspots, 440 00:18:50,620 --> 00:18:53,020 and based on that knowledge, we can try and work out 441 00:18:53,020 --> 00:18:53,260 and based on that knowledge, what people are being exposed to. 442 00:18:53,260 --> 00:18:55,020 what people are being exposed to. 443 00:19:00,220 --> 00:19:01,700 In you go. 444 00:19:20,300 --> 00:19:22,940 # From the moment I wake up... # 445 00:19:22,940 --> 00:19:25,780 Being able to drive with Mum, and spend that time, 446 00:19:25,780 --> 00:19:26,020 Being able to drive with Mum, it meant a lot. 447 00:19:26,020 --> 00:19:27,220 it meant a lot. 448 00:19:27,220 --> 00:19:31,300 It really was a trip of a lifetime for, I think, everyone involved. 449 00:19:32,260 --> 00:19:34,100 # Forever and ever 450 00:19:34,100 --> 00:19:36,900 # You'll stay in my heart and I will love you 451 00:19:36,900 --> 00:19:37,140 # You'll stay in my heart # Forever and ever... # 452 00:19:37,140 --> 00:19:38,820 # Forever and ever... # 453 00:19:38,820 --> 00:19:41,260 To date, we've raised 86,000, 454 00:19:41,260 --> 00:19:44,100 money going directly to research for MND. 455 00:19:45,060 --> 00:19:48,100 This trip is not for a cure for Fiona 456 00:19:48,100 --> 00:19:51,460 because it's too far in her journey with the disease. 457 00:19:53,780 --> 00:19:55,380 Oh, my God. 458 00:19:55,380 --> 00:19:56,940 You'd better get in. No. 459 00:19:56,940 --> 00:20:01,020 Hopefully that money will go to finding a cure for other people 460 00:20:01,020 --> 00:20:01,260 Hopefully that money will go who do get this terrible diagnosis. 461 00:20:01,260 --> 00:20:03,020 who do get this terrible diagnosis. 462 00:20:08,700 --> 00:20:12,980 I think the adventure has nurtured Fiona. 463 00:20:12,980 --> 00:20:16,620 It's given her a connection to the Earth. 464 00:20:16,620 --> 00:20:18,380 And I think that's what she really wanted. 465 00:20:18,380 --> 00:20:20,860 What do you think? It's good. 466 00:20:20,860 --> 00:20:23,300 Seeing the stars out of a city, 467 00:20:23,300 --> 00:20:25,580 and had these crazy emus tried to get in our car. 468 00:20:25,580 --> 00:20:25,820 and had these crazy emus Hey! Hey! 469 00:20:25,820 --> 00:20:28,340 Hey! Hey! 470 00:20:28,340 --> 00:20:32,980 Mum and Kylie have a...a sisterly relationship 471 00:20:32,980 --> 00:20:33,220 Mum and Kylie have that I think anyone would envy. 472 00:20:33,220 --> 00:20:34,500 that I think anyone would envy. 473 00:20:36,380 --> 00:20:38,620 Can you hang on to both of those? Mm. 474 00:20:38,620 --> 00:20:40,300 You right? Yeah. 475 00:20:40,300 --> 00:20:43,940 I've really found it quite interesting and crazy 476 00:20:43,940 --> 00:20:46,180 that Kylie always understood what Mum was saying, 477 00:20:46,180 --> 00:20:48,980 and they just kind of obviously formed 478 00:20:48,980 --> 00:20:52,660 this kind of communication that just worked. 479 00:20:52,660 --> 00:20:52,900 this kind of communication that just worked. Home sweet home. 480 00:20:52,900 --> 00:20:54,740 Home sweet home. 481 00:20:54,740 --> 00:20:56,780 Hooray! 482 00:20:56,780 --> 00:20:57,020 Fiona and I, Hooray! 483 00:20:57,020 --> 00:20:59,540 Fiona and I, our relationship is, you know, 484 00:20:59,540 --> 00:20:59,780 Fiona and I, I don't think it's changed. 485 00:20:59,780 --> 00:21:00,620 I don't think it's changed. 486 00:21:00,620 --> 00:21:03,460 I think we're both as daggy as each other and run around 487 00:21:03,460 --> 00:21:06,580 and do crazy things like drive around Australia together. 488 00:21:06,580 --> 00:21:08,540 (LAUGHS) My... 489 00:21:09,620 --> 00:21:11,900 I'm the shoulder. Yeah. 490 00:21:30,380 --> 00:21:35,420 We're stopped because Fiona needs to do some stretching 491 00:21:35,420 --> 00:21:37,060 every couple of hours. 492 00:21:38,420 --> 00:21:41,060 Otherwise it's not comfortable. 493 00:21:41,060 --> 00:21:43,780 So we call it the roadside gym. 494 00:21:43,780 --> 00:21:45,660 (LAUGHS) 495 00:21:48,100 --> 00:21:51,060 Today we're day 34, 35. 496 00:21:51,060 --> 00:21:52,540 1,000km left to go. 497 00:21:52,540 --> 00:21:54,500 We are driving into Brisbane 498 00:21:54,500 --> 00:21:54,740 and we're going to see our sister We are driving into Brisbane 499 00:21:54,740 --> 00:21:57,500 and we're going to see our sister Jacki and our family. 500 00:21:57,500 --> 00:21:57,740 and we're going to see our sister We can't wait. 501 00:21:57,740 --> 00:21:58,740 We can't wait. 502 00:21:58,740 --> 00:22:00,940 Hooray! (PARTY BLOWERS TOOT) 503 00:22:00,940 --> 00:22:01,180 Hooray! (SPEAKS INAUDIBLY) 504 00:22:01,180 --> 00:22:03,420 (SPEAKS INAUDIBLY) 505 00:22:06,820 --> 00:22:08,340 Did you like the tooters? 506 00:22:08,340 --> 00:22:10,460 Long time no see. How are ya? 507 00:22:11,780 --> 00:22:14,020 Come on, I'll get you a glass of champagne. 508 00:22:14,020 --> 00:22:15,740 KYLIE: I definitely think Fiona realises, 509 00:22:15,740 --> 00:22:17,940 or feels that the clock is definitely ticking, 510 00:22:17,940 --> 00:22:20,060 and she does have a finite amount of time. 511 00:22:20,060 --> 00:22:22,620 I don't know how you did it. What was the camping like? 512 00:22:22,620 --> 00:22:23,380 Fabulous. 513 00:22:23,380 --> 00:22:27,460 You really, every day, are looking at it, knowing that, well, 514 00:22:27,460 --> 00:22:30,740 "How do I feel? Oh, no. Today I can't lift my toes up." 515 00:22:30,740 --> 00:22:30,980 "How do I feel? Oh, no. You know, just the progression. 516 00:22:30,980 --> 00:22:32,660 You know, just the progression. 517 00:22:32,660 --> 00:22:36,620 Even in the time that we have been on the road, I see little things. 518 00:22:36,620 --> 00:22:38,860 You know, she's starting to get a bit of swelling in her legs 519 00:22:38,860 --> 00:22:41,260 and just...it's nasty. 520 00:22:41,260 --> 00:22:42,900 Two words. Two words. 521 00:22:42,900 --> 00:22:43,140 Two words. Oh. Write. 522 00:22:43,140 --> 00:22:44,060 Oh. Write. 523 00:22:44,060 --> 00:22:46,340 Second word is...it's a book. Lines? 524 00:22:46,340 --> 00:22:47,740 Oh, list. List. 525 00:22:47,740 --> 00:22:47,980 Oh, list. Yay! 526 00:22:47,980 --> 00:22:48,860 Yay! 527 00:22:48,860 --> 00:22:51,020 An... Is it a bucket list? 528 00:22:51,020 --> 00:22:52,820 Ah! (APPLAUSE) 529 00:22:52,820 --> 00:22:55,340 Go, Andrew. Go, Andy. (SPEAKS INAUDIBLY) 530 00:22:55,340 --> 00:22:58,700 I don't really think I probably have dealt with it. 531 00:22:58,700 --> 00:22:58,940 I don't really think I mean, you've got to be realistic. 532 00:22:58,940 --> 00:22:59,940 I mean, you've got to be realistic. 533 00:22:59,940 --> 00:23:02,820 You know, I think the idea of 534 00:23:02,820 --> 00:23:06,620 your sister not being there anymore is shocking. 535 00:23:06,620 --> 00:23:09,300 I think I'm a bit of a pathetic wimp when it comes to things like that. 536 00:23:09,300 --> 00:23:12,500 So I'm going to put that over there and deal with it later. 537 00:23:12,500 --> 00:23:15,140 Make every day just as good as you can be. 538 00:23:15,140 --> 00:23:15,380 Make every day That's what my...that's my approach. 539 00:23:15,380 --> 00:23:18,140 That's what my...that's my approach. 540 00:23:18,140 --> 00:23:20,060 I don't know how I'm going to deal with that. 541 00:23:22,380 --> 00:23:23,940 (SNIFFLES) 542 00:23:23,940 --> 00:23:25,620 (SOBS) I'm sorry. 543 00:23:30,180 --> 00:23:32,500 I don't want to deal with it. I don't. 544 00:23:32,500 --> 00:23:32,740 I don't want to deal with it. A big snooze. She wants a nanna nap. 545 00:23:32,740 --> 00:23:34,660 A big snooze. She wants a nanna nap. 546 00:23:36,100 --> 00:23:42,420 I think she'll just live every day in the biggest way she can. 547 00:23:43,580 --> 00:23:45,820 That's just...that's just who she is. 548 00:23:53,300 --> 00:23:56,260 It was so great driving over Sydney Harbour Bridge. 549 00:23:56,260 --> 00:23:56,500 It was so great driving over What a trip. What a milestone. 550 00:23:56,500 --> 00:23:58,620 What a trip. What a milestone. 551 00:23:58,620 --> 00:24:00,980 Good weather to go to bed and sleep. 552 00:24:00,980 --> 00:24:04,620 I think she's exhausted, but I think she's also 553 00:24:04,620 --> 00:24:08,020 the adrenaline of realising we're nearly home. 554 00:24:08,020 --> 00:24:08,260 the adrenaline of realising You know, we've done this. 555 00:24:08,260 --> 00:24:09,580 You know, we've done this. 556 00:24:10,540 --> 00:24:12,100 We made it! 557 00:24:12,100 --> 00:24:14,740 (LAUGHS) How exciting. 558 00:24:16,540 --> 00:24:20,780 (CHEERING) 559 00:24:25,940 --> 00:24:28,900 When we arrived back into Sydney, it was wonderful to see everyone. 560 00:24:28,900 --> 00:24:29,140 When we arrived back into Sydney, Fiona really does have a village. 561 00:24:29,140 --> 00:24:30,700 Fiona really does have a village. 562 00:24:33,980 --> 00:24:37,140 Fiona has already proven 563 00:24:37,140 --> 00:24:37,380 that you can have so much fun Fiona has already proven 564 00:24:37,380 --> 00:24:41,660 that you can have so much fun every day if you just keep going. 565 00:24:41,660 --> 00:24:42,980 And that's what she's done. 566 00:24:42,980 --> 00:24:46,100 Whoo-hoo! (LAUGHS) 567 00:24:47,900 --> 00:24:50,700 DOM: The thing that keeps Fiona going 568 00:24:50,700 --> 00:24:50,940 DOM: The thing is her irrepressible joy of life. 569 00:24:50,940 --> 00:24:53,820 is her irrepressible joy of life. 570 00:24:53,820 --> 00:24:55,900 Her friends, her family. 571 00:24:56,900 --> 00:25:00,060 It was quite clear early on 572 00:25:00,060 --> 00:25:00,300 that no matter It was quite clear early on 573 00:25:00,300 --> 00:25:03,580 that no matter what curveballs were thrown at her, 574 00:25:03,580 --> 00:25:07,860 she would...try to catch the ball and throw it back at you. 575 00:25:09,180 --> 00:25:11,780 COMPUTERISED VOICE: For anyone with a dreadful disease like MND, 576 00:25:11,780 --> 00:25:14,140 try to just get up every day. 577 00:25:14,140 --> 00:25:15,420 Keep going. 578 00:25:15,420 --> 00:25:17,260 Allow the emotions to wash over you 579 00:25:17,260 --> 00:25:19,060 but don't let them drown you. 580 00:25:19,060 --> 00:25:21,500 Enjoy life, even if it's constrained. 581 00:25:22,820 --> 00:25:26,100 KYLIE: Fiona and I have had the greatest time. It's been amazing. 582 00:25:26,100 --> 00:25:28,620 And I think it'll really begin to dawn on us, 583 00:25:28,620 --> 00:25:32,260 the feat that we have achieved now that we're actually at home. 584 00:25:34,100 --> 00:25:36,140 40 days. 585 00:25:36,140 --> 00:25:40,980 And 15,520km on the knocker. 586 00:25:43,660 --> 00:25:48,500 The message I think Fiona is trying to deliver to everybody is... 587 00:25:48,500 --> 00:25:49,420 Live. 588 00:25:49,420 --> 00:25:50,500 Live your life. 589 00:25:50,500 --> 00:25:52,020 Don't sit on the couch. 590 00:25:52,020 --> 00:25:55,100 Do something crazy like drive around Australia in 40 days. 591 00:25:55,100 --> 00:25:55,340 Do something crazy like drive (LAUGHS) Yeah. 592 00:25:55,340 --> 00:25:56,980 (LAUGHS) Yeah. 593 00:25:56,980 --> 00:25:58,500 Enjoy. 594 00:27:49,980 --> 00:27:51,740 Captions by Red Bee Media 595 00:27:51,740 --> 00:27:54,460 Copyright Australian Broadcasting Corporation