New member with no voice!

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Phyllis7777

New member
Joined
May 28, 2008
Messages
6
Country
US
State
Florida
City
Sarasota
Hi to all of you! I just joined after watching for awhile. I'd love to connect in with others who have lost their voice due to Bulbar Palsy, or anything else. I'd like to know what you recommend in the way of speech generating devices and other ways you've learned to cope without the ability to speak. Feels like I've lost so much of who I was, but I know things could be much worse, and mostly that I'm not alone on this journey. Thanks, Phyllis
 
Hi, Phyllis ... and welcome from one newbie to another.

After 2+ years of bulbar symptoms, my speech is most often unintelligible, esp. as the day wears on. I'm learning to use the type/speech gizmo, but am not getting much use out of it yet, as my husband has learned to listen very attentively to what I'm trying to say. I don't have a way to carry it around with me when I go out ... it's way too big for my purse. It's faster at home just to jot down a word or two and gesture and slur something out, and my husband usually gets it. We are developing sign language.

I eliminate all unnecessary words ... "the" "and" etc. and try to use the shortest words possible when I have to talk. The biggest problem is on the phone, when I can't use gestures, and am talking to strangers. The first thing I say is "Please ... ex .... cuse ... spee ... ch ... I have prob ... lem." This way, they will usually slow down and work with me. Don't know how long this will work, as my speech continues to deteriorate. Wish I could use a type/speaker on the phone ...

My answering machine still has my original message on it from two years ago when my speech was normal. I'm scared to death to lose that message! But the answering machine turned on yesterday while I was "talking" to someone, and when I listened to the tape later, I was surprised to hear that I was somewhat more intelligible than I thought. I sounded both stupid and drunk, but I could make out what I was saying, which is all I hope for at this point.

Mostly, I just avoid speaking situations as much as possible. I do as much as possible by e-mail. When companies don't have websites or e-mail, I write letters. I write letters to my doctors and even my dentist now, instead of trying to leave messages to make appointments or ask questions. (And one "advantage" of all this ... after just one labored phone call from me, people recognize my horrible voice instantly on the phone when I call, which saves a LOT of explaining.)

It's a learning process every day. I think PALS must be the most creative people in the world to figure out how to cope with all this.

Don't know if any of this helps, but we're all facing these things together, and I'm glad you have found the forum. I am getting a lot of reassurance and support just reading questions and responses, and sometimes just "venting."

Beth
 
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Hi Beth and thank you!

Great to hear from you Beth! You're exactly what I hoped to find. Someone articlulate and intelligent who is at the same place I am!

I've had my voice deteroration for about a year now, but can still manage the basic words, and my husband, family and friends have been great in trying to understand me. I use a white board for lengthy things but can also do a few short words, and lots of hand signals. Fortunately I can still smile!

I can't do the phone at all, so my new speech therapist gave me info on TTY telephones that we can get free of charge. I'm also trading in my old cell phone for one where I can do text messaging. I was my husband's office manager until this happened, and my message from a year ago sounds so clear! Like you, I started sounding drunk or stupid, and I'm not either. I hate it when people react to my voice problems as though I'm dumb!

And after days researching speech devices on the internet I think I found a really cool and very affordable SGD through www.cyranocommunications.com, and can try them free for 30 days!

Like you, I've pretty much withrawn from situations where I have to talk but I love email and the internet. I'm a bit of a private person so if you want to chat more (and I hope you do!) my email is [email protected]. I'd love to have someone to "talk" to that understands exactly what I'm going through.

Thank you so much for writing! With a warm smile in your direction, Phyllis
 
hi phillis,
i have lost my voice completely,,after not being able to walk or use my hands to als. at home i use my computer to type what i need n to communicate by text to my son when he is out. when im out i use a doodle board. i think the voice issue is the wrost of all.
 
Thanks for your responses!

It's so great to know that I'm not alone in dealing with this, and I appreciate your kind words and encouragement. After withdrawing from the world lately, I've decided to get more pro-active with this problem and begin to reach out to others for help and support. Thank you, and I so wish I had that "magic wand" and could wave it and make everyone healthy again! With a smile in your direction, Phyllis
 
speech

Phyllis,
Please do not withdraw from the world. My husbands symptoms started 2 years ago..same story..stumbled over words, sounded drunk ...etc. He stopped working a year ago this week, he was into global marketing. Anyways, He has been totally isolating himself which is emotionally difficult for us all. Friends and family will do everything in their power to understand your speech. Do not get frustrated..just know that people want to hear what you have to say. He has a dynavox,...but it is huge..and heavy..not ideal for spontaneous conversation. My boys 4 and 6 get a kick out of the device when my husband pushes the naughtly words. Better to laugh then cry. Also..keep that smile..a great way to connect non-verbally. You are not alone. Fondly, Kelly
 
Thank you Kelly

What beautiful words and sentiments, Kelly. Thank you for you sweet encouragement! My heart goes out to you too. I think the worst part of all of this for me is that I feel like my new husband lost the woman he married, and you've lost a large part of your husband too.

This is even more crushing to our self esteem when we have been so dynamic in the past -- your husband with global marketing, and I ran my own magazine and even had my own television show! I prided myself on being competent, articulate, intelligent and independent but now I sound like I'm stupid or brain damaged. I think that's why we withdraw, somehow it's easier to be alone than have to deal with the blank look on people's faces when we say even the simpliest thing.

But you're so right, withdrawing only makes it harder on those we love. I'll remember your words and sincerely appreciate your kindness. Thank you with all my heart, Phyllis
 
Hi, I just wanted to let everyone know that the link to the very small compact speech generating device (SGD) that I posted earlier was incorrect. The correct link is: www.cyranocommunicator.com and they will let you try their device for 30 days, at no charge, if you go through a recognized speech facility. It is the most affordable unit I've found (under $1,500) and the MDA will even pay for it if you go through testing with one of their local physicians, also at no charge. Amazing how much help is available once you open up to it. Phyllis
 
Phyllis,
Excellent find! My brother suffered a traumatic brain injury that has left him with aphasia. I just emailed a friend of his the link. THANKS

Tom S
 
Hope it works out for him!

Thanks for the the thanks, Tom.

My speech device is on its way here, and I can't wait to get it. The people at Cyrano are wonderful to deal with, very helpful, and the technology is amazing! The product was developed by a church-related company for the owner's autistic son, and this is an organization that really cares about helping people. The MDA has been great too, and they will pay $2,000 for a speech device if you meet the disability qualifications. Glad we are there for each other!
 
Just wondering...

Did anyone have the visible tongue twitching that could be felt,before losing their voice?Thats what I am going through now, jut feel like my speech dosent come out right/and or nasaly.
 
nasal speech

My husband started with Nasally speech. We actually searched high and low to find allergy medicine thinking it was a sinus infection. Around that same time he had total alcohol intolerance. One beer and he could not talk. Then people at work thought that he was drinking on the job. I can still understand approx 75% of what he is saying. Unfortunately, other people have more difficulty. Fondly, KR
 
My diaphragm is getting weak, thus my breathing is compromised. But lately I have a new symptom: at the end of every day I am hoarse and can barely speak above a whisper. Plus my vocal cords feel tight. this improves with rest so by the next morning I am speaking again, but then the cycle repeats. I don;t know what this means for the future but it is nice to know that technology can come to the rescue if needed. :-D
 
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