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Lost a loved one
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lala land
There is a new paper this week (you can read it if you register w/ Medscape) on "Disorders of Emotional Processing in ALS." What it boils down to is evidence that changes in the brain itself make it harder for PALS to recognize and differentiate emotions in others. So a scientific rationale for some of the behavior we are talking about.

Laurie put this in another thread, but I thought it could be worth discussing here for those who are facing the horror of FTD taking their PALS away.

I always took the approach to Chris that parts of his brain were being attacked just like the muscles of his body that I could see. This made it far more possible for me to cope with the personality changes as they were quite devastating.

Really worth reading this article to see what the researchers are finding is happening in some PALS, particularly bulbar onset.
 
I don't want to face that. I'm just hoping that I'm part of the 75% of Bulbars that don't get FTD.

Thanks anyhow, Tillie.
 
Thanks once again Tillie.
Love Gem
 
>Dr Appel gives a short video interview at the bottom of the page that I think is well worth all carers listening to

great!
 
Great link. Thanks, Tillie!
 
Can this start as moderate memory changes and confusion and getting upset more with some yelling? I am asking because sometimes I feel like I am dealing with a frustrated Alzheimers patient.
 
There are so many variations in how FTD presents and progresses, just like ALS really.

It can be really helpful to start to note things in a diary so that you can look for patterns and triggers to behaviour.

What do you mean by memory changes?
 
He sees something, like a report, then a few hrs later says I didn't show him. A few days later he claims the same thing. I will show him the binder with all his medical records and go over the times we reviewed it and he doesn't remember it at all. He doesn't call me a liar but that is the only choice.

People call on the phone, he can't remember who called or why they called.

He confused a 5 ft 5 in caucasian doctor with a 6 ft possibly middle eastern doctor at the hospital and was very adamant about it.

He says it is his medication but it is getting much worse.
 
What medication is he on as this could be a side effect?
 
he thinks the lexapro but he has taken that for 10 months. /the psychologist at the VA said this was a noticeable cognitive issue and asked if I wanted him tested. I declined but I think when they had their conference, all the witnessed incidents were discussed.
 
I don't know that memory stuff is well connected to Lexapro, especially as it is progressing, but it's always the first thing you think of looking at which is why I asked.

It's a plus that his doctors are aware and noticing because it does help you cope with how you can find yourself feeling - eg. is he calling me a liar?

It's really common to use a questionnaire for the carer as a diagnostic tool which could avoid putting him through testing.

At some point if he shows continuing progression you may want to know if this is what you are dealing with or not. There are medications that can help reduce some of the symptoms particularly if there is a high level of anger and paranoia.

I always come back to talking about patterns of behaviour because every PALS and CALS will have bad days, outbursts of anger, brain fog even to forgetfulness and more.

Again it can help to start documenting it, just a few short notes at the end of each day or after something concerning happens can really help show if patterns are emerging.

Another big thing with FTD is that the PALS is not aware of the changes. So if what you describe were to be FTD he would think you are lying when you say he already read this or was told that, and the more often it happens the more often he will be convinced you are lying deliberately.

{{hugs}}
 
He definitely doesn't believe its happening. He always says it the medicine. Its frustrating for me and for him.
 
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