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 New Diagnosed 
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Joined: Wed Jul 26, 2006 11:14 pm
Posts: 12
Post New Diagnosed
My mother-in-law was diagnosed yesterday with LBD. Her symptoms are falling, memory loss, hallucinations, occasional speech problems (wrong word or wrong name used). She was given Exelon at the lowest dosage. Her symptoms came up within the past 3-6 months. Glad this forum is here.


Wed Jul 26, 2006 11:20 pm
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Joined: Sun Jun 25, 2006 11:16 pm
Posts: 30
Location: Beverly, WV USA
Post loads of support
Hi ,
Sorry to hear about your MIL......There's a great caregiver support group - linked from this site. Tons of info, some humor, loads of heartfelt support. It's one of the best tools for managing her symptoms and your caregiver "symptoms" as well. I myself HATE being a caregiver but, it's my husband and those D#$@@%*! wedding vows anf that thing called "love" kinda make me stick around :wink: ..... Does your MIL live alone or is your FIL still living?
Take care and keep us up on how you all are doing,
Sue & Harry in WV


Thu Jul 27, 2006 10:42 am
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Joined: Tue Jun 27, 2006 12:43 am
Posts: 47
Location: Boulder, CO
Post Mother-in-Law
Exelon should help. It takes a while. It may not get rid of everything
but it should help some.

Some things I find helpful for my husband are books on tapes or CDs.
If she is having problems getting in and out of bed and chairs, a gait
belt is quite helpful. If you can, get an occupational therapist in to
assist her and her caretaker in developing ways to help her around the house.

Above all, whomever is taking care of her should read as much as
possible on LBD.....being informed is your best allie.

Keep in touch

Fran


Thu Jul 27, 2006 12:58 pm
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Post 
Dear Woodallmd,
Sorry to hear about your MIL, may I suggest keeping a journal on her and when needed you or whoever is her caregiver can look back for the info, I am sure LBD was there but went un noticed or just brushed off like so many of us has done,
My Husband had LBD for about 9 yrs but we only knew for 3, the changes over the yrs were there just minor for a period in time.
I am glad this Forum is here also for people dealing with this ever changing disease, come back often but I think the most important thing is is self educate yourself and those that will care for her!
Good Luck! :)


Thu Jul 27, 2006 1:11 pm

Joined: Wed Jul 26, 2006 11:14 pm
Posts: 12
Post 
Thank you all for your kinds words and encouragement. My MIL has good days and bad days. Good nights and bad nights. On a bad night, she gets out of bed and finds herself in the kitchen. Her husband had to go and sleep on the couch because of her excessive movements. She went shopping with her daughter yesterday and did fine. Today she had a balance and dizziness problem and had to sit down for awhile while shopping. She hasn't had any side effects yet from the Exelon....she thinks it should have made her 'better' by now. I have suggested she make a journal so she can take it with her to the doctor on her next visit. I'm sure her husband will help her with that.

I am more of a 'realist' and want to understand the medicine and the disease. I find that other family members seem to be in denial and aren't trying to educate themselves about this. I am a breast cancer survivor (10 years) and always wanted to know as much as possible about my treatment and prognosis, etc. Other people seem to prefer to stick their head under a pillow and pretend it isn't happening. However, I'm OK with their reaction because everyone has to cope in whatever way is best for them.

My biggest concern right now is the speed at which this seems to have progressed. It seems to have started around February of this year. By now she has balance problems (falls down sometimes), difficulty writing checks ($4 instead of $400), poor sleep, failed a lot of the mental tests (could only remember 1 out of 3 words said to her earlier), etc.

Thanks for listening. Internet 'friends' helped me so much during my cancer treatments. I'm thankful for this website and forum.


Sat Jul 29, 2006 8:21 pm
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Post 
Hi Woodallmd,
You mention the speed of the progression, I have to ask is it because you now know what it is? I know or what it seems like when my Husband was first DX I also thought the disease progressed at a great speed but being on the other side now I really think it had to do with the DX, I think for a long time My Husband covered up alot of things and once the DX came out he could relax about it and the things he kept hidden , he no longer had too.
I agree that you need to know as much as you can about diseases but even more so with this one, there is so much danger with certain meds.
I will say from your discription of your MIL sounds like she is in Early stages.
I wish you well ! :)


Sat Jul 29, 2006 9:13 pm

Joined: Sun Jun 25, 2006 11:16 pm
Posts: 30
Location: Beverly, WV USA
Post Fast progression
Hi again Woodallmd,
Has she had any surgeries (dental as well) prior to the rapid progression -
anesthetic can really unravel these LBD folks.
Sue & Harry


Mon Jul 31, 2006 12:21 am
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Post 
Sue,
You are so right I forgot about that as I wrote the above post, My husband had at least 3 hospital stays within the 18 month period of his*major* decline, he had 3 GI bleeds and they had to go in a repair them, also dealt with Jim going for a round of injections in his lower back for herniated disc's, we did that 2 seperate times and and each time is was a round of 3.


Mon Jul 31, 2006 8:19 am

Joined: Fri Jul 21, 2006 1:05 pm
Posts: 51
Location: Houston, TX
Post 
I never considered the possibility of anesthetics speeding up the dementia. My mother was in the hospital for two weeks, the first week for a pacemaker because her heart was trying to stop at least once a day, and then the next week because her blood pressure would drop so dramatically when she stood up she would fall down. She had been steadily losing her memory, her ability to reason, been off balance with frequent falls for the last two to three years. Since being released from the hospital and entering an IL facility three months ago, her symptoms have become so much worse I have had to hire a private nurse to monitor her med's and check on her twice a day just to make sure she knows what day it is. We have an appointment with the DR (neuro) next month. I will be sure to bring it up. The private nurse is also keeping a daily journal, and that should be helpful with a diagnosis.
Jennifer


Mon Jul 31, 2006 3:59 pm
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Post 
Dear Jennifer,
Yes this can happen and does happen very often.The Blood Pressure instability is also very common, I am glad that the Nurse is keeping a journal it really does come in handy when you need it. Come back let us know how you Mother makes out with her appointment! :)


Mon Jul 31, 2006 5:54 pm
Post 
Dear Jennifer,
I have contacted another member for information but my looking I have found this small piece on the (Orthostatic Hypotension) Hoping it will give you food for thought,
I know when my husband had this, we never really got a conclusive answer and I learned this after the fact.


There are three kinds of cardiovascular dysfunction. One,
orthostatic hypotension (OH), occurs in 60% of those with PD, not all
of whom have symptoms. Two is cardiac sympathetic denervation. I
believe Dr. Pfeiffer was suggesting using a cardiac sympathetic
denervation test as a way to distinguish PD from MSA. Three is
postprandial hypotension (blood pressure drops after meals). Dr.
Pfeiffer noted that carbs were most likely to trigger postprandial
hypotension.


Tue Aug 01, 2006 8:28 am

Joined: Fri Jul 21, 2006 1:05 pm
Posts: 51
Location: Houston, TX
Post 
Irene,
Thank you for all the information. But, I am new to really researching all this. Can you tell me what PD and MSA are?
Jennifer


Tue Aug 01, 2006 10:20 am
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Post 
Jennifer,
PD- Parkinson Disease
MSA- Multiple System Atrophy

I am glad you found a place to get your questiones answered, it is so important with this disease! :)


Tue Aug 01, 2006 11:36 am

Joined: Fri Jul 21, 2006 1:05 pm
Posts: 51
Location: Houston, TX
Post 
Well, saw the neurologist on Thursday last week, and asked him specifically about LBD (when my mom was out of hearing!) He seems to think not because of the lack of hallucinations, although I know for a fact that Mom has infrequent hallucinations. He seems to think it is a combination of TIA's and some form of dementia that he won't put a name to. I would think about changing DR's, but he is really the only DR Mom has that she likes.
The day before the visit Mom was pretty clear mentally, and we made a list of all the problems she was having to go over at her appointment. We did so, but then after the appt. she became very upset with me because while we were talking to the DR. she felt like I was making her sound incompetent (or in her words, STUPID). She went into a rant that lasted about 30 minutes until I could get her home and calmed down enough to go to lunch so I could leave. I have found that seperation works best to get her off of a rant.
So we still have no clear DX. He added Namenda to help sleep at night, and he said it would also help calm anxiety. Does that sound right?
Thanks for all the feedback I get here. It seems to be the only place with any answers.
Jennifer


Mon Aug 21, 2006 12:49 pm
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Post 
Hi Jennifer,
This is such a hard situation, Has any Dr ever said LBD?With the absence of Hallusionations doesn't mean much because I didn't
think my Husband had them either until the later part of the disease, MY suggestion would be to find a Dr who deals just with Dementias and there I think you might find your answer, My heart goes out to you and your Mom. My husbands Dr also blamed many things on the TIA'S he had but he did in fact have LBD.
Nemanda, I far as I know it used for moderate- severe Alzheimers, As far as it helping to sleep thats a new one on me,My Husband took Exelon for the dementia part and I couldn't give it to him past 4:00 pm because it kept him from sleeping! I forget what state you are in not sure if you ever said, I know here in FL the is Jacksonville and many people here taken their loved ones there! Good Luck! :)


Tue Aug 22, 2006 5:08 pm
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