Re: Okay. I give up/.

[Guest guest]

Hi ,

I am speaking from my own experience, before I ever heard of Lewy Body. In 2000

my husband Jim started with hallucinations before the dementia part showed up.

He did have the Parkinsonism, but life was pretty much normal, he did fall from

time to time, but he was walking on his own and able to get around. My husband's

family lives in Connecticut, we live in California. We left on a normal day,

everything seemed fine on a trip to Connecticut to visit family in 2000, in fact

Jim packed all his things himself. The evening we arrived in Connecticut my

husband started doing strange things. The family was playing a card game and

when the game was over, Jim was dealing cards, but he had no cards in his hands

and no one was left sitting at the table, but he was dealing cards out. By the

time we left for what seemed like the longest flight home, he was a mess and

when we arrived at our home airport and took a shuttle home, Jim thought he saw

bugs on the man's

shirt sitting in front of him and started picking at the man's shirt and

slapping the bugs off. The man got annoyed with Jim and shouted at him. We came

to a stop in traffic and Jim thought he was home and opened the shuttle door to

step out in traffic and I pulled him back and he started hitting me with his

cane saying we were home and to let him go. If looks could kill, the driver of

the shuttle turned around and said we were both off, if this kept up. I had NO

clue what was going on with Jim. When we left our house for our trip to

Connecticut everything seemed normal as usual. I got Jim to sit back down in

the shuttle and he started sucking on the end of his cane like he was drinking

out of a bottle. We could not get home fast enough in my thoughts and we were

the last stop of all the people on the shuttle. Jim was scaring the people and

he was scaring me! Jim was still driving at that time, so when we got home,

he drove off and hallucinated he

saw a bad accident at a major intersection and stopped the car in all the

traffic and got out to see why all the people were standing around. There were

NO people! He was walking down the center of a major intersection of cars all

going by him. I was not with him, there was a crew of road construction workers

that saw him and one man approached Jim and got him back into his car and

followed him home to tell me what happened. I reported it to Jim's neurologist

and Jim's driver's license was revoked and that is another nightmarish story

about stopping Jim from driving that I won't go into. It's a whole other story.

Jim was not dx with LBD until 2003. Most doctor's had never heard of LBD at that

time, it's getting a little better than it was then for a dx (diagnosis). So, I

am saying all things can seem normal and then (((BAM))) the hallucinations come.

For Jim dementia followed soon after, about 6 months later he was placing

things in strange places

and tearing up all our mail/bills and throwing it out. Making huge mistakes on

his bookkeeping and many, many other things. He did have what was called here,

in the group,   " Show Time " I haven't been here in the group for awhile, so I

haven't seen if it is still called by that name, but he would be so confused at

home and then family or friends would come to visit or his brother would call

from Connecticut and Jim could pull it all together and sound perfectly normal

in speaking with everyone, when only moments ago with me, he was very confused.

It was very frustrating, because family who did not see him on a daily

basis did not believe me when I said Jim had dementia and was confused. I had

no family support.

Like mentioned, see if there is an LBD knowledgable doctor in your area

in the group links and get your mother dx. for your own sanity, because not

knowing what is happening will be very frustrating. Your mentioning that the

doctors say your mom does not have Parkinsons, so it's not Lewy Body, tells me

they are not knowledgable about Lewy Body, because DLB is without Parkinson

symptoms for some and that is Lewy Body.

Good Luck in getting answers, because it helps so much to get them on the proper

medications.

Jan Colello

husband, Jim, dx w/LBD 2003

________________________________

To: LBDcaregivers

Sent: Tue, May 11, 2010 9:35:30 PM

Subject: Okay. I give up.

 

My mother has been hallucinating since the night February 4th. After visiting

four doctors, no one knows what is wrong with her. No one thinks she has Lewy

body dementia because she doesn't have Parkinson's disease and her memory is

normal for a person her age. She may forget something but will remember it

eventually. She has visual hallucinations. She believes they are real. She is

creating wild stories about them. But I guess this is all normal behavior for

someone her age according to doctors. She only has hallucinations in the house.

She is begining to hear a slight murmur in the mornings. She is probably causing

the murmur. So, I give up. What is wrong with my mother?