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 progression of LBD 
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Joined: Sat Sep 06, 2008 1:17 pm
Posts: 2
Post progression of LBD
I am new to posting but have been reading the site for the past couple of months. My 72 year old father was suspected of having LBD in May of this year and it was confirmed on July 1st when we saw a neurologist. He died on August 23rd. This seems like a quick progression for LBD but I know that everyone is different. I was wondering if anyone else experienced such a quick decline. The dementia piece became very evident this spring but the physical symptoms really did not get worse until the end of July. He did have signs of declining physically this spring when he fell a couple of times but on July 28th we used a wheelchair for the first time and he never walked again. I would appreciate hearing any stories of how fast others have seen the progression of LBD. Thanks! Debbie


Sat Sep 06, 2008 2:37 pm
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Dear Debbie,
Please except my condolences to you and your family on the loss of your Father. I wonder was there any medications involved that could have caused such a decline or was there an infection involved?


Sat Sep 06, 2008 5:43 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Debbie,
I'm sorry to read of the loss of your father. Yes, this does seem to be a fast progression. (No one in our local support group has declined this quickly.) Usually when I hear of such a quick progression and dementia, I think of CJD. I assume your father did not donate his brain tissue? Unfortunately, that's the only way to confirm the diagnosis.
Robin


Sat Sep 06, 2008 6:04 pm
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Joined: Sat Sep 06, 2008 1:17 pm
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Thank you so much for answering. As far as meds go, we thought dad was depressed and that the depression was the cause of the difficulties with memory, concentration, affect, sleep. In Jan of 2007 he retired after 50 years of being a minister in a local church. We thought he was depressed from the retirement. He as put on Remeron and Amytriptyline. He was also taking meds for his stomach and in 2007 had an operation and many scope tests. I heard that anesthesia can cause the dementia to progress rapidly. He seemed forgetful but we didn't see the dementia until this spring when he asked me who the woman was that was living with him. In May, he was put on Seriquil with the idea that it would boost the antidepressants. That was when we noticed a quick decline and dementia. He started having hallunications which were only in the early morning and did stop when the amytriptyline was stopped. He only took Seriquil (the most was 50mg) for 2 weeks. He did take Valium for a number of years. We saw a neurologist on July 1 who told us that dad had probably 2-5 years and that there were no meds to help. He saw another dr on July 28th who said that he had 6-12 months and had him put back on Seriquil so he could sleep. He also gave dad ativan. He had no infections that we knew about but we were unable to get him out of the house after July28th. He did develop a tooth infection and we tried giving him antibiotics until the end when he refused food and was unable to swallow. He seemed to lapse into a coma on Aug 21st. I personally have questioned CJD but will never know. I appreciate this site so much and referred to various posts in my search for what to do for dad. Thanks! Debbie


Sat Sep 06, 2008 6:23 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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I don't know much about CJD but it does come up in various support groups when the progression is rapid. People are diagnosed with one disorder or another (AD, PSP, CBD), then upon autopsy are found to have CJD. I think a very small percentage (5%?) of CJD is inherited. I believe there is some sort of test for the inherited form....I think it involves a spinal tap.


Sat Sep 06, 2008 8:20 pm
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Joined: Thu Jul 10, 2008 11:20 pm
Posts: 18
Location: Junction City, Arkansas
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My dad has been misdiagnosed/diagnosed with LBD for about 10 years. He was doing well until around May 23-24 and went on Hospice in mid-June. He has rapidly declined since that time. In mid-June, he was still able to walk, although very little. He is now unable to walk or stand or sit up....eats/drinks very little.....lost 20-30 lbs......fecal/urine incontinence....etc. Anyway, the point is he progressed very rapidly after declining a very slow rate for years. There is almost a blessing in a decline like your LO had. Sorry to hear about your loss.
Pam

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Sun Sep 07, 2008 3:52 pm
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