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  • Diffuse Lewy Body Disease

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    Old 03-25-2005, 12:31 PM   #1
    redy67
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    Diffuse Lewy Body Disease

    My father was diagnosed with this about 18 months ago. For those of you who don't know what it is, simply it is a cross between Parkinsons and Alzheimers.

    It is extraordinarly tough for my mother as she is the sole caregiver. They live across country from me, have no desire to relocate, and unfortunately it is not an option for my family right now.

    I am curious if anyone out there is familiar with this disease since it is fairly new to the medical field and there is not much about it.

     
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    Old 03-25-2005, 05:00 PM   #2
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    Re: Diffuse Lewy Body Disease

    My MIL's Geriatrician mentioned it, one of the various but rapidly growing strains of Dementia/Alzheimers .. don't know much about it, however, do a ****** search, I am sure you'll find lots !!! by the way, the geriatrician said ultimately it doesn't matter exactly what they've got.. they need nursing home care sooner rather than later ...

    He was a bit of a doom and gloom expert .. LOL

    Hugs .. & Goodluck

    Sally

     
    Old 03-29-2005, 12:15 PM   #3
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    Re: Diffuse Lewy Body Disease

    Not to be a critic but it is called dementia with Lewy bodies---DLB--they all seem to have inititals---guess just easier. I agree with Mustang Sally, dementias in the end are the same, he will need care. I also agree to ****** it, you will find much info on it. Just do "Lewy body. The one big difference is that people with DLB seem to have more hallucinations which is why Mayo ruled my husband out of it.

    Congrats to your dad's doctor, most do not know about it!!! You are lucky cuz there are differences.

     
    Old 04-12-2005, 10:46 AM   #4
    redy67
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    Re: Diffuse Lewy Body Disease

    Thank you for your support! My dad just visited and he seems to be in very good health, with no signs of the Alzheimers part of the disease.

    For those of you with loved ones "further down the path" any recommendations on how to get someone in to help? My dad is not at the point that he needs a nurse, but I know my mom really needs someone to help her get him dressed, shave, etc.

     
    Old 04-12-2005, 11:51 AM   #5
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    Re: Diffuse Lewy Body Disease

    Hi Redy! If your dad is a senior, you can look up your local senior services center and call them. Or you can do an internet search A great site is [url]www.alzheimers.org[/url]

    The type of care available unfortunately depends a lot on the person's income. Many people make too much money to qualify for services even though they really don't make enough to live off of. And how much the person owns or has in the bank or stock has a lot to do with it too.

    Check out that alzheimers website and others. And keep coming back here.

    Barb
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    Old 04-20-2005, 01:50 PM   #6
    redy67
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    Re: Diffuse Lewy Body Disease

    Barb thank you so much, I will try those out. Unfortunately I do believe that my parents are probably finacially too well off to qualify.

    It was so hard to see my father-in-law this weekend. My husband and I flew down to Florida with the kids to visit, and we all had a great time. It is just difficult to see what my father should be like and knowing where he is at. My FIL played with the kids, swam with them, took them for walks. These are all the things I wanted my dad to be able to do with his grandchildren, as I am sure he wanted this as well. It just breaks my heart.

     
    Old 06-20-2005, 01:47 PM   #7
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    Re: Diffuse Lewy Body Disease

    Thanks everyone for your support. Dad seemed to be stabalizing some, then I called him for Father's Day. The conversation was difficult. This brilliant scientist can't remember how to hold the phone correctly. He now uses the speaker phone. Normally not so bad. Yesterday, my mom was sleeping while I was talking to him.

    The conversation went something like this:

    "Hey dad, Happy Father's Day, how are you?

    "Is this John Hines?"

    "Yes, it is dad, his wife! Happy father's day"

    silence

    "So dad what are you up to?"

    "Going to dinner in awhile with your mother"

    "That's great, you want to say hi to the grandkids"

    "sure"

    grandkids say hello..

    "Hey dad"

    Silence

    "dad?"

    "hi,"

    "What are you doing?"

    "I am looking at a graph."

    That is when I start laughing. My dad can't do two things at once anymore. I couldn't understand why the conversation was SO difficult. Of course I called him on it, usually it gets a laugh out of him when he realizes what he is doing. Yesterday, nothing. So I said, "I'll let you go dad, have a great day, love you"

     
    Old 06-20-2005, 04:42 PM   #8
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    Re: Diffuse Lewy Body Disease

    Hmmm ...

    sounds like a conversation with my brother ........ hehehehe ... and he's FINE!!

    Hugs
    Sally
    PS: Glad you talked to your Dad :-) .. even if it was a little odd LOL

     
    Old 06-24-2005, 09:17 AM   #9
    redy67
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    Re: Diffuse Lewy Body Disease

    Thanks Sally. I try to talk to my dad as often as possible, some days are good, some days are bad. Unfortunately, the bad ones are increasing.

    My sister who lives near them is just unbelievable. She has the audacity to complain that they are 45 minutes away. She got upset at my mom because my mom said she could no longer take the grandkids for the weekend, it was too much for her. She tries to tell me this, and I just snap. I told her how selflish she is, and she is so lucky and doesn't even realize it.

     
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