telling it how it is

FB_IMG_1523671352215 (1)                                                                                    Carmel

I always had a childlike sounding voice and the energy to suit, so I would often get mistaken for one of my children when answering the phone. It would make me giggle, but that’s not the case anymore. Now at times I sound and feel like a much older woman than my 54 years.

I have had Spasmodic Dysphonia (Adductor) for 6 years well, that’s how long the symptoms have been evident.  In the past I was always prone to getting laryngitis but with no other flu symptoms; and medication would eventually correct the issue.

I am an Administration Officer in a high profile department and was the ‘go-to’ person. I did a lot of talking, and at times I was in high pressure situations; so even with laryngitis I would still continue to talk.  Then about six years ago I started noticing my voice changing.  The recording on my work message bank was no longer as clear, my voice sounded crackly and shaky like I was nervous. The changes in my voice were starting to effect how I could talk to people.

I mentioned this a few times to my GP and then it got to the point over a period of 12 months that I said that I had real concerns that something was wrong. My GP sent me to an ENT- in 2013. He did the usual investigations and diagnosed me with silent reflux with possible muscle tension dysphonia and put me on medication for 6 months trial. Despite totally changing my eating habits, taking the medication and having some speech therapy sessions to correct my voice, there was still no improvement and the speech sessions actually made me feel worse not better. I saw another local ENT and he just virtually said give up your job- NO, I said there had to be another explanation.

I tried acupuncture but things still did not change. My GP sent me to a neurologist to check me for Myasthenia Gravis  – because by this time I was starting to feel worn out all the time and tired. All the tests came back clear, by then it was December 2014 and my voice quality was getting worse. My husband and I reverted to our own devices and we searched the web and youtube for voice disorders and muscle tension dysphonia. We found samples of voices that sounded exactly like mine  – they were examples of Spasmodic Dysphonia.  We then found a private ENT in Brisbane that specialised in voice, and my GP referred me to see him.  On my first visit in Jan 2015 I saw his speech therapist who put me through a few vocal tests. They felt that with botox injections and speech therapy I would get some relief and improvement. My vocal chords were hitting too hard together  and the botox should relax all the muscles. As we all know, with Botox it is trial and error to get the dose right and to get the right procedure. But if it would help let’s do it…

The only way I could get any positive results was for the ENT to inject my vocal chords directly down my throat- giving me the injections through my neck just wasn’t effective. By May 2016 the speech therapist said she could no longer  help me and she really felt I had Laryngeal Dystonia (the other name for Spasmodic Dysphonia) however she was not in a position to confirm the diagnosis. Despite my ENT being really great, he would always tip-toe around the actual diagnosis- “muscle tension bordering on Spasmodic Dysphonia”, he would say. So we went for a second opinion in Sydney in July 2017. The ENT there was great, diagnosed Spasmodic Dysphonia Adductor within the first 5 minutes of being in his clinic- FINALLY we had a confirmed diagnosis and the correct name for it.

Unfortunately his method of administering the botox was not suitable for me and distance was against me returning to him for future treatment, but he had given us the answers we were looking for.  He did mention that I should go back to the neurologist for further testing- we have put that off for 9 months as we were so sick of doctors, but now have noticed that my fatigue levels still have not changed, I have shakiness in my hands at times and now starting to think we need to have further tests done.

Even though we go on day to day doing things and trying to be normal- losing your voice does make you feel that you have lost a part of yourself; a part of your identity. The roller coaster ride of botox also has it trials and days when you feel “is it all worth it”. I feel like the little mouse on the treadmill going round and round. Botox injections, breathiness for 2-4 weeks improved voice for4-6 weeks and then it starts all over again, back for more injections. I have also tried natural remedies, but when the botox runs out it’s like turning off the tap and the tightness starts all over again. I remind myself every day that it’s not terminal and that any sort of voice is better than no voice. If I had no voice I couldn’t talk with my family- my husband, daughters and granddaughters – so it could be worse.

The last 6 years have been a journey of a lot of ups and downs- Spasmodic Dysphonia can be extremely hard to deal with at times and it does affect all aspects of life, both personally and professionally, but life goes on and adjustments need to be made. Not easy but they have to be made.  A chronic pain Psychologist helped me immensely by training me to do things differently now that I am different and while Botox gives me some relief and provides me with a better quality voice- it is not my voice, not the voice I once had.

Debbie

avatarI think my voice story is a little bit different to most.  It happened so suddenly, I just woke up one day and it was gone. I had Zip…Zilch…NOTHING!

Throughout that day I managed to squeak out a few sounds, but nothing at all like my usual sounding voice. I didn’t feel sick…I didn’t have a sore throat, all I could figure was that I must have overdone it the day before, so I thought I would give it a few days before heading to my GP.

A week went by before getting to my Dr, and in that time I paid close attention to every sound I made. By then I had a voice but it wasn’t mine…I sounded hoarse and I felt like I had something stuck in my throat.

The first thing she asked me was if I had any big changes in my routine… you know, things like changed diet, weight gain, extra stress at work; I was embarrassed to say yes to almost everything she suggested. I had been stressed and eating poorly since my marriage had ended, and had gained 25kg (that’s why there is no photo here) BUT I wondered what that could have to do with my voice.

My lovely Dr explained that she thought I had an acute episode of reflux laryngitis. Apparently it happens because some of the acid from the stomach comes up into the throat (especially when you lay down), and it can trickle into the vocal cords, irritating them and making them swell.  The treatment, she told me was to try and lose some weight, to start eating a nutritious diet, and to start taking something to help reduce the acid.

That was about 8 months ago, my voice is mostly back although I don’t think it sounds quite like me… its a bit rough and I become hoarse easily. I’ve managed to lose 7kg, and I am on medication for the acid, so I think I’m on track but my Dr warned that this can be a long-term chronic problem, so I need to work hard at keeping my stress levels and diet under control…. forever.

I sometimes feel a bit silly, or embarrassed when people ask what’s wrong with my voice. I have never heard of anything like this before and it seems like something I SHOULD be able to control… I just wish it was that easy.  I’ve learned the frustrations of not being heard and of people thinking I’m a walking bag of germs and that they will ‘catch’ what I have.  It can be a lonely world when you struggle to communicate.

 

Justine

Justine

I am a born chatterbox and if my mouth moved as quickly as my brain spins I would be very dangerous. I am a wife, mother to three teenagers…. I love toddlers.

As I am slow to process ideas, it took me a while to find the career I would fall in love with, but after hanging with the suits in the city, I found that I had more to learn from the little people of the world. So I studied for my Diploma in Early Childhood and worked with our tiniest citizens for 13 years. I then completed my Bachelor of Early Childhood in 2009 and was  blessed to work citizens who were just a little taller. I believe teaching is a gift and I miss it every day.

In 2014 I became giddy when I was reading stories to children, anyone who is getting to know me will know I can be just a little animated…. My voice grew tired and by the end of the week it was exhausting to speak . The 14th of July 2014 was the last time I heard my normal voice in conversation.

I can scream and laugh like the best of them but I am quite sure if I did that in the middle of the street they would lock me away.

To me, losing your voice  is like losing a little piece of your identity and when you have so much to say (like me). It’s as if you don’t get to live your life as who you really are.

I have been diagnosed with mixed Spasmodic Dysphonia, apparently I am a little difficult and unusual – that’s my life story anyway!

I am very, very aware that I am blessed to have this as my only issue. There are many other more cruel hands I could have been dealt.

I am blessed with a beautiful group of friends and family who lift me every day. My specialist team are also held in my highest regard and I appreciate so much that they are always looking for new ways to fix my ‘tricky’ (the other common descriptor) case.

My speech therapist deserves a medal as she listens to my woes so kindly even though it is probably like reading the Women’s Day.

So that is, difficult, tricky and unusual me. Normal on the outside and just a little broken on the inside.

Fiona

 

Fiona

I was diagnosed with SD (adductor) a couple of days after my 33rd birthday, and have now been living with it for 18 years.

I first noticed that when I was reading to my children, my voice kept dropping out. As can be the way when your children are young, one tends to accumulate brochures to do with different stages of development and one in particular mentioned seeking advice if there are any signs of bits of speech being lost. I thought, hmmm, that happens to me, I might have it checked out.

I went to see my GP who said “Maybe you’ve developed some bad habits with your voice, I’ll send you off to see XXX who is a great speech pathologist and deals with lots of actors and singers here in Adelaide. She’ll set you straight”. By the way, I am neither an actor nor singer! She gave me the diagnosis quickly, and I mean very quickly, within my initial appointment. I was so lucky to not be told it was psychological and given the run-around. From there, I was sent off to see a neurologist to check that it wasn’t due to early signs of Parkinsons or MS, (a scary thought when your children are 4 and 2!). Thankfully, he quickly threw me out of his office.

I now have Botox after resisting it for many years until it became progressively difficult to converse on a face to face basis… and, as for the phone? Well, forget that! The results are mixed. I am always hopeful of something better (maybe a cure?!) in my lifetime. I see raising awareness of SD as important and I think maybe there are more people out in the community with it than is thought. It has taken me many years of grappling with SD to finally accept it (of sorts), with the thinking that yes, my voice and its issues are part of me, but they are only a PART of me. It does not define me..

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Brenda

Mine is a slightly different story ….. a voice journey which ended up with a particularly unusual and unexpected diagnosis.

In August 2009 I developed flu like symptoms, laryngitis, chronic cough and shortness of breath. I was tired and exhausted while doing anything at all. So, of course I went to doctor who prescribed antibiotics and requested some chest X-Rays then he gave me a referral to see a respiratory specialist. After a second GP opinion I was told I had adult asthma, and given medicine to help with the breathing problems while I was waiting to see the specialist.

I work as an Office Manager for a small not-for-profit org, so I was able to have a few weeks off work then ‘voice-rest’ in the office, but it was hard given I am on reception duties. When my “laryngitis” cleared up  I noticed that my voice was weak and breathy in the morning and that just trying to get ready for work would make me feel exhausted. The minute I tried to do anything I would lose my voice…, I had also become very sensitive to the sun, heat, smells and spicy foods.

By then, I had seen, two ENT’s, respiratory doctors, had blood tests and scans as well as allergy testing, but my Dr started to think I had a neurological condition so sent me  off  to see a neurologist ….and  have more test. The process of trying to find out what was going on was very frustrating and emotional, with some doctors suggesting that it was all in my head. (I am sure that many of you can relate to that). On the flip side I also had doctors that were doing their best to help me, and I was surrounded by supportive family, friends and work colleagues. I remember recording my voice and doing video’s so that I could prove to them that something was really wrong with me. I also made two doctors come for a walk with me to see how this would affect not only my voice, but my body …and that just going for a walk would make me exhausted.

It took about 10mths before I got to see a specialist in the field of “Mysthenia Gravis”. He wasn’t convinced that this was what I had as all of my test were negative, but there are patients that are called sero negative, so it was possible. In the meantime, I started the next phase of my voice journey when I was sent to see a Voice Doctor and another neurologist  to see if maybe I had Spasmodic Dysphonia.

I had fibre-optic examination which revealed that I wasn’t able to maintain closure of my vocal cords and was told I had  “bilateral vocal fold paresis” and an EMG confirmed this. We decided that I would have vocal cord implants on both sides to bring the folds close together which would  help with their fatigue and also with me maintaining longer speech.

In August 2010 I had the implants put in and although this helped I would still  lose my voice after using it for any length of time, and I  still had all of my other symptoms so it  was a time of mixed emotions. I started to see a speech therapist after my operation at Westmead and also at St. Vincent’s hospital. Both of these professionals were amazing and very helpful even though they could see that something was still not right.

In May 2011 I had some Restylane injections into my vocal cords even though I had my implants. This was done in the hope that it would bring the vocal folds a bit closer even if it was short term. The plan was that if this worked we may have considered a revision operation to increase the size of one of the implants.

At one of my speech therapy appointment I was given a very large voice amplifier to use. This was a big a shock, but given that my voice got weaker  and weaker the more I used it,  and I had to use a lot of effort to produce sound, we thought it might be helpful. I used the amplifier at work for a while and very quickly looked for a smaller version. I found the ‘Spokeman’ (cost was approximately $250 back in 2011). I used this for about 18months mostly at work and sometimes with family and friends. Of course this came with its own limitations but overall it was a life saver for me.

In June of 2012 I convinced my voice doctor to write a letter to my neurologist to consider putting me on a trial of Mestinon, a drug used for Mysthenia Gravis as it was clear that this is what I had, because all of my symptoms pointed to this.

When I started on the medication I had a voice within 30mins of taking one tablet!!! This was amazing and I was so excited (so were my family, friends and work colleagues), this was the beginning of becoming ‘me’ again and getting back to the things I couldn’t do before. This medication not only helped with my voice, but  it has helped with all of the other symptoms I have associated with MG. I am currently taking 4 tablets 3 times a day, and I am working full time and leading a busy life with family and friends.

I still lose my voice and have other symptoms of MG if I do too much,  but I know that I will recover.

Throughout my journey I have met some amazing professionals and people with voice conditions who are inspiring and have become very close friends as well as supporting me though this sometimes depressing and debilitating condition. ..Si I have become even more appreciative of life, and what I have.

 

birthday girl

Lou

Like so many others, MY story began as a mysterious hiccup in an otherwise fairly unremarkable period of my life….. That was eleven years ago.

Born to talk, for many years I had been the public face of my workplace in Health Promotion. The conference facilitator, the presenter and the media spokesperson on all things sex, drugs…. interesting and fun.

BUT that all changed.

At first I noticed that my voice was dropping out, kind of like a bad mobile phone signal really. Bits were missing, and it felt like my voice was tripping over itself in otherwise easy and robust conversations. Of course I imagined that it was all in my head until people started to complain about the poor reception (when I was on a landline!! mmm there’s a clue)

After a quick  trip to my favourite ENT, who ruled out anything simple like nodules… it was off to the speechie to look for bad habits. (Surely that would be it, and I would be back on track…I wished).  But, after a few months of correcting the minor technical problems, came the crunch, “you have spasmodic dysphonia”.

GREAT I thought… a name! Let’s just fix it and get on with life. But,  we all know, nothing is ever simple.

I resisted botox for about a year, trying all things alternate instead. You  know the stuff, hypnotherapy, nutritional medicine, acupuncture, massage, mindfulness, kinesiology,….. bla bla bla  on and on… I  FELT fantastic, but my voice remained an issue.

After about a year, I finally succumbed to botox and found my voice. A slightly different voice, but smooth, sultry and without spasms…..I was in heaven.  Initially.

Since then…the results have been mixed. It’s been a rollercoaster while my brain has adapted, adapted and adapted again…. (almost saying… ‘bring it on… I will NOT be silenced’) . We’ve stopped the botox, pumped up the vocal folds, restarted the botox, retrained my brain… and even been to vocal bootcamp.

My diagnosis has changed…. from ADSD to ABSD…  to “is this really SD?” and then on to to mixed (AB/ADSD) …… to the point that I wonder ‘what’s in a name?’ (Funny really, after having been so keen to have one back at the beginning.)

I’ve met good people, GREAT people and a handful of shockers along the way …. but in this changing story, one thing remains consistent … Life with a voice disorder challenges you every single day. There is nothing simple or straightforward, but if you surround yourself with the GREAT people, and ditch the ‘shockers’  it will be ok.

 

man-bio

 

Adrian

I was 42 when it all started, and like lots of stories I have read, it came on suddenly.  That was 8 years ago.

I remember that I would open my mouth and then have trouble making the words come out. Not like I had lost them, just more like they were stuck or chopped off.  I had to force to make the sound, and  then when it did work it sounded strange, a bit strangled and not like me at all.   I sounded nervous or anxious when I wasn’t, and people started to wonder what was going on. There I was at the top of my game and yet suddenly I felt like I had lost my edge, people in the office struggled to hear or understand me and I noticed that they were starting to ‘wonder’ what was going on.

Over the next few months, everyone had their own theory. I knew they all cared, but no-one really  ‘got-it’ . They said stuff like ‘relax, you’re just too stressed’….’you  just need to loosen up’… BUT I wasn’t stressed (except about my voice).

It drove me completely nuts, so I saw my GP, but was then  given a  prescription for a gargle and some antibiotics, (weird I thought , because my throat wasn’t at all sore).  Obviously that didn’t work … so after 3 more visits and increasing frustration he referred me to a speech therapist.  At first she was great, but after a few weeks she said I didn’t really ‘fit the profile’ of the normal voice disorders that she sees, and suggested I see a psychologist.   I have no problem with counselling …. but I couldn’t believe this was in my mind, and I felt  a little insulted; it was as though it was MY fault that her treatments didn’t work.  It felt like she was giving up on me because she just didn’t know what else to do.

On a positive note  (at my insistence) she referred me to the voice clinic at the nearby teaching hospital. It took a couple of months to get the appointment, but it was so worth it.  I was diagnosed with a mild adductor spasmodic dysphonia, but it seems my bigger issue was that I was trying way too hard to compensate and ended up with muscle tension dysphonia on top of it. I guess it all makes sense really because I just wanted to be heard and taken seriously.

These days I have botox injections about 4 times a year, and I’ve learned some tricks with managing the muscle tension…like forcing a yawn or faking a laugh when I feel super tight. I’ve also found a great massage therapist  who specialises in laryngeal treatments so I try hard to see her regularly.

I don’t talk about it much … I like to stay fairly private, but it’s good to find sites like this where I can read other people’s stories and feel a bit less weird and alone.

 

Mark

 

Mark

As a child, school was not fun!  I was bullied a lot. The one thing I was good at was singing! I was able to use my talent as a way to build self-esteem.  I started working as a professional entertainer on children’s television at age 9.

After leaving school , I managed to establish a successful career which enabled me to travel worldwide, meet and work with many of my heroes and enjoy considerable success.

My life and, therefore my identity, has been closely linked with my profession …and my voice!

In 2014 I started to notice some changes to my vocal ability.  Having spent many years being used to the professional necessity to ‘manipulate’ my voice and the need to use it in less than’ ideal’ conditions (in other words, I had probably abused it a bit!) I recognised that this situation did not seem normal.  And it didn’t go away…if anything…it got worse!

I had no idea what was going on.

I consulted “Dr. Google” with the question “why is my voice breaking up” and discovered a condition called Spasmodic Dysphonia.  Is this what I had?  The more I read …  the more example recordings I heard … the more I felt convinced this was what was happening to me.

I consulted a friend who is a respected  professional ‘Vocal Coach’.  She suggested that to her ‘ear’ I did not have this condition – but – directed me to appropriate professionals who were aware of this condition and knew what they were talking about. (I have learnt since that, sadly, many don’t – so I was lucky!)

Despite being in the best of professional hands it still took 12 months to be officially diagnosed with Adductor Spasmodic Dysphonia (ADSD).  During those 12 months I was treated by Speech Pathologists, a Psychotherapist, a Psychiatrist, an ENT specialist and a Neurologist.  It was a long journey – and not fun.  It was made worse because during that period my voice failed to a point where I was unable to perform (i.e. work) anymore.  I lost my career.  At 47 years of age I was forced to go to Centrelink for the first time in my life and apply for unemployment benefits.  I felt SO embarrassed and humiliated!

My medical team suggested I apply for the disability pension (DSP).  I did ; twice!  I was declined both times as (apparently) I did not meet the necessary criteria.

My saving grace was meeting up with fellow sufferers of SD and other associated voice conditions.  The personal support, understanding and friendship that was extended to me helped me beyond measure.   To be able to share with others who really understood what it felt like was insurmountable.

I am now in my second round of ‘Botox’ treatment for SD.  I have managed to (temporarily) go back to work as a performer; this is a huge step for me, as only 8 months ago I thought I would never perform again.  I have regained a sense of self esteem and the hope that I can not only ‘work’ but that there is still a reason to ‘live’!

Dysphonia can be extremely hard to deal with. It can affect every aspect of your life, both personally and professionally, no matter what sort of ‘job’ you do!  When the ability to communicate effectively is impaired….life can be really tough!

Thank you ADN for being our ‘voice’ and providing a conduit via which we all can connect and support one another in a journey that many people just don’t understand!

 

Steve      pexels-photo-769648

You guessed it – that’s not really me….. well it could be, but the truth is that it doesn’t matter. I’m a ’40 something’  family man who feels like a shadow of himself. My days of being ‘the life of the party’ … the loudmouth with an opinion on everything are now just a memory .  I prefer a quiet night in, with the TV on, and the conversation limited… in fact I think I think I prefer the conversations in my head… they are SO much easier.

I developed a voice problem about 8 years ago. For almost a year I tripped back and forth to my GP saying something was ‘just not right’. I’m sure she thought it was in my head, and maybe I believed that too for a while, after all I was in a stressful job and really not enjoying it; I had a young family  and all the stresses that go with that … BUT  I loved life, loved my wife and loved my kids so something didn’t QUITE add up.

After getting no help from my GP (other than the suggestion of ‘taking a holiday’ ) I took a few sessions with a speech therapist who suggested that I see a voice specialist (I think they called him a laryngologist). I had to read a whole lot of sentences and he recorded everything…. THEN he put a scope down my throat to look at my voice box… The rest, as they say … is history.

 

2 thoughts on “telling it how it is

  1. Great, great stories!! We all have so much in common.
    I’m promoting my blog in the UK

    Voiceathlete.co.uk

    Like

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