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 Point of Diagnosis 
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Joined: Mon Mar 14, 2011 12:20 am
Posts: 3
Post Point of Diagnosis
My mother was diagnosed with LBD 2 years ago this week. She went from a Saturday living on her own very independently...to being in the hospital Monday for delusions...planning to go in Assisted Living on Wednesday...Given Haldol in the hospital and unable to move to AL...moving into a SKF in the alzeimer ward....all within 7 days. Mother knows my name but has no connection with the fact I am her daughter, or even what a daughter is. She is not aware of anyone else in the SNF; doesn't watch her beloved baseball; can't read; walks constantly.

The doctor refers to her prognosis as points from day of diagnosis. I noticed several places in the forum it also refers to time lapse from "day of diagnosis".

While cleaning out her house I find strong evidence of her having issues for the last several years. Dated prescriptions hiden in the backs of closets on high shelves. Food that should have been refrigerated hidden around the house and much more. and much more.

Are the time lines truly from day of diagnosis with no reference to past issues?


Wed Mar 30, 2011 8:58 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3363
Location: Vermont
Post Re: Point of Diagnosis
Hi Leelee, and welcome. Sorry for your need to be here. Re: timelines - people with an LBD diagnosis can vary so much in their symptoms and rapidness of decline, that to me, predicting a timeline from diagnosis to death is probably absurd. Many folks on here have LOs who were MIS-diagnosed, or never really diagnosed, so who knows what the timeline could be.
My own dad had been "semi diagnosed" with Parkinson's several years before we were even aware he had dementia, and he never really had the PD tremors till almost the end. From the time I heard about "possibly he has Parkinson's, and he's had dementia for 2 - 3 years" from his dr., it was about 18 months till he died. He had an extremely rapid decline, literally overnight, where mobility, executive functioning, etc. was lost, and most of that never came back even after weeks of rehab.
Some people on here have LOs who've been obviously symptomatic for many, many years and the person may still be mobile and fairly functional at least with some ADLs.
Glad you found this supportive, informative community of caring, knowledgeable individuals. 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 Mar 30, 2011 10:29 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Point of Diagnosis
Good Morning LeeLee,
Welcome to the LBDA forums, sorry for the need and most of all sorry for the very fast decline due a drug. As to the duration I believe that was the old way of thinking from DX now it is from onset of LBD symptoms.
I hope you find the forum a place of information and compassion!

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Irene Selak


Wed Mar 30, 2011 10:37 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Point of Diagnosis
Leelee, welcome to the forum! It's a horrible disease and, as you have found, made even worse by imprudent administration of medications. I finally got wise and put 'Haldol' and 'Risperdal' as drug allergies on my husband's medical records, even though he has never taken Haldol [he had a terrible reaction to Risperdal]. It's amazing how many people on this forum have LOs who were given Haldol in a hospital setting. Be sure to print off some of the LBDA information sheets to hand out every time your mother sees a health care provider, even a dentist. A 'Fact Sheet' download is available at this site: http://www.lbda.org/category/4115&cfid=23308302&cftoken=98452363/publications.htm It at least provides some basic information and clear warnings about possible drug reactions. God bless!

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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.


Wed Mar 30, 2011 10:43 am
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: Point of Diagnosis
irene selak wrote:
...now it is from onset of LBD symptoms.
That 'old way of thinking' certainly misled us. Somewhere we read that the average life expectancy 'after diagnosis' was eight years. We didn't even have two years. Dale was diagnosed in August 09.

Now I realize that if Dale had been diagnosed accurately in the early days, we might have had a more realistic idea of how long he had. We did make the most of those two years but I also feel a bit cheated. Lewy is such a mystery. His downward spiral was sudden and severe. In some ways, that's a blessing.

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


Wed Mar 30, 2011 11:34 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Point of Diagnosis
Leone,
Honestly that's how I felt also as we only had DX for 3 yrs but it was there for sure I just didn't know what it was , so I certainly understand your comment !

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Irene Selak


Wed Mar 30, 2011 11:40 am
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Post Re: Point of Diagnosis
Timeline is from symptom onset. The date of diagnosis is irrelevant to the timeline.


Wed Mar 30, 2011 12:18 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: Point of Diagnosis
Does that mean that Dale was dying of his disease from the age of 27 when he began sleep-walking?

He had no sense of smell and little sense of taste when I married him 27 years ago. Do those count as 'symptoms'?

He has always had problems with spatial relationships. Does that count?

How about when his dizziness started in about 2002.... ?

I think there is far too much 'grey area' in the 'symptoms' category to make sense of any 'timeline.'

Leone

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


Wed Mar 30, 2011 1:28 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Point of Diagnosis
Leone, there are a LOT of questions, aren't there? Certainly more questions than answers at this point. :|

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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.


Wed Mar 30, 2011 2:22 pm
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Joined: Wed Mar 23, 2011 11:28 pm
Posts: 13
Post Re: Point of Diagnosis
Leelee, welcome to the forum. My MIL also had a reaction to a drug (Resperital) that was adminstered in a hospital that I believe she has not totally recovered from. As far a a timeline goes from what I saw with my MIL even prior to the drug reaction Lewy is more like waves instead of a linear curve that is predictable. Some days are good and some are bad. I have seen Mom sink real low only to bounce back at least temporarily for a period of time. Right now she is lower than I have ever seen her and all we do do is pray. I realize that she may not ever bounce back to where she once was so now all I do is enjoy/celebrate each and every moment that Mom is somewhat lucid no matter how short a period it is. Have faith and try to be strong for your LO. God Bless All.


Wed Mar 30, 2011 2:33 pm
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Post Re: Point of Diagnosis
mockturtle wrote:
Leone, there are a LOT of questions, aren't there? Certainly more questions than answers at this point. :|
I'm tempted to think that those who suffer from Lewy may be born with that predisposition. It's a terrible thought .. but we don't know how much we are 'programmed' at birth for length of life and health, do we? Life isn't fair.

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


Last edited by Leone on Wed Mar 30, 2011 5:43 pm, edited 1 time in total.



Wed Mar 30, 2011 3:52 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Point of Diagnosis
Quote:
I'm tempted to think that those who suffer from Lewy may be born with that predispostion.

I wonder. I know that when Derek had that brainstem problem back in 1986 his neurologist was discussing all the scans they had done and made the statement that 'his brain is wired a little differently' but that no pathology was seen [they never did diagnose the problem that kept him in the hospital for a month and the ICU for two weeks]. Oh, how I wish I had pursued that statement further! I guess I was just relieved that there was 'no pathology' seen. :shock:

_________________
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.


Wed Mar 30, 2011 4:48 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: Point of Diagnosis
In a strange way, I really enjoyed the fact that Dale's brain 'was wired a little differently.' He thought differently. I often accused him of wanting to 'reinvent the wheel' but it was because he could imagine another answer.... a different way of thinking about something.

Friends would say 'that's Dale.' Creative thinking led him into so many different business opportunities. He was a man of ideas. He loved to tell stories.

He was not an inventor. His spatial limitations wouldn't allow that... but he liked to 'think outside the box.'

If he was born with that, was he also born with Lewy?

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


Wed Mar 30, 2011 5:56 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Point of Diagnosis
Leelee wrote:
Are the time lines truly from day of diagnosis with no reference to past issues?


Welcome Leelee. It depends on who is talking about "time lines" as to when they consider the start date. It also depends on what they mean by "diagnosis." Does it just mean "people who have enough similar symptoms to get a tentative label of LDB" or does it mean "people whose brains are found to have Lewy bodies upon autopsy"? There could be a huge difference!

For example, if some source observes that 30% of people with lbd develop symptom x within the first 5 years, and that refers to people with tentative diagnosis, it may turn out that 100% of autopsy-confirmed cases had that symptom within the first 5 years, or that 0% ever had that symptom -- the accuracy rate of tentative diagnosis is that poor!

If a study is made of confirmed cases, the records may not include when symptoms first appeared -- only when the diagnosis was made.

I think I agree with Lynn on this one. The notion of a standard, predictable "time line" for this disease is an exercise bordering on absurdity. Overall the pattern is for increasing disability, but exactly how that progresses is highly variable. And the variability is there whether you start from some arbitrary symptom or from some milestone like "no longer able to live alone" or like "tentatively diagnosed by a qualified medical professional".

I like Leone's questions of when Dale's lbd really started. Multiply those uncertainties by the number of people who have the disease ("really" or "tentatively") and the notion of coming up with a timeline that fits all or even most cases is really daunting! Agr's image of waves rather than a line makes sense to me. For many, lbd seems to progress like ocean waves that curl back upon themselves, crash, and are followed by a new wave.

Leelee, it seems like your mother has had LBD longer than two years, based on the evidence you uncovered. But what that tells you about her future isn't very clear. My heart goes out to you as you deal with her present symptoms and behaviors.

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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


Wed Mar 30, 2011 8:03 pm
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Joined: Sun Aug 29, 2010 5:46 pm
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Post Re: Point of Diagnosis
This discussion takes me back to the day when the neurologist at the big teaching hospital sat down with me to give me my mother's diagnosis. He crisply told me that she had "probable LBD," and the basis for that diagnosis. Then he advised that the disease had a five to seven year course and she was approximately halfway through it. Period. End of explanation!

Of course, at the time I knew nothing of LBD and I just took his word as gospel. Now that I know a lot more about LBD, I really have doubts about that neurologist's expertise, but the point is, talking about the point of diagnosis or a person's prognosis is not very useful, IMHO. Everyone's course is so different. Having read this forum for several months, I can think of so many examples of that.

Yet I also know that at the beginning, those were exactly the things I felt desperate to know. How long will my mother have her existing cognitive ability, what will happen next, and how long will that take? What are the stages?

I struggled for months before accepting that there is no crystal ball. All we can do is get our LOs the best care available, advocate for them and stick with them for whatever time they have.

Julianne


Wed Mar 30, 2011 8:38 pm
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