Re: Re: Opinions appreciated

[Guest guest]

Thank you very much for responding. Your response to the issue of testing is

very valuable to me. I had decided to request aricept or something similar this

week at his check up. I figured it would be worth it to give it a try. My

husband is very frustrated with his inability to think.  I agree that an

actual diagnosis isn't important, PD and LBD are so similar in treatment anyway.

My main concern was getting meds to help him think and to make sure we're

prepared.

 

Thanks again

C

    

________________________________

To: LBDcaregivers

Sent: Monday, December 5, 2011 1:52 PM

Subject: Re: Opinions appreciated

 

Hi -

My father is 83 and has been seen for over 7 years by physicians at the

Cleveland Clinic, including two favorites: Dr. Ronan Factora and Dr. Ami Hall.

They both specialize in elderly patients with dementia issues.

Certainly it sounds like your husband could fit the Lewy Body Dementia

diagnosis, but remember that it's not so important what you call it; to the

patient, what is important is the treatment plan. So no matter what the

" official diagnosis " is, what matters is how the symptoms are handled and

affairs are in place to cope with each day. As long as your loved one is under

the care of a physician you like who is familiar with different dementias and

the risks (i.e.medication sensitivities) of each, you need not worry about

whether it is officially declared " LBD " .

My father (retired college professor) tested " normal " on mental status for many

years, but that didn't interfere with the physicians prescribing the Aricept and

Namenda that seems to have helped slow the progess of his condition. And the

physicians were well-aware that intelligent people can score highly even in the

presence of dementia.

Continue to keep yourself informed, and rely on the information you get here

from others' experiences to help on the way.

Good thoughts-

Carol

>

> I haven't commented much on this loop, but I follow the threads with interest.

My husband was diagnosed with PD in 2009 at the age of 56. I never felt the

diagnosis was accurate based on my father's battle with PD for the 20 years

prior to that. My husband's problems started with cognitive impairment with the

movement issues starting about a year and a half later.

>

> My husband has all the classic symptoms of LBD but when the doctors have given

him the psycological tests he tests " normal " . Has anyone else had their LO test

in the normal range early in their disease? My husband was a genius before this

illness (IQ of about 160) My husband is currently seeing a movement order

specialist as opposed to a demetia specialist. His doctor is at the Cleveland

Clinic (so he's very good) but he is basing his decision on that test. I'm not

sure what to do from here. Do I wait until his tests start showing more decline

or go to another doctor?

>

>

>

[Guest guest]

, sounds like we are in the same boat. your husband,59 with onset age 56. My

wife Kay, 59, onset 57. we are going with possible/probable LBD. i think she

actually had cognitive problems at 55. short term memory, talking to herself at

work and couldn't find things. she quit her job and many doctors, hospitals,

tests, etc- she is probably phases I, II or III.  she doesn't drive or do many

ADLs. she is stably disabled at this time. after cognitive she  went into

pseudo demetia, psychotic depression and delusions. now she has mainly cognitive

and motor skill problems,  a.k.a.  LBD.  the terrible depression and

delusions are gone.  i agree with Judy to see a psych. or a good neurol.  dr.-

some don't like dealing with LBD, etc.  also download the stages/phases list on

this website. i feel i owe it to my wife to do the 2-4 hr neuro-psych test (

didn't want to put her thru that, but I need to know that i have done everything

I can) married 35 years,

my only bride.  we have an aide for  2-4 hr days and i am it the other

90%.     i have 2 good buddies that we going hiking, b-fast, movies on the

caregiver days.  some days i am great with much energy and socialability.

almost seems like too much, all things considered.  then the next day, i am

down- watched a holiday movie with Kay and start crying for no apparent reason.

i take an anti-depressant at dr.'s request.  this is not a fun journey, so

please take care of yourself the best you can. i still haven't ruled out a

miracle or un-expected act-of-God.     

Subject: Re: Re: Opinions appreciated

To: " LBDcaregivers " <LBDcaregivers >

Date: Monday, December 5, 2011, 11:32 AM

 

Thank you very much for responding. Your response to the issue of testing is

very valuable to me. I had decided to request aricept or something similar this

week at his check up. I figured it would be worth it to give it a try. My

husband is very frustrated with his inability to think.  I agree that an

actual diagnosis isn't important, PD and LBD are so similar in treatment anyway.

My main concern was getting meds to help him think and to make sure we're

prepared.

 

Thanks again

C

    

________________________________

To: LBDcaregivers

Sent: Monday, December 5, 2011 1:52 PM

Subject: Re: Opinions appreciated

 

Hi -

My father is 83 and has been seen for over 7 years by physicians at the

Cleveland Clinic, including two favorites: Dr. Ronan Factora and Dr. Ami Hall.

They both specialize in elderly patients with dementia issues.

Certainly it sounds like your husband could fit the Lewy Body Dementia

diagnosis, but remember that it's not so important what you call it; to the

patient, what is important is the treatment plan. So no matter what the

" official diagnosis " is, what matters is how the symptoms are handled and

affairs are in place to cope with each day. As long as your loved one is under

the care of a physician you like who is familiar with different dementias and

the risks (i.e.medication sensitivities) of each, you need not worry about

whether it is officially declared " LBD " .

My father (retired college professor) tested " normal " on mental status for many

years, but that didn't interfere with the physicians prescribing the Aricept and

Namenda that seems to have helped slow the progess of his condition. And the

physicians were well-aware that intelligent people can score highly even in the

presence of dementia.

Continue to keep yourself informed, and rely on the information you get here

from others' experiences to help on the way.

Good thoughts-

Carol

>

> I haven't commented much on this loop, but I follow the threads with interest.

My husband was diagnosed with PD in 2009 at the age of 56. I never felt the

diagnosis was accurate based on my father's battle with PD for the 20 years

prior to that. My husband's problems started with cognitive impairment with the

movement issues starting about a year and a half later.

>

> My husband has all the classic symptoms of LBD but when the doctors have given

him the psycological tests he tests " normal " . Has anyone else had their LO test

in the normal range early in their disease? My husband was a genius before this

illness (IQ of about 160) My husband is currently seeing a movement order

specialist as opposed to a demetia specialist. His doctor is at the Cleveland

Clinic (so he's very good) but he is basing his decision on that test. I'm not

sure what to do from here. Do I wait until his tests start showing more decline

or go to another doctor?

>

>

>

[Guest guest]

I've read many of your emails, . I feel some of your distress, though I'm

doing pretty well so far.  We're awfully young to go through this ordeal. My

husband has bad days and good days, but at the moment, even his bad days are

tolerable. He exercises regularly which slows the progression.

 

 I have an advantage in that my father had PD for 24 years (just died about 3

weeks ago) so I know what to expect and my mother is the world's strongest

woman. I've learned a lot of coping mechanisms by watching her. There are

moments when I panic, but we're on a waiting list for a very nice continuing

care facility in our area. We plan to move in 3 years and we'll have help when

we need it. That knowledge keeps me from freaking out too much.

 

C

 

 

  

________________________________

To: LBDcaregivers

Sent: Monday, December 5, 2011 7:09 PM

Subject: Re: Re: Opinions appreciated

 

, sounds like we are in the same boat. your husband,59 with onset age 56. My

wife Kay, 59, onset 57. we are going with possible/probable LBD. i think she

actually had cognitive problems at 55. short term memory, talking to herself at

work and couldn't find things. she quit her job and many doctors, hospitals,

tests, etc- she is probably phases I, II or III.  she doesn't drive or do many

ADLs. she is stably disabled at this time. after cognitive she  went into

pseudo demetia, psychotic depression and delusions. now she has mainly cognitive

and motor skill problems,  a.k.a.  LBD.  the terrible depression and

delusions are gone.  i agree with Judy to see a psych. or a good neurol.  dr.-

some don't like dealing with LBD, etc.  also download the stages/phases list on

this website. i feel i owe it to my wife to do the 2-4 hr neuro-psych test (

didn't want to put her thru that, but I need to know that i have done everything

I can) married 35 years,

my only bride.  we have an aide for  2-4 hr days and i am it the other

90%.     i have 2 good buddies that we going hiking, b-fast, movies on the

caregiver days.  some days i am great with much energy and socialability.

almost seems like too much, all things considered.  then the next day, i am

down- watched a holiday movie with Kay and start crying for no apparent reason.

i take an anti-depressant at dr.'s request.  this is not a fun journey, so

please take care of yourself the best you can. i still haven't ruled out a

miracle or un-expected act-of-God.     

Subject: Re: Re: Opinions appreciated

To: " LBDcaregivers " <LBDcaregivers >

Date: Monday, December 5, 2011, 11:32 AM

 

Thank you very much for responding. Your response to the issue of testing is

very valuable to me. I had decided to request aricept or something similar this

week at his check up. I figured it would be worth it to give it a try. My

husband is very frustrated with his inability to think.  I agree that an

actual diagnosis isn't important, PD and LBD are so similar in treatment anyway.

My main concern was getting meds to help him think and to make sure we're

prepared.

 

Thanks again

C

    

________________________________

To: LBDcaregivers

Sent: Monday, December 5, 2011 1:52 PM

Subject: Re: Opinions appreciated

 

Hi -

My father is 83 and has been seen for over 7 years by physicians at the

Cleveland Clinic, including two favorites: Dr. Ronan Factora and Dr. Ami Hall.

They both specialize in elderly patients with dementia issues.

Certainly it sounds like your husband could fit the Lewy Body Dementia

diagnosis, but remember that it's not so important what you call it; to the

patient, what is important is the treatment plan. So no matter what the

" official diagnosis " is, what matters is how the symptoms are handled and

affairs are in place to cope with each day. As long as your loved one is under

the care of a physician you like who is familiar with different dementias and

the risks (i.e.medication sensitivities) of each, you need not worry about

whether it is officially declared " LBD " .

My father (retired college professor) tested " normal " on mental status for many

years, but that didn't interfere with the physicians prescribing the Aricept and

Namenda that seems to have helped slow the progess of his condition. And the

physicians were well-aware that intelligent people can score highly even in the

presence of dementia.

Continue to keep yourself informed, and rely on the information you get here

from others' experiences to help on the way.

Good thoughts-

Carol

>

> I haven't commented much on this loop, but I follow the threads with interest.

My husband was diagnosed with PD in 2009 at the age of 56. I never felt the

diagnosis was accurate based on my father's battle with PD for the 20 years

prior to that. My husband's problems started with cognitive impairment with the

movement issues starting about a year and a half later.

>

> My husband has all the classic symptoms of LBD but when the doctors have given

him the psycological tests he tests " normal " . Has anyone else had their LO test

in the normal range early in their disease? My husband was a genius before this

illness (IQ of about 160) My husband is currently seeing a movement order

specialist as opposed to a demetia specialist. His doctor is at the Cleveland

Clinic (so he's very good) but he is basing his decision on that test. I'm not

sure what to do from here. Do I wait until his tests start showing more decline

or go to another doctor?

>

>

>

[Guest guest]

How are you able to get into the continuing care facility with your husband

already diagnosed with PD or LBD? Every place I know of will not accept

you if you have such a diagnosis. You must be in good health to be

accepted!

Pat M.

58, Wife/ caregiver of Bob, 75 dx PD 2003, LBD 2009

> **

>

>

> I've read many of your emails, . I feel some of your distress, though

> I'm doing pretty well so far. We're awfully young to go through this

> ordeal. My husband has bad days and good days, but at the moment, even his

> bad days are tolerable. He exercises regularly which slows the progression.

>

> I have an advantage in that my father had PD for 24 years (just died

> about 3 weeks ago) so I know what to expect and my mother is the world's

> strongest woman. I've learned a lot of coping mechanisms by watching her.

> There are moments when I panic, but we're on a waiting list for a very nice

> continuing care facility in our area. We plan to move in 3 years and we'll

> have help when we need it. That knowledge keeps me from freaking out too

> much.

>

> C

>

>

>

>

>

>

> ________________________________

>

> To: LBDcaregivers

> Sent: Monday, December 5, 2011 7:09 PM

>

> Subject: Re: Re: Opinions appreciated

>

>

>

>

> , sounds like we are in the same boat. your husband,59 with onset age

> 56. My wife Kay, 59, onset 57. we are going with possible/probable LBD. i

> think she actually had cognitive problems at 55. short term memory, talking

> to herself at work and couldn't find things. she quit her job and many

> doctors, hospitals, tests, etc- she is probably phases I, II or III. she

> doesn't drive or do many ADLs. she is stably disabled at this time. after

> cognitive she went into pseudo demetia, psychotic depression and

> delusions. now she has mainly cognitive and motor skill problems, a.k.a.

> LBD. the terrible depression and delusions are gone. i agree with Judy to

> see a psych. or a good neurol. dr.- some don't like dealing with LBD,

> etc. also download the stages/phases list on this website. i feel i owe it

> to my wife to do the 2-4 hr neuro-psych test ( didn't want to put her thru

> that, but I need to know that i have done everything I can) married 35

> years,

> my only bride. we have an aide for 2-4 hr days and i am it the other

> 90%. i have 2 good buddies that we going hiking, b-fast, movies on the

> caregiver days. some days i am great with much energy and socialability.

> almost seems like too much, all things considered. then the next day, i am

> down- watched a holiday movie with Kay and start crying for no apparent

> reason. i take an anti-depressant at dr.'s request. this is not a fun

> journey, so please take care of yourself the best you can. i still haven't

> ruled out a miracle or un-expected act-of-God.

>

>

>

>

> Subject: Re: Re: Opinions appreciated

> To: " LBDcaregivers " <LBDcaregivers >

> Date: Monday, December 5, 2011, 11:32 AM

>

>

>

> Thank you very much for responding. Your response to the issue of testing

> is very valuable to me. I had decided to request aricept or something

> similar this week at his check up. I figured it would be worth it to give

> it a try. My husband is very frustrated with his inability to think. I

> agree that an actual diagnosis isn't important, PD and LBD are so similar

> in treatment anyway. My main concern was getting meds to help him think and

> to make sure we're prepared.

>

> Thanks again

> C

>

>

> ________________________________

>

> To: LBDcaregivers

> Sent: Monday, December 5, 2011 1:52 PM

> Subject: Re: Opinions appreciated

>

>

>

> Hi -

>

> My father is 83 and has been seen for over 7 years by physicians at the

> Cleveland Clinic, including two favorites: Dr. Ronan Factora and Dr. Ami

> Hall. They both specialize in elderly patients with dementia issues.

>

> Certainly it sounds like your husband could fit the Lewy Body Dementia

> diagnosis, but remember that it's not so important what you call it; to the

> patient, what is important is the treatment plan. So no matter what the

> " official diagnosis " is, what matters is how the symptoms are handled and

> affairs are in place to cope with each day. As long as your loved one is

> under the care of a physician you like who is familiar with different

> dementias and the risks (i.e.medication sensitivities) of each, you need

> not worry about whether it is officially declared " LBD " .

>

> My father (retired college professor) tested " normal " on mental status for

> many years, but that didn't interfere with the physicians prescribing the

> Aricept and Namenda that seems to have helped slow the progess of his

> condition. And the physicians were well-aware that intelligent people can

> score highly even in the presence of dementia.

>

> Continue to keep yourself informed, and rely on the information you get

> here from others' experiences to help on the way.

>

> Good thoughts-

> Carol

>

>

> >

> > I haven't commented much on this loop, but I follow the threads with

> interest. My husband was diagnosed with PD in 2009 at the age of 56. I

> never felt the diagnosis was accurate based on my father's battle with PD

> for the 20 years prior to that. My husband's problems started with

> cognitive impairment with the movement issues starting about a year and a

> half later.

> >

> > My husband has all the classic symptoms of LBD but when the doctors have

> given him the psycological tests he tests " normal " . Has anyone else had

> their LO test in the normal range early in their disease? My husband was a

> genius before this illness (IQ of about 160) My husband is currently seeing

> a movement order specialist as opposed to a demetia specialist. His doctor

> is at the Cleveland Clinic (so he's very good) but he is basing his

> decision on that test. I'm not sure what to do from here. Do I wait until

> his tests start showing more decline or go to another doctor?

> >

> >

> >

>

>

[Guest guest]

,I'm interested in learning about the coping mechanisms you saw in your

strong mother.   I use to think I was a strong person -- but now, I hate

the weakling I've become.  Teri 

Subject: Re: Re: Opinions appreciated

To: " LBDcaregivers " <LBDcaregivers >

Date: Monday, December 5, 2011, 11:32 AM

 

Thank you very much for responding. Your response to the issue of testing is

very valuable to me. I had decided to request aricept or something similar this

week at his check up. I figured it would be worth it to give it a try. My

husband is very frustrated with his inability to think.  I agree that an

actual diagnosis isn't important, PD and LBD are so similar in treatment anyway.

My main concern was getting meds to help him think and to make sure we're

prepared.

 

Thanks again

C

    

________________________________

To: LBDcaregivers

Sent: Monday, December 5, 2011 1:52 PM

Subject: Re: Opinions appreciated

 

Hi -

My father is 83 and has been seen for over 7 years by physicians at the

Cleveland Clinic, including two favorites: Dr. Ronan Factora and Dr. Ami Hall.

They both specialize in elderly patients with dementia issues.

Certainly it sounds like your husband could fit the Lewy Body Dementia

diagnosis, but remember that it's not so important what you call it; to the

patient, what is important is the treatment plan. So no matter what the

" official diagnosis " is, what matters is how the symptoms are handled and

affairs are in place to cope with each day. As long as your loved one is under

the care of a physician you like who is familiar with different dementias and

the risks (i.e.medication sensitivities) of each, you need not worry about

whether it is officially declared " LBD " .

My father (retired college professor) tested " normal " on mental status for many

years, but that didn't interfere with the physicians prescribing the Aricept and

Namenda that seems to have helped slow the progess of his condition. And the

physicians were well-aware that intelligent people can score highly even in the

presence of dementia.

Continue to keep yourself informed, and rely on the information you get here

from others' experiences to help on the way.

Good thoughts-

Carol

>

> I haven't commented much on this loop, but I follow the threads with interest.

My husband was diagnosed with PD in 2009 at the age of 56. I never felt the

diagnosis was accurate based on my father's battle with PD for the 20 years

prior to that. My husband's problems started with cognitive impairment with the

movement issues starting about a year and a half later.

>

> My husband has all the classic symptoms of LBD but when the doctors have given

him the psycological tests he tests " normal " . Has anyone else had their LO test

in the normal range early in their disease? My husband was a genius before this

illness (IQ of about 160) My husband is currently seeing a movement order

specialist as opposed to a demetia specialist. His doctor is at the Cleveland

Clinic (so he's very good) but he is basing his decision on that test. I'm not

sure what to do from here. Do I wait until his tests start showing more decline

or go to another doctor?

>

>

>

[Guest guest]

He has had the full psych eval (6 hours) twice at the Cleveland Clinic. They did

one about 3 months after his diagnosis in order to get a baseline and he was

given another about 9 months late to see if there had been any change. His

change was minimal and they felt it wasn't enough to indicate dementia. But I

live with him every day. I know better.

 

C

  

________________________________

To: LBDcaregivers

Sent: Monday, December 5, 2011 10:39 PM

Subject: Re: Opinions appreciated

 

:

What type of cognitive testing did your husband have? If it was a MMSE

(Mini-Mental Status Exam) done in the doctor's office during a regular

appointment it wouldn't necessarily show a cognitive loss. My brilliant sister

who has severe impairment can still ace an MMSE.

My sister was diagnosed in 2007 with LBD after a DX of PD in 2004, then MSA,

also in 2004. The true diagnosis was found via an extensive evaluation with a

neuropsychologist which should have taken 3 hours, but due to her inability, it

took 6 hours. In LBD, memory loss is not always the biggest issue, executive

functioning is, so it takes more extensive testing to uncover that.

I absolutely believe that a full neuropsych exam is essential with a possible

LBD diagnosis.

I've lost my father to this disease, my sister (61) is now progressing more

rapidly, and my youngest brother (52) has PD with mild cognitive impairment. The

importance of proper testing and seeking the assistance of LBD-aware physicians

is paramount.

Helen

>

> I haven't commented much on this loop, but I follow the threads with interest.

My husband was diagnosed with PD in 2009 at the age of 56. I never felt the

diagnosis was accurate based on my father's battle with PD for the 20 years

prior to that. My husband's problems started with cognitive impairment with the

movement issues starting about a year and a half later.

>

> My husband has all the classic symptoms of LBD but when the doctors have given

him the psycological tests he tests " normal " . Has anyone else had their LO test

in the normal range early in their disease? My husband was a genius before this

illness (IQ of about 160) My husband is currently seeing a movement order

specialist as opposed to a demetia specialist. His doctor is at the Cleveland

Clinic (so he's very good) but he is basing his decision on that test. I'm not

sure what to do from here. Do I wait until his tests start showing more decline

or go to another doctor?

>

>

>

[Guest guest]

Yes. I've already contacted them and spoken with them extensively. Their policy

is that the individual must be capable of living independently at the time of

admission even if they have a diagnosis that will need care down the road. Many

of the people who move there do so because of a progressive disease. The only

catch is that you have to move in soon enough to still be independent. That's

why we're moving in at an early age. I'm only 54.

 

C

  

________________________________

To: LBDcaregivers

Sent: Monday, December 5, 2011 10:28 PM

Subject: Re: Re: Opinions appreciated

How are you able to get into the continuing care facility with your husband

already diagnosed with PD or LBD?  Every place I know of will not accept

you if you have such a diagnosis.  You must be in good health to be

accepted!

Pat M.

58, Wife/ caregiver of Bob, 75 dx PD 2003, LBD 2009

> **

>

>

> I've read many of your emails, . I feel some of your distress, though

> I'm doing pretty well so far.  We're awfully young to go through this

> ordeal. My husband has bad days and good days, but at the moment, even his

> bad days are tolerable. He exercises regularly which slows the progression.

>

>  I have an advantage in that my father had PD for 24 years (just died

> about 3 weeks ago) so I know what to expect and my mother is the world's

> strongest woman. I've learned a lot of coping mechanisms by watching her.

> There are moments when I panic, but we're on a waiting list for a very nice

> continuing care facility in our area. We plan to move in 3 years and we'll

> have help when we need it. That knowledge keeps me from freaking out too

> much.

>

> C

>

>

>

>

>

>

> ________________________________

>

> To: LBDcaregivers

> Sent: Monday, December 5, 2011 7:09 PM

>

> Subject: Re: Re: Opinions appreciated

>

>

>

>

> , sounds like we are in the same boat. your husband,59 with onset age

> 56. My wife Kay, 59, onset 57. we are going with possible/probable LBD. i

> think she actually had cognitive problems at 55. short term memory, talking

> to herself at work and couldn't find things. she quit her job and many

> doctors, hospitals, tests, etc- she is probably phases I, II or III.  she

> doesn't drive or do many ADLs. she is stably disabled at this time. after

> cognitive she  went into pseudo demetia, psychotic depression and

> delusions. now she has mainly cognitive and motor skill problems,  a.k.a.

> LBD.  the terrible depression and delusions are gone.  i agree with Judy to

> see a psych. or a good neurol.  dr.- some don't like dealing with LBD,

> etc.  also download the stages/phases list on this website. i feel i owe it

> to my wife to do the 2-4 hr neuro-psych test ( didn't want to put her thru

> that, but I need to know that i have done everything I can) married 35

> years,

> my only bride.  we have an aide for  2-4 hr days and i am it the other

> 90%.    i have 2 good buddies that we going hiking, b-fast, movies on the

> caregiver days.  some days i am great with much energy and socialability.

> almost seems like too much, all things considered.  then the next day, i am

> down- watched a holiday movie with Kay and start crying for no apparent

> reason. i take an anti-depressant at dr.'s request.  this is not a fun

> journey, so please take care of yourself the best you can. i still haven't

> ruled out a miracle or un-expected act-of-God.     

>

>

>

>

> Subject: Re: Re: Opinions appreciated

> To: " LBDcaregivers " <LBDcaregivers >

> Date: Monday, December 5, 2011, 11:32 AM

>

>

>

> Thank you very much for responding. Your response to the issue of testing

> is very valuable to me. I had decided to request aricept or something

> similar this week at his check up. I figured it would be worth it to give

> it a try. My husband is very frustrated with his inability to think.  I

> agree that an actual diagnosis isn't important, PD and LBD are so similar

> in treatment anyway. My main concern was getting meds to help him think and

> to make sure we're prepared.

>

> Thanks again

> C

>

>

> ________________________________

>

> To: LBDcaregivers

> Sent: Monday, December 5, 2011 1:52 PM

> Subject: Re: Opinions appreciated

>

>

>

> Hi -

>

> My father is 83 and has been seen for over 7 years by physicians at the

> Cleveland Clinic, including two favorites: Dr. Ronan Factora and Dr. Ami

> Hall. They both specialize in elderly patients with dementia issues.

>

> Certainly it sounds like your husband could fit the Lewy Body Dementia

> diagnosis, but remember that it's not so important what you call it; to the

> patient, what is important is the treatment plan. So no matter what the

> " official diagnosis " is, what matters is how the symptoms are handled and

> affairs are in place to cope with each day. As long as your loved one is

> under the care of a physician you like who is familiar with different

> dementias and the risks (i.e.medication sensitivities) of each, you need

> not worry about whether it is officially declared " LBD " .

>

> My father (retired college professor) tested " normal " on mental status for

> many years, but that didn't interfere with the physicians prescribing the

> Aricept and Namenda that seems to have helped slow the progess of his

> condition. And the physicians were well-aware that intelligent people can

> score highly even in the presence of dementia.

>

> Continue to keep yourself informed, and rely on the information you get

> here from others' experiences to help on the way.

>

> Good thoughts-

> Carol

>

>

> >

> > I haven't commented much on this loop, but I follow the threads with

> interest. My husband was diagnosed with PD in 2009 at the age of 56. I

> never felt the diagnosis was accurate based on my father's battle with PD

> for the 20 years prior to that. My husband's problems started with

> cognitive impairment with the movement issues starting about a year and a

> half later.

> >

> > My husband has all the classic symptoms of LBD but when the doctors have

> given him the psycological tests he tests " normal " . Has anyone else had

> their LO test in the normal range early in their disease? My husband was a

> genius before this illness (IQ of about 160) My husband is currently seeing

> a movement order specialist as opposed to a demetia specialist. His doctor

> is at the Cleveland Clinic (so he's very good) but he is basing his

> decision on that test. I'm not sure what to do from here. Do I wait until

> his tests start showing more decline or go to another doctor?

> >

> >

> >

>

>

[Guest guest]

I understand what you're saying, Teri. I have nights where I cry myself to

sleep, but those are getting fewer now. Most of my mother's lessons have simply

been in the form of attitude. She never blamed my father for his illness. It

wasn't his fault. She never focused on the things they couldn't do, only the

things they could. She would get upset, when he didn't make it to the toilet on

time or when he yelled at her constantly anytime she left the room, but she

didn't focus on that. They traveled, went out to eat, etc up until a few months

before he died. My husband and I helped her once he needed the wheelchair, but

she never let his PD stop their lives.

 

One of the most important things I learned was not to let the disease define who

we are.  For example, my husband has had PD (and most likely LBD) for 3 years

now. We  love to travel and used to travel in a big 5th wheel camper which he

can no longer drive. So we switched to staying in hotels. Now, I do most of the

driving. We've had to adjust, but we still travel. It's harder on me because I

now have to do everything. I make the reservations, do the driving, read the

road map etc.  When I get frustrated over that, I just remind myself that if I

was traveling alone, I would be doing all those things anyway.

 

I hate PD, but I love the man even though he's not the same one he used to be.

If the situation had been reversed, and I was the one who'd gotten PD, he would

do the same for me. We adjust, we adapt and we go on. I'm planning now for the

care we're going to need down the road so it doesn't catch us off guard like it

did my mother. I tell him frequently, HE doesn't have PD, WE do. I fight with

him because he would do no less for me.

 

I'm a lucky woman.

C

  

________________________________

To: LBDcaregivers

Sent: Tuesday, December 6, 2011 12:36 AM

Subject: Re: Re: Opinions appreciated

 

,I'm interested in learning about the coping mechanisms you saw in your

strong mother.   I use to think I was a strong person -- but now, I hate

the weakling I've become.  Teri 

Subject: Re: Re: Opinions appreciated

To: " LBDcaregivers " <LBDcaregivers >

Date: Monday, December 5, 2011, 11:32 AM

 

Thank you very much for responding. Your response to the issue of testing is

very valuable to me. I had decided to request aricept or something similar this

week at his check up. I figured it would be worth it to give it a try. My

husband is very frustrated with his inability to think.  I agree that an

actual diagnosis isn't important, PD and LBD are so similar in treatment anyway.

My main concern was getting meds to help him think and to make sure we're

prepared.

 

Thanks again

C

    

________________________________

To: LBDcaregivers

Sent: Monday, December 5, 2011 1:52 PM

Subject: Re: Opinions appreciated

 

Hi -

My father is 83 and has been seen for over 7 years by physicians at the

Cleveland Clinic, including two favorites: Dr. Ronan Factora and Dr. Ami Hall.

They both specialize in elderly patients with dementia issues.

Certainly it sounds like your husband could fit the Lewy Body Dementia

diagnosis, but remember that it's not so important what you call it; to the

patient, what is important is the treatment plan. So no matter what the

" official diagnosis " is, what matters is how the symptoms are handled and

affairs are in place to cope with each day. As long as your loved one is under

the care of a physician you like who is familiar with different dementias and

the risks (i.e.medication sensitivities) of each, you need not worry about

whether it is officially declared " LBD " .

My father (retired college professor) tested " normal " on mental status for many

years, but that didn't interfere with the physicians prescribing the Aricept and

Namenda that seems to have helped slow the progess of his condition. And the

physicians were well-aware that intelligent people can score highly even in the

presence of dementia.

Continue to keep yourself informed, and rely on the information you get here

from others' experiences to help on the way.

Good thoughts-

Carol

>

> I haven't commented much on this loop, but I follow the threads with interest.

My husband was diagnosed with PD in 2009 at the age of 56. I never felt the

diagnosis was accurate based on my father's battle with PD for the 20 years

prior to that. My husband's problems started with cognitive impairment with the

movement issues starting about a year and a half later.

>

> My husband has all the classic symptoms of LBD but when the doctors have given

him the psycological tests he tests " normal " . Has anyone else had their LO test

in the normal range early in their disease? My husband was a genius before this

illness (IQ of about 160) My husband is currently seeing a movement order

specialist as opposed to a demetia specialist. His doctor is at the Cleveland

Clinic (so he's very good) but he is basing his decision on that test. I'm not

sure what to do from here. Do I wait until his tests start showing more decline

or go to another doctor?

>

>

>

[Guest guest]

Wow, , you put that so beautifully. We are just in the very beginning stages

of this journey with my Dad, who is 85. I'm going to keep your email and refer

back to it whenever I start feeling down. Thank you.

Elise

________________________________

> I understand what you're saying, Teri. I have nights where I cry myself to

sleep, but those are getting fewer now. Most of my mother's lessons have simply

been in the form of attitude. She never blamed my father for his illness. It

wasn't his fault. She never focused on the things they couldn't do, only the

things they could. She would get upset, when he didn't make it to the toilet on

time or when he yelled at her constantly anytime she left the room, but she

didn't focus on that. They traveled, went out to eat, etc up until a few months

before he died. My husband and I helped her once he needed the wheelchair, but

she never let his PD stop their lives.

>

> One of the most important things I learned was not to let the disease define

who we are. For example, my husband has had PD (and most likely LBD) for 3

years now. We love to travel and used to travel in a big 5th wheel camper which

he can no longer drive. So we switched to staying in hotels. Now, I do most of

the driving. We've had to adjust, but we still travel. It's harder on me because

I now have to do everything. I make the reservations, do the driving, read the

road map etc. When I get frustrated over that, I just remind myself that if I

was traveling alone, I would be doing all those things anyway.

>

> I hate PD, but I love the man even though he's not the same one he used to be.

If the situation had been reversed, and I was the one who'd gotten PD, he would

do the same for me. We adjust, we adapt and we go on. I'm planning now for the

care we're going to need down the road so it doesn't catch us off guard like it

did my mother. I tell him frequently, HE doesn't have PD, WE do. I fight with

him because he would do no less for me.

>

> I'm a lucky woman.

> C

>

>

>

>

> ________________________________

>

> To: LBDcaregivers

> Sent: Tuesday, December 6, 2011 12:36 AM

> Subject: Re: Re: Opinions appreciated

>

>

>

>

> ,I'm interested in learning about the coping mechanisms you saw in your

strong mother. I use to think I was a strong person -- but now, I hate the

weakling I've become. Teri

>

>

>

>

>

> Subject: Re: Re: Opinions appreciated

>

> To: " LBDcaregivers " <LBDcaregivers >

>

> Date: Monday, December 5, 2011, 11:32 AM

>

>

>

> Thank you very much for responding. Your response to the issue of testing is

very valuable to me. I had decided to request aricept or something similar this

week at his check up. I figured it would be worth it to give it a try. My

husband is very frustrated with his inability to think. I agree that an actual

diagnosis isn't important, PD and LBD are so similar in treatment anyway. My

main concern was getting meds to help him think and to make sure we're prepared.

>

>

>

> Thanks again

>

> C

>

>

>

> ________________________________

>

>

>

> To: LBDcaregivers

>

> Sent: Monday, December 5, 2011 1:52 PM

>

> Subject: Re: Opinions appreciated

>

>

>

> Hi -

>

> My father is 83 and has been seen for over 7 years by physicians at the

Cleveland Clinic, including two favorites: Dr. Ronan Factora and Dr. Ami Hall.

They both specialize in elderly patients with dementia issues.

>

> Certainly it sounds like your husband could fit the Lewy Body Dementia

diagnosis, but remember that it's not so important what you call it; to the

patient, what is important is the treatment plan. So no matter what the

" official diagnosis " is, what matters is how the symptoms are handled and

affairs are in place to cope with each day. As long as your loved one is under

the care of a physician you like who is familiar with different dementias and

the risks (i.e.medication sensitivities) of each, you need not worry about

whether it is officially declared " LBD " .

>

> My father (retired college professor) tested " normal " on mental status for

many years, but that didn't interfere with the physicians prescribing the

Aricept and Namenda that seems to have helped slow the progess of his condition.

And the physicians were well-aware that intelligent people can score highly even

in the presence of dementia.

>

> Continue to keep yourself informed, and rely on the information you get here

from others' experiences to help on the way.

>

> Good thoughts-

>

> Carol

>

>

>

> >

>

> > I haven't commented much on this loop, but I follow the threads with

interest. My husband was diagnosed with PD in 2009 at the age of 56. I never

felt the diagnosis was accurate based on my father's battle with PD for the 20

years prior to that. My husband's problems started with cognitive impairment

with the movement issues starting about a year and a half later.

>

> >

>

> > My husband has all the classic symptoms of LBD but when the doctors have

given him the psycological tests he tests " normal " . Has anyone else had their LO

test in the normal range early in their disease? My husband was a genius before

this illness (IQ of about 160) My husband is currently seeing a movement order

specialist as opposed to a demetia specialist. His doctor is at the Cleveland

Clinic (so he's very good) but he is basing his decision on that test. I'm not

sure what to do from here. Do I wait until his tests start showing more decline

or go to another doctor?

>

> >

>

> >

>

> >

>

>

[Guest guest]

Thanks .  I, too, will think of your mother's attitude whenever I feel

down.  Teri

>

>

>

> Subject: Re: Re: Opinions appreciated

>

> To: " LBDcaregivers " <LBDcaregivers >

>

> Date: Monday, December 5, 2011, 11:32 AM

>

>

>

> Thank you very much for responding. Your response to the issue of testing is

very valuable to me. I had decided to request aricept or something similar this

week at his check up. I figured it would be worth it to give it a try. My

husband is very frustrated with his inability to think. I agree that an actual

diagnosis isn't important, PD and LBD are so similar in treatment anyway. My

main concern was getting meds to help him think and to make sure we're prepared.

>

>

>

> Thanks again

>

> C

>

>

>

> ________________________________

>

>

>

> To: LBDcaregivers

>

> Sent: Monday, December 5, 2011 1:52 PM

>

> Subject: Re: Opinions appreciated

>

>

>

> Hi -

>

> My father is 83 and has been seen for over 7 years by physicians at the

Cleveland Clinic, including two favorites: Dr. Ronan Factora and Dr. Ami Hall.

They both specialize in elderly patients with dementia issues.

>

> Certainly it sounds like your husband could fit the Lewy Body Dementia

diagnosis, but remember that it's not so important what you call it; to the

patient, what is important is the treatment plan. So no matter what the

" official diagnosis " is, what matters is how the symptoms are handled and

affairs are in place to cope with each day. As long as your loved one is under

the care of a physician you like who is familiar with different dementias and

the risks (i.e.medication sensitivities) of each, you need not worry about

whether it is officially declared " LBD " .

>

> My father (retired college professor) tested " normal " on mental status for

many years, but that didn't interfere with the physicians prescribing the

Aricept and Namenda that seems to have helped slow the progess of his condition.

And the physicians were well-aware that intelligent people can score highly even

in the presence of dementia.

>

> Continue to keep yourself informed, and rely on the information you get here

from others' experiences to help on the way.

>

> Good thoughts-

>

> Carol

>

>

>

> >

>

> > I haven't commented much on this loop, but I follow the threads with

interest. My husband was diagnosed with PD in 2009 at the age of 56. I never

felt the diagnosis was accurate based on my father's battle with PD for the 20

years prior to that. My husband's problems started with cognitive impairment

with the movement issues starting about a year and a half later.

>

> >

>

> > My husband has all the classic symptoms of LBD but when the doctors have

given him the psycological tests he tests " normal " . Has anyone else had their LO

test in the normal range early in their disease? My husband was a genius before

this illness (IQ of about 160) My husband is currently seeing a movement order

specialist as opposed to a demetia specialist. His doctor is at the Cleveland

Clinic (so he's very good) but he is basing his decision on that test. I'm not

sure what to do from here. Do I wait until his tests start showing more decline

or go to another doctor?

>

> >

>

> >

>

> >

>

>