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 I have been diagnosed with LBD 
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Joined: Mon Sep 10, 2012 9:28 pm
Posts: 3
Post Re: I have been diagnosed with LBD
Thanks to those who got me access to the forum for those of us with LBD. Much appreciate it.


Tue Sep 25, 2012 7:29 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: I have been diagnosed with LBD
Hi Terri,
I see that you mentioned trying to get into the locked forum, we have it locked for the privacy of the people with LBD who communicate with one another, it really isn't for family members ! I hope this gives you an answer as the why !

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Irene Selak


Wed Sep 26, 2012 4:27 pm
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Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post Re: I have been diagnosed with LBD
Irene, you misunderstood the reason for my request. I understand your position, however. My husband has no male friends, no one really to talk to but me. His ability to carry on a conversation is also limited due to the LBD. I've asked him if he would consider meeting with a psychologist or something to discuss the disease and his fears, concerns, etc, as I know he must have them, and he just won't. We are watching Boss together and he seems to be getting something out of it, though there is little in the show dedicated to LBD. His having access to the patient forum would allow him to read what others who have the disease are saying about their experiences, though by necessity, I would have to sit with him and help him follow it. In that sense, I would be privy to the personal thoughts of others. I respect that this is a website dedicated to the patients with LBD and in no way would I want to infringe on that privacy. If you have any other ideas on ways John could relate to others with this disease, let me know as I can surely see that he gets that exposure. I can't get him to a support group in the area, but maybe in the future, he will agree to go. Don't give it another thought. Like I said, I understand completely and respect the policy.

All the best,
Terri

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Terri, spouse of John, officially DX dementia with Lewy Bodies, June, 2012, cognitive symptoms since 2007, active dreams for years before that.


Thu Sep 27, 2012 4:53 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: I have been diagnosed with LBD
Terri,
No I didn't misunderstand , I knew you would be the one handling the private area for your husband and you are right that's where the problem lies , it is a place if they are able to converse with others with the illness ! Have you tried reaching out to churches in the area for possible male volunteers that might be willing to come and visit ?
None of this is easy, I can remember when it was only me that my husband had too !

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Irene Selak


Mon Oct 01, 2012 6:47 pm
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Joined: Fri Dec 21, 2012 9:17 pm
Posts: 3
Post Re: I have been diagnosed with LBD
Very sorry for you, I have just recently been diagnosed with LBD. I have not been able to work for 2 yrs, unable to drive, just the work and driving issue have been one of the most difficult things for me. I'm seeing little green guys, my short term memory is zeor on some days, I have fallen many times and I'm so very very angey at this time. I'm just letting you no what is happening, not complaining. Hopefully we can chat.

Ken


Sat Dec 22, 2012 11:44 pm
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