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CharlieFox

New member
Joined
Jan 3, 2012
Messages
4
Reason
CALS
Diagnosis
04/2011
Country
US
State
Illinois
City
St.Jacob
This is my first time posting. My Dad has ALS, he is on a ventilator, we have been home on hospice since September 2011. We used to have an ECU ( environmental control unit) for him that could control the tv, light, radio, bed and nurse call at the touch of a button. About two weeks ago, my dads fingers stopped being able to push down hard enough to press the button. It is nearly impossible for him to form words with his lips. Now I ask him yes or no questions and put my hands, he looks at the left hand if his answer is 'yes' and the right hand if the answer is 'no.' I worry about him not being able to get our attention at all! We have a communication guy who is willing to order anything to try for him to use but I'm not sure where to turn. Does anyone know someone locked-in that have a special device that I have not seen? My dad is totally aware and I feel awful that he has to lay there and wait in silence! I understand him having functions of everything he had with the ICU is a stretch, but is there at least a way for him to do a nurse call?

He already has a Dynovox computer, but it has to be positioned right in front of his face, so he's not able to watch tv or look at anything else if it's in front of him. His eyes work well but they get very watery and he get tired of trying to type of the computer after just 10 minutes or so. Most the time he is so exhausted from calibrating the eye gaze that he doesn't want to type anything.

We also tried the sip/puff button. It's a straw the goes in the mouth that connects to the ICU. However, my dad is on a ventilator so he has no control of his breathing in and out of his mouth and jaw and lips are too weak to make the seal around the straw tight.

I feel like his doctors are surprised he is still alive and that nobody realized we would make it this far. Dad still enjoys being alive and wants to stay around for awhile ( two months ago he said he'd like to live at least a year!) Can anybody give me any idea of how to help him?
 
Oops, the last two times I wrote "ICU" I meant "ECU"...too much time at the hospital over the summer!
 
Just writing to say I'm so sorry your dad and your family are in this position but think it's great that he still wants to live. My husband passed away just as his right hand (the only limb with use in it) was starting to get too weak to use. I love your attitude and your dad's. It's refreshing! My husband wanted to live longer and we wanted him to also. One thing about the yes and no answers - can your dad blink? One blink for yes, two for no? My husband and I had discussed this before he slipped into a sleep state for 5 days before he passed away. Though his eyes were closed, he was aware of what we were doing and saying to him all the time. And with his eyes closed, he would blink yes and no. Such a great feeling for all of us. Take care of yourselves. Yasmin
 
Check down below for links to other threads.

AL.
 
When my PALS was alive, we used an eye-gaze controlled computer. It has a Windows operating system, and the infra red controller operates the whole house, including opening the door and adjusting the hospital bed. We also chose a "voice" for her to "speak" the words and phrases. It was useful until she lost left-right eye movement (which was within 24 hours of passing).

I'm not familiar with the Dynavox computer, but I'd be surprised if you can't get a full selection of video, Internet and plain old television on the screen. Also, music and radio and MP3s should come through it.

Doesn't the Dynavox allow email, IM, chat, Skype, FaceTime and telephone service? Again, I know nothing of that model.
 
I just wanted to thank you for the quick responses and support! Thank you everyone for your ideas. The heads up on practicing blinking is a great tip. Also, the speak book is very interesting! We may have to give that a try! Thank you again! I will update if I find something different.
 
Atsugi: Wow, our Dynovox does do a lot, but not the bed or doors. The dynavox will play mp3s (I haven't figured out how yet.) It also will function as a tv controller, however, it has to be positioned directly in front of him in order to pick up his rye movements, so he can't use the computer and watch Tv at the same time. Internet surfing is available on it, but it's very tricky. We are very fortunate to have it though and I can't expect it do miracles.
 
Charlie, My pal was totally locked in. Could blink. We would ask, before g or after g?
He would blink. Then we went through the alphabet. He could spell what he wanted.

I pretty much was able to second guess what he wanted, but of course could not
always tell.

We used a door bell by his thumb. Sometimes he was not able to press it, but
we checked on him 24/7. I had aids available 24/7. I spent everyday at his house
through the week.

We had a brand new dyna-vox, but like your father, he really didn't want to work with
it. Be tough, stay balanced, be thankful for everyday you have with him.

Blessings,

Jim
 
Mike, perhaps you could give him the name of the program you had for Krissy on the computer.

I know that there are adapters that even allow cable tv via computer. I use one on mine.
 
He didn't express interest and it, and I've got it boxed up in the garage.

It's so very cool with the remote control of the house, that I'm not sure I want to get rid of it.
Curiously, the VA regulations don't allow them to take back computers, because they don't want to risk coming into possession of someone's personal data.
 
Sorry to hear about your situation. We are struggling with the same thing. I wish I had answers for you but I have been trying to think of any creative way for my husband to tell us anything. He has lost all movement including reliable control of blinking or moving his eyes. Sometimes he can, sometimes he can't. He has never had good enough control to do anything but look at a large alarm button on the tobii eyegaze and now that is not even consistent. Like you said, at least he can watch tv like your dad so he doesn't want the stupid screen parked in front of his face all day. The only way we really know that he needs the urinal, bedpan or suctioning is to watch his heart rate and do a lot of educated guessing. My heart aches knowing how he must feel with many valuable things to say to us and no way to get it out. He has begun sleeping a lot more we fear because he is just tired of the same old routine. I do try to get him out on the weekends but even that lately doesn't really seem to make him feel better. If we come up with something, we will be sure to share and I hope you will do the same.
 
I WONDER if a PALS can be trained in biofeedback, so that they can send a simple signal by changing their heart rate!?
 
Mike, I sent Eddie's machine back to the VA. They gladly accepted it. The salesman who set it
up, took it back to Indy. Saved me the shipping.
Anyway, I just wanted you to know. Eddie would have wanted another Veteran to have it that
might not otherwise qualify for one.

Jim
 
Hi,

I am a locked in PAL. I still have decent eye control and use a Tobii C15 to communicate. I have a couple of suggestions.

The Dynavox can be configured for different number of points for calibration- make sure it's set for minimum number.

I have an electronic hospital bed. It is raised high enough that the Tobii is in front of me 24/7. I have a 42" flatscreen tv positioned on a wall in front of my bed, lower and to my right. This provides 100% view of both tv and Tobii at all times.

I use the alarm function like the Dynavox to summon family or nurse as needed.

Lastly, if unable to position a tv while Dynavox is in front, try installing Readon Technology - Products on the Dynavox. With decent broadband internet connection you can watch thousands of tv channels from all over the world for free on your Dynavox.
I watched the 49nersGiants game commercial free last night while my wife watched some movie o the tv.

Hope this helps.
 
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