Thursday, January 4, 2007

Good days, bad days and somewhere between!

Spasmodic Dysphonia sufferers basically belong within one of two categories. Firstly, people with this neurological disease remaining undiagnosed, misdiagnosed and or untreated. Secondly, people who have a diagnosis may or may not be receiving treatment. Either way, the common variable between the categories and also between the sub groups within each category is the status of day to day experiences of life. All these people experience good days, bad days and some days that fall somewhere between good and bad experiences. Firstly, what is good communication like for someone with Spasmodic Dysphonia? Secondly, how do people deal with poor communication on bad days and thirdly, what happens on the days that are somewhere between good and bad? I can only speak for myself.

Firstly, good days communication makes me feel valued and understood. Good reciprocal voice communication that is face to face or on the telephone means I participate fully in family life, community life and in any area of lifestyle that I choose on that particular day. The wonderful thing about this is Botox treatment supported by daily speech therapy exercises enables me to prolong the ‘good days’ cycle of living with Spasmodic Dysphonia. This part of the cycle does not start immediately following treatment but is usually at best after about four weeks, remaining until spasms start again approximately 10 to 12 weeks following Botox clinic treatment. I keep a voice diary from the day of Botox clinic treatment right through until my next treatment day. This is indeed the time of the cycle when I feel on top of the world whilst a part of me is dreading the onset of bad days!

Secondly, bad days are for me a time of intense frustration, embarrassment and social isolation. Although I attempt to speak, the sounds do not always start when I initiate speech. Frequently, my mouth opens and the mental function of word processing and expression is go, go and go but the physical ability to form the sound just does not get past the opening of my mouth and the tightness of my throat. Then, out comes a sound that sounds strained, course, and static. The latter being gaps in the sound of the words. There is a distinct drawl or slowness in the forming of the word sounds. Answering the telephone is difficult at best and totally impossible at worst. Often, I have no option but to hang up and hope the person on the call understands. Technology is such a wonder! During this phase of my speech cycle I frequently use a TTY telephone. Although these phones were initially used by deaf people, they are also used by people with speech disabilities. Approximately two and a half months after Botox clinic treatment this part of the cycle is the most difficult for me to manage. During this time I wear a little tag on a neck band. This tag resulted from a suggestion by my speech pathologist and says, “I have a speech disability. I know what I want to say. Please be patient with me. Thank you.” Wonders of wonders! People are so helpful, patient and kind when they are aware there is a difficulty that simply requires a little patience and concentration. This little tag also helps considerably during the stages that are somewhere between the good days and the bad days.

Thirdly, those days that seem to be a no man’s land between the good and the bad are days that exhaust me! Immediately following Botox clinic treatment my voice is very comfortable and somewhat effortless but is what is referred to as breathy. When I open my mouth to speak it seems that air just gushes out. Relaxed vocal cord muscles do indeed allow the unrestricted ‘gush’ of breath or air. The breathiness lessens over a couple of weeks. However, the softness of voice remains for a good four weeks or so. During this time I find myself repeating my words two or sometimes three times before people who are not familiar with my speech understand or hear what I am saying. Although communication is hampered by the soft pitch and breathiness of sound, it is background noise that makes spoken communication most difficult. Speech during this cycle phase is so easy after the difficulty of attempting speech through spasming vocal cords that it makes Botox Clinic treatment very worthwhile.

Perhaps the one most useful skill I have learned as a tool to cope with day to day communication is the use of Auslan, Australian Sign Language. Auslan provides a whole range of possibilities and experiences that I am eager to share in a future article. It is my hope that others may experience a sense of connection and identification with me through the experiences shared within this article. Go on, go ahead and leave a comment. I would love to hear from you.

Sue Bayliss.

2 comments:

Megan Bayliss said...

I think some articles on Auslan would be good.

I'll be coming down this afternoon, 3.15ish, to help you link the Spasmodic Dysphonia sites to your blog.

Sue Bayliss said...

Thank you Megan.