Quickly losing the ability to speak

I was diagnosed in April, 2014 with Bulbar onset ALS. I have been fighting hard to keep my voice, but I am quickly losing my ability to speak. I speak, but no one understands me. I'm asking for some advice. I am computer literate and have all the usual toys (Ipad, Ifone, laptops, etc.). Where should I start? Text to speech? If TTS, what apps work best? Should I go right to the TobI or equivalent? I just need to get the ability to communicate back.
Thanks

I'm the same. Nuedexta helps my speech. VA gave me a Tobii, which I use part time.

So sorry to meet you here.

I am looking at the devices as well. I want to find out if the Tobii EyeMobile with the Dell Venue tablet will do all the I-12/15 does, with the same software package of course (Tobii Sono Key according to my speech therapist is what I would use). This way I could connect to the internet not worrying if they are going to rescind the decision to allow it on the SGD. It is also a lot less expensive.

I saw a product that was referred by a forum member that works with Mac, the head-mouse, and they have a section for Mac's.. Origin Instruments Mac OS Software - (yes Max, I went to the dark side, except cell phone).

Check your local ALSA or MDA Chapter to see if they have a loaner.

There is also a federal program that helps in this area. In Arizona it is called AZTAP. Check your state for help also. Here some info on the federal law (not the complete law, that is for the windbags in Congress) -

In 1988, Congress passed the Technology Related Assistance for Persons with Disabilities Act. Known informally as
the “Tech Act,” the purpose of the legislation was to help the states and territories increase the availability of, funding
for, access to, provision of, and training about assistive technology devices and services. Each state had to submit an
application to receive funding under the Tech Act....
Congress reauthorized the
Act in1998 without a sunset provision renaming it the Assistive Technology Act. In 2004 the AT Act was again
reauthorized, but the amended statute shifted the program focus away from systems change activities. Programs were
now responsible for allocating a higher percentage of their resources to four “state level” activities: device loans,
device demonstrations, AT reuse activities and alternative financing programs. A smaller share of the resources would
go to “state leadership” activities including public awareness, information and assistance, training and interagency
collaboration. The AT Act now emphasized providing statewide services that would directly improve the ability of
persons with disabilities to learn about and obtain assistive technology.

There are many options. The ones that are right for you now depend on what still works for you.

Here is what I did:

1. Early on, I banked my voice with ModelTalker
2. I downloaded my ModelTalker voice to both my PC (a variety of laptops and desktops) and Android phone.
3. On the PC, there are many tools that can generate speech. The ModelTalker tool I downloaded works OK for me (for now).
4. On the phone, I downloaded the Talk app. It works with ModelTalker and other voices

All of this works fine for me, because I can still type well enough to efficiently construct phrases I want to speak. My voice has not yet left me (though it sure has gotten worse), so what I have done so far is sufficient for my needs. I plan to investigate the IVONA app next.

I have also downloaded the google voice on my phone. It is higher quality than the ModelTalker voice, but so far it speaks with a female voice.

All of this has been a zero cost, except for an upgraded headset to record my voice (Sennheiser PC8 for less than $50 from Amazon).

I have started looking at other solutions that will be more appropriate when I lose my ability to type well enough to form phrases I want to voice, but don't have much experience in that area yet. My typing is getting worse, so I know it is coming.

Steve

Swalker,
Thanks for the reply. I noticed that you are in Vail. I'm in Grand Junction. Do you know of a support group in our neck of the woods?
Regards,
TJ (Betchaman)

I sure hate to see another Colorado person on this forum Sorry to have to meet you here. Grand Junction sure is a spectacular place. I Have enjoyed the times I have spent there and at the Colorado National Monument.

I don't know of any support organizations anywhere between Denver and Grand Junction. All my doctors are in Denver.

I wish I could be of more help.

Hi everyone,

My name is Dereck, I’m really interested in this thread and was wondering if I could get your feedback on a new ACC device my team is working on.

XAVIER is thought-to-text software in development by students and alumni of Johns Hopkins University and the University of Southern California, aimed at allowing users to create text on their computerized device through thought. Basically, users wearing a brain-computer-interface headset can simply visualize words appearing on their computerized device; our software processes their neural signals in order to predict and produce the users intended word as text or synthesized speech. This software was conceived as a new Speech Generating Device (SGD) for use by individuals with severe speech impairment since current SGDs have several limitations including prohibitive cost and difficulty of use. The conventional speech generating devices have a significantly slower rate of voice output than natural speech and also require some muscle movement for their operation. As muscular degeneration progresses, they become increasingly difficult to operate.

The idea is that our software removes motor function from the equation and we hope that Xavier will be less expensive, faster, and easier to use than any currently available speech generating device or speech to text software.

Do you think individuals in the community would be interested in the project? Please let me know if you have any questions or suggestions for us!

Thanks so much for your time and consideration!

Dereck

Sounds good.

I am about 30 miles from USC and have a Tobii that I use part time. I would welcome visitors or emails if you need.

Dereck, perhaps you could share a paper, poster, or website?

Greybeard, I would love to connect with you by email and hear about your experiences with the Tobii, and learn more about what we can build that would work well for you! I won't ask for your email on the forum but you can absolutely email me at [email protected]. I'd love to hear from you.

Atsugi, we're still in the very early stages of development. I do have a slide deck from our application to the Hello Tomorrow Challenge, an international innovative technology competition.

I have completely lost the ability to speak along with a lot of others problems, I miss talking to my mate what and where should I go to get some help ILive in Canada

>I have completely lost the ability to speak along with a lot of others problems

we know!


look here for help .

Merren said:

where should I go to get some help ILive in Canada

Click to expand...

Holy crap, you were diagnosed years ago and just now found this site?!
First off go here and introduce yourself.
Next, don't hijack existing threads to ask for assistance, it's rude and could easily get overlooked. Start by searching the forums for your answers and if not found start a new thread in the appropriate forum.

There are some of your fellow Canadians here who should be able to supply specific answers.

RE: Derek. I would be interested in knowing more about your program. How are you going to test and then market it? Availability? I have not inquired yet as to insurance coverage for TTS, or AAC, devices. I currently have a small kindle, and a small android. They are not easy to type on due to their size. I use a Windows OS on my laptop. I do not have a smart phone, as I live in the boonies and have poor service.

Hey there Tawill. Take it offline. we don't need to follow it.
Derek gave out his email above:[email protected]