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 Need clarification on symptons 
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Joined: Mon Jul 17, 2006 9:48 am
Posts: 1
Post Need clarification on symptons
My father is 87 and has over the last few months started having a variety of changes: in mood(more agressive and arguementative) , falling asleep in his chair while sitting straight up(this has really gotten alot worse), forgetfulness, more falls, periods of disorientaton, increased hand trembling, etc. I have been trying to research to figure this out.

I came across this and many of the symptons sound very familiar, except for the hallucinations. I cannot recall any of that happening.

At first I thought he might be having TIAs, the doctor had a CT and heart Echo, both were good(somewhat enlarged heart and the CT did not show a stroke). He suggested that he try for AD to see if helps, He has not started as yet.

He has suffered with depression for many years, and takes wellbutrin, remeron, and ativan.

Any advice will be greatly appreciated. Really hate seeing him go through this and not knowing which direction to take for treatment.

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dwt


Mon Jul 17, 2006 10:02 am
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Joined: Tue Jun 06, 2006 10:57 am
Posts: 11
Location: Washington, DC
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I’m sorry to hear about your father. Does he shuffle when he walks? That’s what my dad’s neurologist picked up on when he was diagnosed (but he also had hallucinations). He too was sleeping straight up in the chair.

LBD is tricky, that’s for sure. Not all patients are the same -- some don’t display all of the symptoms. It sounds like your dad may have more than one symptom for LBD though. You don’t mention a diagnosis of Parkinson’s disease, has that been brought up with your dad’s doctor? You may want to make an appointment with a neurologist in your area and print out the brochure to take with you http://www.lewybodydementia.org/docs/3_brochure.pdf

The one thing that caught my eye in your post is the depression issue. My dad also was depressed before his diagnosis but he was not taking anything for it. When he did get the diagnosis, we were able to start him on aricpet and it really helped to lift some of the fog of forgetting and depression.

Please talk to your dad’s doctor and let us know how it goes.

Best,
kjmcg


Mon Jul 17, 2006 5:33 pm
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Joined: Mon Jun 05, 2006 3:29 pm
Posts: 93
Location: State College, PA
Post Re: Need clarification on symptons
dwt wrote:
I came across this and many of the symptons sound very familiar, except for the hallucinations. I cannot recall any of that happening.


My father didn't have hallucinations either. But he did have a key symptom that many people don't know about until they ask - he was having nightmares and was physically acting them out while he was asleep. My dad injured himself several times because he was thrashing about in his sleep, and would occasionally fall out of bed. It's called REM Sleep Behavior Disorder, and is a symptom of LBD. In fact, it can pre-date all other symptoms by many years and is now being considered a risk factor for LBD.

So, ask about nightmares, if he's being disoriented upon waking and thinking dreams are real, if he's hurt himself during the night, etc.

Hope that helps,
Angela


Tue Jul 18, 2006 7:25 am
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Please remember not everyone who had been DX with LBD have the same signs as the next person, for us the physical changes were the greatest and then the mood swing were at times unbearable, there was dementia but not as much as I know some people get, I personally think the physical is the hardest to deal with and that is just my opinion only, my Husband was a man of 200 lbs, close to 6 ft and the lifting was very hard for me and I am sure I am left with some physical effects from all the lifting.
Irene


Fri Jul 21, 2006 5:45 pm

Joined: Sun Jun 25, 2006 11:16 pm
Posts: 30
Location: Beverly, WV USA
Post sounds very familiar
Hi dwt,
My husband didn't have much activity in the hallucination arena either. Just a naked lady in the living room.....and he knew she wasn't supposed to be there! I think he hallucinates more than I'm aware of and doesn't tell me because he knows this is not normal.

Where does he live? Chances are, we can suggest a MD with some heightened awareness or expertise in LBD.
Take care,
Sue & Harry in WV


Sun Jul 23, 2006 2:56 pm
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Joined: Wed Jul 26, 2006 8:42 pm
Posts: 2
Location: Toronto, Ontario Canada
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Every person with LBD is different, and may manifest different degrees of the following symptoms:Fluctuating alertness &/or cognition:Hallucinations:daytime drowsiness & lethargy despite sufficient sleep: visual perception: episodes of disorganised speech: REM sleep behaviour disorder (explained in a previous post): mobility problems common to Parkinson's (also mentioned previously).
Any person with 3-4 of these symptoms can be thought of as having LBD.
LBD is not yet well recognised by the medical world as it can overlap so many different types of problems.
Good luck,
Ev


Sat Jul 29, 2006 10:35 pm
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Joined: Tue Aug 28, 2012 8:35 pm
Posts: 3
Post Re: Need clarification on symptons
Please Help !!! Thank God for this site..... My 78 year old Mother started showing signs of memory loss and some hallucinations (kids @ animals) and some delusions , We made an appointment with Neurologist and he did some testing in his office and said she has some Dementia he started her on low dose Exelon Patch and with in 9 days she was trying to run away from home, very confused and agitated so he sent her to Geriatric Psychologist, Who talked us into admitting her to Geri Pysch ward for observation ...... 6 days later she couldn't complete sentence she was paranoid and begging to go home, she did 11 days in ward and I seen the Doc one time..... Several calls and no return calls..... We found out they put her on Zyprexa and Sequel plus left the Exelon patch after we repeatedly told them she got worse since starting .....She was released and taken to Memory unit and has rapidly declined .... We fought with them to stop Exelon and Zyprexa since her symptoms have deteriorated rapidly since they started her on them.... She recolonize me but doesn't know my name..... Can it be this rapid in 2 months???? The day we went to see Geriatric Doc she showered herself , did her hair and got dressed and since putting her in Pysch ward she has gone down so rapid...... My heart is broken.......


Wed Aug 29, 2012 9:58 am
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Joined: Tue Apr 24, 2012 5:00 pm
Posts: 78
Location: Fayetteville, NC
Post Re: Need clarification on symptons
Did they do a CT scan and what did it show? You sound overwhelmed. It is so difficult and painful to see what your loved one is going through and for you also. Get someone to go with you to the doctor's appointments and get copies of the progress notes and reports each time (you can request they be mailed to you or pick up later, sign the releases while you're at the appts). You can re-read these later and get a better idea of what's been determined so far and help you understand what's going on. That should also help you decide the next steps (did they recommend additional tests, consults?) Also, make sure you have Power of Attorney, so that you can act on your loved one's behalf. Take videos (if you can) and make notes each day or when you can of things that are happening so you can share them with the doctors. Keep everything in one place so you can refer to it later. Something you didn't understand earlier may make more sense later OR help you give a history for decisions on care later (what worked, what didn't work, what had already been prescribed, what dosage, etc). It is a lot to take in, take a deep breath. You're doing the best you can by reaching out and getting help and information so you can take the best care of them.


Thu Aug 30, 2012 5:44 am
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Joined: Tue Apr 24, 2012 5:00 pm
Posts: 78
Location: Fayetteville, NC
Post Re: Need clarification on symptons
Sorry, yes, if it is Lewy Body Dementia, then yes it is a roller coaster of changing levels of symptoms and abilities. One moment they can be moving pretty well and the next they are frozen or falling because nothing works. The confusion can go from having a wonderful conversation and feeding themselves to having to show them which way to the bathroom they've used for 20 years and how to use it. It hurts so much because you love them and only want the best for them.


Thu Aug 30, 2012 5:49 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3317
Location: Vermont
Post Re: Need clarification on symptons
STRW - it's hard to tell whether or not it's the meds making your poor mom worse or if it's the disease itself. Please do a lot of reading on this site and other places re: meds and symptoms. I think everyone on here would tell you that meds should be added ONE at a time, low doses, then track any bad side effects. Dementia patients seem to be set way back from ER visits, hospitalizations, and then with adding mulitiple meds on top of it all, no wonder your mom is having so many changes! I'd read as much as I could to get as informed as I could possibly be, then meet with her dr. to determine what she should be taken off of (again usually a slow process, not done at once) one at a time.
It is a very, very difficult situation to deal with, but being armed with info. and being her advocate will help her immensely. If you can find a local support group to help you, that may be a good thing to check out too. Come back here often - there are lots of us who have BTDT or are going through it now. All the best, Lynn

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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.


Thu Aug 30, 2012 7:11 am
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