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Posted by: Micheal ® 05/17/2003, 21:15:04 Author Profile Mail author

Hi All, I have been away from the BB about 10 months now and feel it is time to return. It has been a long road and I have hit every rut there is, but I have also gained a little knowledge along the way.I feel I need to share some of this informaton, and hope to learn more here in the days ahead. My story is a little different, I have Muscle Tension Dysphonia (MTD) not SD but there are similarities since they are all neurological disorders. The main difference I guess is that I am completely mute. I have a video of the throat exam and can see how the false vocal cords are closing restricting sound output. When I try to make sounds I get a lot of the same feelings I have read about on this site. So I do feel the same frustrations that many of you do. I also attended a couple of SD meetings here locally and plan on going back. I wrote a reply to Lynne Martinez about my getting SSDI if any of you are interested in reading it. I was approved on my first request and did all the filing myself. In her reply back Lynne was kind in saying that I had inspired her and I hope that I may help others. She asked about a machine that I use for communication and actually there are 2 that I use. I created both of them due to my insurance denying me access to commerically available AAC devices. My state rehabilitation program allowed me to test a couple of units but I thought I could do better. I am using a laptop computer with a text-to-speech program installed to "speak" for me in various situations. It has allowed me to attend social functions again and most people are very willing to hold conversations with me. I also use a palm computer to take shopping and other activities, so I can enter what I need to communicate and others can read it. I have also added speech capability to it so when needed I can have it "speak" to people. While these are not perfect devices, I will say they are as good as any commercial units I have tried and can be put together by anyone for a lot less money. Anyone interested in the program name, please feel free to contact me. I have just found an internet service that will act as a TTD/TTY service for anyone that has trouble talking on the phone. The service is provided free by a major phone company. The way it works is once you log in an operator will place your phone call. When you type in what you want to say, they will read it to the person you wanted to call. When that person has started talking the operator will type it into their computer so you can read the response. Again this service is free and you can call anywhere in the United states. Please feel free to contact me about this if you would like further information. I hope this helps some, I have had to learn about all of this by trial and error. It would be nice if there were pamplets or something provided by our medical professionals or government agencies. Instead I find that most know these type of services exsist, but have no idea how we can go about getting them. The services I have found through government agencies are taking from 3 to 6 months just to go through the paperwork process. The problem is, I, like most of you need help now so that we can co-exsist with the speaking world. Thank you in advance for any and all replies. I hope to hear from many of you and am looking forward to making new friends. To those that wondered what had become of me.....I'm back and more focused than before. Modified by Micheal at Sat, May 17, 2003, 23:49:18

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