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 Help-need info 
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Joined: Mon Jun 21, 2010 2:24 pm
Posts: 32
Post Help-need info
Hello everyone, Finally have an appointment with the neurologist for my hubby (68), that I know has lewys. He has been diagnosed with dementia(no meds tho), but from the symptoms here, I know what it is. We saw this same neuro last fall,(I didnt know about Lewys then!!) but he was more interested in controlling the diabetes, but now Lewys has escalated to a point to where I want to pull my hair out. Every day is a new drama. My questions are about testing that need to be done? and if he recommends meds, what kinds are best to start out with? They did a MRI of brain last fall that shows signs of dementia. My husband has had bad experiences with Adavan, but takes Klonapin nightly for panic disorder. Has taken it for at least 6 or 7 years. I believe both of these are neuroleptics, if I am not mistaken? We live about 90 miles from the neuro office so I need to roll everything into one visit (what I possibly can,anyway). And what questions do I need to ask? I could talk to him all day about the horror stories, but I want to cut to the chase if possible. I realize that this is hard sometimes. All info will be appreciated, as I will make a notebook and take it with me. I have been journaling sice Feb.2010, trying to remember all that I can. Plus,all the new "adventures" daily. Thanks in advance and I love everyone and yall are all in my prayers continually, as I am finding more to pray about daily... and Praise the Lord I do have a DPOA!!!!


Mon Aug 09, 2010 3:03 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Help-need info
I am glad you finally have an appointment set up but there are no tests that can determine LBD in a person before they pass and a brain autopsy is done, tests can eliminate other disorders but not LBD you can present the facts and the Dr will make a determination, if in fact the Dr thinks it is LBD , most likely he will start Cholinesterase inhibitors often using Aricept or Exelon, these are the drugs that are the most helpful but be aware there is no one drug for LBD, much of it is trial and error.
Good Luck at the appointment!

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Irene Selak


Mon Aug 09, 2010 3:47 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Help-need info
I would ask for neuropsychological testing. Usually this testing takes a whole day.

I'm not sure how a brain MRI "showed signs of dementia." Atrophy, yes. Dementia, no. Maybe in someone's mind atrophy = dementia?

Ativan (lorazepam) and Klonopin (clonazepam) are NOT neuroleptics.

For medication, I suggest you give Dr. Brad Boeve's 2004 "Continuum" paper to the neurologist and suggest that as a treatment approach. (Search for it on lbda.org) It may take you several readings over several months to understand the document yourself. (This would be like most of us.)

Rather than asking questions, I suggest you list the LBD diagnostic criteria and list your husband's symptoms that fall under that criteria. Then highlight the one or two symptoms you would like the MD to focus on treating.


Mon Aug 09, 2010 3:56 pm
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Joined: Mon Jun 21, 2010 2:24 pm
Posts: 32
Post Re: Help-need info
Hi Robin, My Hubbys primary care dr is a internal medicine guy. We started seeing him for the diabetes, but my hubby wont eat right, so it hasnt gone well.Anyway, the MRI thing. He gave me a report from a major medical center here in Arkansas. The MRI was done last August. However my husband had a 'fit' in the hospital and demanded to leave so we didnt get any reports on tests that they had performed. Our PC DR got the reports and had them since then. He gave me this in April this year.He made me a copy and underlined this part which he says means dementia.It reads "There is minimal periventricular signal abnormality consistant with mild small vessel ischemic changes to the supratentorial brain. Subtle small vessel ischemic changes are seen to the pontine region." He underlined what I have in quotes and said that what this meant was dementia. Now I had been telling him about my husbands 'episodes' of forgetfulness, confusion, etc., excessive sleep , REM disorder, weakness and temor in arms and legs. Perhaps he put it all together from all of this? But then, he told me he didnt want to diagnose dementia as it was a 'death sentence'. Hence, the wait, till I cant wait any more and I called to get the appt with the neuro myself. I have a call into neuro office to be sure he treats patients with dementia. No need of making the trip if he doesnt. My husband would NEVER see a psychiatrist, so that is out of the question. Kinda leaves me (or should I say we, since he thinks there are 3 of me most of the time) with quite a problem. Maybe I am barking up the wrong tree?


Mon Aug 09, 2010 5:12 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Help-need info
Oh, I think you posted that sentence before, and we likely discussed that this could mean your husband has vascular dementia (VaD), which is dementia caused by strokes.

Certainly many of your husband's symptoms (including the Capgras delusion) fit with Lewy Body Dementia. It's quite common for people to have multiple pathologies going on in the brain.

As Irene said, a confirmed diagnosis is only possible with post-mortem brain tissue analysis. Have you decided to donate your husband's brain upon his death? (He doesn't need to know anything about it.)


Mon Aug 09, 2010 6:15 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Help-need info
A PET scan can show differences between the various dementia types but isn't something routinely done and it's not a definitive diagnosis. It can only show that the brain scan is consistent with LBD or Alzheimer's or FTD.

Most of our LO's LBD diagnoses are a result of the neurologist's looking at the patterns of symptoms and behaviors as well as certain responses to medications.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Aug 09, 2010 7:36 pm
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Joined: Mon Jun 21, 2010 2:24 pm
Posts: 32
Post Re: Help-need info
in reference to the brain donation, I would like to do that. However is there cost involved? And being in a rural area, how could this be accomplished? I've been telling him for years that his head needs to be examined. :lol: Seriously, I am interested. I understand the PET scan is only done at research facilities? Would there be a chance of anything in Arkansas? Just thought I would ask. Thanks for all of everyones help.


Tue Aug 10, 2010 11:02 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Help-need info
I can help you look into the costs and availability. Please EMAIL me at rriddle AT stanfordalumni DOT org. (Unfortunately the email buttons have been removed. I guess the powers-that-be think we can't handle them.)


Tue Aug 10, 2010 12:57 pm
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