Re: Annie - just a suggestion

[Guest guest]

Annie-

I am trying to catch up on emails and came across that your LO is your husband.

Just a suggestion, but wanted you to know there is also a caringspouses support

group. If you type in Lewy Body Dementia in a search engine, the LBDCaregivers

website will come up. Click on it and it will bring up the caregivers home

page. To the left will be an area saying 'email groups'...click on that and it

brings up both this group and the Caringspouses group. Click on caringspouses

group...sign in like you did this group. Keep in mind, you are very welcome to

stay here. I do know, from other caregivers that used to belong to this group

that the level of caring is so very different from a child to a parent versas a

spouse to a spouse. Just food for thought.

So very sad to hear your husband is so young. My dad started with symptoms when

he was around 56 or 57 and was diagnosed at 58 with LBD.

I know there is a reason for everything, really had trouble figuring out this

one though. One reason I don't know the whole picture, I guess.

Wishing you the best life has to offer and I hope life is treating you kind.

Kind regards - and many hugs-

Sandie

Des Moines, IA

[Guest guest]

>

> Annie-

>

> I am trying to catch up on emails and came across that your LO is

your husband. Just a suggestion, but wanted you to know there is

also a caringspouses support group. If you type in Lewy Body

Dementia in a search engine, the LBDCaregivers website will come up.

Click on it and it will bring up the caregivers home page. To the

left will be an area saying 'email groups'...click on that and it

brings up both this group and the Caringspouses group. Click on

caringspouses group...sign in like you did this group. Keep in mind,

you are very welcome to stay here. I do know, from other caregivers

that used to belong to this group that the level of caring is so very

different from a child to a parent versas a spouse to a spouse. Just

food for thought.

>

> So very sad to hear your husband is so young. My dad started with

symptoms when he was around 56 or 57 and was diagnosed at 58 with LBD.

> I know there is a reason for everything, really had trouble

figuring out this one though. One reason I don't know the whole

picture, I guess.

>

> Wishing you the best life has to offer and I hope life is treating

you kind.

>

> Kind regards - and many hugs-

> Sandie

> Des Moines, IA

Sandie

yes, I'm new -joined last week. Got here through the Braintalk

site so didn't realize there was a spouse site for a few days. I've

joined but am still 'pending'. But thanks for the suggestion anyway.

My 56 y.o. husband has probable LBD. He was a military

dentist/colonel and in late '96 started having a slight tremor in his

hand (no one likes going to a dentist-much less one with shaking

hands!:-) He was also having sleep problems (REM & restless leg),

depression, & myoclonic jerks that HE was aware of but I had been

seeing some cognitive decline for awhile. After a full workup, which

proved inconclusive, he was 'allowed' to retire in fall of '97. In

the ensuing couple of years we bounced around trying to get a DX.

Finally in spring 2000, a PET scan was consistant with Alzheimers or

Parkinsons with dementia. We (neuro & I) stressed the PD because my

husband had repeatedly said he'd commit suicide if he thought he had

AD. So, while we went down that PD road (meds, support groups etc.)

neither DX felt just right. Now LBD is being mentioned more often &

that feels right.

Spring '03 it was discovered he had a herniated disc after a fall

and things went south in a hurry-almost completely bedriden, pain

meds, increased hallucinations, delusions, etc. About this time I

ended up in the ER one nite with chest pain-ended up being stress

related reflux but my Dr. insisted on some immediate changes. An

adult day care 'fit the bill' after he became ambulatory again.

So things are fairly stable right now. He goes to day care 3 days

a week, pretty much needs constant supervision, has fluctuating

cognition, has visual, auditory and tactile hallucinations and

delusions (we have lots of 'company' especially his parents who

passed away a couple of years ago) Now THAT was a stressful time-His

parents passed away 10 weeks apart and in the middle of the two

funerals our daughter got married! 2 funerals and a wedding -could

be a movie! :-) Now we have our first grandchild born Dec. 2003

weighing a whopping 10# 10oz.! So some joy in the middle of the pain.

A couple of questions. On the 5-7 year prognosis,is that from

initial symptoms or from DX? I've seen both listed. Also I noticed

that my hubby tends to walk on his tiptoes when he is more

confused/agitated. Anyone else encounter this? I do know that any

physiscal ailment (pain, constipation etc.) greatly increases his

confusion and agitation.

Thanks again Sandie for the warm welcome and suggestion. I've been

to Iowa a couple of times. When we were stationed in North Dakota we

had some friends who were from Iowa. We traveled with them some to

Ames and the Amana colonies and were 'forced' to endure Hawkeye

football games with them! :-)

Love and prayers to you from this Tennessee gal.

Ann

[Guest guest]

Welcome Annie

I have added you to the location of caregivers list. What part of Tennesee

are you from? We have two other listed members from Tennessee, from

Nashville and Bob from lin.

Kath

Re: Annie - just a suggestion

>

> >

> > Annie-

> >

> > I am trying to catch up on emails and came across that your LO is

> your husband. Just a suggestion, but wanted you to know there is

> also a caringspouses support group. If you type in Lewy Body

> Dementia in a search engine, the LBDCaregivers website will come up.

> Click on it and it will bring up the caregivers home page. To the

> left will be an area saying 'email groups'...click on that and it

> brings up both this group and the Caringspouses group. Click on

> caringspouses group...sign in like you did this group. Keep in mind,

> you are very welcome to stay here. I do know, from other caregivers

> that used to belong to this group that the level of caring is so very

> different from a child to a parent versas a spouse to a spouse. Just

> food for thought.

> >

> > So very sad to hear your husband is so young. My dad started with

> symptoms when he was around 56 or 57 and was diagnosed at 58 with LBD.

> > I know there is a reason for everything, really had trouble

> figuring out this one though. One reason I don't know the whole

> picture, I guess.

> >

> > Wishing you the best life has to offer and I hope life is treating

> you kind.

> >

> > Kind regards - and many hugs-

> > Sandie

> > Des Moines, IA

>

>

> Sandie

> yes, I'm new -joined last week. Got here through the Braintalk

> site so didn't realize there was a spouse site for a few days. I've

> joined but am still 'pending'. But thanks for the suggestion anyway.

> My 56 y.o. husband has probable LBD. He was a military

> dentist/colonel and in late '96 started having a slight tremor in his

> hand (no one likes going to a dentist-much less one with shaking

> hands!:-) He was also having sleep problems (REM & restless leg),

> depression, & myoclonic jerks that HE was aware of but I had been

> seeing some cognitive decline for awhile. After a full workup, which

> proved inconclusive, he was 'allowed' to retire in fall of '97. In

> the ensuing couple of years we bounced around trying to get a DX.

> Finally in spring 2000, a PET scan was consistant with Alzheimers or

> Parkinsons with dementia. We (neuro & I) stressed the PD because my

> husband had repeatedly said he'd commit suicide if he thought he had

> AD. So, while we went down that PD road (meds, support groups etc.)

> neither DX felt just right. Now LBD is being mentioned more often &

> that feels right.

> Spring '03 it was discovered he had a herniated disc after a fall

> and things went south in a hurry-almost completely bedriden, pain

> meds, increased hallucinations, delusions, etc. About this time I

> ended up in the ER one nite with chest pain-ended up being stress

> related reflux but my Dr. insisted on some immediate changes. An

> adult day care 'fit the bill' after he became ambulatory again.

> So things are fairly stable right now. He goes to day care 3 days

> a week, pretty much needs constant supervision, has fluctuating

> cognition, has visual, auditory and tactile hallucinations and

> delusions (we have lots of 'company' especially his parents who

> passed away a couple of years ago) Now THAT was a stressful time-His

> parents passed away 10 weeks apart and in the middle of the two

> funerals our daughter got married! 2 funerals and a wedding -could

> be a movie! :-) Now we have our first grandchild born Dec. 2003

> weighing a whopping 10# 10oz.! So some joy in the middle of the pain.

> A couple of questions. On the 5-7 year prognosis,is that from

> initial symptoms or from DX? I've seen both listed. Also I noticed

> that my hubby tends to walk on his tiptoes when he is more

> confused/agitated. Anyone else encounter this? I do know that any

> physiscal ailment (pain, constipation etc.) greatly increases his

> confusion and agitation.

> Thanks again Sandie for the warm welcome and suggestion. I've been

> to Iowa a couple of times. When we were stationed in North Dakota we

> had some friends who were from Iowa. We traveled with them some to

> Ames and the Amana colonies and were 'forced' to endure Hawkeye

> football games with them! :-)

> Love and prayers to you from this Tennessee gal.

> Ann

>

>

>

> Welcome to LBDcaregivers.

>

>

>

[Guest guest]

-Kath,

Thanks for the welcome. I live in Knoxville(near the Smokey

Mountains/Gatlinburg and Dolly Parton! :-) so I'm about 3 hours east

of Nashville. I've joined the spouses group also but I'll probably

continue to check in here from time to time.

Ann in Tennessee

-- In LBDcaregivers , " Steve & Kathy Ward "

<skward2@r...> wrote:

> Welcome Annie

>

> I have added you to the location of caregivers list. What part of

Tennesee

> are you from? We have two other listed members from Tennessee,

from

> Nashville and Bob from lin.

>

> Kath

> Re: Annie - just a suggestion

>

>

> >

> > >

> > > Annie-

> > >

> > > I am trying to catch up on emails and came across that your LO

is

> > your husband. Just a suggestion, but wanted you to know there is

> > also a caringspouses support group. If you type in Lewy Body

> > Dementia in a search engine, the LBDCaregivers website will come

up.

> > Click on it and it will bring up the caregivers home page. To the

> > left will be an area saying 'email groups'...click on that and it

> > brings up both this group and the Caringspouses group. Click on

> > caringspouses group...sign in like you did this group. Keep in

mind,

> > you are very welcome to stay here. I do know, from other

caregivers

> > that used to belong to this group that the level of caring is so

very

> > different from a child to a parent versas a spouse to a spouse.

Just

> > food for thought.

> > >

> > > So very sad to hear your husband is so young. My dad started

with

> > symptoms when he was around 56 or 57 and was diagnosed at 58 with

LBD.

> > > I know there is a reason for everything, really had trouble

> > figuring out this one though. One reason I don't know the whole

> > picture, I guess.

> > >

> > > Wishing you the best life has to offer and I hope life is

treating

> > you kind.

> > >

> > > Kind regards - and many hugs-

> > > Sandie

> > > Des Moines, IA

> >

> >

> > Sandie

> > yes, I'm new -joined last week. Got here through the Braintalk

> > site so didn't realize there was a spouse site for a few days.

I've

> > joined but am still 'pending'. But thanks for the suggestion

anyway.

> > My 56 y.o. husband has probable LBD. He was a military

> > dentist/colonel and in late '96 started having a slight tremor in

his

> > hand (no one likes going to a dentist-much less one with shaking

> > hands!:-) He was also having sleep problems (REM & restless leg),

> > depression, & myoclonic jerks that HE was aware of but I had been

> > seeing some cognitive decline for awhile. After a full workup,

which

> > proved inconclusive, he was 'allowed' to retire in fall of '97.

In

> > the ensuing couple of years we bounced around trying to get a DX.

> > Finally in spring 2000, a PET scan was consistant with Alzheimers

or

> > Parkinsons with dementia. We (neuro & I) stressed the PD because

my

> > husband had repeatedly said he'd commit suicide if he thought he

had

> > AD. So, while we went down that PD road (meds, support groups

etc.)

> > neither DX felt just right. Now LBD is being mentioned more

often &

> > that feels right.

> > Spring '03 it was discovered he had a herniated disc after a

fall

> > and things went south in a hurry-almost completely bedriden, pain

> > meds, increased hallucinations, delusions, etc. About this time I

> > ended up in the ER one nite with chest pain-ended up being stress

> > related reflux but my Dr. insisted on some immediate changes. An

> > adult day care 'fit the bill' after he became ambulatory again.

> > So things are fairly stable right now. He goes to day care 3

days

> > a week, pretty much needs constant supervision, has fluctuating

> > cognition, has visual, auditory and tactile hallucinations and

> > delusions (we have lots of 'company' especially his parents who

> > passed away a couple of years ago) Now THAT was a stressful time-

His

> > parents passed away 10 weeks apart and in the middle of the two

> > funerals our daughter got married! 2 funerals and a wedding -

could

> > be a movie! :-) Now we have our first grandchild born Dec. 2003

> > weighing a whopping 10# 10oz.! So some joy in the middle of the

pain.

> > A couple of questions. On the 5-7 year prognosis,is that from

> > initial symptoms or from DX? I've seen both listed. Also I

noticed

> > that my hubby tends to walk on his tiptoes when he is more

> > confused/agitated. Anyone else encounter this? I do know that any

> > physiscal ailment (pain, constipation etc.) greatly increases his

> > confusion and agitation.

> > Thanks again Sandie for the warm welcome and suggestion. I've

been

> > to Iowa a couple of times. When we were stationed in North

Dakota we

> > had some friends who were from Iowa. We traveled with them some

to

> > Ames and the Amana colonies and were 'forced' to endure Hawkeye

> > football games with them! :-)

> > Love and prayers to you from this Tennessee gal.

> > Ann

> >

> >

> >

> > Welcome to LBDcaregivers.

> >

> >

> >

[Guest guest]

Ann,

A quick welcome to this group. Glad you found the spouses group.

Just wanted to say that one of the earlies symptoms of my mom was the

REM sleep disturbance. She would actually throw herself out of bed

and on a few occasions, ended up banging her head. It was one of

those symptoms, plus a few others, that I was ignorant of at the time

but now can see the slow progression after the fact.

Hoping you find alll the support you need. I know that the spouses

group is a very fine and active one with lots of love and support.

Sending warm hugs to you in Tennessee,

Betty

> >

> > Annie-

> >

> > I am trying to catch up on emails and came across that your LO is

> your husband. Just a suggestion, but wanted you to know there is

> also a caringspouses support group. If you type in Lewy Body

> Dementia in a search engine, the LBDCaregivers website will come

up.

> Click on it and it will bring up the caregivers home page. To the

> left will be an area saying 'email groups'...click on that and it

> brings up both this group and the Caringspouses group. Click on

> caringspouses group...sign in like you did this group. Keep in

mind,

> you are very welcome to stay here. I do know, from other

caregivers

> that used to belong to this group that the level of caring is so

very

> different from a child to a parent versas a spouse to a spouse.

Just

> food for thought.

> >

> > So very sad to hear your husband is so young. My dad started

with

> symptoms when he was around 56 or 57 and was diagnosed at 58 with

LBD.

> > I know there is a reason for everything, really had trouble

> figuring out this one though. One reason I don't know the whole

> picture, I guess.

> >

> > Wishing you the best life has to offer and I hope life is

treating

> you kind.

> >

> > Kind regards - and many hugs-

> > Sandie

> > Des Moines, IA

>

>

> Sandie

> yes, I'm new -joined last week. Got here through the Braintalk

> site so didn't realize there was a spouse site for a few days.

I've

> joined but am still 'pending'. But thanks for the suggestion

anyway.

> My 56 y.o. husband has probable LBD. He was a military

> dentist/colonel and in late '96 started having a slight tremor in

his

> hand (no one likes going to a dentist-much less one with shaking

> hands!:-) He was also having sleep problems (REM & restless leg),

> depression, & myoclonic jerks that HE was aware of but I had been

> seeing some cognitive decline for awhile. After a full workup,

which

> proved inconclusive, he was 'allowed' to retire in fall of '97. In

> the ensuing couple of years we bounced around trying to get a DX.

> Finally in spring 2000, a PET scan was consistant with Alzheimers

or

> Parkinsons with dementia. We (neuro & I) stressed the PD because

my

> husband had repeatedly said he'd commit suicide if he thought he

had

> AD. So, while we went down that PD road (meds, support groups

etc.)

> neither DX felt just right. Now LBD is being mentioned more often

&

> that feels right.

> Spring '03 it was discovered he had a herniated disc after a fall

> and things went south in a hurry-almost completely bedriden, pain

> meds, increased hallucinations, delusions, etc. About this time I

> ended up in the ER one nite with chest pain-ended up being stress

> related reflux but my Dr. insisted on some immediate changes. An

> adult day care 'fit the bill' after he became ambulatory again.

> So things are fairly stable right now. He goes to day care 3

days

> a week, pretty much needs constant supervision, has fluctuating

> cognition, has visual, auditory and tactile hallucinations and

> delusions (we have lots of 'company' especially his parents who

> passed away a couple of years ago) Now THAT was a stressful time-

His

> parents passed away 10 weeks apart and in the middle of the two

> funerals our daughter got married! 2 funerals and a wedding -could

> be a movie! :-) Now we have our first grandchild born Dec. 2003

> weighing a whopping 10# 10oz.! So some joy in the middle of the

pain.

> A couple of questions. On the 5-7 year prognosis,is that from

> initial symptoms or from DX? I've seen both listed. Also I

noticed

> that my hubby tends to walk on his tiptoes when he is more

> confused/agitated. Anyone else encounter this? I do know that any

> physiscal ailment (pain, constipation etc.) greatly increases his

> confusion and agitation.

> Thanks again Sandie for the warm welcome and suggestion. I've

been

> to Iowa a couple of times. When we were stationed in North Dakota

we

> had some friends who were from Iowa. We traveled with them some to

> Ames and the Amana colonies and were 'forced' to endure Hawkeye

> football games with them! :-)

> Love and prayers to you from this Tennessee gal.

> Ann