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 What was the very FIRST symptom of LBD in ur LO 
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Joined: Wed Mar 09, 2011 12:22 am
Posts: 75
Post What was the very FIRST symptom of LBD in ur LO
I don't know why we search the past and keep looking for that very first symptom...the one you knew was just ODD..and you couldn't have caught it if you were a genius!

For my dh, there was 2 things that were just out of the ordinary...he loves to eat and has never complained about food ever...even bad food. One day out of the blue he started hating the taste of eggs! Never, EVER, had he hated the taste of anything! That was 3 years ago. But the very first clue was the terrible dreams....the same one, always, and he would kick...really kick..and I made him sleep on the couch until he stopped...he would have a few nights like that...then none for a while....they got worse and worse. That was 7 years ago.

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~~Debra, 52, wife to Chris, 64 DX Vascular Dementia 9/10; Alz 10 or 11/2010; Pseudo Dementia 01/11; LBD in 03/11..Was at home until 4/29, 2011, now in a Alz fac./dementia unit.
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Sun Mar 20, 2011 9:26 pm
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Post Re: What was the very FIRST symptom of LBD in ur LO
I can look back even more than ten years ago with the sleep problems and mis-identification of smells. Along with these was an increasing irritability and some paranoia. Visuospatial problems [seen in a tendency to drive close to, or even slightly over, the center line] followed close behind, as well as executive function deficits, being unable to plan projects or operations, even though his cognition and memory were, for the most part, intact.

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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.


Sun Mar 20, 2011 9:52 pm
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Joined: Mon Feb 21, 2011 9:58 pm
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Location: East Coast of the United States
Post Re: What was the very FIRST symptom of LBD in ur LO
Sleep apnea (he wouldn't wear his C-Pap mask because it was suffocating him), followed by REM sleep disorder with lots of kicking and punching, followed by sleep walking. Inability to be logical (tested by neuropsychologist). Major depression with psychotic features. Incredibly complex hallucinations of every sense but taste, and paranoia. Both eventually went away. Next, very obvious spacial problems. He knocked the right mirror off his car three times in about four weeks. Double vision. He was asked to stop driving by his eye doctor. Wrong word choices. Urinary incontinence. Stooped posture and shuffling gait came on suddenly. Falls when there was nothing to trip on. Inability to find his way to the bathroom of a house he had lived in for 30 years because he was caught in a dream state. His hallucinations returned and this time he had taste hallucinations as well. Now, slurred speech that makes little sense.


Sun Mar 20, 2011 10:29 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: What was the very FIRST symptom of LBD in ur LO
Interesting question, Debra. I'm not surprised RBD is the first symptom or the loss of sense of smell (and associated change of taste). What about constipation? That often predates other symptoms by decades.


Sun Mar 20, 2011 10:52 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: What was the very FIRST symptom of LBD in ur LO
Since we all notice our bodily changes as we age, hard to know what was "normal aging" or other medical issues vs. what were first signs of LBD. However, in retrospect, these are things I started noticing about my dad a few years ago:

He'd shuffle from one piece of furniture or doorway, then lunge to the next piece of furniture, barely catching himself or turning over the furniture.
Couldn't stand without pushing hard with arms on chair arms or table.
Became irate over things that had never bothered him before.
Forgot my birthday & my sons' birthdays 2 yr. ago and other memory issues.
Became very self-centered
Fell and was very disoriented, couldn't get himself off the flooSr (5 or 6 falls in about 6 months).
Incontinence (both)
Taking off clothes, throwing them around the house in the middle of the night, walking naked through the house with me there and drapes open.

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.


Sun Mar 20, 2011 11:05 pm
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Joined: Thu Dec 02, 2010 1:44 am
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Post Re: What was the very FIRST symptom of LBD in ur LO
Bingo Robin, you hit the nail right on the head for us. Fran suffered from constipation long before any other sign. Bernie


Sun Mar 20, 2011 11:24 pm
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Joined: Wed Mar 09, 2011 12:22 am
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Post Re: What was the very FIRST symptom of LBD in ur LO
I guess among some of the first things I noticed was the loss of the ability to be logical. Neither could he see things from the beginning to the end..you know, he could not see the ultimate outcome of actions, any actions.

To be honest, I saw a lot of these symptoms, ie irritability, agitation, as part of what I thought was a really bad personality. He always had tendencies toward being irritable, mad, and moody.

It is odd. I keep meaning to make a page in my journal about a timeline and really concentrate on all these symptoms and just when they occurred.

Most of the physical things..shuffling, falling, memory loss, confusion started a couple of years ago and suddenly became very prominent 7 months ago. He had a crisis in Aug and has NEVER recovered. He has never had constipation...always had diarrhea...anal expulsive is what I always told him!
Thanks for the comments..it really helps to discuss these symptoms.

_________________
~~Debra, 52, wife to Chris, 64 DX Vascular Dementia 9/10; Alz 10 or 11/2010; Pseudo Dementia 01/11; LBD in 03/11..Was at home until 4/29, 2011, now in a Alz fac./dementia unit.
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Sun Mar 20, 2011 11:30 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: What was the very FIRST symptom of LBD in ur LO
Same with my dad - more inclined to diarrhea and never constipated, and was that way for at least 20 years.

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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.


Sun Mar 20, 2011 11:33 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: What was the very FIRST symptom of LBD in ur LO
If you subscribe to the theory that RBD is often a precursor of Lewy body diseases, then the first symptoms were more than 25 years ago, when Coy began thrashing around in his sleep, throwing himself out of bed, punching or kicking me, describing similar dreams over and over, falling asleep at a stop sign while driving, or during meetings at work. His treatment for this began in the late 1980s. His sleep doctor was aware of the RBD/Lewy Body connection and was checking on each visit for signs of Parkinsonisms. He found nothing. In April of 2003 his findings were "normal for a man his age."

The first Saturday of June 2003, feeling better after a bout of constipation, he went to breakfast with his daughter and me. We all looked over the menu and he seemed confused by it. We picked out what we were each going to order. When the waitress came he ordered something completely different and more surprisingly something he had never liked. I began to get alarmed when the hot water pot and tea bag were delivered and he had no idea of how to make tea. He played with the salt and pepper shaker like he had never seen them before. He seemed unfocussed. When we got up to leave he walked as if he were drunk, and staggered out to the car. Thus began our life with Lewy.

So, his was either a case of very very slow progression (if you count RBD as the start) or very sudden onset.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sun Mar 20, 2011 11:56 pm
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Post Re: What was the very FIRST symptom of LBD in ur LO
Jeanne, it's hard to say whether some of these early symptoms were actually Lewy or just precursors of Lewy. But there were some [like the dysfunctional sense of smell] and the REM sleep disorder that preceded his diagnosis by at least five years.

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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.


Mon Mar 21, 2011 12:37 am
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Joined: Sun Oct 04, 2009 10:18 am
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Post Re: What was the very FIRST symptom of LBD in ur LO
Inability to follow a plan with more than one choice. For example, my sister would ask our Mom to pick up her child at school. However, if she wasn't able to make it she should call and let my sister know. The result was that neither occurred. The car was crashed soon after (nobody hurt). Second clue was loss of smell. Third was a visual hallucination.

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Annie, daughter of brave Marie, dx 2007 and in ALF


Mon Mar 21, 2011 1:06 am
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Post Re: What was the very FIRST symptom of LBD in ur LO
robin wrote:
What about constipation?
Dale did not have constipation but that may have been because he was hardly ever without a glass or a can of some liquid in his hand. He drank Cokes constantly. He thought he might have diabetes but that was not true.

However, he was a serious sleep walker from his 20s. When the major middle of the night episodes began in 2009, they seemed to be a continuation of sleep walking.

His own complaint was dizziness - beginnning in about 2005.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Mar 21, 2011 4:31 am
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Joined: Mon Feb 21, 2011 9:55 pm
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Post Re: What was the very FIRST symptom of LBD in ur LO
Dad had a stroke 5 years ago, and things have been steadily declining since. We initially thought he had escaped lightly with a little stiffness in his left arm and leg. He became extrememly irritable about 3 months later, and then I noticed that his walk was declining and is now the Lewy shuffle, and reaching for something to hold onto. Then he became very agressive, started to hallucinate and have many delusions. Having said all that, Dad was only diagnosed this December just gone, but I know he started on the Lewy path almost immediately after the stroke. Dad has never had a problem with constipation, Thank God, but is now incontinent. I find the agression the hardest to deal with.

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cared for Dad who passed away on January 28th 2013 R.I.P.


Mon Mar 21, 2011 6:45 am
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: What was the very FIRST symptom of LBD in ur LO
Honestly on this side of LBD, its really hard to say, as mentioned RBD was probably one of the first things looking back now and yes constipation was also there but again he had some stomach issues so I really brushed much of what was really happening off to other things, even the day he called from the grocery store to tell he knew he was there for a reason and forgot what it was, for so very long I kept my head buried in the sand and could reason with every issue, what was a real eye opener for me was the explosive episodes because he was not like this at all in life, he was basically a calm gentle man and I also remember the very first time I heard him shuffle his feet on the carpet as I am extremely light sleeper, I remember thinking my goodness how lazy can a person be not to pick up their feet !

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Irene Selak


Mon Mar 21, 2011 9:04 am
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Post Re: What was the very FIRST symptom of LBD in ur LO
My mother, turning 87 next month, started having trouble finding words probably 15+ years ago. About eight years ago, she had an episode after surgery that at the time was called "anesthesia dementia," confusion, inability to speak, etc. Looking back, I think she was having a Lewy reaction to the anesthetic. About six years ago, her doctor started her on Namenda because she observed signs of dementia, but as a PCP she did not diagnose it any more specifically. It wasn't until the doctor added Abilify to my mother's antidepressant, Cymbalta, that she had acute Parkinsons symptoms that landed her in the neurology unit of a major teaching hospital and LBD was diagnosed. A lot of things we just passed off as old age until then.

Julianne


Mon Mar 21, 2011 9:27 am
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