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 Instructions for using the forums 
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Joined: Mon Mar 08, 2010 9:32 pm
Posts: 120
Location: Dumfries Va
Post Introduction
I am a 68 year old caregiver for my 68 yar old wife of 45 years. In 2004 she was diagnosed as have athritis. When her PCP did not seem to be concerned about her tremors and problems walking, she was referred to a Neurologist who was a jerk. In the middle of chewing on his Mc Donalds burger he said yep, youhave Parkinson;s. When we doubted hi, he sent her for a MRI. Then he said nope, you do not have Parkinson's. After another 2 years we ditched her PCP and went to another who send her to a caring Neurologiest. He diagnosed her as Parkinson's. Then in July of 2009 he changed the diagnosis to Defused Lewy Body Dementia. My wife is now seeing two very knowledgable and caring Neurologists from Georgetown Medical Center Movement Disorders group. He has started her on PT and changed some medications. Since going off Aricept and Seroquel and sarting the Exelon patch, her memory has become much better. She still beleives that we are in someone else's house. This is hard and I do not look to the future. No support groups in Northern Virginia so here I am.


Tue Mar 09, 2010 6:58 pm
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
mariesmac,

Welcome but sorry you have need to be here.

You've certainly had your share of bad MD experiences.

The confusion about the house is a delusional disorder called "Capgras syndrome."

Robin


You might start a new post/thread in the same "Introductions" area rather than replying to a thread about how to use the Forums. More people would read your post that way!


Tue Mar 09, 2010 7:40 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post 
Mariesmac,
Welcome, I too am sorry for your need to seek out such a group as ours, I am sure you will find useful information here and people who walk to same path as you do.
Come often and try and post in areas that best fit the question or comment!
Also there is a caringspouse online support group that have several men in it if you are interested !

_________________
Irene Selak


Tue Mar 09, 2010 7:51 pm
Profile WWW

Joined: Sun Aug 26, 2007 9:44 pm
Posts: 118
Location: Nashville, Tn
Post Re: Instructions for using the forums
Irene, I would like to add my name or age and my husbands name or age so that it posts every time I submit an entry... I find that so helpful when I read others posts.... I don't know how to do that? thanks, Cheryl (Cheryl 64 - caregiver.... Ron, husband - 59 - patient)


Sat Dec 11, 2010 7:33 am
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Instructions for using the forums
Cheryl,
If you click on profile at the very bottom left hand corner of your own post you can edit or add to signature, let me know if this helps you !

_________________
Irene Selak


Sat Dec 11, 2010 9:51 pm
Profile WWW

Joined: Wed Dec 22, 2010 12:42 pm
Posts: 5
Post Re: Instructions for using the forums
Hi Irene,,
Tried to use the site you gave but it was not available.
So will tell you here , any advise as where to go post let me know.
My husband was diagnosd tow years ago with depression and lost his job, then AD was diagnosed and then went to Va and the dr. there suggested he might have LBd .
still looking for an answer.
From reading about LD which I have never heard of he fits the bill. The weight loss the sleepless fits at night (which he never had before ), the constipation, the now started seeing people that are not there, not often, but still sometimes , he movements are getting slower and voice is getting lower.
Some days he is right on and others lost.
Well thats my story ,
If you can help me get on the right forum that would be great
Suzy


Wed Dec 29, 2010 5:08 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Instructions for using the forums
Suzy,

When you see the main page of the LBDA Forum, at
index.php
you see several areas of the Forum -- Welcome (this includes Welcome and Introductions areas), LBD Information (this includes Symptoms and Diagnosis, Behavioral Issues, etc), etc.

You posted your nice introduction in the Off-Topic Posts area. I think it will get more eye balls on it if you post it to the Introductions area. Click here to enter the Introductions area:
viewforum.php?f=11
Then click on the "new topic" button to start a new topic about yourself. Or, you can click here to go directly to a "new topic" in the Introductions area:
posting.php?mode=post&f=11

Good luck,
Robin

PS. I don't think Irene was saying to go to a particular site. She was suggesting clicking on the word "Profile" at the bottom of any of your posts so you can edit your own "signature."


Wed Dec 29, 2010 7:12 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Instructions for using the forums
Suzy,
I hope Robin's post has helped she explained it well ! We often suggest going to the best fitting area so more people will see it and offer a suggestion.

_________________
Irene Selak


Wed Dec 29, 2010 9:21 pm
Profile WWW

Joined: Wed Nov 23, 2011 5:56 pm
Posts: 2
Location: Nebraska
Post Re: Instructions for using the forums
I already sent a note directly to someone but I too have great difficulty in using this site and I am computer literate. Now it may be my anxiety getting in the way of preventing me from negotiating around site but I think not. I hope I can figure out or someone can tell me or otherwise post in simple directions how to make a post. As it is I see more admonitions on the website thatn helpful instructions. I know I get cranky with all but I do get frustrated...but still appreciate the dedication of volunteers,. Wish I could do this myself.


Fri Nov 25, 2011 4:52 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: Instructions for using the forums
Hi - welcome to the forum. You may want to introduce yourself, tell your story, in the Introductions section so people will see it. The Instructions portion is usually instructions by the LBD staff about procedures, or whatever.
If you have specific questions, recommendations or whatever, look at the appropriate (or closest) topic area, click on that, and then click on "New Topic" if you have a new topic. There are literally hundreds of topics on here, so you might want to search for something that looks like it applies to your topic and post there "Post Reply" instead of starting a new topic if you desire.
It's very simple. You made this post so I'm sure you can make other posts, especially since you said you are computer literate.
Again, welcome and sorry for your need to be here. 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.


Fri Nov 25, 2011 5:24 pm
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Instructions for using the forums
mjffw -
Looks like you figured out how to post! Yes, one thing the website is missing is a user-friendly "how to" guide. You might check out the FAQ to see if there's anything useful there.
Robin


Sat Nov 26, 2011 1:15 am
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Instructions for using the forums
Hopefully in time the site will get a bit easier for you, if you see something you would like to reply to just hit the reply button, if you want to start a new subject in an area for a question or comment just hit start new post, I hope this helps !

_________________
Irene Selak


Sun Nov 27, 2011 12:55 pm
Profile WWW

Joined: Sun Oct 13, 2013 8:26 pm
Posts: 1
Post introduction of myself
Hello, I am new to this site and I hope to get some valuable feedback and well as give feedback. My father first had a mini seizure or stroke, but I'm not really sure on that. Went from doctor to doctor after noticing declining mental issues. Finally found one that correctly diagnosed him with LBD about 6 months ago and all can do now is see a psychiatrist who specializes with mental dementias. None of the medications prescribed have helped. My mother and myself (daughter) just don't know what to do anymore. We cannot go anywhere in public, have visitors, watch t.v. and then the constant hallucinations and trances.


Sun Nov 17, 2013 10:34 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Instructions for using the forums
Nelda, welcome! We have so much to share with you. Maybe you should start a new thread introducing yourself. It might get buried in this old thread. :-)

_________________
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.


Sun Nov 17, 2013 11:01 am
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: Instructions for using the forums
Hi Nelda - Sorry for your need to be here. If you make your postings (questions, comments, etc.) under the appropriate headings you are more likely to get more responses. I hope you do a lot of reading on here, especially those topics that are most pertinent to what's going on with your dad right now. Yes, your lives are going to change a lot with what is going on with your dad, so be sure you get support here and from family and friends to help you navigate this very challenging course. 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.


Sun Nov 17, 2013 2:21 pm
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