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 Instructions for using the forums 
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Instructions for using the forums
To help you use the forums:
These instructions will help you:
http://lbda.org/forum/faq.php

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Irene Selak


Fri Apr 03, 2009 8:44 am
Profile WWW

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
Irene,
I found this FAQ hard to follow if you aren't computer literate. Is there no tutorial?
Robin


Fri Apr 03, 2009 11:43 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post 
Robin,
This is the only instructions I have found and am aware of, Sorry!

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Irene Selak


Wed Apr 08, 2009 9:38 pm
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Joined: Sat Jan 17, 2009 1:27 pm
Posts: 29
Location: Maryland
Post 
Not sure where to ask this but is anyone else having problems with the bell or whatever it is thats supposed to be orange but is not to inform you there is a new message? I am rereading old posts that tell me they have not been read etc(which I don't mind)...I have re-booted. Is it me? Not that computer savy, any suggestions would be greatly appreciated.
Thanks
Tricia


Wed May 06, 2009 3:04 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
Tricia,
I wasn't sure where to post about this either, but I posted it here:
http://lbda.org/forum/viewtopic.php?t=1466
This problem comes and goes for me. It seems to be working fine for me for the last week or so.
Robin


Wed May 06, 2009 4:33 pm
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Joined: Sat Jan 17, 2009 1:27 pm
Posts: 29
Location: Maryland
Post 
Thanks Robin,
I didnt want to be the only one, thought I was doing something wrong with the computer but your right , goes in and out. Mostly the past 2 weeks.
Tricia


Wed May 06, 2009 8:50 pm
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
Post 
When you finish reading a thread, do not hit the "back" button on your computer, or the little bell thing won't register that you read the latest posts on that thread. You have to scroll back to the top of the thread, or the very bottom, where you will see in purple:
Lewy Body Dementia Association, Inc Forum Index > (forum name)
Click on the forum name if you want to see other postings/threads in that specific forum, or click on LBDAIFI if you want to go back to the main list of forums.

Also, if you are not logged in when you read postings, the system won't know that *you* are the person who read those posts and the bell will not change to indicate that something was read.

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Renata (and Jerome-in-Heaven)


Thu May 07, 2009 12:34 am
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Joined: Fri Jun 19, 2009 11:23 am
Posts: 200
Post just diagnosed
Hi, My name is Mary and my husband Paul was just diagnosed with LBD.
First of April 2009, I thought he might have had a stroke so I called an ambulance. He was admitted to the hospital and he had a CAT scan, MRI and EEG. One day I was told he had Parkinsons, the next day Alzheimers. They came to that conclusion by a five minute mini mental exam. That didn't set well with me as I thought he should have gotten a more through mental exam before putting him in a class and medicating him. They sent him home from the hospital and he was home one day before getting extremely sick, vomiting etc. His abdoman looked like a watermelon and he could barely get his clothes on. Back to the hospital. This time they found his bladder had 1600 CC of urine. Enough to put a blockage on everything else. They put a catheter in him and sent him home again. As I am a retired RN that wasn't distressing me but I just couldn't understand how Alzheimers could come on so fast and what did it have in common with urine retention. Besides he didn't seem to have a memory loss problem. He had been having hallucinations and delusions. Mostly during the night. Both of us were very sleep deprived. We waited for two months for a neurology consult which we had two weeks ago. The neurologist was very kind and extremly through and spent a lot of time with us. He gave us a diagnosis of Lewy Body Dementia. As he had already been on Arecept he was then started on Namenda. Mentally my husband is doing well but still has some very odd behavior. He is on Seroquil XR 50mg for the delusions and hallucinations and it seems to be working fairly well. Our biggest problem now is the urine retention. The first urologist gave us no hope at all. She said he would be on a catheter for the rest of his life. I sure was not pleased with that because he has had two big time UTI's already. Yesterday I went for a second opinion. The first thing the doctor said was to get rid of that catheter and he put him on a intermittant catherization schedule. Today I feel like a large boulder has been lifted from my chest because at least the second urologist gave me hope. The arecept is working and my dear husband is peeing some on his own. I hope I didn't make this post too long.
Mary


Fri Jun 19, 2009 8:31 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post 
Dear Mary,
Welcome to the LBDA forums and just for the record there are no too long posts here we listen to all, I am sorry for your husband's DX but knowing is also power, I am thinking it really was the urine retention which is what "seemed" to bring on the dementia so fast, often when they have a problem else where they can take a nose dive in the illness, I agree with the second urologist, cathers can really present problems with UTI's and they are very troublesome to LBD'ers, May I suggest :

http://www.lbda.org/feature/2126/lbd-re ... proach.htm


http://www.lbda.org/feature/1942/an-int ... mentia.htm

Feel free to post as often as you want and if you post in the area that most fit your question or comment you will get more answers.
Good Luck!

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Irene Selak


Sat Jun 20, 2009 9:09 am
Profile WWW

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

Sorry you've had to join us here. Could I suggest that you post a new topic in the Introductions area? Your current post is in a topic called "Instructions for using the forums" so people are not apt to look in this topic for newcomers.

In the experience of members of our local support group with urinary retention (as opposed to incontinence), intermittent catheterization works wells. The only challenge is that usually the patient is unable to do this himself/herself (or eventually unable to do this) so the caregiver must take over the job. People can still get UTIs with self-cath'ing, however.

Robin


Sat Jun 20, 2009 7:06 pm
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Joined: Tue Jun 09, 2009 11:11 pm
Posts: 117
Location: Tucson AZ
Post How to access most recent posts
Hi, is there a way to get quickly to what the current posts are? I keep looking down the list for today's date but you probably know a better way. Thanks


Thu Jun 25, 2009 1:18 am
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Joined: Mon Mar 12, 2007 8:29 am
Posts: 69
Location: uk
Post 
Hi Lori

If you log in the forum gives you some options just above the purple line, one of which is view posts since your last visit.

Hope that helps

Dawn


Thu Jun 25, 2009 6:37 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
Lori,

There is a circle with a piece of paper (or a bell?) in it next to each post and each area of the Forum. If the paper (or bell) is orange, it means you haven't yet read that post.

The paper (or bell) coloring system doesn't work all the time. See:
http://lbda.org/forum/viewtopic.php?t=1466

What I do to force the color of the paper (or bell) to change is I click on "Mark all topics read." You can find that line about a third of the way down in each area of the Forum, above the column "Last Post."

When I say "area" of the Forum, I'm referring to "Welcome to our Forums," "Introductions," "Symptoms and Diagnosis," etc.

Robin


Thu Jun 25, 2009 10:32 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 463
Location: Minnesota
Post Mom and me
Mom lives with me. She is 87 and has LBD. She is, we believe, entering an advanced stage of the disease. We're told that she has aspects of Parkinson's and Alzheimer's associated with her dementia. She has had a benign tremor for a few decades.

Mom's father was diagnosed with Alzheimer's in the 1960's. Her mother suffered from dementia, though the trauma of several amputations likely contributed to her dementia. Mom had to handle both situations, so she knows what is involved in caregiving and is trying hard to make things easy for her daughters. She even thanks me for taking care of her.

My goal is to keep Mom in our home for as long as possible, until she is not all that aware of moving into a skilled care facility. But I have a full time professional (which makes it more than full time) job. I have an employer who has been extremely understanding so far. But the institution's finances are forcing more layoffs each fiscal year and I worry about how expendable I am becoming. (Mom's at a senior day care during the day, until my sister can bring her home.)

I'm lucky. My Mom hasn't shown much in the way of behavioral problems. She can't wander because of physical impairments. And, I'm lucky to be sharing this experience with Mom. (Ask me in a year, as the disease progresses.)

I can use all the information and support I can get, so here I am.

_________________
Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Tue Dec 29, 2009 6:11 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
katelu,
could you please start your own topic for this post?
thanks,
Robin


Tue Dec 29, 2009 6:22 pm
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