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KrisS

Active member
Joined
Aug 19, 2012
Messages
62
Diagnosis
04/2011
Country
US
State
CO
City
Thornton
Hi, I'm new to his forum.

I'm Kris and my husband, Dave, has ALS/FTD. I have been reading posts from this site for several months now and they have helped me cope with daily life with ALS/FTD. I finally decided to become a member so I can participate with all of you. I hope I can be of help to some of you, yet I know I need so much from you. Dealing with ALS/FTD is more difficult than those who do not provide care on a daily basis can understand, and each of us has our own journey to take. I know it's not the same for any two PALS or CALS, but I hope to cope a little better with communication with others going through similar struggles.

Dave was diagnosed in April 2011. He has had a pretty steady decline ever since. I am his full time caregiver. We have 3 boys that are grown 22, 29 and 31 years old. We also have quite a bit of extended family. Everyone wants to do something, but because of the FTD, Dave's communication is almost nonexistent. It makes it harder for me to leave him because even though he has a Dynawrite speaking devise, he can't communicate with others very well. He needs assistance with all his daily tasks. Subsequently, I am uncomfortable leaving him with anyone that can't tell what he needs by his actions. They really have no way of knowing what he wants or needs. This also makes them uncomfortable. My parents spend quite a bit of time with us and can care for him for short periods. I just don't want to put too much on them. Has anyone out there had the experience of extreme communication issues? It's not just that he can no longer speak because of the bulbar issues, but he has a hard time coming up with the right words to type and usually can't spell most words correctly. It makes quite a puzzle sometimes. I'm at a loss for what to do next. Any advice would be greatly appreciated.
Kris
 
Kris, I'm so sorry about your husband. I wish I could offer some advice about how to improve the communication issue, but I can't. My husband had many gadgets that could have been used: Dynavox, iPod, iPad, Words+ on Toughbook, SmartNav and other simple programs. He wouldn't use any of them when he was able, throughout his progression. He felt that my son and I should understand him and became angry when we did not.

Does your husband have enough use of a hand or foot that he could mouse click or button click? Do you think he would use a picture program to communicate basic needs or does the FTD interfere with that?

It sounds like you are doing the absolute best you can, under the circumstances. Have you considered Hospice? That might be something to look into in order to take a bit of a break, then your parents would not have to be called on as much to help you.

My heart goes out to you.
 
I wish i could help. The only thing I could think of is maybe you right down a list of common phrases, and maybe number them. I don't know jut trying to think of something.
 
Hi, I'm new to his forum.

I'm Kris and my husband, Dave, has ALS/FTD. I have been reading posts from this site for several months now and they have helped me cope with daily life with ALS/FTD. I finally decided to become a member so I can participate with all of you. I hope I can be of help to some of you, yet I know I need so much from you. Dealing with ALS/FTD is more difficult than those who do not provide care on a daily basis can understand, and each of us has our own journey to take. I know it's not the same for any two PALS or CALS, but I hope to cope a little better with communication with others going through similar struggles.

Dave was diagnosed in April 2011. He has had a pretty steady decline ever since. I am his full time caregiver. We have 3 boys that are grown 22, 29 and 31 years old. We also have quite a bit of extended family. Everyone wants to do something, but because of the FTD, Dave's communication is almost nonexistent. It makes it harder for me to leave him because even though he has a Dynawrite speaking devise, he can't communicate with others very well. He needs assistance with all his daily tasks. Subsequently, I am uncomfortable leaving him with anyone that can't tell what he needs by his actions. They really have no way of knowing what he wants or needs. This also makes them uncomfortable. My parents spend quite a bit of time with us and can care for him for short periods. I just don't want to put too much on them. Has anyone out there had the experience of extreme communication issues? It's not just that he can no longer speak because of the bulbar issues, but he has a hard time coming up with the right words to type and usually can't spell most words correctly. It makes quite a puzzle sometimes. I'm at a loss for what to do next. Any advice would be greatly appreciated.
Kris

If he can move his head look into getting a Dynavox computer it is covered by Medicare they even cover repairs all he has to do is move his head or blink his eyes and it will talk for him
 
If he can move his fingers, there's pictorial app on the android/kindle, probably on the pad, called Tobii Sono Flex... the lite version is free, the full version is $100. Since it was created for nonverbal children, it is all easy pictures, and you can customize to what you need.
 
Hi Kris....so sorry to hear of the diagnosis. We were diagnosed with Language Varient FTD in Dec of 2010, and ALS in Oct 2011, so we are right there with you. My husband sounds just like yours, and I'm in the same predicament. I bought all sorts of gadgets trying to find one he'd use, to no avail. One day, last February, he picked up a book on sign language and taught himself the alphabet! I quickly memorized the signals and that's how we've been "communicating." It's slow, tedious, and his spelling is atrocious, but you use what you have, right?

I'm not suggesting that you go out and purchase a Sign Language book, but rather just present different options; pictures, iPad with Verbally or Speakit or something, paper and pencils, a Boogie Board. If he wants to say something badly enough, he may pick the one that's the most comfortable for him.

So sorry to be on this cruise with you. :(
 
I like the idea of having a list or lists of phrases keyed in to any computer he's comfortable with. They could include people's names and his wants and needs. He could also use a personalized letter board. You can ask your speech therapist or find many samples online. Then all he needs to do us click or point. So sorry you're all going through this. Yasmin.
 
Thank you for all the suggestions. I am going to look into a picture program. That is something we haven't tried yet. I will also contact his speech therapist to see if she has any new suggestions. Sometimes I think I am out of options, but I know there has to be more.

Thanks again for the great support.
 
Good luck, Kris. sounds like you're on the right track.
 
I sympathize with you and your position. My wife of 39 years just passed away from this awful monster of a disease. FTD makes it much more difficult. I am sure she had frontal lobe traits because she changed in her personality so drastically. I call it the invasion of the body snatchers and others have copied me on this. Sometimes I did not think I knew her a all. Please hand in there. Luckily, when the frontal lobe is affected patients seem to pass away quicker. As for this demon of a disease, I say the quicker the better. Having been through it for 2 years, I know.
 
Had Bruce lived since he was Bulbar and FTD, he was the sam e as your husband, my next step probably been colorful poster board with big words ont hings that could be wrong, or what he nedded. Hopefully he could still nod his head to my pointing.. So sorry.
 
I am thinking a picture program will be easier for my Mom as well, we will soon see...
 
Kris, you might want to consider using pictures.

I have a son who was speech delayed. You might be able to get a therapist who can make up the cards w/ common words that you would use. Eat, bathroom, t.v., etc. He can point to them. Lack of communication is hard for the PALS & CALS. Hopefully that will make things easier.

Also, my dad who had bulbar ALS would ring a bell when he needed your attention.
 
Kris... I agree that your best bet might be pictures. It's hard to explain to people that it's not really the inability to talk that is the issue it is the inability to find the word... doesn't matter if you say it, type it or use a device, if there's no word to project it's tough.
 
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