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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 Re: What was the very FIRST symptom of LBD in ur LO
I had never mentioned this, I don't think, but my LO was diagnosed by a Neuro psychologist (on behalf of the neuro dr) with Pseudo dementia. He even accused my DH (dear husband) of wanting to get disability money, so he was faking it. On this recommendation, our neuro man refused to see my dh...and until the symptoms worsened, due to the Risperdone, we were stuck with NO dr, NO idea what was really wrong...it is just me and him. Those days were dark. I feel ashamed that I once thought maybe he is faking it and did not know it. Maybe he IS crazy!

If that dr would have not made a diagnosis on the basis of fluctuation cognition and had know there are diseases which cause these fluxes...then maybe my dh would be a bit better off today! It frustrates me and makes me want to sue someone.

_________________
~~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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Mon Mar 21, 2011 11:02 am
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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
Debra,
That's the first time I've ever heard of such a story. What does the "pseudo dementia"-diagnosing neurologist say now?!
Robin


Mon Mar 21, 2011 11:30 am
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: What was the very FIRST symptom of LBD in ur LO
From a patient newly diagnosed:
Hello all,
I appreciate this thread because I am still trying to decide if my dx is correct (you know the denial stage? dx was just over 4 weeks ago).....But the things you posted here were very helpful to me....I can add that I believe my first symptom was a memory, attention or learning problem - I was in a class and suddenly I could not remember what was being taught to me - I remember being so frustrated...a couple of years later I developed terrible constipation and had never had that problem before in my whole life (every possible GI test was done and came back normal)....this was also coincident with fluctuating cognitive problems and trouble concentrating on my work....this all started in 2000-2002. I believe major external stressors over a long period of time led to a "crash" in nov of 2008. Since then I have experienced personality changes and irritability and anger about which I am not happy - I don't want to be that kind of person......I have been developing more symptoms more rapidly since then too including a loss of smell...which I regained following a root canal, but it now fluctuates, and the parkinson's symptoms started too in summer of 09 - tremors, muscle spasms.....Oh I also had RBD for as long as I can remember - not terribly bad in my 20s but worse now I believe at age 46. Thank you all for all you do and for this thread because I can see there are some specific symptoms to LBD that really do not occur this way in other conditions....
Bless you all,
Tonya

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Mon Mar 21, 2011 12:17 pm
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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
God bless you, Tonya! You are a courageous woman and I pray we can be supportive of you as you bravely step into Lewy Land.

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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 12:20 pm
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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
Bless you, Tonya.... What a medical history you have! I'm so sorry.

My husband had all sorts of symptoms early .. but ignorance is bliss and we just didn't know enough to be concerned. The fact that you know what is going on must be torture. I hope interaction with us will continue to help.

We care.

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


Mon Mar 21, 2011 12:23 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
dareitz wrote:
If that dr would have not made a diagnosis on the basis of fluctuation cognition and had know there are diseases which cause these fluxes...then maybe my dh would be a bit better off today! It frustrates me and makes me want to sue someone.

Debra, your story makes me so mad I want to sue somebody! A medical professional in a position to make these kinds of decisions has no excuse not to be familiar enough with the whole range of possibilities to at least know when he or she should refer the patient to someone else. grrrrr ...

Like Robin, I'd like to hear what this person says now.

I'd like to think that we don't hear more stories like this because such professional ignorance is rare. I'm afraid it is just because most people are past the age for applying for disability when they are diagnosed and no one can assume a financial motive for "faking it."

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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 Mar 21, 2011 1:06 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
Tonya, my husband's dementia doctor is Brad Boeve, the researcher. He has a theory based on observation (and not on formal research -- yet) that having RBD symptoms long before dementia symptoms occur indicates the disease process is progressing very slowly. If that is correct, it may be very good news for you. Once you get your present symptoms addressed you may be in the early stage, with relatively good quality of life, for a very long time. (I think I have mentioned before that Coy has been there more than 7 years.)

Of course you do not want to be "that kind of person" who is irritable and and angry and changed in personality. You and your husband will have to hang on to the firm knowledge that these changes are not you. You are still the kind of person you have always been. It is Lewy that is getting in the way of your true personality coming through. The goal of much of the treatment is to let you be you. Hang in there! Don't give up hope. It takes a long time and a lot of patience, but there are treatments well worth trying.

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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 Mar 21, 2011 1:24 pm
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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
Could someone explain what RBD is to me please. Thank you

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


Mon Mar 21, 2011 1:55 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
robin wrote:
Debra,
That's the first time I've ever heard of such a story. What does the "pseudo dementia"-diagnosing neurologist say now?!
Robin

Robin,

I have not bothered with him since I received the report. When this is all said and done, I may have a lawyer tell him all about it.

_________________
~~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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Mon Mar 21, 2011 5:32 pm
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Joined: Sat Oct 06, 2007 4:28 pm
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Location: LA
Post Re: What was the very FIRST symptom of LBD in ur LO
Quote:
RBD = REM sleep behavior disorder
MSA = multiple system atrophy (another synucleinopathy in which RBD appears)
MCI = mild cognitive impairment

(Ignore MSA because dementia is an exclusionary criteria.)

For the Mayo study on RBD and MCI, see:
viewtopic.php?f=14&t=1713

BTW, RBD is a "suggestive feature" of LBD (according to the diagnostic criteria). Since it occurs in other disorders (like PD and MSA), it's not a core feature/symptom.

Robin


I deleted the previous post!!

Sorry folks, this is in answer to Ger who asked exactly what RBD is. I know the feeling. We have a whole new language on this forum and it takes a while to put everything in place. I read the question and was in the process of finding the answer when my daughter called with a report of her day at work. I wanted to listen to her but I also wanted to get the answer to Ger as soon as possible so I just sent the whole post from Robin without condensing it to what was pertinent. I hope this is better.

Dorthea

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"See this lady, she's 85, but she's nice"


Last edited by dorthea on Mon Mar 21, 2011 7:10 pm, edited 1 time in total.



Mon Mar 21, 2011 6:19 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
hmmm ... all of the core features of lbd occur in other other disorders. I don't think that exclusivity to lbd is a definition/requirement of being a core feature. But it is true that currently RBD is listed as a suggestive feature rather than a core symptom.

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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 Mar 21, 2011 6:45 pm
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Joined: Wed Mar 02, 2011 1:04 pm
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Post Re: What was the very FIRST symptom of LBD in ur LO
Thank you all for your kind words!! I don't feel very courageous! :) but thank you nevertheless! And JeanneG, thank you for that wonderful hope you share - I will show my husband what you wrote - my husband has always said the key to contentment was to be comfortable with uncertainty (long before I became ill he said this) and I think it is so true - My wise Grandmother also always said it never works out like you worry it's going to - we just can't know the exact future - so might as well be hopeful! It is upsetting what I can no longer do and my personality changes - but maybe I can find ways to deal with those things - my husband has been very understanding...I am blessed.....I can't tell you all how much I appreciate you - as examples of giving, self-less people who love deeply and truly (I know you are only human and must have your days - I was a caretaker for family before becoming ill myself - even some since then).....and thank you for the kindness you show to me! It really means a lot to me!
Best wishes,
Tonya

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Mon Mar 21, 2011 6:51 pm
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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
Tonya wrote:
My wise Grandmother also always said it never works out like you worry it's going to - we just can't know the exact future - so might as well be hopeful!
The quotation Dale loved was, "Worry is the interest we pay on a debt that may never come due."

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


Mon Mar 21, 2011 7:16 pm
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Joined: Tue Aug 17, 2010 9:20 am
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Location: So Cal
Post Re: What was the very FIRST symptom of LBD in ur LO
Hi Debra,
After an entire year of testing (at the VA) to find out why Ken was having word finding issues, their final diagnosis was pseudo-dementia. That was 2007. We then spent the next year having the same tests repeated at Kaiser and in September 2008 they gave us a diagnosis of probable Alzheimer's. That was the first time he was offered any sort of med to combat the symptoms, and that was 2 years after we noticed a problem. Frustrating to say the least. And regarding constipation: Ken never had it until this year and now it is our constant battle. Sher

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Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.


Mon Mar 21, 2011 7:38 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
Pseudo-dementia sounds to me like "being a little pregnant." Perhaps a term like "early dementia" or "pre-dementia" with some list of symptoms on a continuum/timeline would be a bit more palatable. Lynn

_________________
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.


Mon Mar 21, 2011 10:46 pm
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