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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 I have been diagnosed with LBD
Hello, this is my first time posting. I am 63 years old and have been diagnosed with probable LBD. Are there other members with LBD or caregivers? Thanks, Smithdr.


Fri Sep 14, 2012 6:00 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: I have been diagnosed with LBD
Welcome! Yes, there is a private sub-forum here just for those diagnosed with LBD. I'm not sure how many current members there are or exactly how to access it but I'm sure someone will help you out here shortly. God bless!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Fri Sep 14, 2012 6:08 pm
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Joined: Mon Sep 03, 2012 9:30 pm
Posts: 5
Post Re: I have been diagnosed with LBD
Thank you Pat. I thought there was a site for "us" but I can't access. I've requested assistance from the moderator.


Fri Sep 14, 2012 6:25 pm
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Joined: Wed May 02, 2012 8:26 pm
Posts: 55
Post Re: I have been diagnosed with LBD
Could someone explain the difference between the regular forum and the private forum. And also how to access it???

Thanks,
Susieg


Sat Sep 15, 2012 8:35 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: I have been diagnosed with LBD
I'd like to be able to help you. I'm a moderator for part of this forum but not the part you refer to. Perhaps the moderator is gone for the weekend. I hope she will respond to you very soon. Hang in there!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Sep 15, 2012 9:33 pm
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Joined: Fri Mar 30, 2012 7:29 pm
Posts: 10
Post Re: I have been diagnosed with LBD
Dear Smithdr-

I along with Pat moderate certain sections of the forum, my specific moderation area is the welcome section. I wish I could grant access for you to that section, but I do not have the credentials. I have reached out to the moderator who can provide you information on gaininf access to the private forum area, and have asked her to reach out to you with that information. The forum you reference is listed as "Support group for those with early LBD" it is a private sub-forum for early-stage LBD diagnosed loved ones. In addition to helping you get access to the private forum, please let us know what we else can do to help connect you to people, information, or support. That's why we are here.

If you do not hear from the forum moderator for that section over the weekend, do not worry-she will respond to my communication just as soon as possible.

Take care of yourself. Thank you for reaching out-let us know if you have any other questions.

Kathleen

_________________
Kathleen B.
LBDA Forum - Welcome Moderator Volunteer
http://www.lbda.org


Sun Sep 16, 2012 12:20 am
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Joined: Fri Mar 30, 2012 7:29 pm
Posts: 10
Post Re: I have been diagnosed with LBD
Dear Susieg,

Good evening.

I think I can answer your question about the private support group sub-forum area vs the rest of the forum topics:

I believe the main difference between that sub group and the other topic areas listed on the forum, is that it requires approval from a moderator to allow access to give those who have been diagnosed with early stage LBD disease and/or their loved ones, a private area and online support group to openly discuss experiences. Let me know if you would like to know more information, I would be happy to find out more.

Take care!


Kathleen

_________________
Kathleen B.
LBDA Forum - Welcome Moderator Volunteer
http://www.lbda.org


Sun Sep 16, 2012 12:24 am
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Joined: Mon Sep 10, 2012 9:28 pm
Posts: 3
Post Re: I have been diagnosed with LBD
Thanks everyone; I can be patient :lol:


Sun Sep 16, 2012 7:51 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
I had tried to access that forum and found that it was private. My husband is not a talker and I'm totally in the dark about how he feels or what he's going through. Yes, he gets weepy and wonders what's happening to him. He's sad most of the time. He's scared. But he doesn't discuss anything else. He does sometimes understand that he's just had an hallucination or something and sometimes he shares that with me, but most of his concerns he keeps to himself. If there are diagnosed patients out there who can, or are willing, to share their experience, I think it would help caregivers. Smithdr, welcome to the site and I pray that you can find answers here. The resources at LBDA have been a godsend to me as caregiver and I'm sure you will find many caring people here that are willing to help in any way they can. Bless you.

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


Tue Sep 18, 2012 9:10 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3430
Location: Vermont
Post Re: I have been diagnosed with LBD
I am so sorry for your diagnosis and hope you can find good support systems both on here and where you live. Have you tried to find a support group where you live? I wish you all the best, 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.


Tue Sep 18, 2012 8:43 pm
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Joined: Tue Sep 18, 2012 10:14 pm
Posts: 6
Location: Colorado
Post Re: I have been diagnosed with LBD
Sir, I would like to put you in touch with my father, diagnosed with LBD, but high functioning to date. He has written most of a book about his experience. I think you two could be of mutual aid. I know he would appreciate communicating with another guy going through this. He is 81 and married, still living at home with in-home help and outside daycare. He doesn't type well, so I could type for him. His background is as a certified psychotherapist and addictions specialist. He wrote a best seller on alcoholism recovery. He is very verbal, loves history of the 20th century, and has a theater/directing background as well. Let me know if you are interested.

_________________
Tracey, adult child of father, age 81, diagnosed with LBD in 2012. Father lives at home with his wife and is functioning in the 4.25 range on the Allen scale.


Wed Sep 19, 2012 5:57 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: I have been diagnosed with LBD
I sorry for the delay in a reply as to the private area for people who have LBD, so if this question has not been answered please contact me at jselak4495@aol.com and I can get it taken care of , sadly I am out of town right now dealing with an accident on my way here and loss of my car and we all know what a pain that can be !

_________________
Irene Selak


Fri Sep 21, 2012 12:13 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
Tracey, What is the name of the book? I would love to get it and perhaps share it with my husband. He also can't type, his vision is going from macular degeneration but he can still see enough if he takes his time. I would like to see if we can get access to the forum for patients so my husband could at least read what others are going through. He doesn't talk about it much and I feel so bad that he has no one to really talk to about it. He has been watching "Boss" with me on Showtime. Some disturbs him but for the most part, he's getting something out of it.

All the best,
Terri

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


Fri Sep 21, 2012 3:09 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: I have been diagnosed with LBD
I have sent a message for our site administrator to admit Smithdr to our private area, not sure when it will be done but I am sure you will be e-mailed when it is done. I will be honest and say it doesn't get a lot of use but it is there for people who would like to use it.

_________________
Irene Selak


Sat Sep 22, 2012 6:16 pm
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Joined: Tue Sep 18, 2012 10:14 pm
Posts: 6
Location: Colorado
Post Re: I have been diagnosed with LBD
Terri: Thanks for your reply about my father. The name of the book is Fast!, but it has not been published yet. I will check with my father to see if he would agree to post a chapter or two on the forum under this post.

Tracey

_________________
Tracey, adult child of father, age 81, diagnosed with LBD in 2012. Father lives at home with his wife and is functioning in the 4.25 range on the Allen scale.


Tue Sep 25, 2012 4:24 pm
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