My PALS does not want to use his eyemax

[brooksea]

Thanks, AL! LOL

 

[trfogey]

My FIL used to be able to communicate with us via his ipad and no one ever got impatient with him waiting for him to type a response. We were all grateful that he was able to do that as long as he could. Those days are gone now.

Ahhh, but you are getting impatient with him now. That's the reason you are here. He won't use the eyegaze and you think he ought to, and you're asking our advice on how to get him to do what you think he ought to do. As opposed to working with him to find out why this new piece of equipment isn't working out.

And no, I know I could not do what you are suggesting for a day or probably even for an hour. That said, it does not mean that I do not have a very good understanding of how unbelieveably, gut-wrenchingly hard this must be for him. That is the great thing about being sentient beings, humans can understand how something would feel without having to actually experince it. When I think about how this must be for him, it literally makes my heart ache.

An aching heart isn't getting the problem solved, is it? Trust me, regardless of how empathetic you are and how hard you try to project yourself as being in his situation, you still can't know what it is really like for him. And it borders on condescension for you to think so.

When we first learned about the eyemax, we were all very hopeful...maybe too much so. Since then, I feel like we all have tempered our expectations. My husband and I both sat in front of the eyemax and tried it ourselves. It was exhausting. And you are right, it does suck. But it is the ONLY option we have right now. And while it is certainly his perogative to keep his feelings to himself, it seems like our time with him is running out.

It's not the only option. It's the only option that he can do by himself, but it's not the only option. There are old-fashioned ways that are just as effective at getting communication going in enough detail to find out what the problems are and how to overcome them.

I can see the frustration in his face when we are asking him 20 questions trying to determine what he wants or needs. We are all dedicated to making his life the best quality that it can be. We thought this tool might help us accomplish that even just a little bit.

All I want is for him to try. For a minute or two.

Why? He already tried and he doesn't like it for some reason. That's what you've got to find out -- what doesn't he like about it and how do you fix that? And if it can't be fixed, how can you work around that?

It could be something as simple as him just not liking the voice that came with the machine. We all have a notion of what we sound like and it can be a crushing blow for us to give that up and go with an artificial substitute. How it sounds to you and others doesn't matter, as long as it's intelligible. But it might matter a lot to him because it is the new him. And if he can't stand to hear it, he'll remain silent.

But, again, it might be something in the ergonomics of using the thing that makes it unpleasant for him. That might require some more specialized help.

I've attached a couple of files at the bottom of this page. It's a simplified manual letter board and the instructions on how to use it. Use the letter board to facilitate your ability to get beyond yes and no answers and you'll find out what's really at the root of things.

I came here merely trying to gain some understanding and insight.

Hopefully, you've gotten some. Perhaps not what you were expecting, but a different look at things, for sure.

 

[pamdemonium]

Thank you for the letter board and instructions. I have saved them off and will definitely give it a try.

 

[lizzie11957]

It can be very frustrating to use any device which is not your own voice. First of all it takes much longer to respond and it's hard to not notice the other person's impatience even if they don't mean it. I use an iPad with prologue 2go ap. Even though it's a good program my communication is much slower than what I am used to. One afternoon I was writing a question to my sister. By mistake, she responded in writing. What we found was that if we're both using the same form of communication, we are communicating at the same pace. It was truly an aha moment for us. I'm a teacher and plan to use this in my classroom. We will all use the same form of communication. I think the benefits to the students will be numerous. So, my suggestion is, use writing to communicate to him. This way you're both " on the same page".

 

[lizzie11957]

Please be patient...
I'm having a tough day. This frustration has been building for a long time and I don't know what to do. I have PBP. My speech is pretty much gone. I got the IPAD with prologue2go, but it still takes longer to respond than if I had my natural speech. I've had people ask me a question and then walk away or go on to another topic before I can answer. Today, at the grocery, I saw a person I used to work with. She said hi and I kinda waved and smiled but kept walking. I know she must think me rude, but I didn't know what to do. My husband was with me and asked ms who that was. I waved my hand at him like oh it's not important. He then said, You're always cranky! I could get over just this one incident, but situations like this are happening on a daily basis. I feel like a non person.
__________________
"Life is not about waiting for the storm to pass, it's about learning how to dance in the rain."

 

[brooksea]

Lizzie,

You may have already thought of or done this. I made cards for my husband and laminated them, so he could use them while he was out. They were business card sized and had various phrases, such as: Hello, can you help me, where are the restrooms, etc... and also one explaining he had Lou Gehrig's with emergency contact info. I punched a whole in the cards and thread a nylon string through, so he could hang them around his neck. If you can still lift your hands/arms, that may be a partial solution to social situations in a pinch. This no longer really works for my husband, as he has lost so much arm strength and he can't manipulate the cards.

 

[lizzie11957]

Thanks, that's a good idea. Conversations are the hard part because I can no longer keep up the pace of the conversation so I tend to get left out.

 

[LauraW]

Pam,
I'm so sorry that you are going through this right now. It is so frustrating, I know. My Mom has a dynavox but she has lately been trying to trace letters in the air to spell words which is REALLY frustrating because she can only lift her arm so high and sometimes I just want to scream. I have redone her dynavox pages much like what someone else said. She has only to tap certain boxes to get sentences. i know your Dad doesn't have any movement so this probably isn't an option for you. My thoughts and prayers are with you and your family.

 

[kelly]

Pam....we live in saratoga...is there any way we can help you? My husband uses his eyegaze to communicate...write speeches...raise money for the ALS center, did all the kids Christmas shopping. It has given him quality of life back. I would love to send you some of my hubbys speeches ...maybe sharing them with him...and knowing that he typed them all on the eyegaze might help. Thinking of you!
Kelly

 

[pamdemonium]

Kelly-
You are right up the road from me. Small world.

It is really wonderful that your husband has mastered the eyemax. He sure can do a lot with it!

I would love to read some of your husband's speeches and share them with my family. Would you be able to email them to me? My email address is: thrashpa at nycap dot rr dot com.

We are going to see my inlaws this weekend.

Thank you.

Pam

 

[Joanne Kaufmann]

Hello Pam,

There may be adjustments that can be made to the EyeMax System and/or to its position that might make it easier for your father-in-law to use the device. If you would like, you can contact Kevin Joyce, your local DynaVox sales consultant. He may have some ideas of things that can be done to make the system easier to use and hopefully alleviate your father-in-law's reluctance to uset he system. Private message me for contact details.

Kindest Regards,

Joanne Kaufmann
Communications Manager

 

[brooksea]

Thank you, Ms. Kaufmann for your attention to this pALS dilemma! Thank you!

 

[pamdemonium]

Just to close the loop on this. My husband and I printed out the manual letter board and instructions provided by trfogey and tried them out ourselves just to get a feel for it. We liked it a lot. We took them to an office supply store and has them printed out on two piceces of colored card stock (one for the front of the board and one for the back) and them laminated together. This setup completely stopped the front and back letters from bleeding through when held up in bright light. We had several sets of these made up so that they could handy at all times.

This weekend we went to see my in-laws and showed them the cards and guided them through how to use them. They both seemed to really like it. I personally used it several times over the weekend to assist my father-in-law in getting him positioned to his liking.

Thank you to Trfogey for the suggestion. Sometimes the simplest solutions are the most powerful.

 

[Ms. Pie]

Excellent Pam! I've saved copies for myself when the time comes. Thanks Trfogey!