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    Old 10-19-2011, 07:00 PM   #1
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    FrontoTemporal Lobe Dementia? Anyone?

    Is anyone dealing with this with a loved one? We're just starting to deal with this as a possible diagnosis for my mom. Has anyone had experience with this type of dementia? Can you give me any specific resources to look into? Thanks.

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    Old 10-19-2011, 08:11 PM   #2
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    Re: FrontoTemporal Lobe Dementia? Anyone?

    My experience is with Alzheimer's and Vascular Dementia. I am not sure if we have someone dealing with Frontal Lobe here. Each dementia has it's own set of symptoms and rate of progression... but all dementia has much in common as well. So welcome. This is a great support network of caregivers so we do know what you are going through even if it is a little different. Know we are here....

    Love, deb

    Old 10-25-2011, 06:27 PM   #3
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    Re: FrontoTemporal Lobe Dementia? Anyone?

    Hey Microwave

    Glad I am on the boards tonight. Yes - my stepdad has Frontal Temporal Lobe Dementia. Let's see - what can I share with you - and feel free to ask me anything too - looking back (isn't hindsight something?) we now realize he's probably been ill for several years. He was diagnosed after over a year of exhaustive testing (originally we were told by one doctor that he had Alzheimer's, but that was not correct). He was "formally" diagnosed in April of 2009.

    At that time he still lived at home with my mom. He lost control of his bladder sometime in 2007 or 2008......we can't be sure because at that point he was able to hide it. We began to notice a bit of a "shuffle" in his walk in 2007 / 2008. As for his cognitive abilities, it was a slow progression at first, but in July of 2009 we're sure he had a stroke, and he has had several small "tia" strokes since then (verified by a PET scan - and the PET scan was the ultimate test that enabled them to finally diagnose him).

    That stroke landed him in the hopsital where he was very disoriented, and we actually weren't sure if he was going to survive or not. That began our journey of skilled nursing for rehab, followed by an assisted living facility, back to the hospital (he probably had another small stroke), back to skilled nursing, and now, for the last year and a half, an adult family home.

    He still knows who my mom and I are. I don't know that he always knows other family, as my mom, his sister and myself are his regular visitors. I have two sisters and at this point I believe he still knows who they are as well.

    Currently he has good days and bad days. He has days where he pretty much sleeps. The caregivers tell me he'll have two or three really sleepy days in a row, then he'll have a "good day" where he's really alert.

    I am durable POA (power of attorney) for both my stepdad and my mom. He hasn't asked about bills, the house, his truck, or anything of that kind for a long time now. Sometimes when we take him out to eat (which is very rare now because he really can't walk anymore and it's getting really difficult to transfer him to and from his wheelchair) he'll try to reach for his wallet (which he no longer carries) and I'll just say something like "I've got it this time" and smile at him. That seems to work.

    If I had to guess when the illness started, I would say it was as early as 2006. I began to notice personality changes in him (he married my mom when I was only 5 years old, and he and I have always been very close - he's been an awesome dad to me). Also, once I took over as durable POA and had to dig into their bills, etc it turns out he lost a fair amount of money on some risky investments. My mom and I were stunned as he was always great at managing their money. It was (and is) a tough blow. Of course he's progressed so far into the illness now, it's not like we can get to the bottom of the "where did the money go" although there's a pretty good paper trail. I've been told this "gambler mentality" can go along with this type of dementia so that's why I'm sharing that info with you.

    Oh - he fidgets. He does it more when we take him out, so I wonder if it's tied to when he feels stressed. I hope this helps. I'll keep an eye out for you on the boards. I'm so sorry for what you're facing, but please know you are not alone! This board has truly been a lifesaver for me. If there's anything that I've been through that can help you or anyone here on the board, I am most happy to do that. Traversing this disease can be so isolating. People who haven't walked this road just.......don't.......understand. They can try to be empathetic - but they really don't get it.

    You mentioned in your post that this is a "possible" diagnosis. It is a difficult one to diagnose, but you probably know that. I'm wishing you all the best with your mom. Keep us posted as to how you're doing -

    Old 10-28-2011, 02:58 PM   #4
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    Re: FrontoTemporal Lobe Dementia? Anyone?

    my wife has fronto temporal dementia, and I have been dealing with it for almost three years now, however i do not know what part of the world you are in so it is difficult to give any specific advice

    Old 11-03-2011, 09:23 AM   #5
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    Re: FrontoTemporal Lobe Dementia? Anyone?

    My wife died 2 and a half years ago with Pick's Dementia... a form of FTD.

    She was diagnosed 4 years ago at the age of 52. And had been ill for several years, I can now see.

    I kept her at home for about a year before placing her in a nursing home. She was there for about 6 months.

    It is a very difficult disease to deal with. I hope you have others to help you deal with the day-to-day issues.

    There's not really a lot that I found as a resource. Just kind of learned by experience. We were in a research program at the University of Alabama in Birmingham. But even they didn't have much in the way of support or resources. I suggest that you find a caregiver support group of some sort. That was a big help, personally.

    Please ask anything you want, and I'll try to be more faithful about checking in here. K

    Last edited by kenbob71; 11-03-2011 at 09:27 AM.

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    Old 05-16-2012, 07:08 AM   #6
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    Re: FrontoTemporal Lobe Dementia? Anyone?

    Could they send your Mom to skilled-care NH first until she is calm? She would not be calm if she goes home with you. Please ask the doctor if they can try to diagnose her with the proper dementia. Did the doctors say they cannot? It is head injury as well?
    Hope they will find the good sedatives.


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