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 New Diagnosed 
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Dear Sallyann,
Your last sentence speaks in volumes!
People with LBD are so limited ! On one of my Groups a woman wrote her husband only drove locally, Duh! Locally or not they are not only a danger to themselves but what about the other people they are a danger to in a car, when the Dr told me it was time for my Husband to stop driving it stopped that very day!


Sat Oct 21, 2006 11:20 pm

Joined: Sat Aug 19, 2006 5:01 pm
Posts: 79
Post driving
You are right, it is scary to think we are driving among people who should not have a license. It is hard to see one of a persons most independent skills have to stop. But I still say denial is a big part of the families of LOs with LBD. Let's face it, admission of dementia changes not only the LBD LO, but the whole family. Suddenly, who accepts the responsibility for their care? Who is going to give up their lives to care for the LO? It is easier to pretend that everything is okay.
Regarding the driving, we decided on our own to put (hide) Mom's keys away. She didn't drive much anyway, Dad did most of the driving. But very soon it was obvious that even if she had the keys, she could never figure out the sequence of getting into the car, inserting key, turning, putting in gear, etc. Sad :(
Sally Ann


Sat Oct 21, 2006 11:38 pm
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Joined: Fri Oct 27, 2006 8:07 pm
Posts: 54
Location: New Hampshire
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Hi DHill - Your Mom sounds like my mothers twin. Macular, diabetes, spinal stenosis, pulmonary fibrosis. I am sorry for the two of us and everyone else on these boards. This disease is worse than Alzheimers (my dad died from it 3 yrs ago). The ups and downs make the caregiver think there losing THEIR minds. lol.... :lol: Does your Mom complain about her eyesight being worse. My mother will be fine some days, then tell me she cant see, I have no idea what to say to her. Usually just tell her I will tell your nurse when she comes. This seems to help. She is very depressed this morning (oh yeah, she is also manic depressive), but I know lbd can also cause depression. Ask her whats wrong, and she says "I dont know whats happening to me" I just tell her maybe tomorrow will be a better day (yeah right). By the way, Mom got a definite diagnosis when she had a Pet Scan or SPECT scan, 4 yrs ago and I CANT REMEMBER WHICH IT IS (oops). Hang in there. Feel free to e-mail me at my regular e-mail address if you want. Take care I know how hard this is.


Sat Oct 28, 2006 8:21 am
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Joined: Tue Sep 26, 2006 5:13 pm
Posts: 18
Post scooter etc
Honestly, either my mother doesn'y have LBD or she has been dx very early. She still does her own check book with occasionally screw ups, maybe once every other month or so. She does clearly have problems. Sometimes I call it the "screening" problem. She says things without really screening if it is appropraite or not. Usually a problem in social situations or with family. She shuffles and eventually falls, in a MAJOR way. If you spent an hour or two with her you may not pick up on it. If you watch her walk you know right away, if you spend the day, or get her when she is tired you can tell by talking to her. Am I crazy???:?:
Most of the stuff I can very much relate, but sometimes and somedays my mom is, no joke, almost totally normal. I thought LBD had that kind of fluctuation. After reading this forum I wonder, does she has it? :?


Sat Oct 28, 2006 10:21 pm
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Dear Maureen,
Yes LBD does have that fluctuation, in the earlier yrs the LBD patient is able to control some of it but as time goes on they can't . Example: earlier on in my husbands disease he would be giving me a hard time about something or other , yet when the kids would come they think he was fine and probably thought I was crazy of course as time went on he no longer could control the emotions as well and as far as the people here on the forum and other places you have been for LBD they are all at different stages and each LBD patient is just a little different in what symptoms they have and that is the hard part of LBD. There must be something that brought your Mother's Dr's to the conclusion of LBD. :)


Sat Oct 28, 2006 10:49 pm

Joined: Sat Aug 19, 2006 5:01 pm
Posts: 79
Post 
Hi Maureen,
If you agree that your Mom has most of the symptoms, maybe she got an early diagnosis. I can see how a physician could make a mistake and give you an incorrect diagnosis and say no, she doesn't have it. But an incorrect yes, would be unlikely. If he says she's got it, she probably does. That's just my opinion. Finding out early is a good thing. You can keep an eye on her and make sure she is safe. Every illness has a start that is mild, even a cold. My Mom was only diagnosed 2 or 3 years ago. But she has had the worsening symptoms for more like 6 years. It can be found early or late, it's still LBD. And that stinks. :( Best of luck with your Mom..
Sallyann


Sat Oct 28, 2006 10:55 pm
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Joined: Sun Oct 01, 2006 1:16 am
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yes, Maureen, I spent a couple of years yoyoing back and forth between certain my LO was totally bonkers or that she was just fine. For my sanity, I finally ended up making a list of what i called her "blips" - that I would add to weekly and could look back over when she'd be ok long enough to make me wonder if it was me.


Sat Oct 28, 2006 11:38 pm
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Joined: Tue Jun 27, 2006 12:43 am
Posts: 47
Location: Boulder, CO
Post Maureen
Have you had any results regarding your Mom's tests in Boston?

Fran


Mon Nov 27, 2006 8:55 pm
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Joined: Thu Sep 07, 2006 7:40 pm
Posts: 64
Location: Chelmsford, MA
Post FRAN
Hi Fran,
Were you speaking to me about my Mother and DXing? If so, no, her appointment isn't until January 12th...and I will be pushing for a DX just like jennifer did... :idea: Sometimes I am positive it is LBD and then other times I really question it. Especially after going to the lecture in Boston last week and listening to the doctor; my head is really spinning...
My best,
D. Hill

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Caretaker Daughter of 79 YO MOM with Vascular Dementia & AD


Mon Nov 27, 2006 10:21 pm
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Joined: Sat Aug 19, 2006 5:01 pm
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Hey Diane,
I havn't been on the site for a couple of weeks. What did you find out at the lecture? I don't know if I missed you posting the info. What part of the talk made you doubt what you have been feeling? We are having a bad time with Mom trying to leave the house to "look for her children". May have to try a med to keep her calm. Anyway, would love to hear what you learned. :)
Sallyann


Sun Dec 03, 2006 1:15 am
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Joined: Thu Sep 07, 2006 7:40 pm
Posts: 64
Location: Chelmsford, MA
Post Sallyann/Lecture
Hi Sallyann,
I have been wondering where you have been...figured you were just busy...sorry to hear you are having a difficult time with Mom...
As far as the lecture, I did post something way back on this site and the other...the Doctor was wonderful, chief of staff of neurology at Mass General Hospital which is the teaching hospital for Harvard...so he is good...the thing that sticks in my head is how adamant he is against anti-psychotic meds for patients with LBD...when pressed on, he said if it is absolutely necessary, he would try a very tiny, tiny amount of one that is not one of the dangerous ones...I don't think he wanted to get into a drug conversation...but Resperidal was mentioned as a BAD one for sure...He talked more about the way AZ and LBD present and what it does and how it works...and which parts of the brain...and diagnosing with PET scans, etc...No miracles...no hope of cures, naturally...he did say to always run med changes by the neurologist...I remember that one...I wanted to kidnap him and bring him to my Mother's to DX her, which I'm sure he would have been able to do on the spot...lol...We are seeing our neurologist in January...if I'm not happy, I am going out of Mom's insurance plan and going to see this Doctor who is accepting patients...
The reason I have doubts, is because I read and read and listen to everyone on the caregiver's site about how their LBD LO's behave and it doesn't sound like my Mother...now she does have some things in common, I will admit...but, after 6+ years, I would have to think that there would have to be more of a decline in her...she is lucid so much of the time, except the short term memory loss is always there...except for some things...I mean she still lives alone and cooks and cleans with help...I just don't know...I go back and forth...I will find out....
hopefully, it is just the vascular dementia that was DX 6 years ago...I just don't know...at this point of knowing LBD, I'd be happy with an AZ DX as opposed to LBD...
Well, I hope I answered your questions...lol
How's the Christmas shopping? Do you have a lot to do? I am doing gift certificates, except for my two kids...MOM and my Daughter... :lol:
Hugs,
Diane

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Caretaker Daughter of 79 YO MOM with Vascular Dementia & AD


Sun Dec 03, 2006 4:36 am
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Joined: Sat Aug 19, 2006 5:01 pm
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Thanks for the info Diane. I always want to know what to avoid. We started Mom on Xanax (very low dose) for use when she gets really agitated. It's working well. Xmas is my favorite time of year. Mom is really enjoying the decorations. I do get a little carried away with them. My husband says it looks like elves threw up in our living room! :lol: Anyway, it's a cheerful time in our house, everyone is happy. Mom still looking for her children, but she is in a good mood most of the time. How is your Mom doing? I am anxious the her about her testing in Jan. I am hoping you and your Mom will get the answers you are looking for. :)
Sallyann


Tue Dec 05, 2006 5:34 pm
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Joined: Thu Sep 07, 2006 7:40 pm
Posts: 64
Location: Chelmsford, MA
Post Sallyann
Hi Sallyann,
Glad to hear the Xanax is working for your Mom. My Mom can't take anything like that because of other medical conditions, but then again, we don't have the agitation problems either...it's mainly the memory, cognitive reasoning and her legs I am beginning to think is a medical problem due to her poor circulation problem, which has been diagnosed...she is not walking well with lots of charley horses..which is part of the poor circulation. The doctor, at this point and I concur, have ruled out surgery. With her diabetes and such she would probably just end up in a wheel chair.
Glad to hear you are all in the Christmas spirit...that is funny what your husband said about the living room...keep the elves out of that room.
Hope Mom is enjoying everything. Don't work too hard...
Hugs,
Diane

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Caretaker Daughter of 79 YO MOM with Vascular Dementia & AD


Thu Dec 07, 2006 2:08 am
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