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artificial voice/speech equipment
I am at the point where I’m not easily understood and I would like to hear from people about what equipment they are using and could share some dos and don’ts about selecting the right equipment.
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41 Replies
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Hi Pepper, I’ve been living with this for several years now and am happy to share with you what I do to not only keep speaking with my own voice but have others understand me as well.
About 6 years ago (5 years after the onset of my ALS), I began to have the “thick tongue” feeling and noticed trouble speaking – – slow words, breathy sound, and unintelligible as the evening wore on. Here’s what I did, and now 6 years later, I am still speaking.
– I took the online course by voice coach Andrea Caban. And wrote about it here:“Dysarthria? Use These Innovative Techniques” I learned to redirect my breath from “upper chest speaking” to using my diaphragm, like an opera singer. This gave me volume, extended the number of words with one breath, and I was less tired speaking. I also learned to move consonants like “gah” and “kah” more forward in my mouth, and not in my throat.
– I use the Talk-to-text app on my phone to speak to our Alexa. This relieves my frustration with voice-activated devices not understanding me.
– When in a group, or riding in our van, I am heard above the noise by using a personal microphone. I wrote about it here: “Listen! Can You Hear Me Now?” and here: “Hooray! You Can Hear Me Now” Here is the microphone.
– Everyday day I practice breathing exercises. I describe them here: “How Blowing Bubbles Helps Me Breathe” And I do a tongue warm-up plus mouth stretches like: prounouncing an elongated “EEE”, “KEUWW”, “EEE”, “ARRR”.
When my voice issues began the ALS Clinic referred me for approval to use a Tobii eye software… but so far, I haven’t needed it 😉 Hope these tips help you! I’m happy to offer more.
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Thanks so much! All of the responses have been very helpful!
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Hi
this may not be the best place but I can’t find it anywhere
my speech is getting worse. Slow and sometimes slurred. Don’t like talking.
It was recommended that I have a card with me that states I have have ALS and it affects my speech. (In case I get pulled over by the police .
Does anyone know more or how have other people handled this issue?
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Alan – – that is a good idea, to carry a card. But I have a few additional suggestions:
Carry the card conveniently – like a shirt’s front pocket, so you won’t have to fumble for it. Use it for other situations: for a cashier, at the bank, etc.
The best case scenario is getting pulled over by the police, worst case is being in a traffic accident… perhaps wear a medical alert bracelet (ALS) for first responders. Also (we do this one) have an envelope in your glove compartment marked on the outside “In case of emergency.” Inside we have a sheet with our medications, that I have ALS, my neurologist’s name & phone, family contact, etc.
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Pepper – Like Dagmar, I also have a TobiiDynavox. I was very enthusiastic about it when I first received it, but the novelty ran out after about 6 months and it now just occupies space. I am still able to use my hands to type – OK, 1 or 2 fingers on each hand – and my speech pathologist suggested some apps for my iPad: I tried them and that they were too expensive or clumsy. I am not sure how I found Speech Assistant AAC (less than $12.00 in the Apple app store), but I have been using it for about 2 years. It is relatively easy to navigate, flexible, has a talking feature (which I don’t use as all of the voices [in my opinion] sound like a machine), has a screen view with large letters that the person that I’m “talking” to can easily read, and really “predicts” the next word well which saves typing. I showed it to my speech pathologist, and now it is #1 on her recommendation list.
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I really appreciate this conversation. Steve’s voice is down to a whisper, and that is even hard to understand with some words. Amplifying it won’t really help. He’s not interested in using a Boogie Jot board.
Jim, I looked for the Apple app you use; Speech Assistant AAC and couldn’t find it. Could it be under a different name these days? Your help would be appreciated.
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My speech is totally not understood by anyone, and I cannot write anymore. I also use Speech Assistant AAC. I just looked in the APP store it is still available. It is annoying to use, but as good as it gets, and other people appreciate it. As long as I can type I will use this rather than eye movement device. By the end of the day communication is exhausting.
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Thanks Marianne. I realized I was looking for the app on my MAC. When I used my phone, I was able to find it quickly. It looks much easier to use than the text to speech app Steve is using. Looks like the price has gone up a bit but still very affordable for the convenience.
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In addition to the good recommendations above, if you use a text to speech app, I would recommend using a Bluetooth speaker to boost the volume. I found one that was hand-size, and had a small loop. I then attached a carabiner clip so I could attach it to my belt loop. I used that for about 3 years, along with carrying a boogie board. Once my hands lost function, I started using a Tobii Dynavox.
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I received the Tobii Dynavox months ago but haven’t used it much. You are basically on your own when it comes to training and figuring out the machine.
The company representative and customer care are the worst. They throw out a possible answer, untested, and you never hear back from them to see if it worked.
I use the text to speech Clarocom app on my phone. Works great-
Steve, or anyone, I’m happy to help with Tobii training or issues. I’ve been using it for 1 1/2 years, and used to work both in information technology, and as a teacher. My only limitation is that I’m have lost my voice, but can speak through the Tobii. Also, a screen can be shared with Zoom.
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Thanks so much. Pepper
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Thanks Mike.
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Steve K. I agree that Tobii as an entity does not have good user support. However, my Tobii “salesman” has gone out of his way to help me. You may want to look on You Tube for videos by Chris Kovach. And no, I don’t get a kick back other than the satisfaction of hopefully helping another pALS.
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My grandchildren understand Speech Assistant better than anyone. I guess they are used to electronic voices and have good hearing. They enjoy the voices and laugh at it, making me say funny things, which is nice for me to get that attention from them!
My friends are another story. They don’t understand the voice, don’t have their glasses to read, and get impatient with my typing. We had 3 couples visit last weekend and I finally gave up trying to be in the conversation. The frustration was exhausting.
My husband is getting used to it…finally…the learning curve has been long! He patiently intreprets for me.
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Hi Pepper,
I have very limited speech so I do use the speech assist app on my phone. I find it works great but when I’m home I use a whiteboard to communicate to my husband and friends that may come by. Texting using your phone is another way to communicate too. Hope this helps
Ginger A.K.A Spice Girl
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I have Google docs on my ipad and my wife has it on her iPhone. It has word prediction and
as I type on my device the text immediately appears on hers. Often as I am typing she can fill in the rest of the sentence. So quicker than text to speech and no robotic voice.
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I really admire all of you. So far, I have not lost my voice but I’m guessing that’s ahead. It worries and depresses me that I will have to adapt to all the equipment/software you are talking about. I just don’t feel like I’ll be able to do it. You all inspire me.
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This Thursday, December 16th, my Speech Therapist set up an appointment with a rep from Tobii Dynavox. Currently, I use a pen and notebook, dry erase board, “Notes” on my iphone and texting. I have not been able to use the telephone for most of this year. I manage, not easy… and sometimes I ask one of the nurses to make a “business” type of phone call for me. My big frustration is I cannot text as fast as a 15 year-old!
I really don’t think I’m ready for a Tobii (and hope I never will be). I watched most of the Tobii videos on youtube; there were not many viewers, they were put out years ago and the comment section was turned off… which is a major red flag in my book!
Your suggestions are all great, I will make a list of every recommendation and follow-up on them.
Also, what about the cost? Does insurance pay for it? All of your suggestions are sincerely appreciated… thanks 🙂
FYI: I am on Riluzole (50mg 2x) for this entire year (having a major problem swallowing)and look forward to taking the new oral film that dissolves on your tongue. Plus, Radacava over 75 infusions and have all the pinholes to prove it!
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See my post on the Tobii Dynavox eye gaze device. My wife uses the I-13 model. This was an upgrade from the I-10, which was covered by Medicare with her doctor’s order. We had to pay for the upgrade ($15,000). The Tobii is not perfect, but I would rate it a 7 out of 10 and the tech support is pretty good.
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Has anyone tried Voiceitt? You speak about 200 (Ithink) prescribed short phrases sitting at the computer, then it learns how you say those sounds. Made for those with speech difficulties. As your speech gets worse, it still interprets. It types your speech in real time, or uses a robotic voice in real time to speak out loud. My husband has, so far, done the words, but that’s as far as we’ve gone. YouTube has a video of a guy with MS doing it, looks wonderful! His speech is pretty hard to understand, but the Voiceitt2 immediately is typing out what he’s saying. We are paying 59 /month. The app is not the updated most recent version, we are using RAZ Mobility to access the Voiceitt, access through any browser . Supposed to be next generation assistive technology.
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I completely lost the ability to speak several years ago. My arms and hands still work well enough to write and type (hunt & peck only). I primarily use a boogie board to communicate. I don’t bother to use the stylus that comes with it, I just use my fingernail to write on the screen and with the push of a button, it erases. Much better than a white board and no mess.
I also use a text-to-speech app on my phone but find it cumbersome to try and keep up with a conversation. I mostly use the app when I have an opportunity to “talk” to a group of people, and know ahead of time what I want to say so I have time to type it into my phone.
Recently I discovered that I can make phone calls with an IP (internet protocol) Relay service. It’s easy, I’ve used it several times when my wife hasn’t been available and I didn’t want to wait for her. You can use the service with any computer, tablet or smart phone that connects to the internet. I guess it was originally created for the deaf population and the federal government requires/contracts phone companies to provide the service free of charge! T-mobile is the company that currently provides the service (you don’t need regular cell phone service with T-mobile). Basically when you use the service, you type what you want to say, then a relay operator speaks exactly that to the person you’re calling, the operator hears their response and types it, you read the response on your computer. You continue to type back and forth with the operator while the operator speaks with the person you’ve called. I like the feeling of independence when using the service.
Cheers all! Merry Christmas!
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My wife was diagnosed with ALS in 2017. The ALS is slow progressing but she has lost speech and use of arms and legs. She uses the I-13 Tobii Dynavox eye gaze device, typing on the screen with her left foot, which still has some motion, rather than use the eye gaze feature, which she has found to be difficult to get used to. I have encouraged her to practice the eye gaze because eventually she will lose use of her left foot. The Tobii is her main form of communication and she uses it with her left foot throughout the day. She uses the Tobii for messages, email, text messaging, Direct TV and Apple TV (remote devices programmed in).
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I was diagnosed with als 6 months ago and was losing my ability to swallow when I was referred to the Deanna Protocol. It was developed by a doctor trying to save his daughter. She was given 2 years to live and it’s 12 years later and she is alive and moving. I have been taking this and my ability to swallow has returned and the disease seems to have stopped progressing.I am also on riluzole and going into the oral study for Radacava in January.
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Don’t give ideas. I have a 500 watt bass system from when I played fretless bass, and a 1,000 watt PA rig,90 watt accoustic guitar combo, wireless mics. Now after playing guitar from age 6 I can’t sing and cannot play instruments. Voice banking in January.
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There is a free app I use on my iPad called Notability. I can use my finger or a stylus to draw words.
Its simple to learn and use and very effective.
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I see that this string of communication is from July 2021, but in addition to these ideas there is the opportunity to “bank” your voice while you still have it, thanks to support from the Team Gleason foundation. This will allow you to use your natural speaking voice when it comes time to use speech equipment. Some academic medical ALS clinics have speech pathologists who can coordinate the process with the foundation, but Team Gleason, working with Harvard, can also provide patients and their clinicians anywhere in the U.S. with the guidance to get this done through them. Banking your voice takes an hour or less, and involves reciting pre-established statements, under the guidance of the ALS speech pathologist or some other expert.
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Hello everyone,
I was diagnosed in Sept of 2020 with bulbar ALS. I was hesitant to voice bank which was a mistake. Subsequently I did bank my less than normal voice with pretty good success. I imported my voice through Acapela with the help of Team Gleason, https://mov.acapela-group.com. I then purchases the Predictable app from Itunes and with the help of Bridging Voices I imported my own voice to use with the app. My hand dexterity is very poor so I use the app on the IPad now. Hope this helps.
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My wife lost her speech and we never worked on data bank.
She uses her Boogie board to communicate. I hear many applications available like Tobil, , AAC….. I tried to get a good ALS speech therapist and unsuccessful. Can any one suggest a speech therapist to advise what is best for her at this stage? Appreciate your response.
Thanks
Ramesh
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I am sure that the ALS Association for your state would have a good recommendation. Here is a link to locate them, just type in your state: https://www.als.org/
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I use the Speak – Speech Synthesizer app on my iPhone and iPad. Easy to use and I always have one or both with me. Unfortunately, I did not learn of voice banking until it was too late.
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My husband has ALS and has lost his voice. He has a Smartbox Grid Three. Support has been pretty good and Trinity at Bridging Voice is a big help. That said he is slow in mastering the eye gaze. It takes a lot of energy.
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Hi everyone. Great information. I was diagnosed with respiratory onset ALS last July. My voice was affected in that I could not be heard unless in a quiet room and if I tried a long sentence I became breathless. I have been on NIV with oxygen at night for several months. I recently asked my respiratory therapist to train me on an airway clearance system I had been prescribed in case I needed to cough up something that was in my lungs. My therapist recently explained that cough assist was not the only value for the machine—that it would also help with the lower lobes of the lungs by recruiting and clearing the alveoli. Bottom line after using the machine for about 4 days my voice returned. I discovered that a CT Scan last September of my abdomen for purposes of tube placement revealed the lower thorax and the finding of bibasilar atelectasis. I recently had a CT Scan of the lungs and am anxious to see if this has cleared up which might explain the return of my voice and a little less breathless during exertion, i.e. showering and dressing. May be worth an inquiry if you are not using an airway clearance system and the problem with the voice is inaudibility.
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Hi Ed,
I am intrigued by your comment regarding using the cough assist machine for therapy. The company that I got mine from made no mention of that.
How did they recommend using it for therapy? How often? Duration?
Thanks,
Len
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