Re: : introduction from new member susan

[Guest guest]

Hi ,

I'm sorry to hear about your sister. Your family has been through a lot already.

Your story about how sudden all this came on for your sister hit home with me.

Although, my husband had been showing signs of forgetfulness earlier, the

hallucinations came on suddenly.

We both lived in California, I still do, and would visit my husband's brother

and his wife every other year in Connecticut. It was a normal day when we got up

and got ready to leave for the airport, everything seemed fine. When we arrived

in Connecticut my Sister-In-Law... SIL  had a big dinner with all the family at

her house.

The first act of confusion showed up at the dinner table for my husband when he

took his glass of soda and poured it into the serving dish of Spaghetti that

everyone at the table served out of.

I was shocked! The second confusion came that night when we all played cards and

after the game was over and everyone at the table got up, my husband was still

sitting there hallucinating that he had cards in his hands and was dealing them

out across the table.

These were all " Red Flags " to me, but the family thought he just had jet lag and

was tired.

When we arrived home from Connecticut at our airport, we got on a shuttle to

take us home. There were a few other people on it and my husband was picking on

the back of the guy's shirt sitting in front of him, because  he saw bugs on

that guys shirt. The man was annoyed and turned around and gave my husband a

look that could kill. When we came to a stop, because we were in commute traffic

on the freeway, my husband thought we were home and slid open the shuttle door

to step off. I grabbed him by the seat of the pants and pulled him in. He was

sitting near the door. He had a cane at that time and started whacking me with

the cane, saying we were home and to let him go! The driver of the shuttle

turned around and told us to knock it off and that he would kick us both off of

the shuttle if we kept this up. I had no clue what was happening. I felt I had

to make some kind of comment to the people, they probably thought we were on

drugs. My husband at that time had been diagnosed with Parkinson's, but it

hadn't seemed to effect him in too many ways except for his falling a lot. I

told everyone he has Parkinson's, I didn't know what else to say. My husband sat

back down and began to suck on the curved end of the cane like it was a coke

bottle. Of course, we were the last ones to be dropped off at our house, because

we lived the furthest away from all the other people on the shuttle. I was never

so glad to be home. It was three years later that my husband was diagnosed with

Lewy Body.

But yes, the hallucinating came on very fast! One day was normal and that night

Lewy reared it's Ugly Head and after that day it never stopped, until Seroquel

was prescribed and then it calmed down considerably.

My husband died the end of last January and is now at peace from this dreadful

disease.

Jan Colello

San Francisco Bay Area, California

Husband, Jim, dx w/LBD Oct. 2003

Deceased January 22, 2011

________________________________

 

hello everyone,

I joined several days ago but have not felt well so im slow saying hi.

im age 68 and have multiple sclerosis. so i get under the weather alot.

my sister who is seven years older was recently diagnosed with dementia , lewy

bodies type .

she became psychotic several weeks ago after telling me she had been seeing

people in her home at night though fully awake. she seemed undisturbed about

this until about a month ago when she became suddenly fearful and totally out of

it. the police and 911 were called by her and they took her to the hospital. at

that time she had been having memory problems but was ok walking by herself,

driving and no incontinence but only days after her admission she was wheelchair

bound , unable to hardly walk and experiencing incontinence. i can see the

mental stuff coming on this suddenly but physical symptoms coming on this

dramatically over just a few days seems very hard to believe yet the nursing

memory care unit shes now in say its typical of lewy bodies.

i would be glad to have any members here address this if they can and also since

my mom died of regular alzheimers in her late 80s how much likely will it be i

get this too?

any information is welcome. im sure i will ask more questions as i go along.

i wondered if lewy bodies is genetic? i do not know any persons in my family who

had this. sincerely susan

[Guest guest]

to answer the physical sudden changes, was different for my husband. It

came on suddenly, but not all at one time as with your sister. I put him in a

nursing home about three years later from the start of all that confusion on our

Connecticut trip. He was walking with a walker at the time he went into the

nursing home, but about 3 months later was in a wheelchair and not able to

walk.

I wonder if being in a facility binds them from using their legs often and they

lose the ability to walk. While living at  home right after our trip to

Connecticut and three years before entering the nursing home, he did not

recognize a toilet anymore and began to urinate on the floor. He began to be

incontinent. He was still driving, but hallucinated on the road and then my

battle came to get  him off the road. All this happened right after our trip to

Connecticut and seemed to come on suddenly.

It is not known at this time if LBD is genetic, there are some that do

experience this disease going through their family and others that do not.

Your mom may have had LBD and not Alzheimers, as some have been misdiagnosed

with Alzheimers. She could have also had a combination of LBD/Alzheimers as that

is possible and maybe she showed more Alzheimer symptoms than LBD. If you go

to:         http://www.lbda.org and look at the LBD spectrum, it shows a

combination of LBD/Alzheimers does exist.

It is known if a person displays REMD- Rapid Eye Movement Disorder, that LBD is

a likely diagnosis to follow at some point in life. REMD is like having a bad

nightmare. People flail their arms and legs about and talk and sometimes scream

or laugh during the sleeping episode. This can be since childhood. It is a sign

that there are neurological problems to follow. My husband had REMD.

There is some kind of talk that ADD...Attention Deficit Disorder can lead to LBD

possibly. There has also been talk that pesticides and environmental toxicity

can lead to LBD. They are still in the stages of experimenting to find out the

cause/causes of LBD.

I have heard, but it is only something I have read somewhere and don't remember

where, but I have heard that MS, Parkinsons and Alzheimers all have something in

common neurologically and if there is a cure for one, they will all be cured. So

maybe the neurological part runs in your family.

I happen to think that Anesthesia played a part in my husband's LBD. He already

had REMD and maybe the anesthesia during back surgery triggered the LBD. He had

no symptoms of Parkinson's or LBD until after back surgery and then he had more

problems than just his back. His back was cured, but the LBD came on soon after

the back surgery.

Jan Colello

San Francisco Bay Area, California

Husband, Jim, dx w/LBD Oct. 2003

Deceased, January 22, 2011

________________________________

 

Hi ,

I'm sorry to hear about your sister. Your family has been through a lot already.

Your story about how sudden all this came on for your sister hit home with me.

Although, my husband had been showing signs of forgetfulness earlier, the

hallucinations came on suddenly.

We both lived in California, I still do, and would visit my husband's brother

and his wife every other year in Connecticut. It was a normal day when we got up

and got ready to leave for the airport, everything seemed fine. When we arrived

in Connecticut my Sister-In-Law... SIL  had a big dinner with all the family at

her house.

The first act of confusion showed up at the dinner table for my husband when he

took his glass of soda and poured it into the serving dish of Spaghetti that

everyone at the table served out of.

I was shocked! The second confusion came that night when we all played cards and

after the game was over and everyone at the table got up, my husband was still

sitting there hallucinating that he had cards in his hands and was dealing them

out across the table.

These were all " Red Flags " to me, but the family thought he just had jet lag and

was tired.

When we arrived home from Connecticut at our airport, we got on a shuttle to

take us home. There were a few other people on it and my husband was picking on

the back of the guy's shirt sitting in front of him, because  he saw bugs on

that guys shirt. The man was annoyed and turned around and gave my husband a

look that could kill. When we came to a stop, because we were in commute traffic

on the freeway, my husband thought we were home and slid open the shuttle door

to step off. I grabbed him by the seat of the pants and pulled him in. He was

sitting near the door. He had a cane at that time and started whacking me with

the cane, saying we were home and to let him go! The driver of the shuttle

turned around and told us to knock it off and that he would kick us both off of

the shuttle if we kept this up. I had no clue what was happening. I felt I had

to make some kind of comment to the people, they probably thought we were on

drugs. My husband at that time had been diagnosed with Parkinson's, but it

hadn't seemed to effect him in too many ways except for his falling a lot. I

told everyone he has Parkinson's, I didn't know what else to say. My husband sat

back down and began to suck on the curved end of the cane like it was a coke

bottle. Of course, we were the last ones to be dropped off at our house, because

we lived the furthest away from all the other people on the shuttle. I was never

so glad to be home. It was three years later that my husband was diagnosed with

Lewy Body.

But yes, the hallucinating came on very fast! One day was normal and that night

Lewy reared it's Ugly Head and after that day it never stopped, until Seroquel

was prescribed and then it calmed down considerably.

My husband died the end of last January and is now at peace from this dreadful

disease.

Jan Colello

San Francisco Bay Area, California

Husband, Jim, dx w/LBD Oct. 2003

Deceased January 22, 2011

________________________________

 

hello everyone,

I joined several days ago but have not felt well so im slow saying hi.

im age 68 and have multiple sclerosis. so i get under the weather alot.

my sister who is seven years older was recently diagnosed with dementia , lewy

bodies type .

she became psychotic several weeks ago after telling me she had been seeing

people in her home at night though fully awake. she seemed undisturbed about

this until about a month ago when she became suddenly fearful and totally out of

it. the police and 911 were called by her and they took her to the hospital. at

that time she had been having memory problems but was ok walking by herself,

driving and no incontinence but only days after her admission she was wheelchair

bound , unable to hardly walk and experiencing incontinence. i can see the

mental stuff coming on this suddenly but physical symptoms coming on this

dramatically over just a few days seems very hard to believe yet the nursing

memory care unit shes now in say its typical of lewy bodies.

i would be glad to have any members here address this if they can and also since

my mom died of regular alzheimers in her late 80s how much likely will it be i

get this too?

any information is welcome. im sure i will ask more questions as i go along.

i wondered if lewy bodies is genetic? i do not know any persons in my family who

had this. sincerely susan