Old 04-15-2018, 08:38 PM #1 (permalink)
MVFinVA's Avatar
New Member
 
Join Date: 2017
City: Springfield
State: VA
Country: USA
Diagnosed: 05/2017
Interest: I am a caregiver for someone with ALS/MND.
Posts: 39
MVFinVA is on a distinguished road
MVFinVA MVFinVA is offline
New Member
MVFinVA's Avatar
Join Date: 2017
City: Springfield
State: VA
Country: USA
Diagnosed: 05/2017
Interest: I am a caregiver for someone with ALS/MND.
Posts: 39
MVFinVA is on a distinguished road
Default Primary aphasia

At the first ALS Clinic appointment after my husband was diagnosed voice banking was brought up. I didn't get right on it because I knew he probably also had FTD. It has been almost a year since diagnosis and he is still speaking, but has primary progressive aphasia - the logopenic variety. So basically he is losing language. He doesn't read anymore and it is impossible to hold a conversation. Any advice on communication assistance in these circumstances would be appreciated. Our next clinic appointment is Wednesday and I want to discuss this issue with the speech pathologist.
MVFinVA is offline  
Old 04-15-2018, 09:29 PM #2 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 5,818
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 5,818
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
Default Re: Primary aphasia

I'm sorry to hear that your husband has primary aphasia. If he can make use of a board with only icons for food, nose-scratching, etc., that is one direction. Or, if he can process auditory cues, that is another.

Trying to get him accustomed to blinking/nodding yes or no, or when you get to the correct option, is another approach. Sometimes other types of cues, like a musical phrase, drawing, clothing item, toiletry or photo, are easier for someone like him to use or process. I am sure the therapist will have other thoughts depending on her evaluation.

Of course, the approach(es) will probably need to evolve as the disease progresses, so I would make sure you have a way to keep in touch with the SLP between clinic visits.

Feel free to start a new thread (I moved your post into one as it is a different topic from where it was) for any other support we can provide right now.

Best,
Laurie
lgelb is offline  
Old 04-16-2018, 03:46 AM #3 (permalink)
affected's Avatar
Extremely Helpful Member
 
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,679
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
affected affected is online now
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,679
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
Default Re: Primary aphasia

I'm so sorry you have this on top of the physical losses.

Definitely pictures are likely to work best, but remember he may lost track of which is yes and no.

There are some apps that allow you to put together picture charts or you can simply make some.

My Chris responded really well to us creating the charts with silly photos that I took. It was a rare time of cooperation and fun and it actually got him using the charts instead of his usual dig the heals in approach.
affected is online now  
Old 04-16-2018, 07:24 AM #4 (permalink)
MVFinVA's Avatar
New Member
 
Join Date: 2017
City: Springfield
State: VA
Country: USA
Diagnosed: 05/2017
Interest: I am a caregiver for someone with ALS/MND.
Posts: 39
MVFinVA is on a distinguished road
MVFinVA MVFinVA is offline
New Member
MVFinVA's Avatar
Join Date: 2017
City: Springfield
State: VA
Country: USA
Diagnosed: 05/2017
Interest: I am a caregiver for someone with ALS/MND.
Posts: 39
MVFinVA is on a distinguished road
Default Re: Primary aphasia

Thank you Laurie and Tillie for your advice. My husband is a veteran, so thankfully we have been provided a lot of support both medically and materially from the VA. We were actually sent a digital voice recorder after our first visit, but I knew it probably wouldn't be helpful to us. My husband, Dave, is currently seeing a SLP to work on the aphasia. This isn't the one associated with the ALS Clinic because it is a nightmare to get back and forth to the VA medical center that often - not distance, but DC traffic The SLP is very kind, but his main work is with Parkinsons, although he has some primary progressive aphasia patients. He evaluated Dave's swallowing/eating and gave valuable advice on that. But mainly it has been the aphasia - identifying objects, describing words, or listing words. Dave does tend to remember what we did before. But I swing wildly back and forth in my thoughts - does this even matter?, is this worth is? why are we doing this? Dave likes going and doesn't seem to mind practicing at home. But this is emotionally very difficult for me. If it makes a difference for him I'd do it all day long. But does it? I feel as if we are swimming up stream and still being carried downstream. Are we maintaining any helpful language that will make a difference later? I really don't know. He is having trouble with yes or no questions. I can see he will probably become mute from the aphasia before the ALS stops the mechanics of speech.

I am very grateful that Dave is content and happy. He is only mildly frustrated with this whole thing. His go to line is "I am having trouble with words because of ALS." He knows he has ALS, he knows that it is fatal, but he seems unable to worry about it. That is a huge blessing for both of us. Unfortunately there are lots of things I would have wanted his input on if we'd have known this was coming, but he was already affected by the FTD before we knew it. It was insidious. As soon as he was diagnosed we did the power of attorney, advance directive, and DNR, but we didn't really get to discuss what I would have liked to. Thankfully both of our adult daughters are on the same page with me about possible upcoming decisions. I just wish I had had it from Dave's own mouth.
MVFinVA is offline  
Old 04-19-2018, 08:23 PM #5 (permalink)
Atsugi's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2011
City: Orlando
State: Florida
Country: US
Diagnosed: 12/2010
Interest: I lost a loved one to ALS/MND.
Posts: 4,990
Atsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond repute
♥ Atsugi Atsugi is offline
Extremely Helpful Member
Forum Moderator

Atsugi's Avatar
Join Date: 2011
City: Orlando
State: Florida
Country: US
Diagnosed: 12/2010
Interest: I lost a loved one to ALS/MND.
Posts: 4,990
Atsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond repute
Default Re: Primary aphasia

Virginia, two things come to mind. First, the most important thing is to be there with him, in his sight and preferably touching, as much as possible. Second, the brain has two halves that communicate differently. I think (though I could be wrong) that research shows that one side of the brain is dominated by vocal speech and aural inputs, and it learns, analyzes, and makes decisions based on what it hears. By contrast, the other half of the brain is dominated by visual inputs, and reacts to that, instead.

I don't understand what I think I know about that. But I do know this: Myself. I analyze input visually like a BOSS, and can draw or write my thoughts well. But my brain can't hold on to aural inputs very well. I don't learn squat by hearing it. I don't communicate well verbally.

Maybe your husband will be able to communicate back and forth with written words and pictures.


MUSIC! Music sharpens the cognitive processes. When I'm stumbling around the house and confused, I crank up some loud and offensive metal or grunge or Led Zepplin, and everything is better, like night and day.
Atsugi is offline  
Old 04-20-2018, 08:50 AM #6 (permalink)
MVFinVA's Avatar
New Member
 
Join Date: 2017
City: Springfield
State: VA
Country: USA
Diagnosed: 05/2017
Interest: I am a caregiver for someone with ALS/MND.
Posts: 39
MVFinVA is on a distinguished road
MVFinVA MVFinVA is offline
New Member
MVFinVA's Avatar
Join Date: 2017
City: Springfield
State: VA
Country: USA
Diagnosed: 05/2017
Interest: I am a caregiver for someone with ALS/MND.
Posts: 39
MVFinVA is on a distinguished road
Default Re: Primary aphasia

Mike,
Thanks so much for your input! Our oldest daughter and son-in-law gave Dave an iPad for Christmas and loaded it with aps for Sudoku and jigsaw puzzles. He was always a whiz at Sudoku. The Sudoku became too hard for him after a month but he does the jigsaw puzzles non-stop. He seems to not have trouble with the visual - just like you said.

He is also a musician and a pianist for 50 years. He can still play the piano because he can use his hands. It is getting harder, but it is a great blessing for now. He has written hymns and a few years ago self-published a booklet of them. A friend helped us record him playing them last summer. He "hears" the chords when he listens to music, not the words like most people do. So I try to keep music going and think that will be one aspect that could last until the end. He was also a birder. So if we watch any videos I try to make it nature documentaries or musicals or something visually beautiful. I figure if he can't follow the plot he can still enjoy the picture and music.

We are working now on finding some sort of communication ap that will allow him to communicate with pictures. One we are looking at is called Proloquo2Go.

We went to VA ALS Clinic on Wednesday, and now he is scheduled for a PEG placement on May 1st.

I messaged you yesterday with a question I thought you may be able to answer.

Thanks so much,
Mary
MVFinVA is offline  
Old 04-20-2018, 10:15 AM #7 (permalink)
Wilson2009's Avatar
New Member
 
Join Date: 2017
City: Lenexa
State: KS
Country: US
Diagnosed: 01/2017
Interest: I have been diagnosed with ALS.
Posts: 87
Wilson2009 is on a very distinguished road
Wilson2009 Wilson2009 is offline
New Member
Wilson2009's Avatar
Join Date: 2017
City: Lenexa
State: KS
Country: US
Diagnosed: 01/2017
Interest: I have been diagnosed with ALS.
Posts: 87
Wilson2009 is on a very distinguished road
Default Re: Primary aphasia

The VA provided me an AAC with Grid 3, which has both a keyboard text to speech function and a graphical text to speech function. Grid 3 has the added plus of allowing the user to sync to a smartphone. Might want to talk to the speech therapy folks at your VAMC about it.

Dave
Wilson2009 is offline  
Old 04-21-2018, 05:40 PM #8 (permalink)
MJALSWarrior's Avatar
New Member
 
Join Date: 2017
City: Charleston
State: SC
Country: US
Diagnosed: 12/2017
Interest: I have been diagnosed with ALS.
Posts: 25
MJALSWarrior is on a distinguished road
MJALSWarrior MJALSWarrior is offline
New Member
MJALSWarrior's Avatar
Join Date: 2017
City: Charleston
State: SC
Country: US
Diagnosed: 12/2017
Interest: I have been diagnosed with ALS.
Posts: 25
MJALSWarrior is on a distinguished road
Default Re: Primary aphasia

Quote:
Originally Posted by Wilson2009 View Post
The VA provided me an AAC with Grid 3, which has both a keyboard text to speech function and a graphical text to speech function. Grid 3 has the added plus of allowing the user to sync to a smartphone. Might want to talk to the speech therapy folks at your VAMC about it.

Dave
I got the same system. Working to get the voice bank done asap as my speech if fading pretty fast now.
MJALSWarrior is offline  
Old 04-21-2018, 08:30 PM #9 (permalink)
Wilson2009's Avatar
New Member
 
Join Date: 2017
City: Lenexa
State: KS
Country: US
Diagnosed: 01/2017
Interest: I have been diagnosed with ALS.
Posts: 87
Wilson2009 is on a very distinguished road
Wilson2009 Wilson2009 is offline
New Member
Wilson2009's Avatar
Join Date: 2017
City: Lenexa
State: KS
Country: US
Diagnosed: 01/2017
Interest: I have been diagnosed with ALS.
Posts: 87
Wilson2009 is on a very distinguished road
Default Re: Primary aphasia

Understand the need to hurry. My voice had already changed drastically when I created my MT voice. However, it is a heck of a lot better than my voice today.

Dave
Wilson2009 is offline  
Closed Thread


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
New Primary Care Physician Susan10 People With ALS - "PALS" 10 01-26-2012 11:48 PM
Primary Dr's? Phil M People With ALS - "PALS" 20 02-14-2011 11:28 PM
Any other primary caregivers to their spouse? hope_faith Current Caregivers (CALS) 86 09-02-2009 11:44 PM
diagnosis with primary lateral scelerosis? ruby ben General Discussion About PLS 0 02-15-2006 04:47 PM


All times are GMT -5. The time now is 05:21 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016