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Phil's wife

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Apr 19, 2010
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141
Reason
Lost a loved one
Diagnosis
05/2010
Country
US
State
NC
City
Wake Forest
I think some of this could be FTD playing a part, but tell me I might be wrong.

Phil's speech has gotten so bad now that when he talks it sounds like one big mumble and I can't make out a single word most of the time. I ask him to speak more clearly - one word at a time and sometimes he will do that. He won't point at anything or use any gestures - granted his arms and hands are weak, but he can use them some. He has an ipad he uses some, but he won't use the communication app on it. I ask him yes/no questions but I have to remind him to shake his head when I do - he tries to answer in long form still.

So -- is this typical FTD? Or are some PALS like this when first losing speech? If we worked to get a dynavox would he be able to use it? He used to be very computer literate, now not so much and doesn't seem to have the ability to do very much except stare at an email for a while.

How did/does your FTD PALS communicate after losing speech ability?

Thanks,

Stephanie
 
Honestly, Glen stopped communicating long before he could no longer speak clearly. For a couple of years before diagnosis, one of the big issues was that he just didn't talk. When it started getting to where I had to turn off the tv and ask him to repeat almost everything he said to even have a CHANCE of understanding him, often he would just glare at me as if it was something I was doing wrong that made it so I couldn't understand.

It makes sense considering how FTD effects the processing ability. A PALS without FTD can get frustrated at the loss of speech but understands it's part of the disease then makes a decision to use technological assistance or not. FTD causes a loss of "executive thinking".. a causes b, which leads to c.... so he really doesn't get that you can't understand him, so why use all the "stuff".

Oh, I was going to recommend a book to you... "What if it's not Alzheimer's" by Lisa Radin et al. Has some really good info describing FTD behaviors and how to deal with them.
 
Hi Stephanie,
I am lucky. My mom is one of those gritty fighters. She was diagnosed in Nov 2009 with bulbar onset Als. She lost all speech somewhere around Dec 09/ Jan 10. After that she was able & willing to use assistive technology until Nov 10. Not so long ago she was diagnosed with FTD but not with a whole battery of tests, just a few simple examinations. She would be considered much more compliant than your average, but with advanced ftd. The national communication specialists think she may be able to operate another assistive system, the neurologist thinks no. We've decided to try it and see. She is hopeful. I am frightened of failure but willing to go along.

In the meantime, a long time, what do we use for communication? It's yes/no questions only. She can still move her head, so I ask her to look at me if the answer is yes, look to the wall if the answer is no. I usually ask the question three times & take the best of three answers as she may indicate yes and no to the same question. I don't think she realises which way she has moved sometimes. She is though aware of her confusion. It is not 100% reliable method but since she cannot blink on command (a feature of FTD the ALS specialist told me), it's what we've got. She stares off a lot. Difficult to tell if this is the FTD or the withdrawal associated with preparation for moving on from life.

This may not help you a whole lot but I did want to post to say sometimes doing something (like promouncing words) sometimes not, sounds very familiar....

Courage...
 
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