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Joined: Sat Jan 31, 2009 7:21 pm
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Location: Ohio
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Hello. I'm here to let you know that I've found your posts very helpful. My LO is in the very early stages of LBD which is my primary diagnosis because I'm a cheeky RN! He is under the care of a gero-psych at a major medical center who is reluctant to give a definate diagnosis. His reluctance is based on nothing definative in my LO's PET scan or the extensive testing he had done by a psychologist while he was hospitalized 4 days about 18 months ago. For now, I'm going to spare you all the details of what led to all this, & just say that altho' he's doing quite well on Risperdal, Wellbutrin & Ativan, I continue to grieve the loss of the man I've been married to for 47 years. We also have 3 wonderful adult children who unfortunately live very far away. I'd like all of you to know that the support you all provide has been a great comfort. Dee


Sun Feb 08, 2009 7:45 pm
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Location: SF Bay Area (Northern CA)
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Welcome to the group. We have lots of cheeky folks around here but I think you may be the first cheeky RN.


Sun Feb 08, 2009 10:57 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Dee,
Welcome to the forums and I hope the support here continues to be a great comfort! Not too many issues we haven't touched on here and I am sure you will be able to add some as you travel the Lewy Path!

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Irene Selak


Sun Feb 08, 2009 11:25 pm
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Joined: Sat Jan 27, 2007 8:38 pm
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Location: CA
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Dear Dee --
We can all use a cheeky RN! Thank you for joining us as we work through the various aspects of Lewy (medical and emotional!) together.

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Renata (and Jerome-in-Heaven)


Mon Feb 09, 2009 5:18 pm
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Joined: Sat Jan 31, 2009 7:21 pm
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Location: Ohio
Post A little history
I hope I'm in the right place for this post :) I feel a little awkward because we are not facing such complicated situations as some others here. However, I believe a small part of that has to do with working very hard at getting us to some stability. First off, my LO started showing some unusual behavior about a year or so before his "break' with reality in '07. Two major symptoms were an inability to complete a simple errand like getting fast food for takeout. The clerk always made a mistake & he'd bring home too much or too little. The other thing was his unusual gait....in the beginning like "duck walking." Every time we'd go shopping he'd need a shopping cart to help him get around the store. We had his knees checked, he wore a brace on his knee for a long time & then it became worse & he began to walk really slowly.I then I that his beautiful feet had developed hammer toes in his effort to maintain balance & keep from falling. In '07 during the course of a week, he became totally paranoid about our neighbors conspiring against him. I got him to a family doctor who put him on seroquel & depakote until I could get him to the gero-psych doctor at the medical center. The seroquel initially made him sleep for 6 hours, & I do believe it exacerbated his paranoia because one nite at 3 am he became manic, accused me of poisning his coffee & conspiring against him with the doctors. I had to get the police (wonderful guys) & around 6 am we were able to get him to the ER. He realized he had the paranoia, & I think in his own way he knew he needed help. Blood tests in the ER revealed no depakote in his system because he hadn't been swallowing it. He was then admitted to the Behavioral Unit (dontcha' love it:)) for 4 days under the care of a gero-psych MD. At home , he was did fairly well on risperdal (2 mgms) & was subsequently put on Wellbutrin for depression & ativan for "racing thoughts & obsessive thinking". He is still on these meds. However the man who came home was totally different. He's completely apathetic & is glued to the TV 24/7 & doesn't realize he's watching reruns of the reruns. When I speak to him he stares at me (I think he's processing) & he often repeats what I've said to him. We have no real conversations except in the very early morning he can read the sports section of the newspaper (it takes all day) In the evenings he is quick to anger if he doesn't get his way or if he disagrees with something on the news. He also grabbed our 4 year old grandson by the arm when he didn't stop doing touching something. That wasn't good, but fortunately my DIL managed it well. Of course there's lots more, but I've tried to just include what seems most important just to give a sense of what's going on. Thanks for listening. Dee


Sat Feb 14, 2009 12:05 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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Dee,

You are posting in the right place! If you have a specific post about medication or behaviors, you can post in one of the other forum areas to get more exposure.

Not many LBDers can take Risperidal. I know one neurologist who refuses to prescribe it -- thinks it's as bad as Haldol. Ativan is less of a crap shoot, but still is a crap shoot.

You haven't mentioned anything about a dementia med, such as Exelon or Aricept.

I encourage you to read Boeve's Continuum paper on the lbda.org website, and give it to the treating psychiatrist or neurologist. I do think you can improve your husband's quality of life with more tinkering on meds. Up to you...

Robin

PS. Could your husband have been given something like Haldol to which he has never recovered from taking?


Sat Feb 14, 2009 12:49 pm
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Joined: Sat Jan 31, 2009 7:21 pm
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Location: Ohio
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Thanks robin. Yes, I'm aware of the risperdal issues, but in this case I think it really works well. That's a good point about nothing for the dementia............it hadn't occured to me, but I'm assuming that you mean he should be on something to slow down or diminish the dementia? I think it's because the gero-psych is an extremely conservative physician. In the beginning my LO was on 3 mgms of Risperdal, which we reduced to 2 mgms because he developed low blood pressure while taking hypertension meds. It took about 6 weeks to get that squared away. The ativan helped with the obsessive thinking (he would have full days of repeating TV commercials in his head!)& he takes it at bedtime to help him sleep. For a long time my husband was extremely hostile(saying terrible, nasty stuff) to me because following the hospitalization we sold our house (way too big for 2 people with lots of unsafe steps)& moved to a very manageable condo. We also auctioned off 85% of mostly his prized possessions. Many antiques & family pieces he was very attached to. I just wanted a smaller safer place to live! The hostility came about because I believe he blamed me for the down sizing. My DD reminded him that it had to be done because he couldn't do anything (prior to & now) anymore including taking care of the yard & also simple household chores all of which I was doing. Also we had to pay for the yard work & even the simplest of home repairs. Incidentally, the neighbors that were "conspiring" were the very ones who helped us with many things we couldn't do & would never take payment. I baked so many cookies & casseroles for them that I coulda' been on the food network! LOL. The last 3 months have shown improvement because I put him on coconut oil with the MDs blessing & I'll comment on that in the appropriate section. Dee


Sat Feb 14, 2009 2:30 pm
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To clarify: the risperdal was lowering his blood pressure to around 90. So I had to figure out how to keep him on it & also to get his pressure & his meds straightened out. Dee


Sat Feb 14, 2009 2:33 pm
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Joined: Sat Jan 31, 2009 7:21 pm
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Location: Ohio
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Robin: yes, I've read the continum paper & everything on this web site! :) Very helpful. I had to consider alot of information before I settled on LBD being the most likely diagnosis (mine)I intend to bring it up at our next appt. in March. We saw our family doctor last week & my husband is remarkably healthy altho' overweight which became a problem when he hit age 60. He's 73 & I'm 72. It was interesting to read about the friends & family who think the wives are crazy because their husbands act ok around them. I get that from the dr! Last time we were there & my LO turned on the charm because there was a resident in gero-psych sitting in on the session. He asked my DH if he could manage on his own & he said "oh no, I depend on her!!" No kidding, seeing as how I practically wait on him hand & foot! Then later he asked my husband if he felt he was the same (before his hosp.) & hadn't changed & he said "no he was the same!" Oh well. We see how things go! Dee


Sat Feb 14, 2009 3:30 pm
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Dee -- Family doctors can be slow on the uptake (or miss a diagnosis of LBD completely!). Hope you can find a good neurology or ger. psych. specialist who is very familiar with LBD and other dementias.

I understand completely the whole downsizing, selling stuff off, can't keep us in a house this large on my own issue. That's where we are now, but it was with Jerome's agreement that I started making the arrangements. Our house has been on the market for 6 months (yikes!), and an appraiser is coming next week to go through some of the art and antiques to see which I should liquidate.

When Jerome gets sad or depressed about leaving here, I remind him that he is giving ME such a huge gift with this move -- that he is taking the financial and housekeeping burden and stress from me and that I am so grateful for his giving me that gift. That helps re-frame the move as something that he can do for me at this time when there is so very little he can do for either of us. He immediately brightens up at how much this means to me. I just hope the reality of the move doesn't come crashing down on him.

Hang in there, you're doing a good job!

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Renata (and Jerome-in-Heaven)


Sat Feb 14, 2009 4:01 pm
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We do see a gero-psych at a major medical center who has a very good reputation & has been good to us, but sometimes he & my DH "chew the fat" like old football buddies & then other times the dr. gets really serious & asks some good questions, yet is reluctant to put a label on the whole thing. And also my LO really likes him.

When we put our "stuff" in for auction the woman from the auction house came to our home one evening & I just followed the two of them around the house. He told her about every piece, what he paid for it, what he thought it was worth, etc. & she was absolutely lovely with him & agreed that it must be very hard to give it all up. I was very grateful to her. Also when the crew to move the stuff came by, they stopped to chat & talk about the really nice pieces & paintings & treated him with the utmost respect which made it all much easier. Some things have gone well, others not so much. Dee


Sat Feb 14, 2009 6:42 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Dee,
Just want to welcome you to the forums, I see you have had some replies already and that is great,Join in here when you want and feel free to post in any area as your comments or questions would apply!

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Irene Selak


Sat Feb 14, 2009 8:34 pm
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Joined: Wed Oct 08, 2008 10:30 pm
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Location: Henderson, Nv.
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Dee,

Welcome to the forum but sad we have to meet under these circumstances. The journey we are all on is not a pleasant one but the folks on this site are. :)
Certainly could relate to much of your post regarding symptoms: verbally nasty/abusive at times, paranoid over the neighbors/friends who are helpful to us, etc. We go through periods when his meds keep him under control and as close to normal as possible but then we also have our "Lewy moments" when he is just such a different person. At the moment he is in a decent place...but that can and does change in a heartbeat. Sounds like you are doing a good job educating yourself and trying meds that will help your LO. Good luck on this roller coaster ride called LBD.

Dianne

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Dianne C.


Sun Feb 15, 2009 2:24 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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Dee,
As you no doubt learned from the Boeve Continuum paper, first line treatment for LBD is an AChEI such as Exelon. I'd get that addressed immediately. Give the conservative MD the paper too, and say that this is the approach you'd like. The only thing un-conservative about Boeve's recommendation is Provigil. Many people find great value in this medication but I doubt your husband's MD would try it.
Robin


Sun Feb 15, 2009 3:20 am
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