Re: Re: Question re: catatonic-like state

[Guest guest]

We've observed this over the past month, also. They don't last long, but it

definitely takes effort to " reach " her when she's like that. I was

wondering if these could be " absence seizures " .

Gladys

-- Re: Question re: catatonic-like state

~

I don't know if perhaps my mother is further along in the disease than most

of the LO's here, but my mom has the catatonic states also. She literally

zones out and is totally unresponsive to any of us. We've had her checked

for UTI's, but all tests come back negative for any infection. They're not

long in duration, and she does come back to a more responsive state. They

will happen at almost any time, and we can't predict when they will happen

or how long they will last.

We do know that she's in the latter stages of LBD. Her neurologist put her

on hospice care in January or February, and told us to not try any heroic

measures with her because they would be futile. He recommended only

end-of-life measures and comfort issues. She has visits from the hospice

nurse twice weekly, and home health comes in 2-3 times a week to bathe her

and wash her hair. The other days we take care of her personal hygiene when

she's too far out of it to do it herself, but she cannot bathe herself any

longer. She also is not able to support her weight on her legs, and some

days her Parkinsonism makes eating difficult. However, she will not allow

anyone to feed her. We just clean up after.

I understand that the catatonia is scary, and when it first developed is

when we finally received the diagnosis of LBD. Up until that point, they

were saying Parkinson's Disease.

Jannis

Redefining Normal Every Day

[Guest guest]

Hi, all

 

This seems to be one of the " behaviors " that falls into the " fluctuations "

category. Apparently it is rather common at all LBD stages - my mom zones out

from time to time, especially when she is tired or uncomfortable, but it can

also occur any time. Sometimes these goaways last a few moments, sometinmes an

hour or all evening. When I am able to get her attention, she often refocuses

back, but not always. Early on in her disease I ran her to the ED every time,

but then learned to distinguish these from TIAs or seizures, and leave her

alone. The " states " don't seem to bother her - just me. Once again in this

disease, we can't definotely categorize stages by what's happening atany given

moment.

 

Up and down,

 

Lin

Subject: Re: Re: Question re: catatonic-like state

To: LBDcaregivers

Date: Tuesday, July 22, 2008, 5:21 PM

We've observed this over the past month, also. They don't last long,

but it

definitely takes effort to " reach " her when she's like that. I

was

wondering if these could be " absence seizures " .

Gladys

-- Re: Question re: catatonic-like state

~

I don't know if perhaps my mother is further along in the disease than most

of the LO's here, but my mom has the catatonic states also. She literally

zones out and is totally unresponsive to any of us. We've had her checked

for UTI's, but all tests come back negative for any infection. They're

not

long in duration, and she does come back to a more responsive state. They

will happen at almost any time, and we can't predict when they will happen

or how long they will last.

We do know that she's in the latter stages of LBD. Her neurologist put her

on hospice care in January or February, and told us to not try any heroic

measures with her because they would be futile. He recommended only

end-of-life measures and comfort issues. She has visits from the hospice

nurse twice weekly, and home health comes in 2-3 times a week to bathe her

and wash her hair. The other days we take care of her personal hygiene when

she's too far out of it to do it herself, but she cannot bathe herself any

longer. She also is not able to support her weight on her legs, and some

days her Parkinsonism makes eating difficult. However, she will not allow

anyone to feed her. We just clean up after.

I understand that the catatonia is scary, and when it first developed is

when we finally received the diagnosis of LBD. Up until that point, they

were saying Parkinson's Disease.

Jannis

Redefining Normal Every Day

[Guest guest]

hi lin,

there are many aspects of this awful disease taht are more infurating and

aggravating for the cg and family than the loved one.  the rule for going to ER

is: is breathing effected, or does the patient seemed to want to pass out and

fades in /out near passing out.  but if it is just mood fluctuations or

awareness fluctuations, they are very disturbing to us beucase our loved ones

dont act/ say or behave this way.  if our loved one doesnt seem to be in

physical distress, ie  breathing changes, heart fluctuations, chest pains than

we ahve to deal with the changes just keep an eye on them and do your best and

knowing/guessing what to do.  if in doubt go to ER just in case there is a major

health issue going on,  thanks and hugs, sharon

From: Gladys Stefany <agoramomptd (DOT) net>

Subject: Re: Re: Question re: catatonic-like state

To: LBDcaregivers@ yahoogroups. com

Date: Tuesday, July 22, 2008, 5:21 PM

We've observed this over the past month, also. They don't last long,

but it

definitely takes effort to " reach " her when she's like that. I

was

wondering if these could be " absence seizures " .

Gladys

-- Re: Question re: catatonic-like state

~

I don't know if perhaps my mother is further along in the disease than most

of the LO's here, but my mom has the catatonic states also. She literally

zones out and is totally unresponsive to any of us. We've had her checked

for UTI's, but all tests come back negative for any infection. They're

not

long in duration, and she does come back to a more responsive state. They

will happen at almost any time, and we can't predict when they will happen

or how long they will last.

We do know that she's in the latter stages of LBD. Her neurologist put her

on hospice care in January or February, and told us to not try any heroic

measures with her because they would be futile. He recommended only

end-of-life measures and comfort issues. She has visits from the hospice

nurse twice weekly, and home health comes in 2-3 times a week to bathe her

and wash her hair. The other days we take care of her personal hygiene when

she's too far out of it to do it herself, but she cannot bathe herself any

longer. She also is not able to support her weight on her legs, and some

days her Parkinsonism makes eating difficult. However, she will not allow

anyone to feed her. We just clean up after.

I understand that the catatonia is scary, and when it first developed is

when we finally received the diagnosis of LBD. Up until that point, they

were saying Parkinson's Disease.

Jannis

Redefining Normal Every Day

[Guest guest]

Hi, Sharon -

Sounds like we are saying the same thing. I''ve learned from the MDs with whom I

work - and who include dementia and cardio guys - that the catatonic-like (it's

not true catatonia) behavior can mimic other problems. And, even physiological

shifts, such as the  " heart fluctuations " you mention - and which I would

interpret as significant changes in BP and respiration rate - canbe due to the

CNS/ANS involvement of this nasty disease.

 

I agree that if there's concern, go straight to the ED, don't pass go. My

message was  mostly about a person does not have to be in the " last stages " of

LBD to show any of the fluctuations, including the " blank stare, absent,

can't-be-reached " state.

 

Hope all is well at your end!

 

Lin

From: Gladys Stefany <agoramomptd (DOT) net>

Subject: Re: Re: Question re: catatonic-like state

To: LBDcaregivers@ yahoogroups. com

Date: Tuesday, July 22, 2008, 5:21 PM

We've observed this over the past month, also. They don't last long,

but it

definitely takes effort to " reach " her when she's like that. I

was

wondering if these could be " absence seizures " .

Gladys

-- Re: Question re: catatonic-like state

~

I don't know if perhaps my mother is further along in the disease than most

of the LO's here, but my mom has the catatonic states also. She literally

zones out and is totally unresponsive to any of us. We've had her checked

for UTI's, but all tests come back negative for any infection. They're

not

long in duration, and she does come back to a more responsive state. They

will happen at almost any time, and we can't predict when they will happen

or how long they will last.

We do know that she's in the latter stages of LBD. Her neurologist put her

on hospice care in January or February, and told us to not try any heroic

measures with her because they would be futile. He recommended only

end-of-life measures and comfort issues. She has visits from the hospice

nurse twice weekly, and home health comes in 2-3 times a week to bathe her

and wash her hair. The other days we take care of her personal hygiene when

she's too far out of it to do it herself, but she cannot bathe herself any

longer. She also is not able to support her weight on her legs, and some

days her Parkinsonism makes eating difficult. However, she will not allow

anyone to feed her. We just clean up after.

I understand that the catatonia is scary, and when it first developed is

when we finally received the diagnosis of LBD. Up until that point, they

were saying Parkinson's Disease.

Jannis

Redefining Normal Every Day