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 LBD Patient Life Expectancy 
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Post LBD Patient Life Expectancy
Hi! I am new to the LBD site but have been caring for my wife of 52 years for some time, so I am not new to the disease. She was first diagnosed 5 years ago but we began to notice very minor memory lapses about 2 years prior. Memory lapses originally were mainly in losing a thought in mid-sentence. Her neurologist has told me recently that he believes that she is now in the final stages of the disease and does not expect her to survive the next 12 months. I have not seen any reference to a LBD progression and would like to know if anyone has any information regarding such a "timetable". Does LBD have a progression that is predictable? Our neurologist is a well respected doctor and researcher and this information is very troubling to me. Are there any reference materials regarding this question of longevity? Thank you.


Mon Jul 26, 2010 8:34 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: LBD Patient Life Expectancy
lbda.org states: "The disease has an average duration of 5 to 7 years." This would be disease duration from the time of onset, not from the time of diagnosis.

The only predictor I've seen of survival time is here:
viewtopic.php?f=14&t=325

Looking at 14 pathologically-confirmed DLB patients, average survival time after the onset of dysphagia was 10 months (range was 3-17 months).

Speaking of that....did you discuss brain donation with your wife, or do you have your own opinions about this? As you may know, it's the only way to confirm the diagnosis. Diagnostic accuracy for DLB is very low (less than 33%).

Has your neurologist prescribed hospice? If he's giving you a less-than-12-month window, I'd be in close contact with him about when that window seems to be closing. Hospice can be very helpful to both the patient and family.


Mon Jul 26, 2010 8:50 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: LBD Patient Life Expectancy
Hi Allyn - welcome to a supportive group of people and a ton of information. I am sorry you have to be here and hope you find this forum and chat as helpful as I have.
If you post your questions under the topics like "Treatment Options" or "Symptoms", etc. you'll be more likely to get answers, as there is more traffic under those topics than the Welcome or Intros.
Hope you come to the forum often! 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 Jul 26, 2010 9:35 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: LBD Patient Life Expectancy
Allyn, Welcome to our group where everyone understands what you and your wife are going through. Robin, With the 5-7 year survival time for LBD loved ones, wouldn't you also have to factor in their age and other health issues. My husband has no, physical , health issue, I'm of the thought that he will continue to decline mentally but will hang on physically. I hope I just don't understand the powers of the brain.

_________________
Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Tue Jul 27, 2010 7:05 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: LBD Patient Life Expectancy
Gerry -

Good point. Here are two sentences from lbda.org:

"The disease has an average duration of 5 to 7 years. It is possible, though, for the time span to be anywhere from 2 to 20 years, depending on several factors, including the person's overall health, age and severity of symptoms."

Usually when we see 20 years of symptoms, the person has RBD (REM sleep behavior disorder) and that symptom has preceded all others by a decade or more.

Robin


Tue Jul 27, 2010 10:26 am
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Joined: Tue Feb 10, 2009 7:21 pm
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Location: cary, illinois
Post Re: LBD Patient Life Expectancy
My LO has had REM sleep disorder and severe obstructive sleep apnea for as long as we've been married (26 years). He started with memory lapses, cognitive deficits and hallucinations about 2 - 3 years ago, dr dx of probable LBD a year ago and parkinsonisms six months ago. Who would have known that we would be on this ride all those years ago.
My LO is still working and getting around but I don't know for how much longer, I truly think he has "show time" going on while he's at work because he seems to come home very tired. It must be such a trail to maintain a level of "normal" while he's working, we told his HR Dept. about his illness three months ago and they said they want him to keep working for as long as he is able, my only concern is that if he doesn't have work to keep him going when he stops will that trigger a downward spiral? As he won't have work to occupy him.
So do we use the 5-7 year life expectancy numbers which means that he could have four years maybe?
I have other questions but will post in the symptoms and/or treatment area.

Thank you for listening.
Side note Robin can you contact me to discuss brain donation - we are in Illinois


Thu Aug 05, 2010 1:19 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: LBD Patient Life Expectancy
Hello PMS,
Wonderful that your husband's employer will allow him to remain there. I do wonder if they know what they are getting themselves in to? They will have to monitor the situation closely. I know many people with LBD have delusions that they are still working even when they are retired and staying at home. It's hard to know if your husband will decline when he retires. I assume he will have to decline before he's forced to retire.
Robin

PS. Please email me (rriddle AT stanfordalumni DOT org) about brain donation. I can't deal with those PMs (private messages) and I'm sorry that the LBDA has decided to eliminate the email address button for those of us willing to have our email addresses known.


Thu Aug 05, 2010 2:58 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3173
Location: WA
Post Re: LBD Patient Life Expectancy
pms, is your husband driving to and from work??

_________________
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.


Thu Aug 05, 2010 3:48 pm
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Joined: Tue Feb 10, 2009 7:21 pm
Posts: 4
Location: cary, illinois
Post Re: LBD Patient Life Expectancy
mockturtle,
Yes, my husband is still driving. He has a GPS in his truck with home programmed in so that in the event that he gets lost/confused he can push favorites and find home. His driving is still good although I worry for how much longer. We seem to have hit a plateau, and I am waiting for the next downward slide, seems like all we do is wait for the next symptom to come and then make changes accordingly. It seems that the things he's done for along time have remained and the newer things are harder for him to hang onto. He's an avid photographer of plants and landscapes, racing and wildlife and is something he has been doing for 50+ years and I have noticed that even this is starting to slip. As frustrating as this illness is for the caregiver, I keep reminding myself that "I will miss this too some day" when he does something that frustrates me, that it has to be doubly frustrating for him because he is aware of whats happening. Sorry I went off on a tangent, as my LO would say "Be Brief, Be Bright, and Be Gone" to anyone who needed to "paint the picture instead of getting to the point"
Pat


Wed Aug 11, 2010 11:52 am
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: LBD Patient Life Expectancy
pms:

Giving up driving is one of the hardest things aging individuals face and it's difficult for a family member to be the bad guy. However, two points that I made (and make) to my husband are:

1. How would you feel if you hit a child who runs out in the street and you can't stop because you have poor reflexes and vision/depth perception (not to mention cognitive impairment, which I don't bring up).

2. Even if you aren't at fault, you will be simply because of your medical condition. Forget medical confidentiality. Your records and your doctor's testimony are only a subpoena away.

Gail


Sat Aug 14, 2010 9:43 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: LBD Patient Life Expectancy
Those are the same points I brought up to my father last year when I had to convince him to stop driving.
What I didn't tell him is that I know someone whose son and daughter are being sued for NOT having taken their elderly, impaired father's license away. So not only is the father being sued, but the adult children have the legal costs, the guilt, and the hassle of fighting a lawsuit too. This is not what any of us needs either! I just thank my lucky stars that my dad did not kill or badly injure someone in that last year when he really shouldn't have been driving. 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.


Sun Aug 15, 2010 2:41 pm
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: LBD Patient Life Expectancy
Lynn

I think we all let them drive longer than they should and we know better. My husband was always an exceptionally good and safe driver. I let it go on probably a year, and am lucky like you that nothing happened.

Gail


Sun Aug 15, 2010 3:53 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: LBD Patient Life Expectancy: Driving
My husband, who has not driven for over five years, would not have stopped on my account but when others refused to ride with him he got the message. I also am very thankful it didn't take an accident.

_________________
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 Aug 15, 2010 4:30 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: LBD Patient Life Expectancy(driving)
Del quit driving almost 9 years ago. His Parkinson's was worsening and it has always been worst on his right side.....and he didn't feel his reaction time was quick enough to stop quickly if he needed to. I have never been prouder of him EVER in all the years we've been together than when he gave up a freedom to protect others from what might happen.

I just read this to him and his reply was, "Well it was only common sense." No wonder I love that guy.

Nan


Sun Aug 15, 2010 4:41 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: LBD Patient Life Expectancy
Frank has not driven for 3+years but he feels he could and should be able to drive. I keep the keys hidden and the vehicles locked. He'll take any key he can find and try to open the door, he has taken the key for the lawn mower, the freezer key and the house keys. I took him to have his license renewed 1 1/2 yr ago, knowing he'd never get it. He couldn't understand any of the directions for the eye test or where to stand for his picture, they were very patient and ended up giving him his license. I could have spit nails. He occasionally drives the rider mower but is puzzled when he has to back up or turn the blade on, I've tried to make his understand that if he were driving he couldn't sit until he figured out what to do. He's got a lot better about not pestering me to drive. Driving was his life so I understand, he has nothing left that he can do, it's sad.

_________________
Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Sun Aug 15, 2010 8:38 pm
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