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 New in SoCal 
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Joined: Thu Aug 26, 2010 7:11 pm
Posts: 31
Post New in SoCal
I'm so glad to have found this site and forum. My mom had been showing signs that she was not able to live completely indepdently for about a year or so, but she wouldn't do anything. Then she had a fall, which was the best thing that could have happened. She was in the hospital for a week and deemed that she couldn't live alone or drive anymore. She wasn't seriously hurt and after another 4 weeks of physical therapy in a skilled nursing facility, physically she was better than she had been in years.

At this point she couldn't argue, but also didn't have the income or resources for assisted living. Mom has been with us here since Aug 31, 2009. So, here we are coming up on our first anniversary and I learn today that she has LBD.

Physically, she was a total wreck before the fall. She was a diabetic who lived on cookies, candy, chocolate and ice cream. Her blood pressure was sky high, etc... I was feeling so victorious because her A1C's have been sub 6, blood pressure normal, lost 30 lbs and much more mobile. Also, started her on antidepressants last Sept and that seemed a lot better. However, cognitively, I kept seeing things that were disturbing to me.

Her doctor gave me aricept in oct and then in Feb I asked him to give her "remember three things" and was so disappointed that he gave her help so that she could get two instead of one and sent me off with a prescription for exelon. In May I was so frustrated because I knew something wasn't right, but her primary was of no help. She was feeling weak and a few things abnormal on a Sat so I took her to ER. Everything checked out. I was really hoping they would do an MRI


Thu Aug 26, 2010 10:25 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: New in SoCal
It is odd that the MD facilitates the cheating but I've heard many families say the same thing!

So is she on both Aricept and Exelon? Who gave her the LBD diagnosis? There are some decent dementia MDs in SoCal. What city are you in?


Fri Aug 27, 2010 12:46 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: New in SoCal
A psychologist was interviewing my husband in his hospital room in AZ and asked, "Do you know where you are?" He answered, "Of course!" She wrote something on her notepad. I told her to ask him where he was. She asked, "Where are you?" He answered, "London!" Don't they really want to know if the patient is oriented? It sometimes seems that THEY are the ones in denial. Maybe because they don't have any solution.

BTW, welcome! Sounds like you've been doing a splendid job with your mother. God bless you!

_________________
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 Aug 27, 2010 12:53 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: New in SoCal
Welcome Stepping_up

Hopefully you will be able to get your Mom to a more LBD savvy Doctor and get things under control a bit, I am glad that your mom has you to help her. You said your mom was showing signs of not being able to live independently but she wasn't doing anything about it, I am sure she didn't see it the same way others did , they have a way of masking many things.

I hope you are able to find some answers here.

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Irene Selak


Fri Aug 27, 2010 8:01 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: New in SoCal
Welcome to the forum and sorry for your need to be here. If you read through the postings of others you may find some similarities.
I, too, was wondering - did the LBD diagnosis come from the ER visit or what? She also could have another form of dementia, but whatever it is, you'll find this forum very helpful and supportive. 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 Aug 27, 2010 8:21 am
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Joined: Sat Aug 14, 2010 1:07 am
Posts: 8
Post Re: New in SoCal
Hi
We are new to the site as well live in Southern California. We are looking for a good doctor that is a specialist in this disease. Do you have any names live in the high desert but any would be good. Tried the Emrel not to sure of it.


Fri Aug 27, 2010 10:05 am
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Joined: Thu Aug 26, 2010 7:11 pm
Posts: 31
Post Re: New in SoCal
Thanks for the warm welcome everyone. I wasn't able to finish my story because of a character limit, so I figured this wasn't the right thread to tell all. After the ER visit and no MRI resulting from it, I just started doing some research on the Internet. From what I read, a neuropsychological exam was necessary. I called her primary about a reference and they sent me to UCI Medical Center.

Our appointment to discuss treatment and such is on Monday morning, so I'm still very much in the dark. I had never heard of this before seeing some in the UCI brochures about it. In fact, I remember thinking, "oh, this one is rare, so doesn't have that." I didn't reading anything about it. I was just praying it wasn't Alzheimer's so when I spoke to the doctor yesterday I kind of cheered when he said Lewy Body. And then I looked it up and then I broke down. I'm so scared. I don't want my mom to have to go thorugh this.

I was starting to think that it was quite possible that mom was going to be around and healthy for many more years. I don't know exactly when the onset began and what the time line is going to be like. I just feel so awful right now.


Fri Aug 27, 2010 10:40 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: New in SoCal
One neurologist at UCI you might want to take your mother to see is Neal Hermanowicz, MD. I think someone else on the Forum has a family member who sees him.

Both AD and LBD are hard on the caregiver. IMHO, what makes AD worse is that the patient forgets family and friends. LBD responds far better to medication than AD.


Fri Aug 27, 2010 11:38 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: New in SoCal
I'm so sorry you're going through this. I'm better when I'm armed with information, so I'd be doing lots of reading through this forum before Mon.'s appt. You may see things you didn't realize might have been early symptoms before you knew anything was wrong, read about meds that might work for her symptoms, whatever. It's good to know you're not alone in this. We're all in it together and can support each other knowing exactly what each other is going through. 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 Aug 27, 2010 11:55 am
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