Saturday, April 7, 2007

What is it like, living with dystonia?

Have you ever thought twice about telephoning someone you know who has difficulty speaking? Perhaps you know the feeling of impatience when someone is clumsy and slow? Do you know what to say or do when your loved one’s hands, body, neck or head are twisted into abnormal positions? What is it like for you when out for coffee with someone who suddenly regurgitates their drink through nose and mouth whilst coughing and gasping? How do you look at someone whose eye or eyes slam shut, unable to open voluntarily? Do you understand what it is like to live with dystonia?

So many questions! However, there are also answers. We just need to know how to find them. Some people say how difficult it is to understand a person with spasmodic dysphonia (SD) on the telephone. For those of us with SD, hearing the recorded playback of what our voice was like prior to receiving treatment can send little shivers of embarrassment all over us. No wonder we never liked using the telephone. It is not surprising so many people hesitated contacting us by telephone! TTY phones (Teletypewriters) are available for people who are deaf, hearing impaired and also speech impaired. This method of communication is good both before and after treatment.

Following treatment the situation does not necessarily improve. Botox injections into vocal cord muscle leave many people with very soft voice, sometimes for a few weeks or even months. Quality speech pathology intervention assists people overcoming difficult voice situations. Learning sign language offers communication for people who are deaf and for those with speech and hearing impairment too. Once we start signing others soon learn basic signs, getting the gist of what we are saying.

Although signing may be clumsy or slow, people with cervical dystonia or any form of dystonia may become clumsy or slow in their body movements. Spasming muscles create discomfort and pain as well as embarrassment for the person experiencing this. Dystonia invades almost every aspect of a person’s life.

Learning to live with dystonia may mean life changing adjustments. Going through the diagnostic process for dystonia in all its forms is challenging. Then, settling into a dramatically changed lifestyle is not easy for most people. Living with disfigurement, discomfort, pain, and the potential for social isolation, dystonia sufferers soon expose others to our determination and the creative strength of our soul.

If you or someone you know has dystonia, I hope this article is helpful. Links in the latter paragraphs are there to emphasise the broad range of symptoms associated with dystonia. Please, consider leaving a comment (this can be anonymous) or contact me by email ( if you would like to say what living with dystonia is like for you or your loved one.

Sue Bayliss. Cairns, Australia.


Wendy, Baton Rouge, Louisiana said...

Hi Sue,
I stumbled across your website and wondered if you had ever tried the Botox injections for Spasmodic dysphonia. I am studying to be an Speech Language Pathologist with special interest in Voice Disorders and recently had an opportunity to to observe several Botox injections by Dr. Andrew McWhorter, Otolaryngologist. Most patients complain of breathiness for a few weeks, but lasting effects of completely normal voice for 3-6 months. Appointments are scheduled regularly with some patients receiving periodic injections for over 10 years;all patients with no adverse side effects. It is really a simple procedure that has benefited so many with this disorder. I'm sure you've researched the topic extensively, but I just wanted to offer my personal experience/observation. The people I have observed are extremely pleased with this form of management for SD. Enjoyed reading some of your blog! Back to grad school research for me. . .

Sue Bayliss said...

Hello Wendy, thank you for responding to the information in this article.

Yes, I have been receiving botulinum toxin injections in vocal cords and also in neck/shoulder muscles too for some years now. I travel 1,600 kilometers to my closest treatment centre in Brisbane, Queensland, Australia for my injections then have to face the long trip home to Cairns, Far North Queensland. Sometimes it is not a very good experience!

It is important for non-dystonics and observers to understand the broader experiences resulting from treatment.

There are indeed some rather nasty side effects many people experience. Injections are not always straight forward.

The breathiness for some people lasts much longer than a few weeks and the softness of voice for many people just does not get much louder at all. Also, dysphagia can be a problem after injections. Many people find it lasts only a couple of weeks but I'm afraid I have an underlying dysphagia to begin with and injections make it much worse. I need to have thickened fluids at 'half thick' (honey or custard thickness) at all times. This is constantly monitored by a speech pathologist who home visits me weekly and arranges barium swallow x-rays from time to time. I am unable to manage any hard or firm foods - soft diet only.

My voice remains so soft that I use a transdermal microphone with an amplifier on a waist belt at all times. Microphone picks up voice straight from vocal cords through front of neck (on a neck band). I also do speech therapy exercises daily and concentrate on breathing methods.

I think for me, the worst side effect I have experienced was one treatment in vocal cords that was very painful followed by a bleed. I also experience a very dry mouth following treatment in neck/shoulder muscles for cervical dystonia. I use jels and also a mix of grapeseed oil and peppermint essence to swab my mouth with frequently.

Over all, the relaxation of spasms resulting from the botox treatment gives enough relief to persevere with the treatment for the time being. Fatigue resulting from speech has a huge effect on my day to day life - with or without treatment.

There are times when I wonder whether putting myself through it all is worth it! I do know people who have made the decision not to continue with treatment because of the side effects they have experienced.

It is not always smooth sailing. It is important that people understand this. Especially allied health professionals e.g. speech pathologists.

I wish you well with your studies. Hope to hear from you again.


Lonely_Heart said...

Hi my name is Tiffanie and about a year ago I was diagnosed with SD. I am now 22 yrs old. I did 3 injections with no side effects whatsoever. Yet on the flip side I also didn't notice any difference in my voice. So I stopped getting the injections. My voice is often pretty near impossible to understand. Have you heard of other treatments that might help?

Anonymous said...

Hi Sue,

I'm from the Philippines. I was diagnosed with SD when I was 27. I'm now 52. I did not try botox injections since I could not afford them but I went through a few speech therapy sessions which helped for a while but my voice never really came back so I stopped getting therapy.I have come to accept the fact that there is really no permanent cure for SD so I make do with the current state of my voice which is at its worst when I am tense. Sometimes I just want to shout at the top of my voice and release all the frustration bottled up there. I was a preschool/college teacher and child development worker for the most part of my professional life. At 35, I slowed down on my profession because I wanted to focus on my children and well, I must admit, I lost a great deal of confidence working on a job that required me to speak most of the time. It is so painful when people make fun of me at work and on the phone. So I shifted to freelance writing which isn't really a viable source of income but offers me a good venue for self-expression aside from my inclination to the arts (sketching, music, painting).Since then, I have been financially dependent on my husband and on my daughter who just graduated from college.

Those who struggle with SD know and understand the physical and emotional pain that comes with the disorder. Sometimes I wonder what karmic account I have to pay for having this. Sometimes, too, I wish I had a support group of SD patients here in the Philippines whom I can relate with or start a project with to help others in their struggle to live with it.

Thanks for this article Sue. I hope you could reply somehow even if it has been almost 7 years since this article was published. I wish you well. Take care and God bless.