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Old 05-15-2012, 11:12 AM   #1
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Help for Frontotemporal Dementia?

I honestly have no idea what kind of dementia is affecting my mother; she is like no one I have ever seen! However, I have LONG felt that her symptoms didn't follow the typical pattern of Alzheimer's (although every dementia is called AD these days) and were much more frontotemporal in character. For instance, she still has no verbal impairment -- is very fluent (in three languages, no less) and articulate -- and only recently developed significant memory problems. What she evidenced about four years ago, however (this after a long period of what I would call mild congnitive impairment, probably due to multi-infarct or vascular dementia), was "rages"; if something set her off/made her mad, she would RAGE for an hour or two at a time. I would even leave the room, and she would continue to rage on! That was very odd, and I was about to mention it to her doctor when she fell and incurred the brain injury (bilateral chronic subdural hematomas pressing on the FT regions). At any rate, whether innate or acquired, I believe the fact that her main symptoms are mood/behavior vs. "memory" based indicates a FT syndrome. Of course we don't hear as much about this dementia as we do AD; to my knowledge, there is no FTLD support group in town! What helps??? I'm specifically asking for medications to control these symptoms.

 
Old 05-15-2012, 11:22 AM   #2
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Re: Help for Frontotemporal Dementia?

I just came across a good book title on Amazon: "What If It's Not Alzheimer's?" Will definitely have to request that one through interlibrary loan! Any input here welcome.

 
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Old 05-15-2012, 11:46 AM   #3
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Re: Help for Frontotemporal Dementia?

Quote:
Originally Posted by all4mom View Post
I just came across a good book title on Amazon: "What If It's Not Alzheimer's?" Will definitely have to request that one through interlibrary loan! Any input here welcome.
I am sorry that your Mom has uncertain dementia.
Given the state she is in - the languages she knows now and other things, I don't blame you for getting her the PEG. I mean, this is one woman who is still very much alive. She just needs to have food or water!
Usually for Alzheimer's patients when they need the feeding tube, they are already idle and stop walking/talking.
So your Mom is different. I sure hope some people here have some answers!

Hugs,
Nina

 
Old 05-15-2012, 11:48 AM   #4
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Re: Help for Frontotemporal Dementia?

That's what I keep hearing at the rehab... "Your mom is a little different!" We try to take that as a compliment, lol... She is far from being in a vegetative state and, as I stated in the feeding tube thread, is also not "dying" of any particular thing. She is just a mess! I sure wish we could hit upon the right medication to restore her to peace....

 
Old 05-15-2012, 11:52 AM   #5
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Re: Help for Frontotemporal Dementia?

I should add that one of the neurologists theorized that the reason the bleeds occured bilaterally (on both sides) in THOSE regions may have been because there was already some atrophy there; that is, space to be filled by that free bleeding. More evidence...

 
Old 05-15-2012, 05:37 PM   #6
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Re: Help for Frontotemporal Dementia?

Perhaps a combination of medications rather than just one medication will work. I know that complicates the problem. Mom never settled on one med but with her current cocktail she has been relatively content for 3 years. She is on Remeron, Depakote, and Geodon along with Zoloft and Melatonin for sleep. She is definitely Alzheimer's... classic textbook case! But you are treating the behavior rather than the dementia. Instant effects are going to be difficult to get. Most anti depressants and anti psychotics will take at least a week to show maximum effect.... Good luck

Love, deb

 
Old 05-16-2012, 07:14 AM   #7
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Re: Help for Frontotemporal Dementia?

my sister was diagnossed with FLD a few short years ago, she first has some memory problems, mood swings, nothing like raging, I just spent a week with her and she has lost her life skills, she can no longer cook, she needs direction to get dressed, she needs help in most areas, she has trouble speaking, she can not find the right words to use so uses the same ones over and over, her favorite is "I want to thank you", my sister is very young not 65 yet, we did dishes together and cut up fruit together, she loves to walk her dog and many other things, This diasease is so awlful , I just lost my mom to alz. My sister knows who everybody is and remembers things from the past, as we talk her eyes light up with reconition. my kids have not seen her in a year and yet she knew them right away. I wish there was a magic pill to make her whole once more but it is what it is..

hugs judy..
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