LBD/husband

[Guest guest]

My name is Dot and we recently found out that my husband has LBD and the little

information I have has been taken from the Internet. I just found out about

your caregivers group and was wondering if anyone could give me additional

information about it.

My husband,who is 70, has been treated for Alzhimers for about 4 years and high

blood pressure for many years. He never got real bad but in the last yeara or

so, he began falling and said his knees/legs were weak. Dr said he was having

low pressure and asked him to wear support hose. It helped a little bit for a

while but then he got much worse, not having the strength to walk.

Jan. 1 we were forced to change his medigap insurance, therefore, had to change

neurologist. New doctor, many tests and several months later, he gave us this

new diagnosis, plus in the meantime, a pacemaker was put in. Aricept, which he

was already taking, was doubled and a new pill was added -- carbidopa/levodopa,

or sinemet. We started with one pill a day, for several days and then moved up

to 2 with instructions " if necessary, 2 or 3 a day. " He was much worse last

week andafter talking to the dr. we have been tapering him off and then back on

just to see if it helped or got any better.

I have the following questions if anyone can answer any of them for me.

1, How fast does this disease usually progress?

2. Is this falling part of it?

3. He claims he has dreams -- always of animals -- but is not bothered during

the day. Can this be halluciation, if always at night and when sleeping?

4. What can I expect next?

The web-site does not have specific information and we won't see the doctor for

a couple of months.

Thanks for any information you can share.

Dot

[Guest guest]

In a message dated 7/31/02 3:55:44 PM Central Daylight Time,

dot23116@... writes:

> new diagnosis, plus in the meantime, a pacemaker was put in. Aricept, which

> he was already taking, was doubled and a new pill was added --

> carbidopa/levodopa, or sinemet. We started with one pill a day, for

> several days and then moved up to 2 with instructions " if necessary, 2 or 3

> a day. " He was much worse last week andafter talking to the dr. we have

> been tapering him off and then back on just to see if it helped or got any

> better.

Hello, Dot, and a warm welcome. But i have to tell you that your post asks a

lot more questions than it answers.

First, Aricept. It takes 3 months to kick in. I THINK you meant that the

increased medication was Sinemet, which I will address in 2). But 10mg of

Aricept CAN be an overdose. When it was really necessary, by husband's dose

was increased from 5mg to 7.5 for a month, and when apparently tolerable,

increased ot two 5mg doses, which has worked quite well for over a year.

As for Sinemet, you don't talk at all about dosage. There are so many . . .

Cheryl

[Guest guest]

In a message dated 7/31/02 3:55:44 PM Central Daylight Time,

dot23116@... writes:

> new diagnosis, plus in the meantime, a pacemaker was put in. Aricept, which

> he was already taking, was doubled and a new pill was added --

> carbidopa/levodopa, or sinemet. We started with one pill a day, for

> several days and then moved up to 2 with instructions " if necessary, 2 or 3

> a day. " He was much worse last week andafter talking to the dr. we have

> been tapering him off and then back on just to see if it helped or got any

> better.

Hello, Dot, and a warm welcome. But i have to tell you that your post asks a

lot more questions than it answers.

First, Aricept. It takes 3 months to kick in. I THINK you meant that the

increased medication was Sinemet, which I will address in 2). But 10mg of

Aricept CAN be an overdose. When it was really necessary, by husband's dose

was increased from 5mg to 7.5 for a month, and when apparently tolerable,

increased ot two 5mg doses, which has worked quite well for over a year.

As for Sinemet, you don't talk at all about dosage. There are so many . . .

Cheryl

[Guest guest]

I think we all had the same questions were our family given the diagnosis of

LBD. I wanted to know how long she would live and how she would die. I have

since determined that this is not able to be answered because each case is so

different yet so much a like. Good luck with the process we have all been

through. I have learned alot reading the message board and seeing what others

are managing with. Keep reading - Colleen

LBD/husband

My name is Dot and we recently found out that my husband has LBD and the little

information I have has been taken from the Internet. I just found out about

your caregivers group and was wondering if anyone could give me additional

information about it.

My husband,who is 70, has been treated for Alzhimers for about 4 years and high

blood pressure for many years. He never got real bad but in the last yeara or

so, he began falling and said his knees/legs were weak. Dr said he was having

low pressure and asked him to wear support hose. It helped a little bit for a

while but then he got much worse, not having the strength to walk.

Jan. 1 we were forced to change his medigap insurance, therefore, had to change

neurologist. New doctor, many tests and several months later, he gave us this

new diagnosis, plus in the meantime, a pacemaker was put in. Aricept, which he

was already taking, was doubled and a new pill was added -- carbidopa/levodopa,

or sinemet. We started with one pill a day, for several days and then moved up

to 2 with instructions " if necessary, 2 or 3 a day. " He was much worse last

week andafter talking to the dr. we have been tapering him off and then back on

just to see if it helped or got any better.

I have the following questions if anyone can answer any of them for me.

1, How fast does this disease usually progress?

2. Is this falling part of it?

3. He claims he has dreams -- always of animals -- but is not bothered during

the day. Can this be halluciation, if always at night and when sleeping?

4. What can I expect next?

The web-site does not have specific information and we won't see the doctor for

a couple of months.

Thanks for any information you can share.

Dot

[Guest guest]

,

Is there a chart of stages for LBD or are you referring to the AD chart of

stages?

Thanks,

[Guest guest]

Dot,

I am sorry to hear about your husband. This disease has various effects,

and each person is different. I can only speak from the experiences I have

had with my MIL (Mother-in-law). I will share that with you, but I urge you

to schedule a meeting with a geriatric psychiatrist who can share more about

this disease and the progression it will take with you. Your husband should

have a good phyc doctor and a good neurologist. They have to work as a team

in order to reach optimum care levels for your husband. Insist upon it. I

personally never leave a doctors office until ALL my questions are answered.

I read everything I can, and between my Sister-in-law and myself, we come up

with all the questions we can. Then I fax those over to the doctor, where

the coordinator (an RN) has the doctor answer them, then they fax it back to

me. Having good doctors with great support staff is so important.

My MIL is only 60 years old. She had " warning " signs early on, about 5 to 7

years ago. She was only diagnosed this year, however, a trip to the

hospital's psychiatric ward last year told us there was something

desperately wrong. She was talking to herself, experiencing delusions, and

hallucinations (people in her home trying to take her socks, calling 911,

saying people were in the house....) and had lost most of her short term

memory. What I really noticed is how much of her personality was taken from

her by the LBD. Her once vibrant, creative outgoing self was becoming

withdrawn. Her fun loving spirit practically depleted. Her once meticulous

and well put together look was vanishing, and most odd was she didn't seem

to care (nails not polished, eye browns not plucked...). The doctors will

tell you that the patient's sensory system is " dulled " , meaning they can't

directly feel the effects of the disease, and that they can not feel what we

see happening to them. They will tell you they feel confused at times, but

that they are generally happy in " their world " . Those phrases I sometimes

think are the only thing that keeps me from just screaming when I observe

certain traits that were inherited from the LBD.

You ask about how fast this disease progresses. My opinion is I think it

advances fast. This disease has many up and down days and weeks. She (like

others) will be doing great for several days. In fact, some days, it will

seem like they don't have the disease. Then out of nowhere, they regress.

They can have bad days for weeks. It is very unpredictable. I have found

that the less stimulation she has, the better. Out of the 4 " stages " of

this disease, my MIL is most likely in the later stage 2. Advanced enough

to where she can no longer remember names of anyone past her immediate

family, but can still recognize them by sight. She can eat and use the

bathroom herself. She walks fine (falling seems to affect the more

advanced). She needs some help showering, dressing, and undressing. She

needs reminders to do certain things. Like when she is eating, sometimes

she will just stand up and walk away before she is done. The staff at her

group home will just tell her to come on back and finish up. She is

generally very cooperative, and easily redirected. She sometimes will pack

her little make up bag and sit by the gate saying she has to get going.

Other times she will just pace the living room while holding a painting she

painted. She talks to herself often and usually is having a conversation

with her husband or sister. Now that she is on a good medication mix

(cocktail), her hallucinations are gone, but the talking to herself and some

occasional delusions still exist.

She is in a very good group home with only 5 patients, so that is very nice.

They do a good job there. We have been very lucky to have such great care

for her. She does not talk much to anyone anymore. She likes to sit in her

room (which is very nice) and listen to the radio or just look at her

pictures. This disease has certainly changed her, but her inner beauty is

still very present. I see it when we have family get-to-gathers and when I

visit with her at the house. Thankfully, the LBD has not robbed her of

that.

I hope this helps. Good luck to you. I wish you the best.

> LBD/husband

>

> My name is Dot and we recently found out that my husband has LBD and the

> little information I have has been taken from the Internet. I just found

> out about your caregivers group and was wondering if anyone could give me

> additional information about it.

>

> My husband,who is 70, has been treated for Alzhimers for about 4 years and

> high blood pressure for many years. He never got real bad but in the last

> yeara or so, he began falling and said his knees/legs were weak. Dr said

> he was having low pressure and asked him to wear support hose. It helped

> a little bit for a while but then he got much worse, not having the

> strength to walk.

>

> Jan. 1 we were forced to change his medigap insurance, therefore, had to

> change neurologist. New doctor, many tests and several months later, he

> gave us this new diagnosis, plus in the meantime, a pacemaker was put in.

> Aricept, which he was already taking, was doubled and a new pill was added

> -- carbidopa/levodopa, or sinemet. We started with one pill a day, for

> several days and then moved up to 2 with instructions " if necessary, 2 or

> 3 a day. " He was much worse last week andafter talking to the dr. we have

> been tapering him off and then back on just to see if it helped or got any

> better.

>

> I have the following questions if anyone can answer any of them for me.

> 1, How fast does this disease usually progress?

> 2. Is this falling part of it?

> 3. He claims he has dreams -- always of animals -- but is not bothered

> during the day. Can this be halluciation, if always at night and when

> sleeping?

> 4. What can I expect next?

>

> The web-site does not have specific information and we won't see the

> doctor for a couple of months.

>

> Thanks for any information you can share.

>

> Dot

>

>

>

[Guest guest]

Dot,

I am sorry to hear about your husband. This disease has various effects,

and each person is different. I can only speak from the experiences I have

had with my MIL (Mother-in-law). I will share that with you, but I urge you

to schedule a meeting with a geriatric psychiatrist who can share more about

this disease and the progression it will take with you. Your husband should

have a good phyc doctor and a good neurologist. They have to work as a team

in order to reach optimum care levels for your husband. Insist upon it. I

personally never leave a doctors office until ALL my questions are answered.

I read everything I can, and between my Sister-in-law and myself, we come up

with all the questions we can. Then I fax those over to the doctor, where

the coordinator (an RN) has the doctor answer them, then they fax it back to

me. Having good doctors with great support staff is so important.

My MIL is only 60 years old. She had " warning " signs early on, about 5 to 7

years ago. She was only diagnosed this year, however, a trip to the

hospital's psychiatric ward last year told us there was something

desperately wrong. She was talking to herself, experiencing delusions, and

hallucinations (people in her home trying to take her socks, calling 911,

saying people were in the house....) and had lost most of her short term

memory. What I really noticed is how much of her personality was taken from

her by the LBD. Her once vibrant, creative outgoing self was becoming

withdrawn. Her fun loving spirit practically depleted. Her once meticulous

and well put together look was vanishing, and most odd was she didn't seem

to care (nails not polished, eye browns not plucked...). The doctors will

tell you that the patient's sensory system is " dulled " , meaning they can't

directly feel the effects of the disease, and that they can not feel what we

see happening to them. They will tell you they feel confused at times, but

that they are generally happy in " their world " . Those phrases I sometimes

think are the only thing that keeps me from just screaming when I observe

certain traits that were inherited from the LBD.

You ask about how fast this disease progresses. My opinion is I think it

advances fast. This disease has many up and down days and weeks. She (like

others) will be doing great for several days. In fact, some days, it will

seem like they don't have the disease. Then out of nowhere, they regress.

They can have bad days for weeks. It is very unpredictable. I have found

that the less stimulation she has, the better. Out of the 4 " stages " of

this disease, my MIL is most likely in the later stage 2. Advanced enough

to where she can no longer remember names of anyone past her immediate

family, but can still recognize them by sight. She can eat and use the

bathroom herself. She walks fine (falling seems to affect the more

advanced). She needs some help showering, dressing, and undressing. She

needs reminders to do certain things. Like when she is eating, sometimes

she will just stand up and walk away before she is done. The staff at her

group home will just tell her to come on back and finish up. She is

generally very cooperative, and easily redirected. She sometimes will pack

her little make up bag and sit by the gate saying she has to get going.

Other times she will just pace the living room while holding a painting she

painted. She talks to herself often and usually is having a conversation

with her husband or sister. Now that she is on a good medication mix

(cocktail), her hallucinations are gone, but the talking to herself and some

occasional delusions still exist.

She is in a very good group home with only 5 patients, so that is very nice.

They do a good job there. We have been very lucky to have such great care

for her. She does not talk much to anyone anymore. She likes to sit in her

room (which is very nice) and listen to the radio or just look at her

pictures. This disease has certainly changed her, but her inner beauty is

still very present. I see it when we have family get-to-gathers and when I

visit with her at the house. Thankfully, the LBD has not robbed her of

that.

I hope this helps. Good luck to you. I wish you the best.

> LBD/husband

>

> My name is Dot and we recently found out that my husband has LBD and the

> little information I have has been taken from the Internet. I just found

> out about your caregivers group and was wondering if anyone could give me

> additional information about it.

>

> My husband,who is 70, has been treated for Alzhimers for about 4 years and

> high blood pressure for many years. He never got real bad but in the last

> yeara or so, he began falling and said his knees/legs were weak. Dr said

> he was having low pressure and asked him to wear support hose. It helped

> a little bit for a while but then he got much worse, not having the

> strength to walk.

>

> Jan. 1 we were forced to change his medigap insurance, therefore, had to

> change neurologist. New doctor, many tests and several months later, he

> gave us this new diagnosis, plus in the meantime, a pacemaker was put in.

> Aricept, which he was already taking, was doubled and a new pill was added

> -- carbidopa/levodopa, or sinemet. We started with one pill a day, for

> several days and then moved up to 2 with instructions " if necessary, 2 or

> 3 a day. " He was much worse last week andafter talking to the dr. we have

> been tapering him off and then back on just to see if it helped or got any

> better.

>

> I have the following questions if anyone can answer any of them for me.

> 1, How fast does this disease usually progress?

> 2. Is this falling part of it?

> 3. He claims he has dreams -- always of animals -- but is not bothered

> during the day. Can this be halluciation, if always at night and when

> sleeping?

> 4. What can I expect next?

>

> The web-site does not have specific information and we won't see the

> doctor for a couple of months.

>

> Thanks for any information you can share.

>

> Dot

>

>

>

[Guest guest]

Welcome to this group, Dot, although I am very sorry about the reason.

If you check our archives, I think you will find answers to all your questions.

It's good that your husband is not bothered by his " dreams " ! Two years ago,

which brought us his diagnosis, my husband was having hallucinations during

the day, but the worst and most bothersome took place at night. Neither

one of us slept then! In two years, my husband's ability to follow

conversations,

or to make sense when HE talks has been lost. He has also lost his ability to

do small repairs around the house, etc. etc. He is sure the reason it's so hot

on our front porch is because of the neighbor's pool chlorine. He falls a lot,

and

his right side shakes uncontrollably.....but the hallucinations are gone.

What you will find in reading, Dot, is that no two people are alike, so there is

no

way to predict the next stage....but the hardest to deal with are the

fluctuations.....

though after 2 years, I have learned to roll with the punches a little bit

better.

Please let me know if you'd like websites with LBD information.

Wishing you patience and a good sense of humor! It helps. Mai-Liis

[Guest guest]

My MIL's doctor gave me a pamphlet for the stages of AD and told me to

follow them as they are very similar. I wish there was one for just LBD.

> Re: LBD/husband

>

> ,

> Is there a chart of stages for LBD or are you referring to the AD chart of

>

> stages?

> Thanks,

>

>

>

>

[Guest guest]

In a message dated 8/2/02 10:48:03 AM Central Daylight Time,

cindy.vechinski@... writes:

> My MIL's doctor gave me a pamphlet for the stages of AD and told me to

> follow them as they are very similar. I wish there was one for just LBD.

I wish there was one, too, , as as far as I can tell the similarities

are not there. There was discussion of one once, but it was dropped because

of so many dissimilarities. Only that the last stages are really ugly.

Hoping SOMEONE will speak up if such a " real " thing is found . . . Cheryl

(For example, once down, AD patients stay down. LBD patients can rebound.

To wit, my own husband who was presumed to be on death's door several months

ago by an excellet Internal Med doc who does NOT recognize the fluctuations

of LBD . . . )

[Guest guest]

Dot

So sorry it has taken me so long to welcome you to this group. My dad

just turned 65 on July 31st and has been struggling with LBD for almost

5 yrs. Recently he has progressed into a new stage...sleeping more,

refusing cares and meds., refusing to eat and has lost weight plus many

behaviours and aggression. I have been busy making trips to the nursing

home where he lives to assure atleast he is getting his meds. I am

happy you found this group as you will find answers to questions and

shoulders to lean on if all you need is to vent. Best of luck and you

will be added to my prayer list.

Sandie

Des Moines, IA