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 What was the very FIRST symptom of LBD in ur LO 
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
Post Re: What was the very FIRST symptom of LBD in ur LO
Have not been on the site in a while but logged in this a.m. to find this very interesting subject.
My LO tossed and turned, threw himself out of bed, fought in his sleep, etc. for over 30 years prior to dx. Looking back, he then lost his sense of smell. Robin, you were right on with the constipation which he fought for years. Now that I've been through it I recall many other "little things" which we tossed out as "too much on his mind." Pushed the buttons on his calculator and wondered why the phone didn't work. At the gas station he washed the windshield on another persons car instead of ours...which by the way his doctor said is a common symptom he hears every now and then. As soon as I mentioned it he nodded his head immediately. Irritablility in my normally good natured LO followed and I think that was one of the hardest things to deal with. After reading these posts a pattern emerges.

Dianne

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Dianne C.


Fri Mar 25, 2011 6:50 am
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Joined: Wed Mar 23, 2011 11:28 pm
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Post Re: What was the very FIRST symptom of LBD in ur LO
Being a newby here and not knowing alot about all things medical I must say that in hind sight I beleive Mom's LBD may have been showing itself for at least 8 to 10 years and nobody grasped it. I remember that for a long time when you spoke with her she would stare very intensely at you, her lips would move while you were speaking, and her head would tremor very slightly. When we new for sure that something was not quite right was 4 to 5 years ago when she started with the delusions of her neighbor being out to get her and then the hallucinations that accompanied the delusions like the niehgbor was shocking her with some sort of ray gun or controlling things inside her house. To this day she still beleives this neighbor is after her.


Fri Mar 25, 2011 8:27 am
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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
Have any of you noticed this symptom - bottom jaw jutting out? Looking back, about 3 or 4 years ago I started noticing that my dad's bottom jaw would jut way out, just for a few seconds at a time and it would happen frequently throughout the day. As he became more ill, these episodes would happen more frequently. His last 6 months or so, his bottom jaw was permanently stuck way out. 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.


Fri Mar 25, 2011 9:06 am
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Joined: Wed Mar 23, 2011 11:28 pm
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Post Re: What was the very FIRST symptom of LBD in ur LO
I don't remeber anything about Moms jaw jutting out in the past but I have noticed it recently.


Fri Mar 25, 2011 9:48 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's jaw would often jut out - but I always put it down to his agressive mood. He would stick his neck way out, but come to think of it, his jaw would stick out too.
Agr, my Dad is constantly blaming his neighbours for watching him, to see when they could come to the house to rob him - he was so insistent that we had to put a blackout blind in the kitchen so that they could not see in his window. He can be very delusional, and everyone has been the brunt of his accusations at some time or another. An extremely difficult symptom of this horrible disease.

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


Fri Mar 25, 2011 11:19 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: What was the very FIRST symptom of LBD in ur LO
Though it was not an early symptom, my husband's tongue often protrudes from his mouth, especially when he's sleeping. This has been over the last two years or so.

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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.


Fri Mar 25, 2011 11:29 am
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: What was the very FIRST symptom of LBD in ur LO
Dale did have his tongue hanging out often many years ago. I teased him about it a whole lot and he quit. I'm not sure it had anything to do with Lewy. Who knows?

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


Fri Mar 25, 2011 11:37 am
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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
My dad's jutting jaw started about the same time that his left leg became so weak he could barely walk without a cane (which he refused to use for a long time). This was about 6 mo. before The Big Decline. I thought he was doing it purposefully for a while, like trying to stretch the muscles, but eventually I could see it wasn't that - he didn't appear to know it was happening, but it was so pronounced it's a wonder his neck and face didn't ache a lot. He never complained about sore muscles there, though. 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.


Fri Mar 25, 2011 2:51 pm
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Joined: Mon Mar 21, 2011 11:26 pm
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Location: St Pete Beach, FL
Post Re: What was the very FIRST symptom of LBD in ur LO
My father points his chin down and sticks out his bottom lip... sort of like sticking his jaw out. I will look more carefully tonight. Is this a common symptom?


Fri Mar 25, 2011 5:32 pm
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Post Re: What was the very FIRST symptom of LBD in ur LO
That's what I am trying to find out too. I had forgotten that this started very early on, before I was even aware that he had PD, dementia, LBD or whatever.

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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.


Fri Mar 25, 2011 5:39 pm
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Joined: Mon Dec 20, 2010 11:35 am
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Location: Israel
Post Re: What was the very FIRST symptom of LBD in ur LO
My mum had two bouts of depression over the last 6-7 years. The first sign that something was wrong was constipation and an obsession with all things stomach and bowel related. While in the depression she had hallucinations and obsessive behavior. After getting through her second depression she never got back to herself and became less capable of running her life and then she had hallucinations again. It was still at a point half a year ago where I was having to try to convince the doctors that something was wrong.

I suppose looking back that the first depression was a fore-runner and the first sign of the LBD.

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Father of five and manager of my mum's life


Mon Apr 04, 2011 8:25 am
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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
Julianne wrote:
A lot of things we just passed off as old age until then.
Julianne


I'm sure that this happens a lot. More people have dementia than have official diagnosis of dementia. I think that may be a partial explanation of the study (in the Research section) that found spouses of dementia patients have a higher risk than the general population of developing dementia themselves. It could be that the spouses have a higher probability of being diagnosed early, since family has now had experience with dementia. If all of the cases of dementia in the general population were diagnosed early (instead of being considered old age) the rate might be higher and match the spouses rate more closely. Seems logical to me, anyway. 8)

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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


Mon Apr 04, 2011 9:37 am
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Joined: Wed Oct 28, 2009 11:53 am
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Post Spouse has dementia too
I've thought the same thing, Jeanne. My family will know the symptoms since both my mother and my husband have had dementia at the end of their lives.

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


Mon Apr 04, 2011 1:57 pm
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Joined: Fri May 28, 2010 4:46 pm
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Location: Salem, Oregon
Post Re: What was the very FIRST symptom of LBD in ur LO
My mom has Parkinson's also, and we're having trouble remembering which symptoms came first. She's had restless leg syndrome for awhile, and maybe that was the first symptom. When she began leaning forward, we thought it was osteoporisis. When she began to walk funny, we thought it was her arthritis. When she stopped having family over for dinner and special events, we thought she was depressed. When she stopped making conversation, we thought she was mad at us but didn't know why.

A few years ago, she started giving me directions whenever I drove her anywhere--"Why are you turning here? Shouldn't you be in the other lane?" etc. This frustrated me to no end. She'd even give me directions to my own house! Someone told me that it was common for women during menopause to become irritated more easily by their moms. I had premenopausal symptoms so figured that was it, but my husband said, "No, your mom's personality is changing." Then came the day she drove to Albany to buy my son a gift (that she could have found in Salem) and forgot where she parked the car so had to get a security guard to help. That Christmas (2008) she complained of her thoughts whirling around in her head and of being forgetful. Her doctor said it was normal aging (she was 64).

It took me spending a whole weekend with her and riding in the car as she drove in June 2009 before I realized it was more than just arthritis, depression, osteoporisis, anger, and normal aging. I feel like a dope for not putting it all together earlier, but I remind myself that I didn't know the symptoms of Parkinsons (except the tremor which she only recently developed), and had never even heard of LBD before, so how could I have recognized it?


Wed Apr 06, 2011 3:07 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
I think that most of us have gone through the same questioning - how could we have known? Unless you have a medical degree and are looking for a diagnosis, how would you know? I didn't put all these things together about my dad either - I remembered my mom years ago saying "men all seem to get grumpy when they get older" so I blamed a lot of my dad's personality changes on "old age". There were reasonable explanations for other symptoms too, just like with your mom. Looking back, I felt like a dope too for not knowing something worse was happening. Even when my dad's dr. told me 2 yr. ago "I think your dad has had Parkinson's for a couple of years, and he has dementia" I couldn't imagine why he thought my dad had Parkinson's. The only person I actually knew who had that had terrible tremors in his hands. Michael J. Fox has all sorts of unusual movements, and other than the 1 man I knew years ago, that was my experience with Parkinson's! My dad had no tremors or strange movements in his arms, shoulders, or head, but shortly before he died he had tremors in his arms and hands sometimes. Looking back, there were all sorts of symptoms, but I didn't know they were all part of something bigger, and my dad was able to do showtime really well for a long time. So, don't beat yourself up for not knowing. We're all just doing the best we can! 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.


Wed Apr 06, 2011 5:15 pm
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