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 Let's Join Together 
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Joined: Sun May 02, 2010 9:27 pm
Posts: 12
Location: North Las Vegas, Nevada
Post Let's Join Together
Hello. My name is Joan Croft. I live in North Las Vegas, NV, and am the LBD Caregiver Support Group Facilitator for the Las Vegas area. Additionally, I am a Lewy Buddy and involved in a local hub of hope.
Please feel free to post...no questions are stupid...this is a very strange disease and having some local support does go a long way when you feel like you are isolated and there is no one that understands...we do.
You will find that by becoming a member of this forum you will have more support from others and sometimes something that you will read here can make a big change in you and your loved one's lives.

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Joan
Caregave for my dear Mom was diagnosed 2/08; passed away 4/08


Tue Oct 25, 2011 12:53 pm
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Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post Re: Let's Join Together
My name is Terri and I live in Southern California. I don't find a "hub" nearer than North Las Vegas. My son lives there and is in the Air Force. I'm new to gaining knowledge about LBD. Our Neurologist is familiar with it, though not a specialist in that area. He said it is very rare and progresses fast. Everything I've read so far contradicts that. He also said I don't want my husband to have LBD as it's so much worse than other dementias. He is sticking with AD at this point but does recognize the dangers of prescriptions and over-the-counter drugs that are dangerous. He's right, I don't want it to be LBD, but so far, my husbands symptoms, though they've been coming on for about four years now, fit all I've read about LBD. I'm glad I found the LBDA website and this forum. My husband has fluctuating cognition and does not require my constant attention right now, but periods of cognitive distress are becoming more frequent. Taking it one hour at a time. My sympathies in the loss of your mother.


Thu Feb 16, 2012 8:30 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Let's Join Together
Terri,
Sorry you've had to join us here, but welcome. I think the group at UCI is still going on, and there's a group in San Diego. Are they no where near you? You might say what city you are in, as there may be someone else near you.
Robin


Thu Feb 16, 2012 11:01 pm
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Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post Re: Let's Join Together
I'm in Victorville and both of those you mentioned are also in Southern California and nearer than Las Vegas. How do I find them? I went to the area where "hubs" were shown and didn't find anything else labeled as CA.


Fri Feb 17, 2012 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: Let's Join Together
You can find the list of "local support groups" on lbda.org. (Not sure where the "hubs" are of which you speak!)


Fri Feb 17, 2012 11:58 am
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Joined: Thu Sep 07, 2006 1:02 am
Posts: 14
Location: So Calif
Post Re: Let's Join Together
Hello Terri,
There are two Orange county support groups for Lewy Body and FTD. The one at UCI is always on the first Wednesday of the month at 9:30-11:30. The is also one at the Orange County Alzheimer office on the 2nd Tuesday of the month at 1:00-2:30. I am one of the facilitators for this one. My husband was diagnosed with Lewy Body Dementia in 2005. Both of these groups are listed on the Orange County Alzheimer's Association web site, Alzoc.org.
Hope this helps.
Shawna

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Shawna
Caregiver for 59 year old Husband w/LBD


Mon Feb 20, 2012 2:54 am
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: Let's Join Together
Hi Terri,
The San Diego group meets at the Shiley Marcus center off of I-5 and la Jolla Village Dr. I haven't been in a while but I believe it's the first Wednesday of the month, at 2PM. I am in North San Diego, Escondido. Please feel free to contact me anytime. Sorry you are going through this. It isn't a fun journey, try to keep your humor, your faith and your friends. I watched this morning as my husband had a severe seizure, his first. Thankfully he was being showered by our caregiver who is strong enough to hold him. Already he cannot walk, can't talk, feed himself.... I can't imagine how much more one man has to endure........? Sorry, my bitter alter ego is taking over today....Sherry

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Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.


Thu Mar 01, 2012 9:09 pm
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