Technology

[Texasmom]

Hello everyone. I am a first time poster but have lurked on the forum for quite awhile. I have gained lots of needed insight as we traverse this awful disease process. Thank you for that. My husband was diagnosed in October 2018, first at Scott and White in Temple, Texas. From there we got a second opinion in early November at the Mayo in Rochester. We finally ended up in Houston with Dr Appel in December of the same year. Since that time, my husbands disease has progressed to where we have been told he is a fast progressor. He has lost the use of both legs and both arms. His voice is still fairly strong most days, although he has been fighting raspiness for over a month. No breathing problems as of yet. My question is about technology. I will admit I am technology stupid! Since he can’t use his hands much any more, he has thus lost the use of his Facebook and the general use of his phone. He is also unable to operate the TV remote. I am wondering what our next steps are? Do we move to eye gaze technology? And if so, how do I go about this? He tells me he is feeling trapped and I desperately want to solve this for him. Any advice will be greatly appreciated!!

 

[KarenNWendyn]

Sorry to have to welcome you here, Texas, but welcome. I’ll let others address the tech question.

 

[Nikki J]

He can do voice to text if his voice is good. It would likely be a good idea to get started on eyegaze too as there is a bit of a learning curve. There are quite a few options these days. What does he have for phone and computer for operating systems?

where are you going for care? Clinics generally have either inhouse communication technology or they refer to a program The clinic speech therapist would be a place to start

 

[Texasmom]

Thanks for your replies. We go to Houston for our clinic visits and will probably be returning in late January. We have not been since August. Our biggest problem is distance. We live in the panhandle of Texas in a small town. We are about 6 hours from Dallas and it is a 10 hour drive to Houston for clinic. There are no Support organizations near us that I have found. He currently uses his IPhone 8 Plus for his needs. He has a Mac computer but it is too heavy for him to use anymore so he prefers not to.

 

[patrick123]

Hi Texasmom,
Now could be a good time for an augmentive communication device. Al you would is Rx from your neurologist. Stating you could benefit from a device. I'm on my second device from Tobii (You get a new one every 5 years).
Patrick

 

[Nikki J]

Call the clinic. If you are going next month they should be able to set up an appointment for you with whoever they use. There are quite a few options for communication devices and more people will be along shortly ti tell you what they use.

 

[KarenNWendyn]

I will add that I have an Eyegaze Edge. It is covered by insurance. If you purchase the Eyegaze Edge Links (a type of dongle, sold separately), you can use the eyegaze to operate a Mac, and I am told also an iPad. I’m not techy either. I have the Eyegaze Edge and the links but haven’t hooked it up to my iPad yet.

 

[Spoon77]

I have a PRC Accent 1400. Very similar to the tobii devices. The 1400 is a 14" tablet that can mount to my powerchair or on various stands. I know that it can be used as a remote control as well as a speech generating device.

I also have a tobii 4c that connects to my pc. That is what I am using right now. It is about $150 and I just paid out of pocket. The advantage is that you can start using that right away. No insurance wait.

 

[KimT]

Another resource for monetary assistance with eye gaze technology is the Gleason Foundation.

 

[Doglady]

As long as voice holds out Amazon Echo Dots with Alexa can be set up by Best Buy to control your tv, play music, communicate with others, and control lights (using smart bulbs), etc. Our local ALS Assn has these technology packages available for free set-up but even if yours does not you might still want to give it a try. It’s been really helpful.

 

[nona]

I have a Tobii Dynavox and there is a function that allows us to synchronize remotes, so I'm able to control my tv, roomba, and air conditioner with my eyes. I'm not sure how the Tobii compares to other eye gaze technology, and it has its quirks, but the combination of Windows ( allowing me to use Facebook, this forum, YouTube, news, etc) s and the Communicator software has been my lifeline.