Need Advice - nighttime signal/alarm for Pal in distress

[KarstBoy]

What do you use to be awakened at night by your Pals?

I sleep in the same room as my Pals and up to now, if she needs me, she sends me a text with her iphone . When the text is received by my iphone , which is bluetoothed to my Bose noise cancelling headphones, the text alarm sounds in the headphones which wakes me up. The impending problem is she only has one barely functioning hand which I estimate will be completely useless within a matter of weeks. When that happens, we're in trouble. She can't talk and be understood, she won't be able to type anything to send to me, and her legs are almost fully paralyzed.

Desperately fishing for solutions!

 

[affected]

We used a baby monitor as we were not in the same room because we could not fit all the equipment my husband needed in our bedroom. Basically, once we got the hospital bed working well, and used a very small dose of morphine at bed time, my husband was able to sleep most nights.
Before this, he was up and down all night and it was horrible for us both.
Even though he could not speak he could grunt, and I slept with the speaker right beside me.
I usually wake to go to the loo a couple of times at night and I would always check on him quietly as well.

You can also get a very sensitive switch called a jelly bean switch and operate a call button or doorbell type alert with that.

 

[lgelb]

Even a cheek or forehead muscle can operate a switch (which is usually taped to whatever can move), if there is one muscle that is still reliable, or a head movement. If she will be using eye gaze, that can operate alarms. As Tillie says, a grunt can be a signal. We also talked about this here.

 

[affected]

Usually for us, the problem was not so much getting me alerted, but working out what was needed.
I had communication charts that I made myself, for situational communication.
So I had a chart for the common things that might be needed at night such as - too hot or cold, change position, fluids, meds, toileting.

 

[Jimi]

If she can still move her head then head tracking is a good way to control a phone or computer. If possible I would use this over eye gaze. Head tracking using the device camera or a purpose built head tracking device (like head mouse nano by origin instruments) are much more versatile in terms of device position. For control of an Android smartphone you can use:
Eva facial mouse (free)
Eva facial mouse pro (pay - support the developer)
Jabberwocky AAC (free)
For a Windows PC:
Enable Viacam (free)
All four of these programs allow full hands free control using the device camera. At night a little room light is required. I would use a color smart bulb dimly lit red.
The origin instruments requires a small stick on dot for tracking and can work in complete darkness. It costs about $1k.
If eye gaze is your only option, windows 10 and I believe 11 have eye gaze control built into the operating system. You would need to buy the eye tracking camera. The Tobii eye tracker 4c if you can find used shouldn't be expensive. Search windows eye control for info on eye trackers. Eye tracking works in the dark. The biggest drawback is that device position is much more particular with eye gaze.
For text to speech I use the Android app, Speech assistant AAC.

I also use a Google home mini. From my phone I can broadcast pre made messages from my phone using Android app Action Blocks.

I also made a cheap emergency alarm using a smart plug, dc power supply and piezoelectric siren.

There's plenty of free/inexpensive ways to communicate. Just takes practice

 

[KevinM]

Jimi, I have to say that you are simply amazing and an inspiration to us all. The practical knowledge and know-how you share is beyond helpful, and though you make it sound so easy I know how much research and effort went into everything you pass along.

You have much more to give, my friend, and I’m so glad you are here. Best, Kevin

 

[Jimi]

Thanks Kevin. It's amazing what you can do with no job, a limited budget and the fear of being locked in and helpless. Head tracking is inexpensive and with practice, works really well. I'm lucky that my neck muscles are still giving the few inches of movement required. I've been using head tracking for about 3.5 years now. I hope to have another year of strength left, maybe more.
This past September while in the hospital getting a trach and feeding tube, all I needed was my phone and a mount clamped to the hospital bed. Same mount I used on my wheelchair. Everyone was amazed at my ability to communicate and couldn't believe it was a smartphone and a free app...

 

[KarstBoy]

Thanks everyone for the suggestions. Are there any videos showing how these devices function? Having a hard time envisioning not only what would be best for my wife but which ones would not be prone to false alarms.

 

[Jimi]

I tried to give you several ways to communicate with out the use of hands. No special device. Just using one of the apps and either an Android phone (that means almost every smartphone except apple/iPhone) or a computer that uses the windows operating system and has a webcam.
I thought this would help you because you stated that communication was going to a problem in the near future.
Can she move her head a few inches? If yes, there's free apps available. If no, then you need to look into eye gaze systems. I gave you an example of an inexpensive windows solution. It might be better for you to seek professional help. But the free programs I listed will work very well with some time and practice invested. I made a YouTube video a little over a year ago giving some examples of what can be done with the jabberwocky AAC app and an Android phone. If this still makes no sense and you can figure out how to pm me, we can set up a phone call or video chat and my wife and I can try to help.

 

[lgelb]

Just a note that even when someone can no longer move their head reliably/comfortably, sometimes they can still operate a mouse or switch with their tongue, or trigger an ability switch (that connects to another device, such as a tablet or door bell) with a forehead, cheek, foot or other muscle. Or a "hard" blink, sip 'n' puff, or bite. So it's not automatically, lose neck muscles, go to eye gaze.

And, of course, for those who prefer Macs or iOS, there are comparable solutions to Jimi's.

As for false alarms, that should not be a problem since these methods require a deliberate act to activate the alarm.

 

[Jimi]

I'd like to know what programs for Mac or iPhone that provide head tracking and complete device control with the built in web cam

 

[Diane H]

You need a simple call system that can have an ability (capability) switch added when the button on the basic call system can no longer be pressed by an ALS patient. An ability switch plugs into the call button transmitter. It has a large, easy to press with light pressure surface and can be positioned anywhere the user has enough movement to nudge it; hand, foot, elbow head, etc. Unfortunately, the call transmitter needs to be one powered by standard batteries, not today's small lithium batteries. That rules out nearly all of the wireless doorbells. If they do have alkaline and not lithium batteries, you have to adapt them by wiring in a battery interrupter (a small copper disc wired to a female jack) to plug the ability cord into -- easy to do.
The only one that is already adapted to be able to plug in an ability switch I have found (and have been using for years) is from Wireless Attendant Call Button Vibrating Alert AC
The call system is reasonably priced between $50 - $70 but the ability switch is not included. Several varieties of ability switches are available online and can be anywhere from $50 to $180.

 

[reqwhit62]

There is an alarm that you can attach to the pillow and they came move their heads to activate.

 

[lgelb]

Welcome to the forums, RW. We were presuming from the OP's description that his wife would not be able to move her neck, so that is why we moved on from a pillow switch.

Diane is right that a door bell is simplest if someone can hit the mark at will with or without an ability switch.

For more comprehensive eye gaze use, Jimi, the Eyegaze line supplies MacBooks with eye gaze built in. The Tobii iPad eye gaze interface is called TD Pilot. Another option for iPad Pros (12.9" 3rd-5th gen) is the Skyle 2.

There are other less pricey options. Eyeware Beam uses the iPhone as a webcam for Windows. The I Have Voice app offers iOS eye gaze selection of custom phrases and basic needs in more of an AAC app format.

iOS devices with the TrueDepth camera found in recent models, have the most capabilities when it comes to eye gaze.

Best,
Laurie

​

 

[KarstBoy]

I tried to give you several ways to communicate with out the use of hands. No special device. Just using one of the apps and either an Android phone (that means almost every smartphone except apple/iPhone) or a computer that uses the windows operating system and has a webcam.

Sorry for the long response time folks but it's been crazy & hectic last couple of months. Having to be the CAL of a rapidly deteriorating PAL and dealing with home mod contractors at the same time leaves almost NO free time.

Jimi, your input is appreciated but not only do I not have an android (I have an iphone/pad), I'm also not especially technically inclined. I want something easy to understand that I can order online or buy in a store that will do the job. No time to build anything.