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A Large Yippie
BillBRNC
Posted: Saturday, December 30, 2017 9:01 AM
Joined: 12/2/2015
Posts: 1018


I think some folks here might have suggested this before, but I forgot about it. Just a couple days ago maybe in response to someone telling me but I can't recall, I found the Lewy Body Dementia Facebook page for only people who have been diagnosed with LBD. This is what I have been looking for and hoping for. The new version of this forum started early this month, and it has I forget buy maybe 30 people with DLB signed up. It is run by LBD Association, and they must approve entry to the board, and the messages and comments and such are not visible to the public. They have similar board for caregivers of LDB people, and same thing about approval to be member. Let me say this is godsend to me. These are real people who know exactly what I am experiencing and I can ask questions get answers right away. 

I will continue to come here for Musings, never pass this by. I think someone here suggested the Lewy Body Facebook, but I don't remember who did, but I thank you if you did. I can't tell you how good it feels to see others comments and get feedback on mine and theirs. Doctors don't know what is happening in my brain and body, nobody does except for people who have it. And it really is greatly different from Alzheimer's, but just as bad in other ways, and with supposedly shorter life outcome. Well, that is my Musing for today. Bill.

**This post was edited by the ALZConnected Moderator on 01/02/18.**

BlueSkies
Posted: Saturday, December 30, 2017 11:08 AM
Joined: 2/24/2016
Posts: 1096


Thanks for posting info Bill.  I do hope you continue to post on musings.  I so enjoy your posts.

Lots of love to you...BlueSkies


BillBRNC
Posted: Saturday, December 30, 2017 11:49 AM
Joined: 12/2/2015
Posts: 1018


BlueSkies, first thank you for kind word. Also, the DLBA FAcebook thing also includes FTD because the of the fact that it is so much similar in many ways to DLB. For what worth, from the things you have said, it would seem to me that your symptoms are more DLB than FTD, but then I no expert. The good thing about the DLBA board is that you can ask questions and get information about who else there has your symptoms. There was a new person with FTD who signed up shortly after I did. Up to you, but we can stay in touch regardless via the comminication system they have here at Alz. Take care. Bill.
jfkoc
Posted: Saturday, December 30, 2017 11:53 AM
Joined: 12/4/2011
Posts: 19631


And a big yippee from me too.

BTW...how did your trip go? 


lisabramey
Posted: Saturday, December 30, 2017 12:24 PM
Joined: 3/20/2015
Posts: 96


Dear Bill,

I am happy you found whay you were looking for. I agree with your post about the other board. I post very little as I am not in the clique.

Best Wishes,

Lisa


Keep It 100
Posted: Saturday, December 30, 2017 12:37 PM
Joined: 2/26/2017
Posts: 582


Bill I just got off the phone with a friend in Ca whose MIL has Lewy Body...and they are struggling. I was wondering if you could post the exact name of the FB page so I can direct them to it??
jfkoc
Posted: Saturday, December 30, 2017 1:04 PM
Joined: 12/4/2011
Posts: 19631


Please also share;

Dementia with Lewy Bodies and Parkinson's Disease Dementia by J. Eric Ahlskog


BillBRNC
Posted: Saturday, December 30, 2017 2:13 PM
Joined: 12/2/2015
Posts: 1018


Keep It 100 wrote:
Bill I just got off the phone with a friend in Ca whose MIL has Lewy Body...and they are struggling. I was wondering if you could post the exact name of the FB page so I can direct them to it??

I can't seem to figure out how to copy and paste it here, but if you go to www.LBDA.org you will get to the main page, then at the toop right, you click on caregiver, and go to that page, and the look on the left side down a little bit and you will see forum, and click on that. Only way I know for you to do it, since I can't seem to copy and past it here. It is a good forum.

I  



BillBRNC
Posted: Saturday, December 30, 2017 2:16 PM
Joined: 12/2/2015
Posts: 1018


Jfkoc, I guess it went well expcept when it didn't go well. The group things did not work out too well for me and I had to leave, but I stayed for the meat of the gathering. I just can't seem to handle groups, talking all around, noise and that sort of thing. This very true at late afternoon to bedtime when I just get a lot worse without anything bothering me. I'm glad I went, and my wife was glad as well. Thanks for asking.
Keep It 100
Posted: Saturday, December 30, 2017 2:34 PM
Joined: 2/26/2017
Posts: 582


Perfect, thank you!
chrisp1653
Posted: Saturday, December 30, 2017 3:15 PM
Joined: 1/23/2017
Posts: 1285


Bill, I've noticed that in most things, it goes well, until the point when it doesn't. If I'm lucky, the downhill slope after that is gentle, and the letdown easy. If not, then everything spirals fast, and it hurts when I land. And as far as social gatherings, I have made myself the odd man out for most of my life, although I suppose I can handle them better now than I used to. It's only taken me 60 years or so to reach this stage.

Lisa, I suppose at times , there does seem to be a clique mentality here. I guess I'm just dumb enough to not care much, and so I barge in if I think I have something to contribute, or if ( said the blind man ) I see someone stomping on toes where there is no need. I've spent a good portion of my life putting my foot in my mouth, and only recently have I decided that maybe that's my calling. A great talent to have, right ?


jfkoc
Posted: Saturday, December 30, 2017 3:53 PM
Joined: 12/4/2011
Posts: 19631


There is certainly a "group" of posters on EO but a group only because they post regularly. Just jump in.

Bill...for year Dick would quietly sit with a book.  On Christmas he got books and was  happy as a clam sitting and reading them. We all enjoy the memory.