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 (s.j.bayliss@bigpond.com.au) if you would like to say what living with dystonia is like for you or your loved one.

Sue Bayliss. Cairns, Australia.