Esophageal Speech Failing after 40 years

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Mincolo
Mincolo Member Posts: 2
edited October 2015 in Head and Neck Cancer #1

Yes, my mom had a full laryngectomy in 1974 when she was in her early 40's.  I can't believe it was actually 41 years ago as it's all I remember for her; I was 7 years old when she had her laryngectomy due to cancer.

She successfully used esophageal speech until the last couple of years.  I know some people historically have had a mildly difficult time understanding her but I've always been able to understand better than 98% of what she says.  Now I'm down to understanding less than 10% and most people can't understand anything at all.  I don't know what to do.  She doesn't help herself and I can't seem to find anyone to help her as she is so far past surgery she doesn't have a specialist.

I took her to a pulmonologist who diagnosed her with COPD but didn't run any tests.  We hired a speech therapist who helped her "form" her words which is ridiculous as she's been using esophageal speech for 40 years and doesn't need help with that.  We need an answer as to why she can't speak clearly anymore.  She's been cleared for strokes, it seems to be more of a mechanical issue. 

My mom is 85, and I think she's just given up as my dad died several years ago.  I don't think she does the breathing treatments the pulmonologist recommended and she must be so lonely as no-one can understand her anymore. 

She's moving to Denver to live closer to me, so I'm hoping to find a specialist in this area to assist.  I haven't been able to find anyone with experience dealing with this sort of thing and I see why she's just given up trying.  She's moving into a senior community and I know people won't be able to understand her and I'm afraid she won't make any friends.  She can't talk on the phone or communicate with people and I can only imagine how frustrating and demoralizing it feels for her.  Honestly it breaks my heart and makes me so angry at the same time because she doesn't do her breathing treatment - the one thing that can help her move air with COPD.  I'm afraid she doesn't have the lung function to use esophageal speech anymore and I don't know at 85 if she'll learn something else.

Any ideas or suggestions would be so appreciated.  I signed up for webwhispers.org but haven't heard back yet.

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  • phrannie51
    phrannie51 Member Posts: 4,716
    #2
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    My mom too suffered

    from COPD and had it at the same time she got a laryngectomy.  She tried esphogeal speach but didn't have enough air to do it (she was in her early 60's when she lost her larnyx).  The put a TEP in her throat which requires less air in order to talk.  It's an idea, and worth talking to her ENT about.

    p

  • Barbaraek
    Barbaraek Member Posts: 626
    #3
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    Mincolo

    first, I want to commend you for being a caring, supportive child (sorry your screen name doesn't indicate if you are a son or daughter) for your mom. She is lucky that you care and are looking for answers.

    Is there a local support group that might help you find some suggestions or answers and serve the dual purpose of connecting her with people so she doesn't feel isolated?

    maybe trying to speak is more effort than she can handle physically or mentally at least his time...would some type of augmentative communication system be called for?

    i know with my mother in law I get frustrated because she's not following through on exercises to increase her mobility so she can not be housebound. I worry about her feeling isolated but in truth it seems to bother her less than it bothers me!

    hopefully you will get some helpful suggestions soon

    Barbara

  • Mincolo
    Mincolo Member Posts: 2
    #4
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    Melanie in Colorado.

    Melanie in Colorado. (MinColo).  :) 

    Is an ENT the right person to take her to?  Should I start with finding a really good primary care physician and then go to an ENT and pulmonologist?

    How much less air does the TEP need?  So you can use the TEP if you don't have enough air for esophageal speech?  I was wondering about that.

     

    Thanks for responding and yes, after an evaluation I'm definitely going to look at alternative ways for her to communicate.

  • phrannie51
    phrannie51 Member Posts: 4,716
    #5
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    Mincolo said:

    Melanie in Colorado.

    Melanie in Colorado. (MinColo).  :) 

    Is an ENT the right person to take her to?  Should I start with finding a really good primary care physician and then go to an ENT and pulmonologist?

    How much less air does the TEP need?  So you can use the TEP if you don't have enough air for esophageal speech?  I was wondering about that.

     

    Thanks for responding and yes, after an evaluation I'm definitely going to look at alternative ways for her to communicate.

    My mom was seeing both a pulmonologist....

    and her ENT....it was the ENT who placed the TEP....and yes, it takes less air to speak.  I don't understand the mechanics of it....but do know that even at the end, when emphasema had her on oxygen 24/7....she was still able to speak.

    p

  • wmc
    wmc Member Posts: 1,804
    #6
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    Might not be good to go to Denver.

    I have COPD stage 3 but rarely need oxygen. If I go above 2500 feet I feel it and I can't breath at 5000 feet without oxygen. The air is too thin that high up. I can't fly as the plane is pressurized to 5000 ~6000 feet and I can't breath.

    Do what ever you can to get her to do the exersize and breathing treatments. They really do work. I was told I was a good candidate for lung reduction if a few years, remove 30% from each lung, and that was the "good" news. I went through pulmonary rehab and do the breathing exersizes and watch how I breathe. That was four years ago and before my cancer. They had to do a full Laryngectomy and I now breath through my neck. I saw the doctor six months ago and asked about the lung surgery as I want to have it while I still have good insurance. He said there is no doctor that would even consider doing the surgery now that my breathing has gotten that much better. It works so please tell her she really needs to do it. Now I have to rest if I walk around the block, but I can ride a bicycle 10 miles and be fine. 

    If she is getting short of breath it might be effecting her speech. Sorry but she knows how to from the words and letters. I think it might be a breathing issue. Has she tried The vibrating divice too talk with. I know it is not her own voice, but it takes no air. You do sound a little like a robot, but it might be just the thing for her as she can be understood better. Just a thought, and I know it will be hard after doing ES speach.

    Bill

  • hwt
    hwt Member Posts: 2,328 Member
    #7
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    wmc said:

    Might not be good to go to Denver.

    I have COPD stage 3 but rarely need oxygen. If I go above 2500 feet I feel it and I can't breath at 5000 feet without oxygen. The air is too thin that high up. I can't fly as the plane is pressurized to 5000 ~6000 feet and I can't breath.

    Do what ever you can to get her to do the exersize and breathing treatments. They really do work. I was told I was a good candidate for lung reduction if a few years, remove 30% from each lung, and that was the "good" news. I went through pulmonary rehab and do the breathing exersizes and watch how I breathe. That was four years ago and before my cancer. They had to do a full Laryngectomy and I now breath through my neck. I saw the doctor six months ago and asked about the lung surgery as I want to have it while I still have good insurance. He said there is no doctor that would even consider doing the surgery now that my breathing has gotten that much better. It works so please tell her she really needs to do it. Now I have to rest if I walk around the block, but I can ride a bicycle 10 miles and be fine. 

    If she is getting short of breath it might be effecting her speech. Sorry but she knows how to from the words and letters. I think it might be a breathing issue. Has she tried The vibrating divice too talk with. I know it is not her own voice, but it takes no air. You do sound a little like a robot, but it might be just the thing for her as she can be understood better. Just a thought, and I know it will be hard after doing ES speach.

    Bill

    Temporary help

    Wish I could offer solution but can only say I carry a "Bogie Board" which I got at Sam's Club for $20. It is so light weight and doesn't require wiping like a dry erase board. Every doctor that sees it loves it. I try not to use it too much so I don't lose the speech ability i do have. At 85 not sure if your Mom uses texting or e-mail. Those allow me to communicate where I otherwise would not. I also retain a landline in case I need to call 911 they will know my location. One with speaker phone best. I have a code with my brother to call him and simply hit any keys and he will know I am in trouble from caller i.d. All of these things make me feel more secure and allow me to commumicate. My physicians, friends and family know best to ask me yes and no questions on the phone to be understood the best way possible.  Most of all I recommend the Bogie Board

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