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Corina

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Joined
Dec 23, 2015
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5
Reason
Loved one DX
Diagnosis
02/2015
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US
State
CA
City
Somewhere
I'm wondering what others have experienced in their loved ones as far as speech. My mom can't speak anymore but we started noticing significant changes about 4 months ago. She wasn't able to form coherent sentences anymore and would mainly only repeat the words "I know" and "Benny" (my dad's name). Anything we said or asked her was replied to with "I know" but she could signal yes or no. I've been reading various threads and noticed people saying that their loved one wouldn't admit that the disease was progressing or that they were ok with certain things, like having a peg tube. Being that my mom hasn't been able to talk for a few months now, I'm wondering if something else is going on or does it go back to every case is different and every person experiences different things?

BTW, I'm so glad I found this forum. It's so relieving to have people to talk to who understand and have been through it. In a way I hate when friends of my mom come around who haven't seen her in over a year and have all these opinions of what should be done but don't understand the disease at all. I try to inform them but some how I always get one of two reponses from them. 1. You need pray. Yes, because I haven't already prayed, begged, pleaded and cried to God to please make this all better. 2. Have you tried natural remedies? Right, because if there were a natural remedy for ALS and FTD the whole world wouldn't already know about it.
 
Hi Corina,

there are two main ways FTD displays - behavioural and semantic.

Semantic is the language variant. Sorry that all sounds garble, but those are the terms and will help you if you do internet searches.

My Chris started with behavioural FTD at least a year before his first ALS symptoms. He was rapid progression and moved into the language issues in the last 4 months or so of his life. Even though he was already barely talking, it was an obvious thing about the ability to structure sentences, remember the correct words and give the appropriate response.

He would say yes while shaking his had in a no response. He would say no to a range of options, then when I would have to repeat the options (because it would become obvious we had gone past the one he wanted) he would say yes, usually to the first option which I had been pretty sure was what he wanted.

These kinds of things are very common with FTD.

What are you wondering might be going on?

Awful things those people are saying to you, why don't you tell them they are welcome to do all the praying while you do the looking after? ;)
 
Thank you, Tillie. I had no thoughts as to what could be going on, just wondering if what she's going through is common among others as well.
 
My mother in law has similar issue. You can ask the same questions many times and get different answers. Her default is no; many times you would ask her if she wants something and she would say no and then take whatever you asked her about. Or she will just repeat what you told her. When she does try to talk by herself it is really hard to understand what she wants because her words are slurred or just not the right words at all.
 
You describe it well godiva.

And the worst part is that you just have to remain completely patient and happy about trying over and over. You cannot remark that gee you offered x at least 3 times before they got the response right, or the rage hits and they just shut down.

Chris could be as impatient as he wanted, be as frustrated as he wanted, but I had to be a perfect assistant no matter how long it took or what was vented at me.

That's classic FTD. No empathy, no understanding that this was so hard for me too, that I was frustrated (rather than angry with him, just frustrated as we tried to communicate some need), or even that maybe I was tired and not doing so well.

However, understanding that FTD was wasting these parts of his brain really helped me to remain calm on the outside (you know the duck impersonation - all calm above the water, but paddling like mad underneath), and work through to find out what he wanted or needed.

Pictures instead of words really help. We made a great picture chart. I only got him to agree by suggesting that it would help the staff who weren't so smart at understanding, and that we could take really silly photos to make our own chart. I still remember that doing that together was one of the few times by that stage of ALS/FTD that we actually had a lovely afternoon and lots of laughs.
 
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