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 Glad to find this place 
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Glad to find this place
Hello. This is my first post although I have been reading here for the past several weeks. I am 66 and my husband is 74. He was dx with essential tremor way back in the 80's. In '99 he was dx with Parkinson's. The first time I heard Lewy Body in regards to him was back in 2008 when he fell and broke his wrist. He spent most of the day in the ER and they put him out twice to set his wrist. He came home and cut of the soft sided cast and fell again. Back to the ER. IT was set again and he came home...angry at me and thinking that I had not let them keep him there. We had an incident with a firearm. Luckily one of the children was there and took it away from him. He was in an extreme confusional state for the better part of a week until I called his neurologist (who was set to go on vacation for two weeks) and he got im into a teaching hospital. He was there for 27 days most of that time with a Constant Observer with him in the room. His Neuro came back from vacation and talked of LBD. The confusion/delusions/hallucinations resolved and he was discharged to an SNF for 2 weeks and came home. He's been pretty good since then until last November when he fell and broke his knee. Pretty much it's been downhill since then. His Neuro frinally convinced us activate his VA benefit as he has told us that one of the experts in LBD is at our VA hospital. We are scheduled to see this person in a couple of weeks. We have issues with inappropriate toileting, wandering nin the night, fluctuating skill levels and cognition. I am sooo tired. At the verge of tears all the time..frustrated beyond belief, but awfully glad to have found you all.


Sat Jul 31, 2010 5:50 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Glad to find this place
Sorry you've had to join us here.

What's the name of the neurologist that your husband originally saw and the name of the teaching hospital? Both sound very good.

Glad one of your children was around at the time of the firearm.


Sat Jul 31, 2010 7:21 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Glad to find this place
Hi, Robin. He was at the University of Washington Medical Center for 27 days. It's a teaching hospital so they aren't so quick to discharge you and even though they talked about discharge early on they didn't and the delerium finally resolved. His neurologist is Dr Samii at the UW. The neuro he is going to see is James Leverenz at the VA in Seattle. He's on the Scientific Board for the LBD Association. He and Samii (who is both at the VA and UW) occaionally see patients together.


Sat Jul 31, 2010 7:34 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Glad to find this place
Dr. Samii is not my cup of tea so I'm glad you liked him. Dr. Leverenz is also at U of WA...very nice guy.


Sat Jul 31, 2010 8:54 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Glad to find this place
Leverenz only sees patients at the VA. The UW staffs the VA, Harborview and the UW Medical Center. So, the physicians have more than one affiliation, but they may see patients only at one or two places. Samii sees patients at both the UW Med. Center and the VA.

I am sorry Samii wasn't your cup of tea. He has been very accomodating to us. He responds quickly to phone calls. He works well with my husband's Internist. I would be intereted to know what you saw that we didn't? If you are in CA, how do you know Samii?

I do respect your opinion, Robin. Have been reading your posts and they are well reasoned and thought out.


Sat Jul 31, 2010 10:05 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Glad to find this place
Like I said, great that you like Dr. Samii. That's the only important thing. Having an MD on the team who is responsive and shows respect for your input and questions is worth his/her weight in gold.


Sun Aug 01, 2010 1:50 am
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: Glad to find this place
Hi Nandel8. Welcome to the forum. I don't know Dr. Samii, but it's nice to hear another LBD contact in WA. We go to Dr. Leverenz at the VA. I think he's excellent. If you're interested, I've posted several times on him and you can probably find my posts through a search.

_________________
Annie, daughter of brave Marie, dx 2007 and in ALF


Sun Aug 01, 2010 10:41 am
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Glad to find this place
Thanks, Annie N. We are looking forward to meeting him. My LO has taken such a turn for the worse in the past couple of weeks. We need that appointment. It will be hard for him...we are doing everything the same day. Review by primary care doc in the morning and two Neuros in the afternoon. I doubt that he will be able to sustain "showtime" for that long. (Last time with his neuro he passed the Mini-Mental with flying colors...last night he complained that the voltage on his bed wasn't high enough and the charger wasn't working. It should be 12 volts and he was only reading 4 or 5 and it was causing him to overheat and be thrown out of bed.) Nights are so difficult. It is such a comfort to know that others have experienced the same things and when they read this they will nod their heads, knowing because it's happening to them.

Sadly, if I tell the children they try so hard to find some way of normalizing his behavior and making sense out of it.

By the way, I did find your posts r/t Dr. L. Thanks for leting me know they were there.

NAN


Sun Aug 01, 2010 12:25 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3339
Location: Vermont
Post Re: Glad to find this place
Hi Nan, sorry you have to be here, but it's a good place to find when you have a LO with dementia. It sounds like you really have your hands full. Can you talk with your children about reading this forum, or give them lit. that explains what's going on? It is really hard when close friends or family are in denial and you are struggling so hard to keep things afloat. If they don't believe what's going on, they can't be supporting you.
I hope you got any potentially dangerous items out of your house.
Don't forget to to care of you through this whole mess. It is really stressful and you need to be strong and healthy. Take care, 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.


Sun Aug 01, 2010 1:39 pm
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