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pscheffel

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Lost a loved one
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12/2011
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Tx
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NB
My Mom has some FTD with the bulbar onset and seems confused at times. Even when she spells something it can take her a bit, not all the time though.
Her speech is becoming harder to understand and I so badly want to find something she can use to communicate with besides the small dry erase board I got her. When we were at clinic they showed us the iPad and the apps that she'd be able to use....but the price is expensive and I am not even sure if she would be able to use it or if it would be confusing for her......she said she does not want anything to help her with her speech...I plan on talking more with her and my family tomorrow to find out what she is willing to try when her speech is completely gone. Anyone have FTD/confusion and try using the iPad or other speech devices and they not work or did work?
Thanks guys!
 
Rog uses the iPad/iPhone with an app called speak it (around $2) and there is also verbally that is free. He has a Dynavox but it is heavy if you are mobile. He does not have FTD so I can't answer that part. He'd rather use his phone than write on paper.

Jen
 
My husband was never officially diagnosed with FTD, but I am pretty sure he has it. He is also Bulbar. He has been using the Ipad for over a year to talk. We use Assistive Chat for him to talk. It was around $30 something.
 
There's also an app for the kindle fire and possibly phones that was developed for nonverbal kids to communicate using pictures and phrases... called Tobii Sono Flex... I think it's very cheap or free
 
Just from my experience with FTD, I would opt for a program that did not require spelling out words or forming sentences. You might want to use a program that brings up pictures to identify her wants or needs. I'm wondering why the clinic suggested an iPad instead of something that would be covered by insurance. Was she evaluated by the speech therapist?
 
Thank you. I will look into something with pictures and simple phrases. That would be better. I think......I don't think my Mom is confused all the time, just some things. She will not type a long email to me. Believe me, I have tried communicating with her this way as well. She knows what's going on pretty much. We go to clinic evert 3 months, so they do not see her day to day. I have stared communicating with them last week by email and phone, so they know she's getting worse. Thank you again!
 
We are Bulbar and have Language variant FTD. Yep, we use an iPad with Verbally. My Sweetheart has no speech, at all. It works fine, as he can choose from a list of words that are already spelled out for him. I'm just about ready to purchase the upgrade ($100) as I want to be able to store emergency messages like "hello, please don't hang up. I use this electronic device for speech. My name is.........I need and ambulance at......"

One of the things they told me was that my HB would not be able tp learn new things. About 7 months ago, he picked up a book on sign language that someone had bought him a year ago and he taught himself the alphabet. That has been a Godsend!
 
Do you have to pay a monthly fee for all that has been mentioned here. My niece could not afford a fee every month. She had a stroke and so far no one has helped her I think it's were she lives. She can't talk she lives in Mo
 
With speak it, you pay once around $2, basic verbally is free!

Jen
 
I think most of them are a purchase. You can get the "lite" version for free or really cheap, and can use it on a phone... but that might require the data plan... so I would recommend putting it on a tablet or kindle... or ipad
 
Thank you she can't afford another monthly payment and having this stroke she knows what she wants to say except she has a problem getting her letters in a word right and then it makes her mad. I have been trying to figure some way to help her. Her mother is eighty and not one to be up on stuff and we live six hours away but if I could get something she could use my husband or another niece would deliver whatever we got
 
So would a kindle fire work with the apps? thats a bit less expensive....nevermind...i see kindle fire mentioned...that would be great!
 
I will have my daughter check out and thanks a lot
 
Yes I have the lite version on my kindle fire... which you can buy the refurbished version for $30 cheaper. And she could also get library books on it, as well as movies.
 
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