Re: (unknown)/ June

[Guest guest]

Hi June,

When Jim was living at home, there was a period of

time when he saw horses running through the living

room, but they didn't seem to bother him. He would

point at them and tell me there's horses running

through the house. I had never heard anyone else

mention horses before. I hear about cats, dogs, people

, bugs, but when I wrote to the group about Jim seeing

horses, a few people wrote to me that their LO had

seen horses too. Now, cows is a new one that I have

not heard of before.

Many years ago, when Jim was in good health, long

before I knew him, he decided he wanted to donate his

body to science and is donating his body to the

University of California San Francisco, a school of

medicine. He is going to be a cadaver. I guess it is

the teacher in him that he wants to help others to

learn. I recently called UCSF to inquire if they

would still want his remains, since he has LBD. The

only kind of remains they won't accept is, if the

person had a communicable disease, Aides, Hep C, and

things like that. He can not donate any organs upon

death, since they want the entire body. I am now

wondering if an autopsy could be done on Jim, because

of this. Maybe after the use of the remains. He will

be at UCSF, so I would think that they could perform

an autopsy there. You have raised a question in my

mind about this. I will have to give them a call

again.

I recently attempted to get Jim into a study program

at UCSF, but Jim did not qualify for what they were

studying at this time.

Jan

--- June Christensen

wrote:

> Just a note about my husband: His hallucinations

> are

> also animals and people, and he seems not to be

> alarmed at any of them, rather acceptance as far as

> I

> can see. I don't think he knows they are

> hallucinations, as seeing animals and children is

> normal, but when he told me he saw a cat that looked

> cold and mentioned horses and cows in the family

> room,

> I became quite alarmed.

>

> As for as genetic/inherited possibilities:

> Alzheimer's is considered to be more likely to be

> inherited than LBD according to the LBDA

> organization.

> In my husband's family of thirteen children, two

> infants died of Down's syndrome; one brother had

> Down's syndrome but lived to his 50s. I wonder if

> he

> may have had AD or LBD, as he was always

> good-natured

> and loved children early on, but later he seemed to

> get mean and the family didn't let him be alone with

> the children as they appeared to irritate him.

> Another brother had epilepsy and died at the age of

> 21

> from pneumonia. Two brothers and two sisters had

> dementia - all are deceased - two have brain tissue

> at

> the University of Indiana for research (we are in a

> family study with about 25 family members

> contributing

> DNA). Both sisters were definitely dx'd with AD,

> one

> brother pretty sure AD, and the other brother

> possible

> vascular dementia, but no autopsy was performed.

> His

> father and mother married brother and sister, and

> five

> of their family members were dx'd with AD; all are

> deceased, and none had auopsies that I know of.

> Strong family inheritability that one of the family

> members doing genealogy believes is coming through

> the

> mothers' side of the family. My husband was

> originally dx'd with AD, but after reading material

> about LBD after he had been in a rehab hospital for

> a

> broken shoulder and they gave him neuroleptic drugs,

> I

> believe it is at least partial LBD due to his

> adverse

> reaction to all or most of those drugs. He also

> developed Parkinsonism during this time and that's

> when I figured out he might be having

> hallucinations.

> Has had a very rapid decline since March 2005, and I

> placed him in NH in February 2006 where he is still

> rapidly declining. Day-to-day changes; yesterday

> fairly good but not good today nor for several days

> before that. Have Hospice coming in, although he is

> not at " end " stage that we know of, but they

> evaluated

> him and determined he was eligible. They have

> provided an air mattress, gel pak for chair, and

> tonight delivered a gerry chair, which surprised me.

>

> I think he will be more comfortable in it. Has

> developed sore on left buttock, which they say is

> improving.

>

> Information on the LBDA.org site is very helpful if

> you haven't been there. LBD has, only in the last

> year or so, begun to be recognized as second to AD

> for dementia patients. I believe Pick's disease is

> third. (Interesting to note that 17 percent of

> Pick's

> disease sufferers are of Scandinavian descent - my

> husband is half-Dane and half-Swede as well as the

> other nine family members.) However, his symptoms

> do

> not fall into that category as much as LBD and/or

> AD.

> As mentioned before, he is in a family study at U of

> Indiana; Mayo's has a program. Both will do brain

> autopsies free of charge; however, I believe you

> have

> to pay for mortician to transport brain (or ship) to

> the institutions. UofI will check for every kind of

> brain disease before releasing results. Results of

> their research (except autopsy reports) will not be

> shared with family members and will serve only to

> determine what causes and possible preventives or

> cures that can be developed. I would urge EVERYONE

> to

> consider donating the brain tissue to some medical

> research facility for that purpose. It can be very

> important for family members. I have 4 children, 13

> grandchildren, and 10 great-grandchildren (with

> probably many more to come), and I want them to know

> as much as be prepared as much as possible to

> prevent

> or fight this horrible disease.

>

> Also of interest - a medicine study that he was in

> at

> with a doctor in Raleigh, NC, who teaches and UNC

> and

> Duke (I think) is also researching the incidence of

> ADHD, ADD, and other brain disorders of children

> with

> the development of AD and other dementias. Several

> of

> our grandsons have some form of ADHD, ADD, AAD,

> bipolar disorder. So, I hope I live long enough to

> see what these research endeavors tell us.

>

> Will be interested to know your reactions and if you

> are doing any studies with your FIL. Hope this

> isn't

> too long or boring to you.

>

>

>

> --- lm_bagham wrote:

>

> > Hello all,

> >

> > My 89YO father-in-law (FIL) was recently dx'd with

> > diffuse LBD but has

> > been symptomatic for months/years. Additional

> > unrelated(?) health

> > issues include hereditary hemochromatosis, type II

> > diabetes, and now

> > possibly myelodysplastic (anemia) syndrome. His

> son

> > (my husband) has

> > another myeloproliferative leukemic disorder

> (CML).

> >

> > Interested in hearing your experiences as regards:

>

> > 1. Whether anti-Parkinson's drugs worsen the

> > dementia

> > 2. Whether the nature and subject matter of

> > hallucinations change (My

> > FIL's hallucinations have been largely pleasant

> and,

> > as is apparently

> > typical, involve animals and people.)

> > 3. Incidence/Coincidence of other diseases

> > (particularly myeloprolif

> > disorders) in addition to LBD.

> > 4. Any anecdotal/clinical evidence of heritability

> > of LBD and other

> > associated disease.

> > 5. Any clinical trials or research opportunities

> > that could benefit

> > those yet to travel this path.

> >

> > We are scientists/medical types and are, on the

> > whole, pretty well

> > fascinated by this journey.

> >

> >

> >

> >

> >

> >

> >

> >

>

>

> __________________________________________________

>