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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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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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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 -
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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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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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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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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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