FTD progression?

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affected

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Now this is a bit of a hard one to tell for sure with bulbar issues involved.

My PALS will try to say something which is hard to understand. I try saying back what I think he said and he lets me know if I'm right (usually not). We use a few tactics to help us both.

Now what is changing lately is that for example I may say back - you would like a coffee? He will say no, then try saying it again, I will say back you would like the toilet, no, and so I try about 4 or 5 things, all no. Finally I say again, you would like a coffee? YES

It's only been the past week or so, but it seems that several times a day now it is happening. I laugh and say, but that's the first thing I asked if you were saying, and he laughs.

Inside I'm getting a little concerned that the FTD is moving past just the behavioural variant. Anyone else dealing with FTD notice anything like this?

bewildered
 
There is some confusion and word loss even with behavioral variant... My belief is that the borders between the variations are soft, not hard delineations. I found that offering Glen too many possibilities it would start to confuse him. Have you tried using a picture board that he can point to? Even with minimal usage of his hands, you could always move the card for him. The best way I found was to cut out pictures of various things from magazines, or print from online: a cup of coffee, a bathroom, a chair or bed (whatever he naps in). Paste them like a graph onto a piece of paper (printer paper works well) Get it laminated and it will stand up to quite a bit of abuse.
 
Thanks Katie, I hoped you would answer, and it makes sense that the boundaries are soft.

We haven't made a picture board, but I've been gently talking to him about one the past few weeks. It's usually pretty easy with working out simple things he wants, even though I used that as my example.

We do have a laser head pointer that he can use with a board like this, or of course someone else pointing can work.

With him it's always a matter of softly, gently, slowly. Try to get something new going quickly if often a disaster as he just jacks up and resists.

With the strange mix ups that are starting to happen, I can see that a picture board, or set of picture boards are going to be one of my next projects for when I've got nothing else to do HAHAHA

I think I might make ours by taking photos of our own things, like his own recliner, outdoor chair, coffee cup etc, it might make it seem more enticing. One can only hope eh
 
Hi Tillie,
In answer to your question, yes, my husband has been doing that for the past couple of months. In other words, while I am trying to guess what he is saying, we go through multiple things and then end up with something that I had already guessed. It seems to me like he is getting confused easily. It had sounded like our PALS are similar in their behavioral FTD. I don't know how much yours can move, but I remember one visit to the ALS clinic that they told me that there was a syndrome that quadriplegics get where they can't sequence things well. They told me this when I told them that my Pals was having trouble with saying yes when he meant no, or visa versa. He also shook his head yes, when he meant no, or visa versa. I never looked into it further, but they did test him with some number and word tests and he did have trouble sometimes following a sequence, ie/ 1,3,5,7…..(the answer would be 9, 11,13 etc), but he would miss some and not even know it. I forget the word sequencing they did.
Maybe when he said no, he thought he said yes? Just a guess
 
ps I wish my husband would use a picture board. I made one, but he does not want to use it yet.
 
Tillie... using your own things for the picture board is just plain brilliant! And I do understand about having to move slowly... anger is such a large part of the FTD that it's easy for the best intentions to become counter productive. I remember one day Kevin's girlfriend told him "Your dad is just so MEAN to your mom!" Just having someone else acknowledge that it wasn't just my imagination was greatly helpful.
 
Thanks for the responses again, you guys instantly 'get it' and it is always a relief for me because as you said Katie, that acknowledgement from the gf gives such relief. I feel the same when others observe and comment.

However if I were to try to explain this to many people they instantly start to make excuses for him - maybe he is scared, I'm sure he doesn't mean it, it must be hard for him. All that is true, and I take all of this into account every single day and it stops me getting truly frustrated with him so that I don't bite back, and sometimes it hurts but I don't let it really get to me because I think of it like I wouldn't let his withered arm and clawed hand make me feel bad, so treat the withering part of his brain the same way.

Then I also talk to quite a few PALS, through here and other places who have amazing attitudes and insight. I'm sure at home they get frustrated, angry, scared, upset and a host of emotions and react at times, but that's human.

What we see are patterns of behaviour that set in and progress.

So when you other CALS dealing with FTD can understand exactly what I'm saying in these texts posts I am immensely supported in myself that I can do this, and I can work around the FTD and still give loving care, in spite of the FTD. Just like we work around and give loving care to our PALS as they can't walk, or pick something up.

I think I will make it a comedy picture board too - take silly photos, put a big teddy bear on the recliner or something.

I have no idea how CALS did it before tools such as the internet, they must have been so isolated and scared! Now we are just scared ;)
 
Hang in there you guys, you're doing an amazing job. The amount of thought and effort that you are putting into this situation is a testimony to your love and endurance. This is an isolating disease, so a forum like this is a God send. Hugs all around.
Paulette
 
Hi Tillie,
I see you post at all sorts of different times, I sometimes figure that you never sleep. Then I remember you are a world away from me. I just wanted to say. .. back at you…… I felt so alone, and with no one to turn to, to try to talk out why my loving husband was no longer the same. I am now a trigger for him, whenever he sees me, he either can not hold back his tears (all a part of the disease), or he is mean spirited. When I am not around, it seems to not be as bad. I get so hurt thinking about it, but then I remember that he has gone through so much more . His dignity has been taken away along with his health. I could have never been as brave and as accepting as he has been……………. BUT oh my gosh, I sometimes want to pull my hair out…… Mary
 
Affected - I have just lately noticed that my husband is having the same issues. Thanks for bringing it to the table - great to read all the responses.
 
I think I must post in my sleep Mary ;)

I work for myself on a computer, so I often pop in and out here and so it probably does seem odd.

Pat, I'm glad it helped you to read this thread as you see it happening too. Just you saying this also helps me to understand what is happening here.
 
Ronnie & Sissy as far as I am aware not every PALS develops FTD, but I believe that every PAL has behavior alterations, as I once said before, if your PAL has a trait that could be described as difficult, the disease seems to intensify it. For example if the PAL was always a jealous type, chances are it will get worse, stingy with money before? Scrooge now:) After all, I am sure I would be a miserable beast if I was bedridden and not even able to scratch a mosquito bite or bite into my favorite food if I was even allowed to eat it still. But FTD just seems to take it another step beyond what you would normally expect as a person's reactions to what is going on around them and to them. That's my opinion.
 
Sissy for many years they said ALS did not affect mental capacity, then that about 15% could develop ftd, and now it is being studied more deeply and recognised far better.

I believe they currently say around 50% of bulbar onset will display some ftd.

Not sure on other onsets, but I do believe it is less common with limb onset.

Pat makes a good comment there and I always say it is patterns of behaviour.

No person with this disease could not have days when they are 'not themselves' as they battle what is happening to them. But with ftd you can track changes in behaviour patterns and after a while you find you can't really keep justifying these patterns and they progress, just like you see a set of muscles wasting.

For many bulbar onset too they find that behaviour changes are noted by their partner before the physical symptoms start. I know that this was our case.
 
I hadn't even heard of FTD until the past 6 months or so. My PALS was limb onset, and didn't show definite signs of FTD until the past 18 months or so (at least that is what my doctor now says, I noticed it about 10 months ago). It was so hard to distinguish between the behavior of a person that is going thru such a hard disease and all the depression and emotions that go with that, versus an actual extension of the disease. I have read a lot on how to deal with behavioral dementia, that has helped me see the patterns better and be able to understand it better. I wanted to add here, that my doctor has told me that there has been a lot of research about psychosis in people that are long term on ventilators and that seems to add to the FTD. I always assumed that she meant invasive ventilators, but I never asked.
 
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