We are people who understand life with a voice disorder, because we either live with one, or have close experience of supporting someone who does.
Why the Network?
The Australian Dysphonia Network Inc, was established in 2016 to support people whose lives are impacted by a voice disorder because.
- Voice disorders may affect relationships.
- Voice disorders may change the way we relate to each other.
- Voice disorders may change our ability to participate in broader social circles.
- Voice disorders also have the potential to impact on careers.
Yet, they are poorly diagnosed, and even more poorly understood by the general population.
This completely independent site is created by people affected by dysphonia, who want to create a multidisciplinary resource that can help change that, and make life a little easier for the vocally challenged here in Australia.
We aim to:
Support: individuals, family and close friends who are affected; to share experiences and support each other.
Educate: the general population, GPs and other health practitioners.
Advocate: for voice disorders to be considered in terms of occupational risks, disability or sickness benefits; and for noise reduction in public spaces, restaurants and cafes in order to reduce voice strain.
Lobby for, and Fund Research: there has been very little local research into the causes, management , or the psycho-social impact of voice disorders. ADN wants to address this
So, whether you live with one yourself… are a friend or family member of someone who does… or provide treatment and care people who experience living with a voice disorder, we hope to provide an informative and supportive place for you.
No matter what the ‘label’ or the underlying cause, life with dysphonia is difficult. We welcome contact from anyone who is affected, because regardless of the medical diagnosis, the impacts on daily life will be very similar.
Please have a poke around and see what we have been up to so far, but bear with us as we continue to build the site and get things running smoothly.
If you have any suggestions , or just want to say ‘Hi’, please drop us a line using the contact form. …you see, we don’t have a phone (because the telephone is the enemy of most people with a voice disorder), … but you can find us on Facebook and Instagram.
9 thoughts on “About ‘US’”
I have just found your network whilst looking to see if there are any singing groups for people with spasmodic dysphonia. There are singing groups for stroke victims but perhaps it is impossible for spasmodic Botox affected voices? Sometimes I feel the loss of singing almost more than the loss of a good talking voice. I have had Spasmodic dysphonia for nearly twenty years now but Botox does help. I am at present really feeling the need for contact with others who have this bizarre condition. Sue Olsen (Blackheath)
Hi Sue, thanks for stopping by and dropping us a line.
I love the idea of a singing group for the voice disordered … perhaps we could call it “The Dysphonics” 🙂
The truth is, as you know, botox does make singing rather difficult, especially in the early ‘breathy weeks’ ….While the alternative (singing with spasms) is not particularly melodious. BUT Singing is about so much more than sounding good… so maybe it is something to explore.
Personally I joined a choir when I was first diagnosed … more out of determination than anything, it FELT great. But after about 4 years it had become tricky, and very hard to keep up the social side of the large and noisy group.
You could certainly put out some feelers on our public or private facebook pages, to gauge interest (?)
Hello Sue- I have recently been diagnosed with SD after 7 years of not knowing what was wrong with my voice. I live in Taree, but my daughter is in Blue Mountains, and I often spend time there. Would you like to meet for a cuppa next time I am there? Sorry, can t help you with singing- never could sing, certainly can t now 😦 !!
Hi, Louise, one of my sisters in NZ emailed an article out of a NZ magazine which had your story & this website. I live in Melbourne & about 9 years ago I was training up to do a half marathon when over a period of 3 – 4 weeks I suddenly became very breathless. I was lucky that my GP understood that I had something strange wrong & after 33 trips to 3 different hospitals for numerous test I was told I have Vocal Cord Dysfunction. I became a part of the botox experiment at Monash Medical Centre and have had 7 injections, 1 helped for a short time, 5 did nothing and 2 made me a lot worse, the last one left me with no voice at all for 3 months and after 9 months I am still not right. I am not having anymore. I have also for the last 6 months been seeing a speech pathologist and neurologist, they gave up a couple of weeks ago as they could not help me. I had already decided a long time ago that this was something that I was just going to have to get use to & live with. It is not going to beat me & I still do as much exercise I can even though it is not much.
It is so great to see the work you are doing, keep it up as there are a lot of people with this condition who have just given up, I have met some.
I will be contacting my surgeons to let them know of this website.
All the best,
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Thanks for your lovely feedback Gordon… (and thanks to you Sister for reaching out from NZ).
I’m sorry to read of your own frustrations. Looking for solutions can really ‘do your head in’ sometimes…. it seems that only consistency with voice disorders…is their variation and inconsistency.
We are proud to be building the network and bringing together those professionals who are passionate about understanding more, and finding some answers …at the same time as connecting with, and supporting those of us who are affected and as you say ‘giving up’.
I appreciate you sharing our progress and the website amongst your own networks.
Warm regards Louise
*So* pleased to find this site. I’m an Aussie currently living in the UK. About 9 years ago I noticed my voice would occasionally ‘clam shut’ at inopportune times. Think strangled/strained. Often when speaking in public, on the phone, or even ordering a Big Mac. It’s got worse over time. I’ve since ‘self-diagnosed’ as spasmodic dysphonia AD type. Stress makes it worse, but sometimes my daughter points it out at family mealtimes, so I don’t think it’s psychogenic. On rare occasions, when it’s really bad, I basically cannot talk for 5-10 minutes. I’ve lived with it without getting a formal investigation, partly because I’m embarrassed about it, and partly because it comes and goes. I developed some coping mechanisms a while back, like clenching my abdomen and forcing air through. That soon stopped working. Some words seem harder to say than others. In real-time, I try replacing words I have trouble with, eg: ‘correct’ instead of ‘yes’, or ‘oh’ instead of ‘zero’.
The speech gets swallowed on the vowels, I guess. I work in a pressured sales environment and have to present to 200+ people at times, and I get anxiety not because of the audience, but because I don’t know if my voice is going to work or not. I know many people don’t, but I used to love public speaking. It sucks. I often use the excuse that I have a cold when people ask about my voice, particularly on the telephone.
I found this informative section on http://www.dysphonia.org/symptoms.php
People with AdSD will have more difficulty with sentences with voiced sound such as these:
Albert eats eggs every Easter
We mow our lawn all year long
Early one morning a man and a woman were ambling along a one mile lane
Whereas people with AbSD will find these sentences with voiceless sounds more challenging:
Harry hit the hammer hard
She sells seashells by the seashore
The puppy bit the tape
That soon clarified things: I can say the Ab sentences absolutely fine. The Ad sentences (particularly the ‘Early’ sentence) shocked me. I can’t say it very well at all. It almost hurts to voice it.
So – I’m going to see my GP soon (I hope!) I will raise this but expect, like a lot of people, to get some difficult conversations, and a long journey before I’m taken seriously. Any tips?
Thank you for your message Sean, and for your positive response to the website. Your story is very very familiar, and in fact bears many similarities to my own personal experience 12 years ago (complete with the love of public speaking)
We have a public facebook page which you are welcome to follow if you have not already, … and also a closed discussion group, which, while technically limited to Australian and NewZealanders, may interest you as an Aussie ex-pat. Feel free to contact via the web form on this site for details. Meanwhile we would encourage you to seek out a diagnosis, and suggest you should see your GP and request a referral to an ENT who specialises in Laryngology. Good Luck, and look forward to hearing from you when you are ready.
Hi Louise, I am a 74 yr old woman who was diagnosed with Spastic Dysphonia ( thats what it was called in those days) in 1984. I have lived with this for nearly half my life. It is the most frustrating, sometimes painful and embarrassing condition. Though I’ve been told my voice sounds sexy!! Or, ” have you got the flu?” I have to explain in hospitals that I haven’t got the flu or something worse, it’s a vocal chord problem!! Back then, I was lucky to go to a friend who was a speech therapist who had been working in Mayo Clinic overseas. She diagnosed it, not a doctor. Then I went to numerous doctors, neurologists, psychiatrists, hypnotic therapists etc etc. Have had endoscopys, NOTHING. I refused a severing of the left laryngeal nerve, laser on my vocal chords, and botox!!! Which apparently still isn’t successful. For years I have wanted to start something like this website but am too shy and have had five kids to raise. I would dearly love to be able to speak clearly and sing again, though I did get up twice when I wrote a book and make a speech which I was very proud of. I am now also wearing hearing aids so as well as speech defect , it’s a hell of a bummer. However, I have learned to live with it. I am sorry I am not on Facebook and really don’t want to do that, so can you contact me by email?? PLEASE? Anybody who has this condition I’d be pleased to hear from on my email address.
I love the sound of your organisation. My heart goes out to all you guys out there with this affliction, it affects absolutely every aspect of your daily life. It’s tough!!! And poor Jenny Morris I so feel for her being a singer and suddenly not being able to sing!
It affects you when you go out to dinner and in a big crowd……horrible! People tend to gravitate away from you once they get to know they can’t understand you. It’s nothing like having cancer and other dreadful diseases, but it does affect every aspect of your life. Kind regards to all of you out there who have this affliction. Sandy Whittaker
Thanks for taking the time to say Hi, Sandy, your story will be quite familiar to many.
The frustration, embarrassment, being treated like you are sick and possibly infectious…… and then the constant chasing for answers. Fortunately things have improved a little since the 80’s, but still the length of time it takes for an accurate diagnosis is excessive, with many GPs simply unaware what to do when someone presents with voice changes, other than prescribe antibiotics …and Laryngology and Voice Therapists few and far between.
We hope our awareness raising efforts and research projects will contribute to changing this a little. There are certainly some wonderful, kind and dedicated professionals out there who are keen to make life better for us.
Yes, absolutely we can stay in touch by email 🙂 Louise