Re: Re: Please explain

[Guest guest]

Terri

My dad will be 65 in July. He was diagnosed with Diffuse Lewy Body

around the middle of 1997-about 4 1/2 yrs ago. My brother and I had

seen signs before then, but as I stated in my earlier posting that my

dad is more stubborn than the mule. He had a mild heart attack when

ended him up in the hospital. While in there, and seeming even more

confused than when at home, my brother and I consulted a neurologist to

come and check him out. That all lasted a year or so of many dr appts.

and trips to Iowa City until the neuro. came up with the diagnoses of

Diffuse Lewy Body. For safety reasons we moved him to a nursing home

that totally was not equipped nor educated in dealing with this disease

and my dad became very ill. He was so very dehydrated and

malnutritioned and had asperated food and liquids into his lungs which

gave him pneumonia. He then couldn't swallow any more and ended up with

a feeding tube. The tube seemed to really agitate him, yet he also knew

it was nutrition so he would take the tube and pull the extension from

his belly, swinging the tube with nutrition around and around. Well,

from that nursing home he was admitted several times to a geriatric

psych ward...and we ended up having him put in an Alzheimers Unit in

another nursing home. He seemed to taper off for a while and has again,

just progressed with his anger, agitation, gait, rigitity,

hallucinations, and mood swings. He has been in a nursing home since

Sept. of 1999. His changes have stayed, so I am inclined to think it is

more than the fluctuating of the disease. Thanks so much for your

concerns. Also, my brother has had a hard time accepting this, and

doesn't have a lot of time in his day to deal...he is very busy with his

family. I have over the passed 5 yrs become power of attorney, and

representative payee, have 3 boys and a husband, take care of all of

dads medical and financial issues and work 20-25 hrs at UPS. Sometimes

life can seem overwhelming. Hope I havn't babbled on too much.

Sandie

[Guest guest]

In a message dated 2/1/02 2:35:24 PM Central Standard Time, tcsmail@...

writes:

> Her hallucinations have been present and unyielding since day one. ly,

> these are now a minor concern for me, as the sleeplessness and

> combativeness are such serious issues.

Terri, do you think maybe the combatitiveness and sleeplessness might be the

result of the hallucinations? Cheryl

[Guest guest]

> Her hallucinations have been present and unyielding since day one. ly,

> these are now a minor concern for me, as the sleeplessness and

> combativeness are such serious issues.

Terri, do you think maybe the combatitiveness and sleeplessness might be the

result of the hallucinations? Cheryl

I wondered the same. Also, I wondered....even though you seem to have good

doctors...

whether there might not be a possibility that the meds are causing the

combatitiveness

and sleeplessness? Mai-Liis

[Guest guest]

Lula

You have been so kind and so helpful. It is encouraging to hear the

stories of how LBD patients are/were on Ativan. I have been having a

really hard time with this, and each response has helped tremendously.

Thank you and good luck to you. Please keep posting as I am interested

in how you and your husband are doing.

Sandie

Des Moines, IA

[Guest guest]

the LBD crystalizations may be occuring in the

portion of the brain controlling emotions...causing

loss of emotional control and mood swings from hostile to

happy and every other " mood " description...This

can be rather vitrolic on the care giver!

I swear, our patient didn't need sleep. I timed her

one weekend. She moved every 8-12 minutes

for 4 days running. I thought we could wear her down.

Fail.... :< We complained to the GP about this once,

before we knew about LBD, and he said don't worry about it;

" No one ever died from lack of sleep! " . He wasn't

thinking about the CG that had to attempt to keep

up with the LO with LBD. Lack of sleep does

kill if you have to work or drive. Our family called

this " perpetual motion mode " . I think this is just one

more common symptom of the disease coursing

through the brain stem & lobes. Medications seemed

to help once we found out it was LBD. Seeing all

this commonality just confirms the diagnosis. Anyone

from this group can probably identify LBD patients better

than anyone in the medical community! You troopers

out there hang tough, no one in the world is as tough

as you care givers. This is experience from one whose

attempted to fill your shoes, and not very well, I might

add...God bless.

Pat

Mai-Liis wrote:

> > Her hallucinations have been present and unyielding since day one.

ly,

> > these are now a minor concern for me, as the sleeplessness and

> > combativeness are such serious issues.

>

> Terri, do you think maybe the combatitiveness and sleeplessness might be the

> result of the hallucinations? Cheryl

>

> I wondered the same. Also, I wondered....even though you seem to have good

doctors...

> whether there might not be a possibility that the meds are causing the

combatitiveness

> and sleeplessness? Mai-Liis

>

>

[Guest guest]

In a message dated 2/2/02 12:13:54 AM Central Standard Time,

psaunders@... writes:

> Our family called this " perpetual motion mode

When my husband is like that I call him " the perpetual motion machine. " I

remember a night that he came up to visit me while I was working out of state

and I swear that the longest he lay still all night was 7seconds. I was

timing it, too, and after two nights I was a basket case! He was tired but

OK. That was 1.5 yr prior to diagnosis. He still goes through phases like

that, but by 8AM usually sleeps soundly for 3-5 hrs.

He asked me yesterday how long he has had this disease - I count 9 yrs for

sure . . .

Cheryl

[Guest guest]

In a message dated 2/2/02 8:19:56 AM Central Standard Time, tcsmail@...

writes:

> The ironic thing here is that prior to becoming ill, Mom was the slowest

> person I'd ever met.

This is interesting, Terri. Early in our relationship and prior to becoming

ill, my husband also seemed to be very slow. Not physically so much, but

decision-making (ah, those executive functions) and taking action. Then when

he DID everything fell into place without a leaf so much as rustling.

Personality or disease? I don't know.

Cheryl

[Guest guest]

<< do you think maybe the combatitiveness and sleeplessness

might be the

> result of the hallucinations? Cheryl

> >>

Dear Terri

My husband has " talking " hallucinations when he is supposed to be

sleeping. Most of the time his eyes are wide open. He is so exhausted the

next day that he can sleep for

20 hours. This has happened every week for one day, but now it seems to be

happening more often. He is not combatitive, just sleepy after a night of

this talking.

gloria

[Guest guest]

Terri

I have noticed that even though our LO's have such different reactions

to meds., and some of the characteristics are different.....wow they are

so very similar. I too am glad I have found this group and I owe my

thanks to the Alzheimers Association for hooking me up with one of the

members in here. She lives not far from me and she has been as

wonderful as the rest of the people in here. I understand the feeling

of nothing working concerning the meds. It seems that something would

touch some part of this disease, yet I have found at times the meds. do

absolutely nothing. Best of luck to you and your mom, God Bless you and

the love you show!

Sandie

Des Moines, IA

[Guest guest]

Hi Mai-Liis - First, did you ever look into Jack s?!!! That

was you, yes? Ruby is doing great.

Unless you are willing to give me Ruby, I will pass. We may get a

Corgi.....but first, we have to get through this ordeal of moving.

By the way....there may be no other Rubys....All I hear are horror

stories.

[Guest guest]

On the other hand, my mom has always seemed jet-propelled. In high school

my friends used to ask me if she was on speed. Now she's slow, sleepy and

child - like, even before the brokeh hip, femur and 3 bouts of pneumonia.

Of course, she is 85, older than many here. Hez

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[Guest guest]

In a message dated 2/3/02 3:07:55 PM Central Standard Time, tcsmail@...

writes:

> Are you going to Dr Reich? Seems like I remember you mentioning this... If

> so, I don't think you'll be disappointed.

Good news, Terri. Thanks. Yes, I intend to make an appointment with him.

Does he manage the overall LBD case, too, or only the movement disorder?

Otherwise, we have to start with another neurologist as well, and I have no

idea who. Any suggestions?

Cheryl

[Guest guest]

Sorry, greatfully (for me) no help from here. Cheryl

[Guest guest]

Hey group-

I have a question concerning hallucinations and agitation. Has anyone

noticed their LO being more agitated or having more hallucinations at

particular times of the day? My dad REALLY has been struggling with

mornings. He DOES NOT want to get out of bed, DOES NOT want to take

meds., and DOES NOT want to eat or change his clothes. He has been

hitting walls, growling, and just completely combative and agitated.

Knowing him well, I can mostly see him looking through me, thinking

these are hallucinations and not geared toward anyone in the real world.

By afternoons, or even late mornings, he has calmed down, and is much

more pleasant. Please reply anyone.

Sandie

Des Moines, IA

[Guest guest]

Hi, Sandie.

Our neurologist had advised us that confusion and disorientation often occur

upon awakening and sometimes the patient needs a while to realize that

whatever dreams he might have been having are over. I hope this is helpful.

Best of luck.

Bertha

[Guest guest]

In a message dated 2/3/02 9:37:20 PM Central Standard Time, Mandelbh@...

writes:

> confusion and disorientation often occur upon awakening

True here during the middle of the night, Bertha. He dreams about things

that have been big on the news, or things going in our lives or lives of

family members. Once he has really " finished " sleeping, though, about noon,

he is as clear as a bell on most days. But, oh those nights and now early

mornings, too. Cheryl

[Guest guest]

sundown & very early morning were always terrible.

sanclown@... wrote:

> Hey group-

> I have a question concerning hallucinations and agitation. Has anyone

> noticed their LO being more agitated or having more hallucinations at

> particular times of the day? My dad REALLY has been struggling with

> mornings. He DOES NOT want to get out of bed, DOES NOT want to take

> meds., and DOES NOT want to eat or change his clothes. He has been

> hitting walls, growling, and just completely combative and agitated.

> Knowing him well, I can mostly see him looking through me, thinking

> these are hallucinations and not geared toward anyone in the real world.

> By afternoons, or even late mornings, he has calmed down, and is much

> more pleasant. Please reply anyone.

> Sandie

> Des Moines, IA

>

>

[Guest guest]

Thank you for your reply concerning the hallucinations. My dad seemed

to have leveled off for a while but the past 2 weeks or so have been

horrible for him. He has been taking Lorazepam (Ativan) and I told the

dr. Friday that dad would be taken off it. The dr. started weaning dad

off it for the evening dose. I really appreciate your response.

Sandie

[Guest guest]

Cheryl, Thanks for sharing about your LO sleeping/etc. I am sorry about his

and your restless nights. Enjoy those afternoons!

Bertha

[Guest guest]

Terri. thank you SO MUCH for this input. Will definitely pursue. Maybe even

get to meet you while up there. Cheryl

[Guest guest]

Sandie, Glad my comments might have helped.

Another thought: my husband has been combative on rare occasions when he has

lost the ability to express himself. When he cannot talk or make gestures to

convey his thoughts he becomes very frustrated.

You have been doing a wonderful job. I hope you are taking care of yourself,

your husband and children.

Bertha

[Guest guest]

Anyone heard of Effexor for LBD depression?

Mandelbh@... wrote:

> Cheryl, Thanks for sharing about your LO sleeping/etc. I am sorry about his

> and your restless nights. Enjoy those afternoons!

>

> Bertha

>

>

[Guest guest]

Well I read up on schitzophrenia and if you look at the narrow symptoms of

the disease every LBD patient could be said to have Schitzophrenia it is the

further symptoms of LBD that differentiates this illness. So it is easy to

see why the medical profession chooses to use that illness as a copout.

After all they know about Schitzophrenia and they don't know about LBD.

Makes me so angry. I have a question. My mom is on Resperidal and an

anti-depressant Remeron. I know that Resperidol is one of the good ones but

I don't know about Remeron as to how it affects LBD patients and if it would

be better to have her on something like Paxil. Any suggestions or

information would be greatly appreciated.

Re: Re: Please explain

>

>

> In a message dated 2/2/02 8:19:56 AM Central Standard Time,

> tcsmail@d...

> writes:

>

>

> > The ironic thing here is that prior to becoming ill, Mom was the

slowest

> > person I'd ever met.

>

> This is interesting, Terri. Early in our relationship and prior to

becoming

>

> ill, my husband also seemed to be very slow. Not physically so

much, but

> decision-making (ah, those executive functions) and taking action.

Then

> when

> he DID everything fell into place without a leaf so much as

rustling.

> Personality or disease? I don't know.

>

> Cheryl

>

>

>

[Guest guest]

In a message dated 2/11/02 10:02:59 AM Central Standard Time,

cevon@... writes:

> We hope to get her connected with a doctor at our psychiatric hospital that

> is studying LBD. It is so frustraiting dealing with people that stick

> their heads in the sand when it comes to little known illnesses.

Carol, I really hope you DO connect with someone who knows something about

LBD. It mimics so many things, and I can understand why someone who is not

thorogh in their assessment or truly knowledgeable would label her

schizophrenic. Insurance companies love those labels, so it is very, very

important that they be accurate.

Please keep us posted and let us know if you need more help. Cheryl

[Guest guest]

If my mom hadn't been so old at the time, they would have considered

schizophrenia. It usually onsets at an early age though - teens to

twenties. My aunt had something like that.

Anyway, my mom had had annual falls, no Parkinson's, a bit of memory stuff

and a little word substitution when she first started having auditory

hallucinations 2 years ago at the age of 83. She'd always been extremely

sharp and active before then although not very outgoing. she had gotten out

of the habit of socializing outside of the family when my dad became ill and

died about 20 years ago. We're a shy family. Psychosis was her first major

symptom. the other cognitive things came later and developed fairly

quickly.

Presently, she had had a stuborn pneumonia which hasn't responded to

antibiotics at all and is going to a palliative placement where she will be

kept comfortable. Hez

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