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 Cross topic--stages, life expectancy and invasive procedures 
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Cross topic--stages, life expectancy and invasive procedures
There have been postings about the desirability of invasive medical procedures for LBD patients. Seems to me that the answer depends on the stage of the disease, life expectancy, and the procedure in question.

My husband seems to be stage 3. It is time for his colonoscopy. The procedure is invasive but is no big deal and the patient isn't even aware of it. It isn't just diagnostic but can prevent colon cancer with the removal of pre-cancerous polyps. What is a big deal is the prep, and how do you get a Lewy patient to do that, especially if getting seated on the toilet is difficult?

All of which is relevant to life expectancy, i.e., what procedures might be worth doing depending on life expectancy. There is a wide discrepancy due to being measured from time of symptom onset or from time of diagnosis. Those are subjective and without any realistic starting point. Perhaps a more standard starting point would be from one of more of the stages.

Example: Dorothea, are you still here? You mentioned that Mr. B's course of disease was 11 years? How does that play out? Eleven years from what?

A more precise accounting based on stages would be helpful.

Gail


Mon Jan 10, 2011 1:47 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Cross topic--stages, life expectancy and invasive proced
Gail said,
Quote:
There is a wide discrepancy due to being measured from time of symptom onset or from time of diagnosis.


That is true. It is hard in many cases to know when to start counting. But in addition to that, the disease does not follow a "standard" timeline. In the LBDA brochure, under Prognosis, is the statement "progression can vary widely from 2 to 20 years." From what I've seen in my support group and online, I believe it.

There is no way (that I know of) to predict that once an LBD patient enters stage X he probably has Y years left. The end stage apparently is distinguishable from progression up to it, but I am not even aware of clear "stages" in LBD. On this site, under Learn about LBD/Diagnosis, is this statement:
Quote:
Defining the stages of disease progression for LBD is difficult. The symptoms, medicine management and duration of LBD vary greatly from person to person. To further complicate the stages assessment, LBD has a progressive but vacillating clinical course, and one of its defining symptoms is fluctuating levels of cognitive abilities, alertness and attention. Sudden decline is often caused by medications, infections or other compromises to the immune system and usually the person with LBD returns to their baseline upon resolution of the problem. But for some individuals, it may also be due to the natural course of the disease.


I agree with you, Gail, that the answer about invasive procedures
Quote:
depends on the stage of the disease, life expectancy, and the procedure in question
I wish determining those things were easier!

Best wishes to you as you deal with this very personal decision. Whatever you decide will be "right." You are making it in love and with the best interests of your husband foremost in your mind. What more can anyone do?

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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 Jan 10, 2011 3:01 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Cross topic--stages, life expectancy and invasive proced
Interesting topic!

From a personal viewpoint, the answer lies in what gives the best chance for the best life for the patient now. Dale takes medications which may shorten his life in order to improve his life now. (Seroquel, Sinemet)

Someone told me that you shouldn't ask the question if you don't want the answer. In other words, don't do the procedure unless you know what steps you will take with a negative answer.

Because Dale's mind is totally confused, I would not put him through anything that would make him uncomfortable. He was just diagnosed in 2009 but his quality of life is vitually gone.

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


Mon Jan 10, 2011 3:40 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Cross topic--stages, life expectancy and invasive proced
Gail, Derek had a colonoscopy last year and I was able at that time to get him to the toilet. He was also cooperative in drinking the prep solution [during a previous colonoscopy prep in the hospital, he kept throwing the solution across the room and didn't drink it]. Today, it would not be feasible on either count.

Seems to me that the rule of thumb for invasive diagnostic procedures should be: If you would treat the problem, do it. If not, don't.

_________________
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 Jan 10, 2011 10:40 am
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Cross topic--stages, life expectancy and invasive proced
Leone, I think that you and I (our LOs) illustrate the great variability in the progression of the disease. In his eighth year Coy is still at home and quite high-functioning. In less than three years Dale has reached a dismaying decline. Maybe some day there will be ways to predict the progression and life expectancy, but right now it seems to be a wait-and-see situation.

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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 Jan 10, 2011 11:28 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: Cross topic--stages, life expectancy and invasive proced
I'm pretty sure DrP's 11 years starts counting at the point of symptom onset. I don't think her husband was ever officially diagnosed with LBD...she diagnosed him herself. (And her diagnosis was confirmed upon autopsy.)


Mon Jan 10, 2011 1:24 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: Cross topic--stages, life expectancy and invasive proced
My Husband was sick about 9 yrs but only DX'ed for 4 of those, All the papers I have seen say 5-7 yrs but could be 2-20 yrs !

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Irene Selak


Mon Jan 10, 2011 4:01 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Cross topic--stages, life expectancy and invasive proced
My dad was 87, almost 88 when I found out from his dr. that he probably had Parkinson's and was developing dementia. 3 weeks later he became extremely debilitated for no apparent reason, and 18 months later he died. It really is a big guess as to how long a person will live with LBD or other related illnesses. He had stopped ALL tests, invasive or not, at about age 85 because he knew he would never have another surgery or anything like that if he did have cancer or whatever.
What would be your decision if you found out he did need surgery? Would you want his quantity of life prolonged if there was no quality of life? The answer to what you would do if...... will tell you what is right, like several have already said. Best wishes making tough decisions, 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.


Mon Jan 10, 2011 4:35 pm
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Joined: Tue Feb 23, 2010 10:32 am
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Location: Kalispell, MT
Post Re: Cross topic--stages, life expectancy and invasive proced
Since a colonoscopy can itself be treatment, not just a test, it can prevent the LO from getting colon cancer. A really nasty disease, I understand. So if life expectancy is unknown and a simple test can detect and prevent, what are the considerations beyond perceived life expectancy?

"Invasive" is relative--the colonoscopy itself is a non-issue to me. The prep with LBD is the nightmare.

Robin, I found the stages helpful and could confidently place my husband in stage 3. Why can't they be posted here?

If stages could be coordinated with actual time spans, it might be revealing, but isn't practical.


Tue Jan 11, 2011 3:03 pm
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Joined: Sun Aug 29, 2010 5:46 pm
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Post Re: Cross topic--stages, life expectancy and invasive proced
Where exactly is the information concerning the stages of LBD located? I understand all the caveats about how they are not precise and so forth, but I think it would be helpful for me to see them. I have looked, to no avail.

Thanks,

Julianne


Tue Jan 11, 2011 3:13 pm
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Post Re: Cross topic--stages, life expectancy and invasive proced
As I understand it [Irene, correct me if I'm wrong] the document is proprietary, that is, as copywrited, and the owner of the document will not allow it to be used in any forum but her own.

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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.


Tue Jan 11, 2011 3:43 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Cross topic--stages, life expectancy and invasive proced
Julianne, I have not seen a professional assessment or a scientific paper on stages for LBD, but I have seen various lists compiled by discussion boards or caregiver groups. I found those mildly interesting but not especially helpful. Since they are not "officially" accepted, talking to my LO's doctors about going from stage 3 to stage 4 doesn't mean anything -- we need to talk about specific behaviors and symptoms. And even if we could say, Coy is now in stage "X" we still wouldn't know whether that would last 2 months or 6 years. The fact the Lewy jumps back and forth between decline and improvement doesn't help, either.

If you do a Google search for "stages lbd" you will be able to find some of the non-professional lists. Perhaps Gail can point us to the one she is using.

LBD is definitely a progressive disease, but it seems to progress in fits and starts rather than well-defined stages.

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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


Tue Jan 11, 2011 4:11 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: Cross topic--stages, life expectancy and invasive proced
I think it's ridiculous that the stages can't be posted here. They were posted here a couple of years ago by neuroguy, and then a few months ago they were deleted (and most of the posts about this "debate" were deleted as well).


Tue Jan 11, 2011 4:53 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Post Re: Cross topic--stages, life expectancy and invasive proced
Robin, you would have to take that up with S.L., I guess. It's her document. Since she posts articles she gets from you on another forum, you'd think she'd be amenable. OTOH, maybe because it's 'not scientific', LBDA does not want to have it posted? I'd like to see it available to everyone as a useful tool to determine where our LO currently is. I've had to change mine a couple of times based on that scale. But I'm not going to post something that's a proprietary document without the owner's permission.

_________________
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.


Tue Jan 11, 2011 5:13 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: Cross topic--stages, life expectancy and invasive proced
gailshef wrote:
Since a colonoscopy can itself be treatment, not just a test, it can prevent the LO from getting colon cancer. "Invasive" is relative--the colonoscopy itself is a non-issue to me. The prep with LBD is the nightmare.

The last time Dale had a colonoscopy, he screamed so loud the whole world could hear him. I would never do that to him again. In fact, I just read (New England Journal) that once every five years is good enough for colonoscopies.

Sometimes, less is better.... especially since Dale is extremely delusional now. Each case has its own rules.

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


Tue Jan 11, 2011 6:17 pm
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