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 Hello...Dad with LBD (primary diagnosis) - very fast onset 
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Joined: Mon Dec 12, 2011 3:46 pm
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Post Hello...Dad with LBD (primary diagnosis) - very fast onset
Hello...Dad with LBD (primary diagnosis) - very fast onset. Has gone from being healthy and robust and working 50 hour weeks 1.5 years ago to being unable to live at home - and is currently in the hospital Acute Wing. We are shocked because I have read about other families experiencing 5, 7 or 10 years with their loved one after a diagnosis...is it just my filters because of where I am at right now? That is, have others had this experience of fast onset LBD (as a primary diagnosis)? Thank you.


Wed Dec 14, 2011 3:24 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Hello...Dad with LBD (primary diagnosis) - very fast ons
Yes - I had been told my dad "probably had PD & AD" by his GP and had some symptoms of each, but he was living at home independently, driving, etc. at that point. Things were deteriorating so I hired part time in-home care and got him on a list to move into an ALF. 3 weeks later I got a call that my dad had fallen out of bed, was paralyzed from the neck down, could barely talk. He was hospitalized, no dx for what had happened, and he was 100% incontinent, could barely even move his head, couldn't feed himself, dress himself and could barely talk. And he had hallucinations. NO ADLs at all overnight!
He regained some physical skills in rehab, but other than feeding himself and talking, almost all ADLs were never regained. I got him to a neuro. and we got various DXs, including LBD, and he continued to deteriorate with big drop offs in skills every once in a while. He died 17 mo. later. His last 6 mo. he couldn't feed himself and eventually couldn't sit up in a chair or wheelchair for others to feed him.
We don't know for sure if it was LBD, but that seemed to explain a lot of his symptoms.
I wish you all the best. This is not an easy situation for anyone, in fact it's downright heart breaking and exhausting but you have come to a great community of support and info. 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 Dec 14, 2011 8:27 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: Hello...Dad with LBD (primary diagnosis) - very fast ons
Such fast decline is reminiscent of what's seen in CJD (Creutzfeldt-Jakob Disease). Has your father seen a dementia specialist recently?

With rapid decline, it's not always CJD as you can see from this Mayo paper here but it often is:
viewtopic.php?f=14&t=1440

In that Mayo paper, all of the diagnoses are autopsy-confirmed. With nearly all neurodegenerative disorders, a confirmed diagnosis is only possible upon brain autopsy. The rapid decline means that only a few brain banks and only a few pathologists would be willing to handle the brain, if you were interested in getting a confirmed diagnosis, because CJD tissue is dangerous.


Wed Dec 14, 2011 1:37 pm
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Joined: Mon Dec 12, 2011 3:46 pm
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Post Re: Hello...Dad with LBD (primary diagnosis) - very fast ons
Thank you Lynn and Robin.
Re CJD - my Dad definitely had Lewy Body - primary dx. Textbook actually. Received an excellent and early dx...many LBD'ers up here are not dx...so we were 'lucky' if one can call it that.

The difficulty we have had are with potential caregivers and/or services and or planning for his future care - we are prepared in all ways but the system up here, unfortunately, does not seem to kick in until they have a hospital episode which is too bad because I believe early therapies are what is needed - social, music, physical, speech, etc cetera in order to keep them "excercising" their brain skills - even though, of course, it is generative. I see it as providing quality of life care - but there seems sto be little knowledge of using therapies extensively since, I suppose, it is generally though that they do not improve ...And many people just kind of look at me like I have two heads...but it is the baseline that is important as opposed to where LBD'ers are headed... frustrating but I suppose, one day, more will be known.


Mon Dec 19, 2011 2:19 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: Hello...Dad with LBD (primary diagnosis) - very fast ons
You may know that the diagnostic accuracy of DLB is less than 33%. Even DLB experts don't get it right all the time.

Can your family afford to pay for those early therapies on your own? I think one of the issues with such therapies is that there's been little effort to study if these things improve quality of life.


Tue Dec 27, 2011 3:13 am
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Hello...Dad with LBD (primary diagnosis) - very fast ons
Even dementia experts can get the diagnosis wrong, but their success rate is far higher than 33% (at least at the program my husband is in at Mayo Clinic).

One loved one in my local support group died less than 2 years after diagnosis. (I don't know if the diagnosis was autopsy-confirmed; her caregiver stopped coming after she died.) Another loved one is in his 11th year, and has been in a nursing home for about 3 years.

My husband is in his eighth year and he's still at home. He started with very severe symptoms and progressed to milder "early stage" behavior. The theory is that his brain, in trying to fight off the formation of lewy bodies, was inflamed, and after the inflamation subsided he went from "severe" symptoms to "mild" symptoms.

Robin is no doubt right that there just hasn't been a lot of hard evidence about what may improve the quality of life. My husband's dementia specialist (at Mayo) believes that stimulation and "novelty-seeking experience" is theraputic, as long as the patient continues to respond positively to it. And I consider a positive response in itself a quality indicator.

It sounds like your dad has had a hospital episode. Does that qualify him for more services?

I think that many of the quality-of-life therapies are do-it-yourself projects. Field trips are one example. This can range from a tropical cruise to a visit to a museum to a stroll (or wheelchair ride) through a conservatory or botanical gardens. My husband recently responded very enthusiastically to a trip to an large aquarium. He's also enjoyed a tour through a brewery, plays (although he is getting less able to follow dialog, he still enjoys the experience), outdoor band concerts, and dinner at restaurants. There is no way of knowing whether these activities have built more pathways in the brain to make Lewy's job harder, but at the very least they've given pleasure while he was doing them.

_________________
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 Dec 27, 2011 3:56 am
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: Hello...Dad with LBD (primary diagnosis) - very fast ons
edumbar,
So many with a DX of one thing or another and honestly they really don't know , we can only treat with what we are told our Loved one has.

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Irene Selak


Thu Dec 29, 2011 11:03 pm
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Post Re: Hello...Dad with LBD (primary diagnosis) - very fast ons
Every case of lbd is different. You are not neglectful if you don't provide stimulative experiences. I tried for over a year to make sure my hb's days included novelty and stimulation. Turns out he's one of those who needs quiet, routine, and predictability. He goes for lunch 4 days a week with a respite-giver--somewhere cheap, predictable, and safe. It's just enough for a treat without arousing agitation. We caregivers study our LO's carefully to determine what works for them,so keep an open mind. Could be what makes yours happy is boring routine.


Mon Jan 02, 2012 4:09 am
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Joined: Mon Dec 12, 2011 3:46 pm
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Post Re: Hello...Dad with LBD (primary diagnosis) - very fast ons
Hi Challenged,

Well I am "betwixed and between" as they would say... on the one hand I completely agree with you re a "routine"... on the other hand, a routine is simply not enough for my Dad...and he has mentioned this very thing to us. (To give you an idea is in Stage 6 or the begining of Stage 7... so he is quite far along and in LTD now). Thus the delicate balance between negotiating "agitation from stimulation vs agitation from under-stimulation"... and it has been very difficult to deal with.

Agree with you that introducing him to a new skill set, new past time, new card came, 100 new people, et cetera may not be the best... and, in fact, my Mum and I have the boring routine down pat... which he "likes" and so we are with you there...now that he is in the hospital he is settling in there...(but mind you only started setting in there after Mum and I started going twice a day ... each. So he received a total of 4 visits a day at minimum between my Mum and I...plus additional visits from other family and/or friends who visit...)

However, Dad is also looking for stimulation... not agitation but stimulation and/or therapy...ways to improve himself - and he is always looking for socialization opportunities...Am thinking that perhaps what works varies from person to person because of course if they were quiet introverts prior to the disease - they might still be quiet introverts...(but not necessarily because sometimes their personality changes completely). However, my Dad was an extrovert and was very proactive re his health... and so if this is not facilitated he is completely frustrated and becomes agitated and even quite angry...

So... guess what I am trying to say is that the boring routine re personal care and hygiene, meals, sleeping arrangements, et cetera definitely needs to be in place...but have found that LBD'ers also need stimulation and are mostly unable to read a book or watch TV or entertain themselves ... so striking the balance is the challenge...

I have witnessed professional caregivers and nurses attempt to settle LBD'ers "into a routine" and have noted the frustration of all the parties involved... LBD'ers in my experience are extremely intuitive - and understand and hear much more than we think they can... and have periods of absolute lucidity... or at least I have found that my Dad (as well as the patients around him) have....

This "understanding" by the LBD'er may be completely looked over due to his/her inability to communicate and/or string words together properly... however they recognize when they are being placated, or "defaulted" to a lower functioning level - lower than they know they would be capable of with just a little assistance...

So, routine absolutely... but I would caution people in thinking that a calm routine is all that is needed because LBD'ers haves short attention spans - and should this go unacknowledged then there are some unmet needs to be sure which may not cause you or I to have an episode - but it could certainly bring on an episode with an LBD'er...


Mon Jan 02, 2012 5:06 am
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Hello...Dad with LBD (primary diagnosis) - very fast ons
edunbar wrote:
Am thinking that perhaps what works varies from person to person


You've hit the nail on the head with that one!

I think that most caregivers start out with the idea that whatever they've read about or whatever the doctor has suggested is what should work, and we practice it dillegently. With experience we learn that one size does not fit all, and even that something that fits in the morning might not fit in the afternoon. Being a successful caregiver is 2 parts Florence Nightengale and 3 parts Sherlock Holmes. :lol:

_________________
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 02, 2012 4:01 pm
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Joined: Sun Oct 17, 2010 2:06 am
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Post Re: Hello...Dad with LBD (primary diagnosis) - very fast ons
Oh my gosh, Jeanne, you are so so right. My hb was not at all outgoing, and all he wants is peace and quiet. Any time he is taken out of his routine he has a downturn, often permanent. We've learned the hard way that casual lunches out with 1-2 people at a diner are ok, but a nice outing to dinner with 4 or more is asking for a week of distress. Caregivers are always "on", always learning, always balancing six things against seven others. Whatever routine means to our LO's, we can never fall into it.


Mon Jan 02, 2012 4:17 pm
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Joined: Mon Dec 12, 2011 3:46 pm
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Post Re: Hello...Dad with LBD (primary diagnosis) - very fast ons
I agree with both of you - Jeanne and Challenged. And Dad certainly needs his routine...however, to be frank he is bored to tears (literally)...and the nurses and care aids have even commented on this... he loves routine - but he also enjoys treats suprises and loves people - any people - talking to him.

Introspective he is not - because he simply no longer has the cognition to be introspective (though he used to be). So he is looking for outward stimulation... guess the reason I am making this point is because neither my Mum nor myself would have thought that someone in his condition wanted stimulation... we were told that quiet and routine and predictability and as little change as possible were best...

How wrong we both were - at least in my Dad's case. Yes, all of the above needs to be there... but he starts crying if no one stops to talk to him...and keeps asking me if I can sign him up for activities...the care aids are sweet and soft and gentle - but the ones we have had do not know how to talk to my Dad... they are used to full on Alzheimers or Parkinsons or dementia...not the wild swings of and variations between lucid and not so lucid moments my Dad has...they simply do not understand the needs of LBD'ers like my Dad.

Guess this is what I have found so frustrating and heartbreaking at the same time...all the health care workers want him to sleep and rest and be quiet - and apart from his 6 hours of sleep a night - he feels healthy and wants "action"... and so it is frustrating for the health care workers themselves and for my Dad... because he is not "out of it" and many of the caregivers have not grasped that fact...


Mon Jan 02, 2012 8:33 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Hello...Dad with LBD (primary diagnosis) - very fast ons
I don't know where you live but it sounds like there could be better options for a care facility than the one your father is in. Speaking only of my husband's nursing home, activities are a big part of the daily fare there and not all on a rigid schedule, either. It is an Eden Alternative facility which has flexible meals and sleep schedules as well as activities and other stimulation geared to the individual. And each resident IS treated like an individual. It's not perfect by any means but they really do try.

_________________
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 02, 2012 9:58 pm
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Joined: Mon Dec 12, 2011 3:46 pm
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Post Re: Hello...Dad with LBD (primary diagnosis) - very fast ons
Hi Pat,

Yes, you are very correct. It is not optimum for my Dad right now - and to boot he is in the hospital - a general medical ward, awaiting placement so needless to say this is even less optimal. So now, apparently, the hospital has the rights to put him wherever they want. Unfortunately the Lower Mainland, BC, has very few options for LBD'ers. Way more options for the other dementias' but for some reason LBD is a real problem up here. (Not sure for all of Canada or if Vancouver is just a particular problem.)

Mum and I tried private and a combo of private/public and then tried getting him on various waiting lists - we were denied. The fast onset of LBD with my Dad was not acknowledged - people literally thought my Mum and I had two heads each when we were pursuing care. (We started early because we knew what was coming...but no one believed us.) The private place kicked him out - he "walked" and was ambulatory which I don't actually think is a problem anymore than Alzheimers patients "wandering"... so not sure what the fuss is about except I gather many public and private places do not like to deal with people who have hallucinations. Dad's hallucinations are very harmless - he mostly thinks people are watching TV with him, or a dog is coming up to him to be petted, or that he needs to show a president some financial statements, et cetera. He pretty much hallucinates about the life he used to have - but people turn hallucinations into the stuff of tv movies...drives me crazy. ;-]

So, the care choices right now are very poor here... and our universal medical system is wonderful for complicated procedures, open heart surgeries, cancer treatments and assisting the younger crowd - but I am afraid that seniors such as my Dad suffer under the same system.

My Mum and I were willing to pay $10,000 a month (which is astronomical up here) and no one to date has even let us do that! So we are in a, to be frank, in a rather bizarre situation.


Tue Jan 03, 2012 4:10 am
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Hello...Dad with LBD (primary diagnosis) - very fast ons
For that amount of money, can you get in-home help sufficient to keep him there?

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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 03, 2012 11:44 am
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