02 | Remember Me | Return of the Songbird

When her Parkinson's Disease medication stopped working musician and writer Linda Neil was in a very dark place. But a treatment called Deep Brain Stimulation has allowed her to return to playing the violin, singing, songwriting, living an independent life and riding her pink bicycle.

• 0:00Speaker 00

  ABC Listen. Podcasts, radio, news, music and more.

• 0:06Speaker 01

  Hello, Hilary Harper with you. And in ABC Rewind, we bring you a selection of episodes from the documentary show Earshot, showcasing first-person storytelling at its best.

• 0:24Speaker 02

  Deep brain stimulation. It sounds like something out of George Orwell's novel, 1984. But it's actually a treatment for Parkinson's disease. And the results can seem...

• 0:36Speaker 03

  Kind of miraculous, really. It was like an instant kind of change.

• 0:40Speaker 04

  The next day, I went into her room and she got up and she was walking around normally. And she was literally singing and dancing.

• 0:47Speaker 02

  I'm Takumbuzi. And on Earshot's season of tales about the other me, Claudia Taranto introduces us to her friend Linda Neil, a writer, artist and singer-songwriter. Now, you might know Parkinson's disease for the tremors and the softening of the voice that people get. But Linda, with the help of creativity and deep brain stimulation, is living a very different version of Parkinson's.

• 1:14Speaker 05

  My name is Dr Linda Neil. I have a very croaky voice. But you'll learn to love it like others have. You and your little ukulele. Me and my little violin. Two and two make four. Baby, we're so much more. I don't know where to begin.

• 1:49Speaker 06

  She's very positive, passionate, cheerful and wise. She's also whimsical and artsy. I love her style, always wearing colours, always wearing numerous layers and hats and glasses. And she never judges you.

• 2:14Speaker 01

  Yep, I agree with Linda's musician friend Dublin Rose. Linda Neil and I first met when she literally danced into a meeting at Radio National. Her long, auburn ringlets and playfulness captivated me.

• 2:29Speaker 01

  By then, she'd already had a career, playing violin in orchestras and rock bands. She'd published a couple of books of memoir and released an album of her sweet and soulful songs. At our end, she was an artist in residence, making audio docos about things like "Why Music Makes Us Cry?" and about singing love songs in people's lounge rooms.

• 2:51Speaker 05

  In 2009, I thought I'd test out some ideas I'd gathered four years earlier, when I had travelled through India, Paris and Nepal, singing love songs as a way to heal my broken heart. I have loved many, and a few have loved me.

• 3:16Speaker 05

  I've tried to be wise, while I learned to be free.

• 3:26Speaker 01

  Linda and I stayed close, even after she moved from Sydney back to Brisbane. And I remember vividly the day I was in the kitchen at work and took the call from her with the news about her diagnosis. She was in her early 50s. Her brother Paul was shocked too.

• 3:46Speaker 03

  I do remember Linda coming over on that very day and letting me know that she'd been diagnosed with Parkinson's, and I really just couldn't believe it. I just thought, "This can't be right." Because it really hadn't been that long ago that our mother had gone through seven years of deterioration before dying from her condition. And so, we were just kind of staggered that it could happen again, especially to Linda, who'd looked after Mum.

• 4:19Speaker 01

  The Parkinson's diagnosis was 11 years ago. At the time, Linda took the medication and kept writing, but she totally gave up singing and playing the violin.

• 4:34Speaker 05

  Well, I remember I tried to play violin from sheet music. And it was so awful that I thought, I can never do this again. Well, I was very blessed, eh, really, because I thought, well, that's it. That's over for me. Music is over. And I'll do other things now. But I didn't really understand what I was giving up.

• 5:05Speaker 05

  I wrote this little story, I guess you'd call it a fable. A songbird lived in my mouth. I sang lullabies as it slept on my shoulder. Neither teeth, nor lips, nor tongue, nor unkind thought or action could bruise the tiny bird that nestled in my throat. And I guess that just began this whole notion of bird living inside your mouth, and living inside your lungs, and living inside your body, I guess. And that the songbird has to sing, because that's what birds do.

• 5:51Speaker 05

  I saw my mother suffer a lot. And when I was diagnosed, I just thought, I'm gonna have a different story. This is not my mother's story. This is my story. I'd already written a story. As you know, I wrote a book about mum and having Parkinson's. But I also knew how important it was to keep going with the things you love to do. And the songbird represents that. The songbird flies on the stroke of midnight, listening for the sound of the invisible.

• 6:36Speaker 01

  Linda moved to Sherwood in western Brisbane. I visited her a few times. We walked in the arboretum and drank Earl Grey chai. She kept writing. She began a book about having Parkinson's. And she painted wide-eyed women with flowers and jewels in their hair. But as time went on, she was able to do less and less. Her sister Cathy remembers. Things started to change about three years ago. The disease started to affect her ability to move and to function. But she lived on her own over in Sherwood and was quite desperate for help. She ended up being in hospital. They tried to change all her medication.

• 7:22Speaker 01

  And what my brother and I decided was to really get her to come and live closer to us. So we were lucky to find a lovely unit near the water.

• 7:31Speaker 05

  And it was them really that my sister, who was a fierce warrior on my behalf, and my brother and my whole family really, picked me up really and took me with them. And brought me to a new place, brought me to new possibilities. I think I always doubted that I was loved. And seeing what they would do for me made me realise that I was very loved.

• 8:07Speaker 01

  Sand Gates is a suburb on Brisbane's Moreton Bay. It has a sleepy holiday feel. And there's a winding esplanade with lots of shady Moreton Bay figs and cotton trees. When Linda first moved there, Paul took her walking at five every morning. And Linda started noticing the leaves and flowers that were staining the footpath.

• 8:30Speaker 05

  I just photographed rubbish, old leaves, dead things that I came across on my morning walks. I actually call it my detritus collection. And detritus means things that are considered to be useless, things that are dead, things that have no value. I used all the filters, I saturated all my pictures, but they, they sort of throb and vibrate with something quite magical. For me, it was always this feeling of churning, that life was full of churning possibility. And that's what I was capturing.

• 9:14Speaker 05

  Working with these concepts and working with these ideas helped give me value in a situation where I might have felt valueless. And I actually won a competition, in a local art competition, for best digital photography. It was just a community event, but it had an epic effect on me. Because I was accepted and I was singled out for doing something unique and fragile, you know?

• 9:49Speaker 01

  Linda wrote a book of tiny stories about the detritus discarded by the bay. And thanks also to the NDIS, she started making music again, with Dublin Rose, a young local musician.

• 10:06Speaker 05

  Hey Dee.

• 10:06Speaker 06

  Hey, how are you?

• 10:08Speaker 05

  How are you going?

• 10:08Speaker 06

  You look cutesy.

• 10:10Speaker 05

  Everything's cutesy.

• 10:12Speaker 06

  Shall we do written starts while I got the guitar out?

• 10:17Speaker 06

  This song is very dreamy. One of my favourites, I reckon. Linda's so amazing at songwriting. I would say specifically her lyrics. She's very poetic and she doesn't always rhyme. She uses very quirky language. I remember the word rambunctious I'd never heard of and now it's such a funny bit of my vocabulary.

• 10:48Speaker 06

  But it seemed perfectly perfect that way.

• 10:54Speaker 06

  No matter what you do, I'll always be in love with you. It's written in the stars, day by day. It's written in the stars, day by day.

• 11:17Speaker 06

  So refined and so rambunctious.

• 11:23Speaker 06

  I remember like, she had this, um, like, swing band that she was obsessed with on Spotify. And we would always do dancing together in the kitchen. While I would make her dinner and stuff.

• 11:44Speaker 06

  I would say that firstly, I've gained a really good friend and a mentor. She's very wise and someone I can talk to so easily. Everything in the outside world or like in the music industry feels so serious. But I love getting to hang out with Linda and it can just be cosy and cute and fun. And there's no expectation.

• 12:04Speaker 06

  She's also like told me a lot about like, make sure you like stay true to yourself. A lot of the time when I perform, I don't wear my glasses because I think they are uncool or whatever. But Linda always says, "I love your glasses, you should wear them." And so in ways, I feel more comfortable in myself and like, I don't have to be some specific thing.

• 12:37Speaker 01

  I have a photo of Linda and I from two years ago. We're at the end of the Shaun Cliff Pier. The wind in our hair, big sunglasses, big hats, big smiles. On that visit, we did a lot of walking. She was walking faster than I was.

• 12:56Speaker 01

  And a lot of dancing too. But only in the couple of hours when her medication was working. Like Alice in Wonderland with the magic mushrooms. When the medication wore off, it was a different story. Linda's sister Cathy explains. And she was totally dependent on when the next cycle was. Because, you know, Pakistan people have these cycles, as our mum did. And with the drugs, they give you a sense of life and then, as it wears off, your body closes up again and then get another three hours later. So it gets closer and closer, so there's less and less time. And your whole life is dependent on, related to when the next medication is.

• 13:37Speaker 05

  I got to a point where I couldn't handle the medication anymore. It was really messing with my head. And this is devastating to me.

• 13:51Speaker 03

  I tend to notice when things aren't good. She reaches out, she calls and leaves messages and they're a little bit desperate. And it reminded me of my mother's messages when she was in the same condition. So they would include paranoia and panic attacks. And that must be very distressing. It's certainly very distressing to hear her talking to me when she's in those conditions. So it's hard to know what to do and how to help.

• 14:25Speaker 01

  Paul took Linda to hospital. And that was where her neurologist mentioned deep brain stimulation for the first time. Linda had never wanted surgery because...

• 14:35Speaker 05

  I thought for a long time, oh, I will never have it because I don't want people messing around with my electrodes in my brain.

• 14:44Speaker 01

  But she'd really run out of options.

• 14:47Speaker 05

  So for the first time in my life, really, I just thought, okay, I'm going to do it.

• 14:53Speaker 01

  Deep brain stimulation, or DBS, involves placing 1mm-sized electrodes deep in the brain to stimulate areas that aren't working properly. Professor Peter Silburne is from the Queensland Brain Institute and Neurosciences Queensland. He's also Linda's neurologist.

• 15:14Speaker 07

  So the surgery involves finding the target in the brain and successfully placing the electrode in there. But whilst we're there, we have a very unique position. We can actually look at what's going on inside the brain while you're talking to patients.

• 15:31Speaker 01

  This is during the surgery?

• 15:33Speaker 07

  Yeah, during the surgery, we've seen...

• 15:35Speaker 01

  So the patient is awake?

• 15:37Speaker 07

  The patients can be awake, they can be asleep. We kind of like people awake. You can touch the brain and do things to the brain. In a surgical situation, the brain doesn't feel any pain. And it's not aware of what you're doing. And we can get them to do various tasks. So we can see what mental arithmetic looks like. And we can say, "What's 10 plus 2 equal to?" And they'll go, "12." The brain acts very quickly with things like that. And we can see the neurons fire off. And we can actually take those neurons and then see who's talking to who at a cellular level. We can see what imagination looks like in various structures. We've seen, practising Buddhist, we've seen them go in and out of their trance

• 16:22Speaker 07

  and watch the individual brain cells working.

• 16:26Speaker 01

  DBS has been around for 25 years. It's performed all over the world and around Australia. You can even claim it on Medicare. But it's not very well-known. As well as Parkinson's disease, it can also treat Tourette's, phantom limb pain. And when Professor Silburne's operating on someone with obsessive-compulsive disorder...

• 16:50Speaker 07

  We get people and show them things that might upset them, if you like. Trash on the ground or things that are just terrible or that they're worried about. And we watch which part of the brain actually fires off. So we know those areas of the brain are the ones we should influence to calm things down. We've also got people to imagine they're walking down the street. And we can see gate disturbances in certain people.

• 17:18Speaker 07

  And we can see these little ensembles of neurons that are deep in the brain that if you want people to imagine they're walking, the neurons will fire together. If you want to move their limbs, it's a different set of neurons come in. But these are tiny areas where there's thousands and thousands of cells.

• 17:37Speaker 01

  Linda was awake during her surgery, but she doesn't remember anything about it.

• 17:42Speaker 07

  In Linda's surgery, we were asking her certain questions or we were examining how well a hand functions or their stiffness or slowness or tremor. And when we picked the target and we found the target by constructing an image on the brain in three dimensions, we see the target, we place the electrode in there, we confirm it by seeing what neurons are firing off, and then we flick the switch on the ico electrode and we watch the signs just evaporate.

• 18:15Speaker 04

  The next day, I went into her room and she got up and she was walking around normally and she was literally singing and dancing and making the bed and I was just, it was in, I'm going to cry, it was just awesome. And that's exactly what Phil had said, that it would be immediate, it would be an immediate change.

• 18:38Speaker 05

  People were just amazed, but all I could see was just that I had shaved head. And very soon after, I went swimming, I went surfing in the ocean.

• 18:50Speaker 01

  How long had it been since you'd swum in the ocean?

• 18:53Speaker 05

  Years. It was sort of a miracle, it was like a miracle. I could read a whole book of 300 and 400 pages when I came out of the DBS.

• 19:10Speaker 01

  And before?

• 19:11Speaker 05

  I didn't have the concentration. You know, and I was always moving around the room because I was so uncomfortable. You can see now I can just sit here. And that's another thing that I went up to the DBS where I knew things had changed. As I spontaneously started telling jokes.

• 19:32Speaker 04

  To laugh and to be able to discuss books again. And to, you know, get the interest and see her sitting there with her glasses on, just absorbed in a book. Not worried about the next medication was fantastic.

• 19:46Speaker 05

  It's given me the ability to live independently again. And hopefully for a long time.

• 19:56Speaker 01

  Linda even made a short film of her surfing. It's pure joy and freedom. She called it Pink Boogie. The boogie board was pink.

• 20:07Speaker 01

  The DBS hasn't cured Linda. She still gets tired and a bit anxious. Parkinson's will keep progressing through her brain. But now, when she develops a new physical symptom, like six months ago, her left foot started shaking. Professor Silburne and his team have developed something remarkable. They can adjust the electrodes in her brain remotely.

• 20:33Speaker 07

  Probably the biggest thing that we've done, and I'm personally very proud of it, is that here in these rooms in neuroscience in Queensland, we, in conjunction with a company called Abbott, who have all the smart software engineering guys and work these things out. We were able to remotely change human brain function and therefore improve patients' lives anywhere in the world where there's a wifi system or a 5G or 4G telephone system.

• 21:02Speaker 01

  What about cybersecurity though? Professor Silburne told me they've sorted that. It's at the same standard as the military.

• 21:10Speaker 07

  And the first one was done up in my kitchen. The patients are in the rooms here at NSQ. And we were able to just turn things off. Tremor came back, stiffness came back, and then turn things back on and the tremor and stiffness went. And that was quite a sentinel moment, I think, in how brain-machine interfaces interact and how you can improve people's lives. And it made the top 100 inventions of all types of inventions in the world in 2021.

• 21:44Speaker 01

  They had one patient on holidays in France, and they were able to change the stimulation in his brain from Brisbane. And when Linda's foot started shaking, she just had to link up with the neuroscience Queensland nurses via video calls. And they gradually, over months, adjusted her electrodes, until her foot stopped shaking and she could return to riding her pink bike. Did I mention she loves the colour pink?

• 22:09Speaker 06

  Linda and I on our first bike ride together.

• 22:12Speaker 05

  Such a glorious day, Dublin Rose. You taught me to understand and to realise, to name the things.

• 22:18Speaker 01

  Linda's written a story about her bike.

• 22:21Speaker 05

  The Pink Bicycle, A Love Story. Last year, my sister-in-law, Kim Bosley-Neil, lost her mum Alma to lung cancer. I loved Alma. Her cheeky smile and dancing eyes truly sparkled. I'll never forget Easter Sunday 2022, when she and Kim, having heard about my new pink bicycle, turned up for a visit. Alma was thrilled that I had bought the bike. She felt that when I was riding, I showed none of the symptoms of Parkinson's disease. Muscle memory envelops me whenever I ride. And right from the start, I cycled without falling, without flailing, and without fear.

• 23:08Speaker 05

  After Alma died in June 2022, I heard from Kim that one of the things her mum had said to her before she died was to make sure that I rode the bike every day. So, thank you Alma for understanding it takes a lot of mental courage and a whole lot of will to keep riding day after day when you're struggling with PD. Sometimes when I'm too tired to ride, I can still imagine myself riding every day, riding up and down the estuary in sunny Sandgate. I imagine too that somewhere across the bay Alma is riding alongside me. And yes, her bicycle is pink as well.

• 23:57Speaker 05

  Pull up this song somewhere. Sorry, sorry.

• 23:59Speaker 01

  Through the NDIS, Linda also has an art and video assistant, Bella. She helps her with her photography and editing her films. And today Bella's helping her get her back catalogue of songs online.

• 24:20Speaker 06

  I love Linda's films because they are so positive. They're, I think, a really nice insight into having Parkinson's. Like, I think it would be really easy to make a sad, depressing film because there are so many negatives. But she really focuses on the positives.

• 24:40Speaker 05

  Now, make this body your heart. Body your heart, your mind, your soul. You're gonna feel so alive and hope. Pay attention to what you feel.

• 24:49Speaker 06

  I think that the creativity, like whenever she is creative and uses that part of her brain, you can really see it relaxes the rest of her body. Like, it's not a cure, but it definitely improves her mood instantly. Like, I've had days where I've come in and she's been tired and we've just sat there calmly and then maybe we've just started talking about her art or talking about a project she's working on at the moment. And then all of a sudden she gets this passion and drive again and energy back and it really improves her mood. And it just, I think, having that little bit of creativity every day is so important.

• 25:30Speaker 01

  And something else has happened since the surgery.

• 25:33Speaker 05

  After I gave up the violin years ago, I started very, very tenuously lifting it up out of the violin case, thinking, "I couldn't possibly do this." But I started to scratch for my way on violin and yeah, I can play.

• 26:01Speaker 06

  A big thing was this soiree that we had about eight months ago. And it was really cosy and lovely in Linda's living room, where we invited our friends and family. And we played a whole set of like six original songs and everyone loved it.

• 26:22Speaker 05

  And we loved it.

• 26:23Speaker 06

  This is like one of the first songs we wrote together. When did we write this?

• 26:28Speaker 05

  Pre-DBS.

• 26:30Speaker 06

  Oh yeah, it was, it was, it was.

• 26:32Speaker 05

  My head was starting to shake around a little bit too much and so I needed something to tether my chin and head. And remember I sat at the table and sang it like this?

• 26:44Speaker 06

  Yeah, yeah.

• 26:45Speaker 05

  The lyrics were based on my neighbours who laughed all the time.

• 26:49Speaker 06

  Yeah.

• 27:20Speaker 01

  Everyone's experience of Parkinson's is different and many aren't good candidates for deep brain stimulation. But luckily for my friend Linda, she's one of them. And it's changed her life. She'll keep making music and art by the bay in Brisbane and keep dancing in her kitchen.

• 27:53Speaker 02

  Return of the Songbird was produced by Claudia Toranto. The sound engineer was Simon Branthwaite and you can follow Lynda Neal on Spotify and Instagram. Next time on Earshot, what happens when your biological sister turns up on your doorstep, totally out of the blue? And you're both in your 60s and neither of you knew the other existed. It's a story of hidden secrets and belonging. I'm Tukun Buzi, see you then.

• 28:39Speaker 00

  You've been listening to an ABC Podcast. Discover more great ABC Podcasts, live radio and exclusives on the ABC Listen app.