[eccles]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #815

Louise,
I have no specific swallowing difficulties but as a side effect of botox therapy I do have a little leakage of drinks sloppy foods into my windpipe which causes me to cough sometimes, sometimes a lot.

Of course I have to acknowledge that your dystonia affects many more parts of your body than mine and has obviously had a bigger impact on your life. Since joining the Dystonia Network I have become much more aware of others issues and how problematic treatment is.

I do realise that while dysphonia has had some impacts on me, but with the botox therapy, I have been able to carry on with life as usual, mostly. After 18 years of treatment we have settled on an ideal dose for me. With botox I have been able to talk on the radio and telephone, work, make speeches and even sing in a choir. I will admit that all these things were done better depending where I was in my treatment cycle. Sometimes just after injection my voice was too soft and leading up to injection the dysphonia was taking over.
Will be great to have a few more members introduce themselves too.
Eric

[eccles]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #812

Hello All, I’m Eric and have had Spasmodic Dysphonia for 25 years. Having read your blog Louise highlights a couple of issues. Firstly how modern technology and medical treatment can improve quality of life for sufferers of various dystonias.
My first symptoms onset coincided with me becoming an amateur radio operator (a Ham ) and gradually worsened. It took 6 years to receive a diagnosis in spite of referral to an ENT specialist. It was not until my wife heard of a vocal coach in the Blue Mountains who I had several sessions with who suggested my GP refer me to a particular specialist.
A great relief to know at last what was happening to me. I then commenced botox treatment which helped me enormously.
Later when I developed epilepsy, and commenced taking sodium valproate, my botox dose was reduced greatly.
Well that is a little bit about me.
Eric

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