Re: What Stage/ How Long ?

[Guest guest]

thanks Jeff and everyone.  i will check out that web link you posted ,Jeff.

thanks. i didn't really expect anyone to really know the LBD length, etc. it

will be different for each of us, but we are all in the same boat- helps to know

people are rowing with me.  i will hang on.   gary  (wife  Kay, probable

LBD)

Subject: Re: What Stage/ How Long ?

To: " LBDcaregivers " <LBDcaregivers >

Date: Monday, April 16, 2012, 4:46 AM

 

,

I cannot add anything more than the wisdom others have posted. My feeling is

that since Lewy was only identified as a separate dementia in 1996, we don't

have the history. In addition, it is very difficult to secure an accurate DX of

Lewy, while mixed dementias involving Lewy components can often confound the

picture.

Having said that you might find the following link from Columbia University

Medical Center of value. I recently plugged in my estimates based upon my

observations and knowledge of Kathy's progression prior too and since her LewyDX

to generate a primitive prediction of sorts. Last week she had a routine follow

up with her geriatrician who specializes in dementias and he agreed the results

were consistent to what he has observed in his practice.

http://www.cumc.columbia.edu/dept/sergievsky/predictor.html

 

I can't remember where I saw this link to give proper credit. Some thoughful

person posted it on one of the various sites I follow.

Very best of luck to you.

Jeff 

When you feel like giving up, remember why you held on for so long in the first

place. " ~ Unknown

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>To: LBDcaregivers

>Sent: Sunday, April 15, 2012 2:49 PM

>Subject: What Stage/ How Long ?

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>anyone want to venture a guess as to how much longer, or what's next with my

wife (Kay, age 60 in june) ? perhaps you more experienced caregivers or those

that have already lost your loved ones? here is the history. from 2008-2010 kay

seemed fine with II diabetes and FMS. was walking , driving, working, etc. at

work (teacher assist) she started having memory problems, couldn't find

materials, talked to herself. she quit her job in 2008 when summer came. also

she came to pick me up at a golf course and ended up driving our very small car

onto the golf cart road where they escorted her w/ car to clubhouse. still

seemed like something that was just an accident and funny, at the time. 2010. 1)

exhibited delusion and major depression- in 4 hospitals till they convinced me

ECT was harmless and was only thing now to stop depression and delusion- she

wasn't the same since.2.) now in wheelchair 3.)wears diapers but i set timer to

avoid more work

4.)watches tv most the day- i take her outside to sit in sun or go to drs. and

lab 5.) delusions/ depression/ and sleep are under control with meds 6.)legs

getting weaker, can't walk but i can stand her up on legs for transfers to

potty, wheelchair, etc. 7.)losing ability to use fork and spoon, forget a knife-

i'm having to feed her myself more now 8.) starting to wave at herself in mirror

every now and then. says she knows it's her but i don't think so.9.) i ask her

name and she will say " what's your name? " hard to get her to say her own name.

10.) looked at a picture of our family and only could name me, not herself or

two daughters. 11.) she called me Peanut once, that is our dog. 12.)she does

smile and laugh a lot and likes music, cards, and pictures and sleeps well, and

enjoys the sun outside. she even said hello once to people walking by. 13.)

gaining weight from 160-170 to 190 lbs ,5' 9 " - appetite fine 14.) FMS symptoms

have seemed to

disappear. i have asked the various doctors: primary, neurologist, psychiatrist-

but they don't like to set dates. i finally got her treating doctor to tell me

he thinks Kay's case may run 8 years from start to finish. you new people can

use my info. as a guideline to how things have gone downhill for us in 4 years.

every case is different. God Bless You All..... (husband, 60 )

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