Re: length of this LBD disease

November 7, 2011

It really depends on if you are talking DLB or PDD as the survival times are

different.

One small study of 14 autopsy-confirmed DLB patients showed that on average they

died 10 months after the onset of dysphagia. The range was 3-17 months.

See:

http://community.lbda.org/forum/viewtopic.php?f=14 & t=325

Some Austrian researchers looked at 243 autopsy-confirmed cases, and concluded:

" Older age at onset, fluctuating cognition, and hallucinations at onset

predicted shorter survival... When adjusted for age, gender, and Alzheimer

pathology, fluctuating dementia at symptom onset was identified as best

predictor of poor outcome. "

See:

http://community.lbda.org/forum/viewtopic.php?f=14 & t=543

That's the best research data I know of to help answer the question of survival

time.

>

> Anyone ,how long does this disease run its course? is it different for a

59 year old vs. a 79 year old? i have read 2-7, 3-8, 5-8, 2-20 ( not helpful).

asked the primary the other day. he doesn't seem to have a clue. financially,

it makes a difference because too soon in a NH and you are out

70-$100,000/year. can you spell B-A-N-K-R-U-P-T ? if you know for sure 2 more

years, you can plan better for either home care, 24-7, some combo of home care

or a facility. and a dr. has to approve hospice so it matters what he thinks,

etc. does Medicare pay for home care? all i know is i am wearing out after 2

+ years ( with care aide for 8 hrs /week). I may be a wreck in two more years of

this. thanks, gary

>

November 8, 2011

I asked a similar ? a while back - it's hard to tell since everyone is different

! Although 2-20 is thrown around although those numbers r more in sync with

alzheimers - 2-7 is more like it with LBD !

I recommend you look into Medicaid " in home care, " the rules for community

Medicaid varies from state to state - and are less stringent than NH MEDICAID

If your wife is eligible there is no look back - meaning you can transfer monies

out of your wife's name with POA today ( ur wife can have up to 13,000 and no

more )and as long as you have all the paperwork and a doctor who knows your wife

and her condition you can apply immediately -

Best

Judy

Judy R. Strauss LMSW PhD

Lead Faculty

University of Phoenix

Jersey City Campus

100 Town Square Place

|Jersey City, NJ 07310

Cell-

Email- Jrstr@...

On Nov 7, 2011, at 10:06 PM, " gary.s.dale@... "

wrote:

> Anyone ,how long does this disease run its course? is it different for a 59

year old vs. a 79 year old? i have read 2-7, 3-8, 5-8, 2-20 ( not helpful).

asked the primary the other day. he doesn't seem to have a clue. financially, it

makes a difference because too soon in a NH and you are out 70-$100,000/year.

can you spell B-A-N-K-R-U-P-T ? if you know for sure 2 more years, you can plan

better for either home care, 24-7, some combo of home care or a facility. and a

dr. has to approve hospice so it matters what he thinks, etc. does Medicare pay

for home care? all i know is i am wearing out after 2 + years ( with care aide

for 8 hrs /week). I may be a wreck in two more years of this. thanks, gary

>

November 8, 2011

$13,000? Here in Minnesota it's $3000. But one thing that is wise is

that, if there is still $13K, a prepaid funeral plan is an allowable place

to put some of that money and as funerals can cost over $6K, it's wise to

put that money aside before it is all gone.

Kathy

> **

>

> I asked a similar ? a while back - it's hard to tell since everyone is

> different ! Although 2-20 is thrown around although those numbers r more in

> sync with alzheimers - 2-7 is more like it with LBD !

>

> I recommend you look into Medicaid " in home care, " the rules for community

> Medicaid varies from state to state - and are less stringent than NH

> MEDICAID

> If your wife is eligible there is no look back - meaning you can transfer

> monies out of your wife's name with POA today ( ur wife can have up to

> 13,000 and no more )and as long as you have all the paperwork and a doctor

> who knows your wife and her condition you can apply immediately -

>

> Best

>

> Judy

>

> Judy R. Strauss LMSW PhD

>

> Lead Faculty

> University of Phoenix

>

> Jersey City Campus

> 100 Town Square Place

> |Jersey City, NJ 07310

> Cell-

> Email- Jrstr@...

>

> On Nov 7, 2011, at 10:06 PM, " gary.s.dale@... " <

> gary.s.dale@...> wrote:

>

> > Anyone ,how long does this disease run its course? is it different for a

> 59 year old vs. a 79 year old? i have read 2-7, 3-8, 5-8, 2-20 ( not

> helpful). asked the primary the other day. he doesn't seem to have a clue.

> financially, it makes a difference because too soon in a NH and you are out

> 70-$100,000/year. can you spell B-A-N-K-R-U-P-T ? if you know for sure 2

> more years, you can plan better for either home care, 24-7, some combo of

> home care or a facility. and a dr. has to approve hospice so it matters

> what he thinks, etc. does Medicare pay for home care? all i know is i am

> wearing out after 2 + years ( with care aide for 8 hrs /week). I may be a

> wreck in two more years of this. thanks, gary

> >

>

November 8, 2011

I ahve been caring for my wife , (84 yrs old) for 8 and a half years for her

LBD, is imobile and is now starting to have trouble eating. Has cost me $1000 a

week for years for caregiving plus meds , etc. House is in reverse mortgage,

etc. Her vitals are good but who knows what the future holds. This disease has

its own agenda. after 57 yrs of marriage cant give up.