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 My name is YvonneSC 
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Joined: Tue Mar 23, 2010 5:08 pm
Posts: 2
Location: Kentucky
Post My name is YvonneSC
Hi,
This is my first time here and I guess I just need support. In March of last year, my husband hit me with the truck. Pinned me between the front bumper and the wall of the garage. When the police got to our house, they said he didn't need to be driving any more. That I agreed with!! The next week I was going to the doctor to see about my leg where it was hit and he said he needed to go see a doctor also. He hadn't been to the bathroom to pee in over 7 days. News to me. Anyway, to make a long story short, I forgot my appointment and took him. In the doctor's office, they drew over 800cc's of urine from him, sent him home with a bag which he had to wear for a week. His sister, a RN, came up and took it off. Our family doctor wanted to see him, and immediately put him in the hospital. A wonderful doctor saw him, diagnosed him with Lewy Body Disease, told us what that meant and sorta what to expect. He was put on Aricept and Lamotrigine for depression. He is getting worse as he refused to take the Lamotrigine anymore. "There is nothing wrong with me. My mind is just as good as it's always been and I'm not depressed." He is getting where he can't walk as good, stumbles more and has to use a walker, which he says makes him look OLD. He's 83! He talks in his sleep and tells me he did not, sits in his chair, talks out loud and uses hand gestures at times especially when he gets really excited. I know this is a long letter but I guess what I need to know is, Is this normal? If he has only been disagnosed about a year, is he progressing faster than most or about the same? Thanks for reading this long letter.
Yvonne

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Yvonne


Wed Mar 24, 2010 9:44 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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All of this is quite normal -- the symptoms and the decline. Sorry you've had to join us here, but welcome.


Wed Mar 24, 2010 12:12 pm
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Joined: Tue Mar 23, 2010 5:08 pm
Posts: 2
Location: Kentucky
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Thanks for the welcome, Robin.

You said all of what I posted was normal but is it supposed to happen like that in about 1 year?

Yvonne :cry:

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Yvonne


Wed Mar 24, 2010 1:42 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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The rate of decline varies from person to person, and year to year. Everything you said seemed within the bounds of what we've seen with others.

A fast motor decline would be someone who is walking 100'% normally to being wheelchair-bound in less than a year. Your husband's decline doesn't seem fast to me. I imagine it's quite shocking to you.

If your husband is truly depressed, then you might speak with the MD about slipping medication into food/drink.

Does your husband have bipolar disorder? I've usually heard about Lamictal (lamotigrine) in that context. And for seizure prevention as well.


Wed Mar 24, 2010 1:55 pm
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Joined: Fri Jun 19, 2009 11:23 am
Posts: 201
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Yvonne
My husbands decline was very fast also. He is 72 and was diagnosed in April 2009. Not quite a year yet. He also had urine retention. They removed 1800 cc from his bladder. He had started to be incontinent, (at least so I thought) it was over flow incontenance. He had a catheter for a month while some medications took effect to reduce the size of the prostate. His confusion seemed to come on over night but when I look back there were little signs off and on. His symptoms came fast and furious. Delusions, Hallucinations, CapGrass, confusion etc, etc. He had extremity stiffness and shaking of his hands. He became unresponsive and we called an ambulance.
To make a long story short, he was put on Aricept, Namenda and Seroquel. (gradually, one at a time) At this time, (not quite a year later) He is way more "with the program". All his symptoms have subsided or gotten much more mild. I know he isn't well and never will be, but if we can live out the rest of our normal lives at the stage he is at, then I won't complain.
This forum has been my life saver. Every thing I have been through and still am going through, I know that I am not alone.
Keep posting. It is the one place people will listen to YOU.
Mary


Wed Mar 24, 2010 3:15 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
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My husband also began having urine retention about eight years ago. I had to take him to the ER several times to be catheterized. I finally got a catheter from his urologist and cathed him when necessary. He now has an indwelling Foley catheter. He is 80 years old. One thing that surprises me is how many LBD patients are not on any carbidopa/levodopa medications. My husband, who is also on the Exelon patch for dementia, was put on the Stalevo [carbidopa/levodopa/entacapone] in 2005 and it made more difference to his condition physically and cognitively than any other medication.

Welcome to the forum. You'll get lots of support here! :) --Pat


Wed Mar 24, 2010 3:58 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
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Hi Yvonne - welcome, and I too am sorry you have to be here. But this is a great place for emotional support, personal experiences and advice. Any question you have, you can be sure that someone here has probably experienced it with their LBD LO. If you read through the Intros and other postings, you'll see how fast some of our LBD LOs have declined. My dad, overnight, lost all his physical abilities and a lot of cognitive functioning. Things came back SLIGHTLY, but his decline was like falling off a cliff. I won't go into the details here - you can read all this stuff in our posts. But you are not alone, so getting on this forum should help you, and also I find the chat extremely helpful. Lynn


Wed Mar 24, 2010 7:17 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Yvonne,
Welcome to the LBDA forums, I too am sorry for your need to be here but as pointed out it is a great place to compare notes and good support system, There is also a Caringspouse support group online if you are interested, everything you mentioned in your post sounds very LBD to me also, the urine retention is something we also went through in our situation, come visit us often and feel free to post as often as you want, I only ask that you try and stay in the areas that best fits your question or comment, more eyes will be on it to offer help!

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Irene Selak


Wed Mar 24, 2010 10:22 pm
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Joined: Mon Nov 23, 2009 12:01 am
Posts: 62
Location: Wake Forest
Post Hi Yvonne
Welcome, I am glad you have joined the group. The people here are wonderful and will give you a lot of support. Same scenario with my Mom, declines are rapid, then stable for periods of time and then more decline. This is the nature of the disease.

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All I am, or can be, I owe to my angel mother. --Abraham Lincoln


Thu Mar 25, 2010 4:01 pm
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