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 New and looking for LBD expertise in Washington DC area 
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Joined: Tue Dec 31, 2013 2:34 pm
Posts: 3
Location: Arlington, VA
Post New and looking for LBD expertise in Washington DC area
I am new to this forum and I am here looking for advice and for help finding a neurologist with expertise in dementia, particularly Lewy Body Dementia. My 85-year old father does not have a diagnosis but I strongly suspect that to be going on. My father’s memory is not bad at all and because of that the internist does not seem too concerned and is inclined to attribute his problems to normal aging.

The biggest problem is that my Dad has been having auditory and visual hallucinations. Almost every day, he hears people knocking on the door or calling him, and is very distressed as he is certain that that they are real. He also sometimes thinks he sees me coming into his room, or sees us outside trying to get his attention (he lives on the fourth floor). This is extremely upsetting to him. He calls me several times a day and often at night to ask if I or one of my adult children was at his apartment.

A few months ago, he started on a very low dose of Zoloft to help with depression and anxiety. I think it has helped his mood a great deal, but he is worried that the hallucinations may have increased on the Zoloft. I don’t know. My siblings think that he needs a higher dose of Zoloft because they attribute the hallucinations to anxiety, but I don’t think anxiety is the real cause.

Despite all this, his mind is otherwise pretty good. He lives in an independent living apartment, he dresses and cares for himself, he reads the paper, watches the news, follows the stock market, and can report accurately on events in the news or in his world. I talk to him several times a day and see him 2-3 times a week.

He has some motor issues and has developed a shuffling walk over the past few years, and lately he seems to hold his head and shoulders in a hunched over position. He walks with a walker and leans into it. He is fairly healthy but takes coumadin due to an artificial heart valve, and he has mild diabetes and hearing impairment.

My mom passed away eight years ago and he managed fine until a few years later when he was hospitalized with a blood infection and fever. He was slightly disoriented at the hospital and, during a brief period when I had left to get dinner for my children, he became very agitated. They gave him an injection of Haldol to calm him down, but that got him even more agitated, so they gave him more, and that resulted in respiratory arrest. When I came back I was shocked to find him in the ICU on a vent where he remained for a week, and then he stayed in the hospital for several weeks while they tried to figure out what was wrong with him. He was frighteningly unaware of his surroundings, ranting about nonsense and developing strange motor tics, smacking his lips and pinching the air repeatedly. They finally decided that he wasn't getting any better so they discharged him to a nursing home, where he slowly but remarkably got better over a period of several months.

To this day, no one has any explanation for why he became so delirious or what was going on for all those months. I think he had a strange reaction to the Haldol and that resulted in the delirium and dyskenesias of the following weeks. His doctor says it is a miracle that he came back from that, and I agree, but I am frustrated that no one is willing to consider that the Haldol may have been what caused the frightening symptoms.

I would like someone to examine him and to tell us if he meets the profile for LBD or another disease. I would particularly like to know about medications or treatments which might reduce the hallucinations without making him sick.

I live in the Washington, DC area (Arlington, Virginia to be precise). Can anyone suggest any doctors who might be available to see my father and who have a very good understanding of LBD and related disorders? I can drive up to an hour or two – if there is someone at NIH, Georgetown, Johns Hopkins, U Maryland, or elsewhere who has the training and background to properly examine and diagnose him, I am happy to go there.


Tue Dec 31, 2013 2:47 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 157
Post Re: New and looking for LBD expertise in Washington DC area
Welcome to the forum! Sorry you have to be here but you're sure to get some good info back on your question. I am not in your area so can't help there but you might want to try posting in the Regional Networking section of this forum. You might be able to get some info from what's posted there already as well. I know the meds the hospital gave my Mom caused all sorts of problems before she was diagnosed with LBD. Once she was given something that I'm sure caused a minor stroke. Luckily it didn't take her too long to recover from that. Good luck with your search. I'm sure you'll find lots of expertise in your area!

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Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Tue Dec 31, 2013 4:52 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: New and looking for LBD expertise in Washington DC area
Hi KARiley - I have read many times on this forum that an LBD patient should NEVER have Haldol. When my dad first became very debilitated with "something" that was yet to be dx'd, I was going to take him to Johns Hopkins. I have heard good things about the drs. there and also U of MD hospital. I don't know of any drs.' names - I was never able to get my dad there because he was so debilitated so quickly it was impossible to drive him the 90 min., wait for an appt. and drive him back to the ES of MD. So, I have no personal experience but I do know of some others on the ES of MD who had LOs who went to both of those places for dx and meds to help with the symptoms. I'll see if I can find out some specifics (like dr. names, etc.) and get back to you. Sorry for your situation. BTDT and it's not easy. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Dec 31, 2013 5:52 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 697
Location: LA
Post Re: New and looking for LBD expertise in Washington DC area
You are on the right path about the Haldol treatment, it should not be used if Lewy Body is suspected. Yes, I have personal experience.

This page may help:


http://www.dementiacarecentral.com/aboutdementia/lewy

Dorthea

PS. The signature below was created when I joined, 2007. Lots has happened since then but I'm still trying to be nice even though the one who introduced me to his strange invisible friends in that way is gone. He passed away in 2009.

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"See this lady, she's 85, but she's nice"


Tue Dec 31, 2013 9:24 pm
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Joined: Tue Dec 31, 2013 2:34 pm
Posts: 3
Location: Arlington, VA
Post Re: New and looking for LBD expertise in Washington DC area
Interesting. I just went back through some old notes and realized something I'd forgotten -- they kept my dad on haldol in pill form the whole time he was in the hospital. No wonder he never got better. I wasn't happy about the Haldol -- I complained about it more than once, as I knew it was a powerful medicine with significant side effects, but I have siblings who were also involved and they did not agree.


Wed Jan 01, 2014 1:41 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: New and looking for LBD expertise in Washington DC area
Read and arm yourself with as much data as you can about this disease and treatment of the symptoms. Then be very vigilant in standing up for what you think is right for your LO. You may have to do this many times, with many different CGs and drs. even if it eventually becomes a fight on behalf of your LO.

I don't use the word "fight" lightly - at first it is about being tactful and presenting people with the facts and your wishes (or whomever is the POA). It may become a fight (it did for my sister and me) but we had to hang in there to try to get my dad the kind of care he would have wanted and deserved. Unfortunately, it became a fight for us and hopefully not too many of you will have to go to the lengths we did. But when our LOs can no longer stand up for themselves we have to do it for them, no matter what it takes.

I hope you all have a calm and peaceful day. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Wed Jan 01, 2014 1:48 pm
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 235
Post Re: New and looking for LBD expertise in Washington DC area
So sorry to hear about your situation - it does indeed sound like the profile of Lewy body dementia, especially with the worsening symptoms accompanying hospitalization and Haldol.

Lynn is exactly right; the more knowledge you have, the better. And sharing it with siblings may help (especially once you get a diagnosis.) Many folks have never heard of LBD and find it difficult to understand. It took my dad a long time to accept that diagnosis for my mother, at least to go beyond a vague intellectual acceptance to a deeper understanding.

And you are on the right track in trying to find a neurologist who specializes or at least has considerable experience with LBD. I don't know the Hopkins folks except for the Alzheimer's group but I am sure there is someone there who works in that area. You might try calling the neurology clinic and saying that this has been raised as a possibility, you understand a definitive diagnosis would require post mortem, but you'd like someone who has substantial clinical experience as you want to be sure he is not getting treatment that would be inappropriate. I know LBD folks but mostly on west coast or at Mayo. (My mom was diagnosed here by our top neurologist, a colleague of mine for many years who is internationally known in AD world, but he also conferred with a couple of our colleagues at other institutions.)

Another really important thing is to keep the primary care provider in the loop and make sure she gets feedback from the neurologist. This is easy for me as my folks are getting primary care in our medical center, and between the electronic medical record and my knowing all the players, we can keep the PCP at the center of information. But it's harder if you go outside your primary care network. Worth the effort, though, and most neurologists are happy to help as it means their patients will be getting better care and they'll have fewer crises to deal with.

As Lynn says, this is a lot of work! But it makes all the difference. Good luck to you!
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD


Wed Jan 01, 2014 6:02 pm
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