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 Not Sure What Is Happening? 
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Joined: Wed Jan 25, 2012 8:26 pm
Posts: 3
Location: Central California Coast
Post Not Sure What Is Happening?
I'm writing to see about finding some answers to my husband's situation. My husband is a very intelligent man. He is having a lot of things going on including depression, acting immature,sometimes acting like a teenager again, agitation, clingyness, change in personality, trouble trying to stay focused, daytime sleepiness, active dreams, night sweats, urinary frequencies, unable to come up with the correct word at times, a nervous reaction to Claritin and several others. He also seems to be having a toe and leg that jumps, tremors or twitches which I wonder if it is the beginning of Parkinson. His sense of smelling is also very weak if not gone all together. Recently his depression medicine was changed to Zoloft and he seems to be able to think clearer now. I also realize that it is next to impossible to diagnose LBD. We've just recently had a CT done of his brain, but from my research, I'm wondering if that will show anything either. He did well on the MMSE when the Nurse Practitioner gave it to him when I shared my concerns with her. But again, that can be expected early in the disease from what I've read. Very few in my field of family and friends, seem to understand the possibilities of this, still ruling out LBD. Hallucinations have only happened twice, but active dreaming happens on an average of once or twice a week. I've been kicked twice, but almost connected with me during his dreams several times. I as the caregiver don't know where to turn. I feel confused and unsure. I don't know if he has LBD or if it is a midlife crisis, but everything I read points to the fact that he might have LBD. Any ideas or thoughts on these things would be appreciated.

Thu Jan 26, 2012 3:23 am

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Not Sure What Is Happening?
Everything you've written sounds like it could be LBD. As you are finding out, there is not a simple biomarker that can be checked or scanned to make that diagnosis.

I think what I would start with is the active dreaming. There are tests to identify what is going on there, and a good sleep center doing an overnight study will be able to do that. If it turns out to be RBD (REM sleep Behavior Disorder), that is a huge clue to LBD. And as a bonus there is an easy treatment for that symptom that works about 90% of the time.

Getting a doctor who understands LBD specificlly (and doesn't think all dementias are alike) is an important component of a good treatment plan. Where are you located?

Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Thu Jan 26, 2012 1:12 pm

Joined: Wed Jan 25, 2012 8:26 pm
Posts: 3
Location: Central California Coast
Post Re: Not Sure What Is Happening?
Thanks for the information. Located on the Central Coast of California. Currently working with the Veterans Administration. Husband served in Vietnam, but never touched "brown water or soil" so VA doesn't accept any responsibility for possible problems, but at least they are seeing us. Thank the Lord! Thank you again.

Thu Jan 26, 2012 1:18 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Not Sure What Is Happening?

You might check out posts by Cindi (username is cdw, I think). Your husbands' stories are remarkably similar.

I coordinate a Lewy Body Dementia support group in Northern California. The #1 suggestion I share with everyone in the group -- you must call the nearest California caregiver resource center (see They can help YOU, whatever the diagnosis.

Where's the nearest VA to you? My impression is that the SF VA and San Diego VA are the best in California.

The diagnosis of LBD can only be confirmed upon brain autopsy. Ridiculously, I don't know of any VA in California that has a brain bank, so they aren't even interested in collecting the brains of Agent Orange folks!


Fri Jan 27, 2012 12:46 am

Joined: Wed Jan 25, 2012 8:26 pm
Posts: 3
Location: Central California Coast
Post Re: Not Sure What Is Happening?

Thanks so much for your suggestions. I will check out Cindy's posts. We live in the middle of the state. We are about 6 to 7 hours from SF VA and 6 to 7 hours from San Diego VA.

Thank you again.

God bless

Fri Jan 27, 2012 1:48 am
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