[00:00:00] Hi, I'm Chrissy Mack from Radio Northern Beaches and you've just tuned in to the Listen and Chat with Chrissy Mack podcast. This is the space where we pull no punches, sometimes a little controversial, sometimes downright outrageous, and sometimes just packed full of information that is interesting to know. Today I have on the phone with me Denise Duclos from the Dystonia Awareness and she's going to tell us about the organisation
[00:00:27] and what dystonia is and all about September being the month of awareness. Hello and welcome to Radio Northern Beaches, Denise. Hi Christine, thank you so much. So tell us about your organisation, how you got into it. Dystonia, it's not a well-known illness. No, it's not. In fact, when I developed it about eight years ago, I'd never heard of it, didn't know anybody who knew of it.
[00:00:54] It's a neurological disorder which affects muscles, so it causes abnormal twisting, postures, spasms, tremors. It can often be painful and it can affect adults of any age and children and there's no known cure for it, unfortunately. So no known cure. So how do you live with this and why are we doing an awareness in September?
[00:01:18] Apparently that is worldwide. A lot of countries recognise September as Dystonia Awareness Month. Yes, we aim to get the word out there about the existence of dystonia. It's actually the third most common movement disorder following essential tremor. There's possibly 300,000 or so people with essential tremor in Australia. Parkinson's may affect more than 150,000 people and they're of course well-known.
[00:01:47] Dystonia, the third most common movement disorder, only affects probably about 4,000 to 8,000 people in Australia. So it's highly likely that if someone is diagnosed with dystonia, they've never heard of it. They don't know anybody who knows of it. It can only be diagnosed by a neurologist who specialises in movement disorders
[00:02:10] and usually the diagnosis comes after they've excluded other things like Parkinson's or stroke or tumours. And for some people it can take months or even years to get an accurate diagnosis. So how did it come about that you discovered you had dystonia? So I developed a slight head tremor which was imperceptible to everybody else but I could feel it.
[00:02:37] And my GP sent me to a physiotherapist thinking it might be stress. And after a few sessions with the physio, he said, I really don't think it's something I can treat. He said, I think you need to see a neurologist. So my GP referred me to a neurologist. Luckily, he was a movement disorder neurologist. And on my first visit with him, he was able to diagnose me with dystonia just by looking at me and feeling the tremor.
[00:03:06] So usually people with dystonia, if they're treated, they get botulinum toxin injections. And the most well-known of these is Botox. Neurologists inject Botox or Dysport or Xeomin. They're all botulinum toxin brands. They inject them into the muscles to paralyse the muscles that are behaving badly. So for a few years, I was getting injections in my neck because my dystonia is primarily in my neck.
[00:03:35] And every three months, I would go and get injections in my neck. And it would sort of paralyze the badly behaving muscles and sort of increase my range of motion and sort of reduce the pain a bit, reduce the tremor, certainly. But then it wears off. So you've got to go back and get more injections. I'm lucky that my dystonia has just stayed in my neck. It can basically affect any muscle in the body.
[00:04:03] Some people have it in their eyelids where their eyelids sort of shut on them and they can't open them. And these poor people have to get Botox injections in their eyelids, which I can't imagine what that would be like. Some people get it in their voice box. And interestingly, for Awareness Month this year, the Dystonia Network of Australia Committee have done a video interview with a singer called Jenny Morris.
[00:04:32] She's a well-known Australian singer. She is. Yeah, and she has spasmodic dysphonia, which means she's got dystonia in her voice. And that was a reason that she gave up singing, unfortunately. So you can get it. You might have heard of writer's cramp. That's basically a dystonia in your forearm. You can get dystonia in your jaw. Or you can also have generalized dystonia where it affects a lot of muscles all through your body.
[00:04:59] So as I said, I was lucky that mine stayed in my neck. And I sort of manage mine pretty well at the moment with I've been to physiotherapists and I've got a lot of sort of exercises and stretches that I do and I keep fairly fit. And that's enabled me to stop having the Botox injections. And I just sort of manage my dystonia with sort of getting rest and doing the right sort of exercise and stretching of my neck.
[00:05:29] How does this affect your life otherwise? At first, when I was diagnosed, I was extremely apprehensive because I thought it was going to spread through my entire body. And yeah, I was really apprehensive about what would happen. It's got to be quite frightening to have that sort of a diagnosis for something that can't be cured. Yeah, yeah, that's right. Yeah.
[00:05:53] And especially because neurologists sort of can't accurately predict, you know, what the outcome is going to be. At least it's not a progressive or a degenerative disease like Parkinson's. And the vast majority of people with dystonia, it sort of plateaus after a few years.
[00:06:11] And then they manage it with, you know, injections or with medication or sometimes deep brain stimulation where electrodes are inserted into the brain and they target sort of the offending muscles. So, you know, the vast amount of people manage their dystonia to some degree. Some have it worse than others. I'm lucky that mine, I think, is, you know, fairly mild. And it sort of really hasn't impacted me on what I can do, you know, in my daily life.
[00:06:40] I manage to swim. I do ocean swimming down at Shelley. I stand up paddleboard. I go boogie boarding. You know, I can still do a whole range of things. You probably do a lot more than most of us do anyway. Well, I just think if you've got any sort of chronic condition that it's important to sort of try to be as fit and healthy as you can be. You know, that's my mantra is just to try and be as fit as I can be. All right.
[00:07:10] Tell me about the Dystonia Awareness Month. September is the Dystonia Awareness Month. And tell us about that. So I became involved with the Dystonia Network of Australia, which is a registered charity and the peak body in Australia for people with dystonia. I came across them just through Googling and ended up going to a lunch and then going on the committee. They're run entirely by volunteers.
[00:07:38] And I was on the committee for a few years, but I stepped down at the end of last year and just sort of do a bit of voluntary work with them. So every year in September, everything ramps up with the Dystonia Network. And they conduct video interviews with people who are living with dystonia and working in the dystonia space, written Q&As with people, radio station interviews.
[00:08:04] And for the first time this year, they've arranged to light up a number of icons around Australia in blue on the night of the 18th of September. And I'm really pleased to say that Northern Beaches Council generously agreed for the Manly Town Hall to be lit up blue on the 18th of September. Excellent.
[00:08:29] So if any of your listeners are in Manly on the night of the 18th of September and they see the Manly Town Hall lit up in blue, they'll know it's for dystonia awareness. All right. Now, is this awareness a fundraiser or is it just purely an awareness? There are a couple of fundraisers that happen during awareness month, but the aim of it is not fundraising.
[00:08:50] The aim of it is to make people aware of the existence of dystonia and the existence of the registered charity and how it can help people, their carers, medical professionals and so forth with learning more about dystonia. All right. So where do people go? Is there a website, Instagram, some place that they can go to find out more? Yes, there is.
[00:09:16] So the website is www.dystonia.org.au and dystonia is spelt D-Y-S-T-O-N-I-A. And as of a couple of months ago, the organisation started up an Instagram and Facebook page. So they can be found on Instagram and Facebook as well. All right. Look, it's been really interesting talking to you, Denise. I wasn't aware of dystonia. This is the first I've heard of it.
[00:09:45] So let's get the word out there and help you spread the word about this and how it can be diagnosed. Thank you so much for helping us. We really appreciate it. Not a problem. We've been speaking to Denise Duclos from Dystonia Awareness. All right. I hope I've given you a lot to think about and talk about and debate and maybe disagree with. Don't forget to follow, like and share. Stay safe and I'll catch you next time.