What a combination of embarrassment and discomfort it is!
Eagerly returning home to Cairns following treatment in Brisbane for spasmodic dysphonia and also for cervical dystonia led to a fortnight of rollercoaster feelings, some confusion and that age old need of mine – to embrace humility!
The tell tale sound of high pitched but incredibly soft voice heralded the relief experienced from feeling as though I had an avocado seed stuck down my throat. How wonderful to speak with vocal cords that were not tightly spasming together. Neck and shoulder muscles relieved of spasms. However, that experience soon became overshadowed by the terribly embarrassing ‘drowning’ thing emerging with a vengeance.
You know the thing. There I sat daintily sipping my thickened tea with a friend in the shopping mall when all of a sudden it happened. Cough, cough. Gasp. Splutter, cough and splutter. Gasping for air, eyes red with tears streaming down cheeks and milky tea coming from nose and mouth, it was not a good look.
Dysphagia. Ho-hum! So, it is happening again. Hearing someone close by saying “are you okay?”
Of course I’m not flaming okay! I don’t like admitting it, that’s all! Realizing it is my own breathless sounding voice in reply, “oh, yes thank you. I’m fine. It must have gone down the wrong way.” Yeah, yeah.
Family doctor and the Cairns Base Hospital Speech Pathology Department arranged for a home visit by a speech pathologist. The outcome of this visit is providing me with the support needed at this time. Self pride and an overconfident attitude about managing my dystonia frequently brings me to face reality.
We are not expected to know all the answers. Nor are we expected to face our experiences of dystonia and also of treatment, alone. Feeling very much the little old granny I really am, I soon learned to admit that I need my drinks to look like baby cereal, my food to look like mush and my dry mouth to be swabbed with a soothing solution providing moisture relief. All in all, it surely can only get better from this point in time.
If you need assistance following treatment, please don’t be a dippy head like me. Reach out to the professional team available to you and benefit through their expertise. In addition to professional help, a support group may be of great comfort to you. Support group members are able to reassure us that we are not alone in our experiences, whatever they may be. If you live in a country other than Australia, contact the national dystonia organisation closest to you.
Please, leave a comment or email me (firstname.lastname@example.org) if you would like to. I will get back to you.
Sue Bayliss. Cairns, Australia.