Re: Getting on the phone
Stace - I think it's the tension of whatever it is you are doing. I used to experience it the most when trying to dictate. The combination of thinking hard about what I was saying - the sheer intensity of the situation, made the strangle on my voice twice as bad. With time, I got past the phone but I could never "relax" when dictating. John
Re: Getting on the phone
Hi Stace,
First things first ... I hate the phone!Now that that is out of the way, what I have found helpful is to only use the phone while seated, and to lean back and stare at the ceiling while I speak. I suspect this posture stretches the neck muscles to a point that, even though they spasm, the weight of my head hanging over the back of my chair limits their ability to cut off my speech. But, I could be all wet! ;-) Give it a try, it might help. And that's what this place is all about ... help. Let me know,
Mike
Re: Getting on the phone
SAME HERE!!!! It is so hard to find other people who hate the phone as much as I do!!! :) It's kinda cool to see it here!! :) :) I used to force myself to use the damned thing, though it took FOREVER to do so, often being a two hour distruption to my day all told - both making myself do it and then dealing with the aftermath. The whole "speech on demand" thing has been TERRIBLE for me!!!! It's now in my accomodation letter for school that I DON'T take part in class discussions or anything like that!!!!! We also stress the fact that I communicate by email best rather than any type of voice communication with my profs. (part of that is dealing with new people is always difficult and better avoided, and part of it is the whole speech thing.) :) the cool thing is that with Student Services (mostly the Disability Office) the director told me one day when I was struggling with which phone number to put on my exam accomodation form since I was in flux in terms of living spaces "you don't have a phone." :) :) I've taken her advice since and only put my email address on the forms!!!I also resorted to getting a TDD/TTY a few years ago (initially my speech path only agreed in the hope that having it would be reassuring enough that I would be able to use a phone regularly and not need it) so that I could use the method of communication that works best for me even during phone calls! :) It was a WONDERFUL decision!!! Having the words to do something, and getting those words out through my vocal system are two TOTALLY different tasks, and before the TTY it used to be almost IMPOSSIBLE to effectively make phone calls without wrecking my entire day!! Now I can do it with minimal fuss - as long as I know what to say. -Though at first I had to learn how to use it and script everything out. particularly talking to the relay operator. (and sometimes one wonders at thier competency in English!!) I also got call display and name display once I decided I needed to answer some of the calls that were coming in (like from profesionals) but normally didn't answer them 'cause I didn't know who was calling, which tehn made life difficult 'cause calling them back wasn't going to work for me, as I described above. THEN I had to look into getting a signal adaptor for the damend thing 'cause the ringer was frying my nerves. now I have a lap flash. :) With my hypersensitive hearing, visual signals work MUCH better, although explaining this to the people one gets the equipment from is interesting/difficult because it's typically for people who can't hear, and it confuses them when they realize I can hear. Now we usually tell them "I have the opposite problem. I hear TOO well!!" As far as the chair thing... you're the first person who's said the same thing as I've found!!! people always assume that lying down will fell better, and relax the muscles, but I actually find *sitting up* helps most!!! and stretching the throat out helps a lot too!!! tipping my head back and trying to stretch out my throat has been something I've done instinctively ever since I realized I could do anything about it/it got really bad a few years ago!!!! I know it weirded out some of the nurses/doctor who I dealt with teh alst time I had to get medical intervention in the breathing department 'cause of it (as I said, a few years ago now, and when I first met my -now- family doctor.) I always thought it odd that the position that seemingly puts the most strain on it(or everybody THINKS will) seems to be the one that helps thigns the most!!! But it works, so what the hell, right?
Re: Getting on the phone
That's strange, because I always found crouching forwards helped me speak on the phone. I agree with John though Stacy, it's a time when you are very aware of your voice and the stress levels go up creating tension and a worse voice as a result. I found that always happened at the start of a conversation too, but got better as I went along - being on the phone was like the start of a converstaion all the way through. There are so many elements ot this problem, not all physical, and it's the "other" dimensions that are hardest to fix sometimes.
Narelle
Re: Getting on the phone
Stacey, I too hate the phone, but yet can'nt stand to not talk to someone so stubborn me goes ahead and talks anyway. I know it just gets me more keyed up and stressed, because I constancly have to repeat myself. Sometimes my voice is worse when I get on the phone, but usally it stays the same. Unless, I just totally over do it, by talking to much. And believe me I do, do that. I hate that I cannot talk, I want to so BAD. I sometimes get upset and angry at my on self as well as others. Especially when someone on the other end of the phone it no friedly or considrant. I have gotten used to it now, so I just start my conversation out by saying "I am sorry, but I have a speech problem", Can you hear me o.k". Well, now that I've type this and read it, I shouldn't say I am sorry, cause I cannot help the way I sound. So hang in there, I know how you feel. Jan
Re: Getting on the phone
Okay, now I have to say something. I've been not saying it for a while as I read these posts, 'cause I'm not sure how to do it without probably offending people, and I know my perspective is a lot different from most people's, but now I have to say something. Why is it so important to people that they be able to talk? I mean, why does this seem to be the be all and end all of who people are/their sense of self worth??!!! There is MUCH more to poeple than whether they can talk or not, and it says NOTHING about their intelligence level or their language capability or any of the other sorts of things people seem to think it means. What is so wrong with not being able to talk??!! There are *SO* many other ways to communicate that are just as valid, and sometimes more so! Just because it's not usual doesn't mean there's anything inherently wrong about it; it doesnt' make anyone 'sub-human' or 'less human' just because they use another form of communication; I really don't understand this fixation by most of the world about verbal communication/speech!!! Just because one is CAPABLE of speech doesnt' mean one SHOULD speak!! I've heard it over and over again by people around me, and I always think it it so stupid when they tell me that because they can't find any specific/physical reason why I can't speak, that I SHOULD; they seem to think that speech and socialization are the center of what it means to be human,, and it's all CRAP!! (okay, rant mode: off -on that topic anyways, now.) Just because I can use speech SOME of the time doesn't mean I should use it ALL the time, no matter what other people tell me!!!! My friends have previously made the comparison to people with mobility problems: if a person with one leg was capable of walking with crutches, but asked for a wheelchair, you wouldnt' tell them "no, you HAVE to walk!", or in a similar vein, you wouldn't refuse a blind person a white cane or service dog because they were capable of finding their way around by blundering into the furniture, so I don't see what the problem is in allowing me to use a keyboard to 'talk' because I find it more efficient and comfortable than speech. I am even willing to use a computer that translates my typing into sound for the benefit of others since that's what they're used to, and may process better even if it's not what works for me, but they won't even let me do that most of the time!!! (luckily I haven't had as much of a problem with that recently, but it does occur, and if I use just a pad and paper vs. some high tech computer thingy, then they REALLY flip; they think there's something inherently 'wrong' with me because I prefer non-speech methods. (usually they attribute it to 'anxiety' or some other psychological crap which has nothing to do with it.) Anyways, sorry, I started ranting again, and didn't mean to, I just don't see what the point is in beating onself up about not being able to sepeak, especially when it's something we have no control over. Speech does not make the person, the PERSON makes the person. I'm not saying there aren't times that I don't wish I could talk when I can't, 'cause there are, albeit it those are rare, but I do know the feeling, but I just basically have to remind myself to accept it, and to use the way that works best for me and the one that's working at the time. After all, it's not the METHOD of communication that's important, it's the CONTENT, and the COMMUNICATION ITSELF that's important!! (one thing I'm glad my speech path understood, 'cause most people don't. ...which is also mainly what led me to believe that speech was futile by the time I was 5 or 6, ...after being forced to begin using it at around 3.) ...as far as getting mad at others...well, if they have a problem with your difficulty speaking, then it's THEIR problem, and not yours!!!! Sometimes, one is justified at getting mad at idiot inconsiderate people who don't give a d*mn about accomodating other people, and/or can't break out of their own narrow minded conceptions of who people are to actually find out the truth! Anyways, now you've heard my rant on the subject. {:~) Basically it comes down to "your life isn't over just 'cause you can't speak, (I've had difficulty with speech and communication my whole life, and my life's just fine, thank you) and not being able to use speech doesnt' make you any less human, or detract from your value as a person AT ALL!" ...To quote a t-shirt I got from "People First" ..."Not Being able to speak is not the same as not having anyhting to say."
Re: Getting on the phone
Stacy,
I think that EVERYONE with SD hates the phone. My voice can be fine and then I'll be on the phone, and it will be awful!! I think alot of it is the psycological aspect that you know that everyone will be listiening to your VOICE. There is no eye contact, no gesturing, nothing. You're being judged entirely on your voice, and for us SDer's, that's pretty scary. ANYWAY, that's just my opinion...
Re: Getting on the phone
AND people always expect you to respond so fast, and don't know if you're having trouble getting started, like they do when they can see your face, and.... for me, anyways, I can't think that fast. One of my biggest frustrations before my speech path. and I restructured the expectations of me was that people were always expecting me to respond to something before I'd even entirely heard what they'd said, never mind thought of a response!!!! One thing I can't do very well is think on my feet, and since people on the phone can't SEE you thinking about something, they get impatient really fast and start pressuring you more or think you're mad at them or something, when you just haven't gotten anything out yet!!!
Re: Getting on the phone
I agree - it seems that everyone with SD dislikes the phone - some moderately, and some intensely! A while ago on the BB there was a discussion suggesting that there may be a physiological reason for this phenomena - something about the fact that a nerve involved with speech is joined to a nerve involved with hearing. I think the discussion said that because we can hear ourselves while we talk on the phone it may set off a feedback mechanism that causes the muscles to spasm more. The idea that there may be some physiological reason (be it the above or something else) makes sense to me - it is hard to believe that every time every one of us talks on the phone we become stressed out and therefore worse. My two cents! I wish you well, Robin
Re: Getting on the phone
I hate the phone! I know someone else posted this "trick" earlier but I also used to answer the phone "yes" instead of hello because yes came out ok, hello spasmed. Go figure why that is but whatever gets us by is ok, I suppose. My brain has also become very fast at replacing words that won't come out well with words that may or will come out ok. I always feel tired after talking alot, guess it's all that mental word switching.
Re: Getting on the phone
Okay - how's this? I can talk on the phone at home, no problem, unless the connection is bad, or the person I'm talking with has hearing problems and asks me to repeat things. BUT talking on the phone in the orchestra room (when it's likely to be a parent and there's background noise)? Forget it. And Dawn - you're right - Hello is awful - I'm going for Yes next time! And talk about substituting words - when I tune kids instruments at school - asking the kids to play their open strings - A D G and C - one at a time - was a battle - it came out Hay - DD-Dee, Chee and CC-Cee: now I just say next, next, next and that works. It's all a matter of adapting. We're all learning, aren't we?
Re: Getting on the phone
Hi Barbara, I have been reading your postings of the last few days. I am a teacher too and started having voice problems in January 2000 and was diagnosed in August 2001 with ABSD. It was the 1st day of school and I had to get a sub to make the specialist appointment. I went to the university in Tucson to see a speech therapist whose speciality is this type of thing.I can sympathesize with everything you mentioned-certain kids names just won't come out, phone calls to parents, trying to get kids attention on field trips on a bus, trying to talk to other teachers in the lunchroom etc, etc. In January of this year I ordered a voice amplifier that I use in the classroom and it helps tremendously. It is called a voicebox- looked on the internet for voice amplifiers. There are several types available. At first I just used a handheld mike I bought at radio shack, but it wasn't very convenient plus I couldn't use it in the computer room or the library. This voicebox is very portable, fits on my belt and I can take it wherever I want. I can't use it on the playground to get anyone's attention, but inside it had been a godsend for me.
This summer I am gong to get an amplifed telephone for home use. Feel free to eamail if you need any more info on the voice box.
Katrina This summer I am going to get an amplified telephone for home use.
Re: Getting on the phone
When I first started taking Neurontin, the first benefit that I saw was with speaking on the phone. After being on the med. since Dec. my voice is now the best that it has been in 6 years. I'm very encouraged and hope that it helps others.
Re: Getting on the phone
Thanks Katrina. Sounds wonderful. Someone mentioned using a mike to me the other day, but I'm certain it would be too confining. I teach orchestra and often play the violin or piano with the kids. If I'm not moving from one to the other, I'm moving around the class to help them with notes or their positions. Is this voice box like a cordless mike, kind of like preachers wear? Is it expensive? Let me know.Also, my daughter goes to school with me and is the only 6th grader in our advanced orchestra. Because of her placement, she is unable to eat with the other 6th graders and prefers to eat in my classroom, rather than with the older kids. It's a good excuse to avoid being with the teachers and not having to voice myself. However, next year, Bethany will be with her classmates for lunch, and I know I need to lock up my room and take a break with the teachers. Have you shared your SD diagnosis with the other teachers? Do you kids know what you have? Is it helpful for them to know? My kids know, but the other teachers do not - I've become sort of a recluse where they are concerned. I finally got my doctor and neurologist (who have come up dry) to agree that SD is a good explanation for my problems (my voice has never acted up when I'm talking with them). They are setting up an appointment with a specialist in Tyler, TX in June who is highly recommended. If this isn't SD, I'm really going to be surprised. It all fits so well.
Anyway, I hope I can get a treatment in before school starts again. It would be so nice to have a grip on this!! Thanks - it's great to talk with another teacher who's still at it. I plan to stay with my job until Bethany finishes high school so we can both stay in our wonderful district. Seven years with SD may be a challenge, but the Lord knows!
Thanks
Re: Getting on the phone
Hi Barbara, Yes the teachers know what is wrong with me although they can't remember what it is called. I talked a lot about it last year and of course it was quite obvious something was going wrong with my voice. There were also 2 other people having acid reflux problems which is what was first causing mine. I have had the same students for 2 years so they have been through this whole thing with me too. I was worried about parent conferences in October when I was at my worst- could just barely whisper and only had a cordless handheld mike. Ithought the parents would voice concerns to the principal but they didn't so I guess mike was doing an ok job. The voice box is larger than what they wear. It is about 6 inches by 6inches and has its own sound system built right in.A little burdensome to wear. It cost about 260 dollars. My school district paid for it. There was some kind of a grant for teachers with disabilites to keep them in the classroom. This summer I am going to check out another type this company had. If you email me, I will then email you the name of this company. Let's keep in touch. I have 7 more years until I want to retire. I'll have my 80 points in then. Hope I can make it too! Katrina
Re: Getting on the phone reply to Barbara
Hi Barbara and Katrina,Barbara, I think I have already replied to one of your post, but I was reading the one regarding a voice box. Here are some address and phone numbers for companies I was referred too by another fellow SDer. She got one of her prior to voice surgery and the other one after surgery. 1st - Luminaud Inc. 8688 Tyler Blvd., Mentor, OH 44060, Phone #800-255-3408. 2nd - HITEC Group International, 8160 Madison Ave., Burr Ridge, IL 60521 phone #708-654-9200. (This was a phone voice amplifier) However, she suggested I try contacting my phone company, because some phone companies offer these products without any cost so check there first. I hope this will help you and others as well. I havn't gotten one yet myself, but I am thinking about doing so. Katrina, I to have GERD/Acid Reflux disease and a Hideal Hernia. So I can understand what you are going through. However, I take Preversaid 30mg 1 to 2 times a day which is keeping mine under control for now. I sure hope it will continue to do so, because I am awaiting an approval from my husband's insurance company to have surgery. I sure hope I get approved. On pins and needles waiting. I admire anyone who can continue working with SD. It is a very hard thing to be able to do, especially if you have to use your voice alot. So good luck to both of you and God Bless. Regards, Jan
Re: Getting on the phone
I don't know if anyone knows this, but at least in Canada, the governmental phone company will often give a free loan of such devices. It depends on teh province though, I think. SaskTel is where I got the TTY, and signaller from on free loam. I know they also have voice amplifiers and stuff for visual impairments too. You need a doctor to fill out and sign the form though. (well, they'll accept a speech path. or OT now too. The OT was just a recent addition.)
Re: Getting on the phone
Okay, now my Linguistics training comes into play here. The initial sound in "yes" doesnt' necessarily invovle voicing... I remember when the first doctor I approached about getting assistive communicative tech. freaked and said she'd refuse to see me if I didn't speak to her, we eventually worked things out to the extent that I decided to compromise a little and responded once with "yes" but basically exhaling ans adding a bit of force (voice) to it. Basically, in order to get that initial sound, one can just form the lips around it a bit, and not put any effort into it till the vowel. When it comes to the "h" sound though, there are two things invovled. voicing and stoppage. It may be considered a fricative, and may not be voiced in all dialects, or positions, but for me, at least, it comes out almost like a stop most times. (that is, like any of the 'hard' consonants, p,t,k,b,d,g) and the fact that it's glottal (made in the back of the throat) makes it even worse.
Re: Getting on the phone
Well, despite the fact that I don't hear myself talk most of the time (don't get the feedback most people get. I know it surprised my speech path. the first time we brought it up) I do think there is something to this speech/hearing connection. That is, even though I don't often hear what I said, the vibration travels up to the eear drum and muscles concerning that, and I've often found that being ablet o hear myself speak often makes things WORSE, on the phone or not. it's an overloading sensation which will shutdown my speech faster than anything!!! (IOW I hear the sound, even if my brain doesn't get the meaning out of it)I've found if I can manage not to hear that sound when communicating (ie. by typing or whatever) it's better. Sometimes I've overloaded even on a computer relaying my thoughts through synthesized speech. Sometimes my ears just aren't capable of hearing speech, it seems. -that is, not without tripping some sort of shutdown sequence or something. Interesting to hear that (it sounds like) others expereince this...I always thought it was just me 'cuase of my weird neurology in general. So anyways, it may not be a direct link to the muscles of the larynx, but maybe one in the hearing mechanism (well, the brain invovleing the hearing mechanism anyways) that says "this is painful, stop it" or something. some signal to shut off the throat. I've noticed sometimes that there does seem to be some sort of pain involved in my *THROAT* sometimes from *HEARING* myself speak!! I've never known what that was about, and always thought it REALLY weird, and at times thought it meant tehre was soemthing screwed up about me, but I don't anymore. I just chalk it up to weird neurology, and the way I am. (specifically, probably some weird sensory integration fall out thing.)
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