tag:blogger.com,1999:blog-7190291330522537787.post3948993102008322680..comments2023-08-15T18:52:50.285+10:00Comments on Spasmodic Dysphonia: Hmm! Are you sure? I’ve heard this before!Sue Baylisshttp://www.blogger.com/profile/12681330289537484939noreply@blogger.comBlogger5125tag:blogger.com,1999:blog-7190291330522537787.post-74697618172268296712007-01-05T11:41:00.000+10:002007-01-05T11:41:00.000+10:00Maria
thanks for responding to Mum's article.
I ho...Maria<br />thanks for responding to Mum's article.<br />I hope that all sufferers of SD can have a loud voice by sharing information and chatting together without having to experience the pain and distress of using speech.Megan Baylisshttps://www.blogger.com/profile/04549696888232735259noreply@blogger.comtag:blogger.com,1999:blog-7190291330522537787.post-12907528016579767612007-01-04T21:53:00.000+10:002007-01-04T21:53:00.000+10:00Maria. Thank you so very much.
I deeply appreci...Maria. Thank you so very much. <br /><br />I deeply appreciate your words of comfort re the death of my husband. I miss him terribly. <br /><br />I read, reread and then read your words again! My oh my! How I know exactly what you describe. One teacher I heard about during one of my visits to Brisbane for treatment evidently used sign language with her class. Children soon picked it up! You may need a voice amplifier. My high voice sometimes lasts about 3 weeks. Good speech therapy helps me lower that high sound. Softness of voice is a real problem but is better than having the spasms and the shakes (me too, hands and head). My email address is s.j.bayliss@bigpond.com.au - I would like to keep in touch with you.<br /><br />Megan is my second daughter, I just love her blogs (& G'son Home School too. Doesn't want his name used. Chose to be called Boy. Works well) Then 3 sons. Darren, youngest son is my carer and does a very good job.<br /><br />Will try to do a blog a day. Am organising a local support group here in Cairns for people with SD and/or any other form of dystonia. Will write an article as we get it up and going - SOON.<br /><br />Hope all goes well for your return to teaching. We will be thinking of you. Sue B.Sue Baylisshttps://www.blogger.com/profile/12681330289537484939noreply@blogger.comtag:blogger.com,1999:blog-7190291330522537787.post-19250241190089626942007-01-04T14:21:00.000+10:002007-01-04T14:21:00.000+10:00Dear Sue,
I'm so sorry about the death of your hu...Dear Sue,<br /> I'm so sorry about the death of your husband. I hope this new year brings you comfort and reassurance that he will be with you always.<br /><br /> I, too, have spasmodic dysphonia. It's been three weeks since my first botox injection. My husband travelled with me from Boise, Idaho, where we live, to Seattle which was the closest place for me to receive the procedure. For years, I've just been coping with the whole "shaky voice" thing, telling students I teach that it's just the way I talk, that I'm not crying. Whenever I needed to make an important phone call, or one that I was stressed about, I'd have a glass of wine first, which usually helped. <br /><br /> But after at least 10 years with SD, I decided to try the Botox. Psychologically, I was less inclined to try new things because of the burden of having to deal with the look of alarm or concern on someone's face when I'd first begin to speak. I hated using the phone. My experience with the doctors at the University of Washington was very positive. They explained each step of the procedure, which included having small wires inserted in my throat to identify where the tremor was strongest. I also have essential tremor, a condition which causes me to have shaky hands, and the doctors weren't sure if this was also affecting my voice quality (my entire throat, not just the folds of the larynx, moves when I talk). Botox was injected on both sides of my neck.<br /><br /> Now, I'm not yet back to my normal vocal range. I can't project my voice, and have a higher "minnie mouse" tone, which has improved slightly in the last week. I'm keeping a weekly voice log, to get some idea if there's been an improvement. Initially, I was distressed at my inability to cough productively (I almost panicked at one point when I couldn't clear my throat), but happily, this has gotten better, and I can swallow liquids without choking too.<br /><br /> One of the ways I used to cope with SD in the classroom was to project loudly, which sometimes helped the shakiness. Now I'm worried because I may not be able to be heard in a class full of noisy children. I'm a substitute teacher, so I haven't begun back since the holidays, and I wonder how I'll manage.<br /><br /> Anyway, I'm grateful to be able to share my story with you. I assume Megan is your daughter, and she's the one who got you started with this. Good job, Megan! I think sharing our stories may help others with various forms of dystonia. Please keep in touch!Mariahttps://www.blogger.com/profile/14398013829896730356noreply@blogger.comtag:blogger.com,1999:blog-7190291330522537787.post-20588322503932394232007-01-03T08:41:00.000+10:002007-01-03T08:41:00.000+10:00Megan. Thank you for your thought pondering commen...Megan. Thank you for your thought pondering comment. Unfortunately, histories of misdiagnosis and inappropriate treatments seem to have been frequently experienced by people with dystonia of any form.Sue Baylisshttps://www.blogger.com/profile/12681330289537484939noreply@blogger.comtag:blogger.com,1999:blog-7190291330522537787.post-2982447069230172982007-01-03T07:34:00.000+10:002007-01-03T07:34:00.000+10:00This is an excellent article. I wonder how many mo...This is an excellent article. I wonder how many more people are out there coping with misdiagnosis or pursuing treatments that further rob them of their voice?Megan Baylisshttps://www.blogger.com/profile/04549696888232735259noreply@blogger.com