Help with the little things...

[jennifer79]

My dad was diagnosed in February with ALS, it has gone quite fast. He is already bedbound with no movement but in his right arm. I was wondering if anyone had in tricks or gadgets that I could buy to help him change the channel on the remote, also what about with using a cell phone. I know this is probably little things to some people but it is important to him so that means if I have to sit there 24 hours a day and change the channel and hold the phone so he can talk to his grandkids I will.:-D

Thanks
Jennifer

 

[lgelb]

Jennifer,
What is important to his staying as independent as long as possible is never little. I am assuming from your mention of "talk" that he can still speak. If I'm wrong, let us know.
Not sure why he would be "bedbound" though? Does he have a wheelchair?
There is a voice-controlled remote (RCA brand) on the market and of course cell/traditional phones w/ speakers. For dialing, if he uses a computer, Skype or another chat app can add video as well, so he could see the grandkids as well as talk. He can use a switch and a virtual keyboard. In addition to or instead of TV, an iPad can be used for phone/video calls and to watch movies, TV etc. on Netflix, Hulu, Amazon and the like, and the major news and content networks now have much of their programming on line as well. Smart phones also have voice assistants and the iOS is receiving some accessibility upgrades in the fall; though nothing is official yet, switch access and head control are in the betas so far.

Those are probably the simplest, cheapest solutions for now unless someone has better. You will find a lot of pricey ECU products out there, but their durability in any particular case of ALS is questionable.

You can find my review of the remote on my Examiner page (Seattle Assistive Technology).

 

[Nikki J]

Hi Jennifer
Is his voice still good? Certainly is it is he could make calls with an IPhone. There are also some apps for tv remote although I think they are dependent on your tv service provider

Do you have an ALS clinic? They should be able to help if these don't work

 

[Ms. Pie]

Why is he bed bound? Doesn't he have a power wheelchair?

 

[jennifer79]

Thanks for all the ideas. His physician is at the mayo clinic in Jacksonville plus he has a neurologist in savannah. He is having to stay in his hospital bed for the past two weeks because his power wheelchair isn't ready hopefully it will be in this week, the messed it up twice . My dads disease progressed rapid and he can no longer even sit up in the manual wheelchair. He only has movement in his right couple fingers. His still his voice but it is starting to go. He is on a portable ventilator and we found out this week he is having fasculations in his tongue and throat so I am assuming that it want be long for his voice to go?

 

[adozi]

I know that DISH network has an app for a smart phone, that works via wifi. I used it, and it works well.

 

[Wesley Cheek]

I would like you to keep up the good work.You know how to make your post understandable for most of the people.

 

[adozi]

I know a lot of people can't afford this, but sometimes they get donated to ALS or MDA loaner closets:
I have a Tobii eye gaze computer. It is just a normal windows computer, but it reads my eyes. I can get online, read e-books, or control the tv or anything with an infrared sensor. Even with just the eye gaze application, in case your dad doesn't use computers, you can talk, Control your tv, skype, text, play music, and keep a calendar, and play simple games. Here is a link to info on other communication devices : Chapter 6: Speech and Communication | Everyday Life with ALS: A Practical Guide | MDA