New member

[Guest guest]

hi karen nice to have with us keep up the good work! what do you do in the fat blasting i was interesting in it ! Anne Kirch wrote: Hi All:Im .. I love...love Taebo.I work a night time job and have had the hardest time getting back into the groove of things.About 2 weeks ago. I got myself back in the regime. And I have to admit.. the best tape to start back with .. I love "Fat Blasting" for one week I started by doing 1 hour of cardio @ my local gym to get my

endurance up..then for the past week.. I've done 3 days of "Fat Blasting the 2 days of Ab Boot Camp and ended the week with Ultimate Boot Camp. I was so proud of myself. I lost 6 pounds in 2 weeks. Totally flatten my abs and I have more energy then ever.I totally swear by Taebo for working out and reshaping your body. I use to see my sides and see rolls from being out of shape by now. I see a waist line and I can tell the six pack muscles on the side of my tummy almost coming thru..I wanted to say hi to all and say..don't give up. I try to get in 4 days or 5 if I want a great week and taking the weekend free to rest. If anyone has brought any new TAEBO tapes/Dvd they recommend. Let me know. I have Fat Blasting,(my fave) all the BootCamp , The new Cardo FatBlasting, and the originals..Thanks and keep rocking with ...he's the

best....

Yahoo! Groups gets better. Check out the new email design. Plus there’s much more to come.

[Guest guest]

I love it. Its one in which you incorporated the billy bands. Its a lot of core and ab work along with the alot of work for fat blasting and slimming. I love it cause its a great way to start transforming your body and I see a real difference in a week after doing it. Its my favorite. __________________________________________________

[Guest guest]

I love it. Its one in which you incorporated the billy bands. Its a lot of core and ab work along with the alot of work for fat blasting and slimming. I love it cause its a great way to start transforming your body and I see a real difference in a week after doing it. Its my favorite. __________________________________________________

[Guest guest]

I love it. Its one in which you incorporated the billy bands. Its a lot of core and ab work along with the alot of work for fat blasting and slimming. I love it cause its a great way to start transforming your body and I see a real difference in a week after doing it. Its my favorite. __________________________________________________

[Guest guest]

Hi SS Welcome to the place where no one wants to be, but grateful

for it anyway.

I'm one of the moderators - don't know what that means - that you

need to email back to the address to start posting?? If you think of

it - can you forward that message to me? (maybe my text needs

tweaking)

Here are my " welcome links " - that I send to all new members. Glad

you found us.

First & foremost:

NO TRADITIONAL ANTIPSYCHOTICS (e.g. Haldol, Chlorpromazine),

NO BENZODIAZEPINES (e.g. Ativan)

NO ANTICHOLINERGIC DRUGS (e.g. Benadryl, Tylenol PM, Detrol, Enablex)

CAUTION with some ATYPICAL ANTIPSYCHOTICS (e.g. Risperidone,

Zyprexa) - but some are used w/ success (e.g. Seroquel,

Clozaril) " Start Low, Go Slow "

Take a moment to post a possible med. before trying - this board has

an archives section w/ tons & tons of warnings about meds that don't

work for those w/ LBD - they are extremely sensitive to meds!

Read here:

Risperdal & Haldol

Message w/ collection of articles re: above

http://health.groups.yahoo.com/group/LBDcaregivers/message/70932

Dementia With Lewy Bodies: A Review Of Clinical

Benzodiazepines (e.g. Ativan) may negatively affect cognition and

produce sedation, paradoxic agitation and increased risk of falls in

the elderly

http://tinyurl.com/2n54qj

Why such strong feelings about benzos?

Message by , also includes info re: an exception to the no benzo

warning, Klonopin, that has been used with success for RBD (REM

Behavior Disorder) by Dr. Boeve.

http://health.groups.yahoo.com/group/LBDcaregivers/message/61849

Evaluating Meds

Advice from a PharmaD via Lin

http://health.groups.yahoo.com/group/LBDcaregivers/message/75551

Legal Stuff - get it done NOW

http://health.groups.yahoo.com/group/LBDcaregivers/files/

scroll down to this document:

The Business of Dementia.doc

The 'legal' things you need to know about

Top links to important LBD resources (IMHO)

A Must Read by Dr. Bradley Boeve

A Comprehensive Approach to Treatment can Significantly Improve the

Quality of Life of Patients with the Lewy body dementias.

http://www.lewybodydementia.org/AR0504BFB.php

Diagnostic Review & Medicine Management

by Bradley F. Boeve, MD (October 2004) Physicians guide to diagnosing

and treating DLB/LBD. Includes recommended dosages.

http://www.lewybodydementia.org/Boevelink.php

*** 2006, September 08 -- Lewy body dementia

From MayoClinic.com, Special to CNN.com. Norma says, " ...this is the

most detailed, accurate information I've ever read about LBD. I think

it should be sent to all new caregivers AND doctors who aren't clear.

Thoughts everyone? " Keli says, " Definately yes!!! This is very

informative yet not overwhelming. It can easily be shared with

others. I intend to have my husband and children read it, and

hopefully my moms dr's as well. Very good information. "

http://www.cnn.com/HEALTH/library/DS/00795.html

LBD Brochure

(to print use legal size paper)

http://www.lewybodydementia.org/docs/LBDAbroch_webLGL.pdf

" Difficulties in Diagnosing Lewy Body Dementia "

by T. MD

http://www.youtube.com/LBDAtv

Live Chat Event with Gomperts, MD

Dr. Gomperts answered your questions in this Q & A session from March

2007 http://www.lewybodydementia.org/docs/gomperts_transcript.pdf

If your LO hasn't been diagnosed yet, make sure they get a FDG-PET

assessment.

http://interactive.snm.org/index.cfm?PageID=7405 & RPID=627

And a summary of what's on this board:

Main board:

http://groups.yahoo.com/group/LBDcaregivers/

(Read your emails via the board vs. your `in box'. And get into all

the different sections that are available on the website. Search

archived messages here.)

Links Section:

http://health.groups.yahoo.com/group/LBDcaregivers/links

(Tons of links that is continuously a `work in progress' – all these

links are useful to the caregiver. A variety of categories neatly

organized into folders – what topic are you interested in? Find the

folder and within it find numerous links to other websites for

additional information.)

Files Section:

http://health.groups.yahoo.com/group/LBDcaregivers/files/

(Read other caregiver's stories, read about the good & bad drugs

here, print a " companion card " from here (cards to hand out in public

areas about your LO's behavior), find the locations of other

caregivers who are possibility living in your immediate area, FAQ

document, LBD Phases by LBD Caring Spouses, etc.)

Database Section:

http://health.groups.yahoo.com/group/LBDcaregivers/database

(Suggested reading, learn the common denominators about our loved

ones, medical referrals, nursing home referrals, bibliography of LBD

in literature and film, etc.)

Photos Section:

http://health.ph.groups.yahoo.com/group/LBDcaregivers/photos

(Put a face to a name.)

Polls Section:

http://health.groups.yahoo.com/group/LBDcaregivers/polls

(Several polls running re: LBD)

>

> Hello,

> I was told in an email to email back to this address so that I can

start posting messages on the LBD caregivers group.

> My sister and I are caring for our 84-year old dad with LBD and I

look forward to insights and advice and support from this group.

> Thank you.

> SS

>

[Guest guest]

Hi,

  Im very sorry to hear about your father.Welcome, Im sorry you have to be here

but grateful that you are.You will find many wonderful caring people here and

the knowledge to be gained here is amazing.I dont have nearly the good advice as

others here so I will leave most of that to them but sending  you a heartfelt

and warm welcome.from one stressed out scatter brained (but still going strong),

caregiver.   Ron

New Member

Hello,

I was told in an email to email back to this address so that I can start posting

messages on the LBD caregivers group.

My sister and I are caring for our 84-year old dad with LBD and I look forward

to insights and advice and support from this group.

Thank you.

SS

[Guest guest]

, Maybe SS is a member of another forum and someone suggested

that she join this family of caregivers. I think I read her story and

almost suggested that she try us here.

Lorraine

> >

> > Hello,

> > I was told in an email to email back to this address so that I can

> start posting messages on the LBD caregivers group.

> > My sister and I are caring for our 84-year old dad with LBD and I

> look forward to insights and advice and support from this group.

> > Thank you.

> > SS

> >

>

[Guest guest]

Lorraine - I get ya! She was given the email outside this group and

emailed to become a member... Maybe you're right. THANKS

>

> , Maybe SS is a member of another forum and someone suggested

> that she join this family of caregivers. I think I read her story and

> almost suggested that she try us here.

> Lorraine

[Guest guest]

Hi Kat,

My mom is 74 years old, and we think this whole thing started about 7 years

ago.  We all felt guilty about not recognizing the signs sooner, but since I

joined this group, I realize that this is a common thing - it's hard to see the

soft signs, and it was hard to accept that something was wrong with this little

woman who survived the Holocaust, who scrimped and saved what my father earned

(folks are divorced for about 20 years - a whole different story), cooked and

cleaned constantly, and raised 3 kids who do good things with their lives.   She

had few extravagences in her life - they were not that important to her, and

money was always an issue.  She always put her kids and grandkids first.... they

were and still are her pride and joy.  She was not a perfect person, and of

course there were lots of guilt trips along the way (all that stuff about the

Jewish moms are true!) She has 3 siblings, but is closest to her sister who

never married.  There

are too many family dymanics to go into, but there were, looking back, lots of

signs and we just didn't realize them....  Because of all these dynamics, lots

of things that should have been done (all the elder care stuff) were not done. 

We did try, but Mom was resistant, and my aunt backed her up.  We proposed doing

this years ago, when my husband's parents took care of all the elder care

stuff.  In the last year or two there have been things we were able to take care

of, but certain things will be useless to attempt.   We will have to deal.

 

My mom loves her home.  It is not in a convenient location for us, but at this

point, with her inability to learn where things are in new places, we will all

pitch in to keep her at home, and bring in help  when the going gets rougher. 

Right now, my aunt is the primary caregiver (she cared for my grandparents too) 

- more family dynamics, too detailed to go into.  I live about 45 minutes away

(without traffic), and one brother is a little over an hour away (again, in no

traffic).  The other brother lives out of town.  He does come in to visit

periodically, but usually gives us very little notice, and I often hear about

that indirectly.

 

My mom was given Fosamax years ago for osteoporosis, and not too long after

that, she was having lots of stomach issues that have never gone away. 

Eventually the GI doc, who couldn't find anything wrong (even with all the

tests) figured she was depressed and put her on the Lexapro.  OH BOY WAS THAT A

MISTAKE!  After a couple weeks on that, we discontinued it (I don't remember if

we had her decrease the dosage herself, or went cold turkey - at that time she

was still able to take meds herself properly).  She returned to her usual

self... but the stomach issues never went away.  Over the last year or so, she

complains about it less.  I believe the Fosamax was responsible for her stomach

issues, but now I'm wondering if Lewy has anything to do with that.

 

I occasionally get a migraine - I take 2 advil (Excedrin migraine only works

occasionally) put a hot washcloth on my forehead, and try to take a nap.

 

Sorry to go on..... it was very cathartic to write.

Regards,

Helene

 

 

Subject: Re: Re: New Member

To: LBDcaregivers

Date: Thursday, August 28, 2008, 7:33 PM

Thanks for the welcome, Helene.

I took Lexapro to try to prevent my migraines.  I couldn't eat or sleep and was

nauseas all the time.  I only lasted a couple weeks.  The weight loss was great

though :-)

The hallucinations my Mom has are like the ones your Mom had on meds.  My Moms

don't go away.  They just change substance and intensity.  Right now she is on

her 2nd week of new meds.  I have to figure out how to distract her tonight.  We

just got home from daycare/work.  She thinks her boyfriend is coming and wants

to get ready.  Gotta go deal.

I would really like to know your situation.  It's overwhelming trying to keep up

with all the conversations and situations.

Kat

Caregiver for Jane, Mom, 86,  survivor of brain stem stroke 2/06, diagnosed 3/08

LBD

Re: New Member

Hi Kat,

When my Mom was having more stomach issues a few years ago, a GI doc

gave her Lexapro, b/c he thought she was depressed. Well, the

hallucinations she had were incredible. She was seeing people, the

couch was breathing, etc. etc. We stopped those meds immediately,

and the hallucinations went away.

Mom is now, in addition to some blood pressure meds, on prozac,

aricept and namenda. Would love to find something that could help

with the tremors in her arms and hands. She used to be such a great

cook, and now it's a labor to feed herself.

Helene

>

> Hi All,

> I have kinda been observing how things work. Here is my intro:

> My Mom has been seeing a Neurologist since her hemmoraghic brain

stem

> stroke in Feb '06. Zolpidem was given during her stay in rehab for

a

> week after the stroke. She was misdiagnosed with side effects from

> medicines and low vision (which causes hallucinations) . She is

also

> dealing with double vision and balance issues from the stroke. 20

> months after the stroke, she had learned to walk and do the stairs

> both with assistance. At 86 years young, she told her

> Neurologist, " I'm an old lady now. I'm 86 you know. " Clonazepam

was

> considered the wonder drug that helped control her anxiety and

> uncontrollable movements of her left leg allowing her to walk with

> little assistance. She has had care 24/7 since her stroke and

thinks

> I hold her back by not allowing her to walk by herself, " And when

are

> you going to let these girls (caregivers) go and leave me alone? "

> In 10/07 her complaint was a man singing in her head. He didn't

have

> a bad voice. He just sang the same songs over and over.

Neurologist

> started with Seroquel then switched to Zyprexa. Mom had problems

> walking on these meds and was trying to perform in rehab for her

> stroke in order to qualify for more rehab. I chose rehab over the

> singing in the head. At this time we could explain away the

> hallucinations. She had several bouts with pneumonia all cured at

> home with antibiotics. Levaquin was ruled a contributor to her

drug

> induced hallucinations. A neuropsych eval in 2/08 showed lewy body

> disorder without dementia. Neurologist put her on Namenda in

4/08.

> She suggested a Geriatric Psychiatrist, who took her off Namenda

and

> put her on Abilify and Exelon. No mention of the Clonazepam by the

> Psychiatrist. I worked to get the dosage up on the Clonazepam to

> help with the tremors in her left shoulder and uncontrollable

kicking

> of her left leg which seemed to be getting stiffer and she

complained

> that her foot was stuck on the floor (both stroke or so I

thought).

> I then started the Abilify. I received a call at work that an

> ambulance had been called by daycare because my Mother was

> unresponsive. The Psychiatrist told me no way the Abilify would

> affect her walking. ER said she was over medicated. Hmmmm

> Stop Abilify; lower Clonazepam; call Psychiatrist. He pats me on

the

> back. Now he says Clonazepam is not good for someone

hallucinating.

> Thanks. Neurologist confirms I should follow the Psychiatrist now

> that she is diagnosed. Note to self: time to accept clinical

> diagnosis of LBD any more proof will come in symptoms...until death.

> Today she is on her second week without Clonazepam. I always hated

> that drug. It's not covered by any insurance. Look forward.

> Prozac, Abilify, Exelon are the mix of the moment.

> Kat

> Caregiver for Jane, Mother, 86, diagnosed 3/08 LBD

>

[Guest guest]

Hi Kat,

My mom is 74 years old, and we think this whole thing started about 7 years

ago.  We all felt guilty about not recognizing the signs sooner, but since I

joined this group, I realize that this is a common thing - it's hard to see the

soft signs, and it was hard to accept that something was wrong with this little

woman who survived the Holocaust, who scrimped and saved what my father earned

(folks are divorced for about 20 years - a whole different story), cooked and

cleaned constantly, and raised 3 kids who do good things with their lives.   She

had few extravagences in her life - they were not that important to her, and

money was always an issue.  She always put her kids and grandkids first.... they

were and still are her pride and joy.  She was not a perfect person, and of

course there were lots of guilt trips along the way (all that stuff about the

Jewish moms are true!) She has 3 siblings, but is closest to her sister who

never married.  There

are too many family dymanics to go into, but there were, looking back, lots of

signs and we just didn't realize them....  Because of all these dynamics, lots

of things that should have been done (all the elder care stuff) were not done. 

We did try, but Mom was resistant, and my aunt backed her up.  We proposed doing

this years ago, when my husband's parents took care of all the elder care

stuff.  In the last year or two there have been things we were able to take care

of, but certain things will be useless to attempt.   We will have to deal.

 

My mom loves her home.  It is not in a convenient location for us, but at this

point, with her inability to learn where things are in new places, we will all

pitch in to keep her at home, and bring in help  when the going gets rougher. 

Right now, my aunt is the primary caregiver (she cared for my grandparents too) 

- more family dynamics, too detailed to go into.  I live about 45 minutes away

(without traffic), and one brother is a little over an hour away (again, in no

traffic).  The other brother lives out of town.  He does come in to visit

periodically, but usually gives us very little notice, and I often hear about

that indirectly.

 

My mom was given Fosamax years ago for osteoporosis, and not too long after

that, she was having lots of stomach issues that have never gone away. 

Eventually the GI doc, who couldn't find anything wrong (even with all the

tests) figured she was depressed and put her on the Lexapro.  OH BOY WAS THAT A

MISTAKE!  After a couple weeks on that, we discontinued it (I don't remember if

we had her decrease the dosage herself, or went cold turkey - at that time she

was still able to take meds herself properly).  She returned to her usual

self... but the stomach issues never went away.  Over the last year or so, she

complains about it less.  I believe the Fosamax was responsible for her stomach

issues, but now I'm wondering if Lewy has anything to do with that.

 

I occasionally get a migraine - I take 2 advil (Excedrin migraine only works

occasionally) put a hot washcloth on my forehead, and try to take a nap.

 

Sorry to go on..... it was very cathartic to write.

Regards,

Helene

 

 

Subject: Re: Re: New Member

To: LBDcaregivers

Date: Thursday, August 28, 2008, 7:33 PM

Thanks for the welcome, Helene.

I took Lexapro to try to prevent my migraines.  I couldn't eat or sleep and was

nauseas all the time.  I only lasted a couple weeks.  The weight loss was great

though :-)

The hallucinations my Mom has are like the ones your Mom had on meds.  My Moms

don't go away.  They just change substance and intensity.  Right now she is on

her 2nd week of new meds.  I have to figure out how to distract her tonight.  We

just got home from daycare/work.  She thinks her boyfriend is coming and wants

to get ready.  Gotta go deal.

I would really like to know your situation.  It's overwhelming trying to keep up

with all the conversations and situations.

Kat

Caregiver for Jane, Mom, 86,  survivor of brain stem stroke 2/06, diagnosed 3/08

LBD

Re: New Member

Hi Kat,

When my Mom was having more stomach issues a few years ago, a GI doc

gave her Lexapro, b/c he thought she was depressed. Well, the

hallucinations she had were incredible. She was seeing people, the

couch was breathing, etc. etc. We stopped those meds immediately,

and the hallucinations went away.

Mom is now, in addition to some blood pressure meds, on prozac,

aricept and namenda. Would love to find something that could help

with the tremors in her arms and hands. She used to be such a great

cook, and now it's a labor to feed herself.

Helene

>

> Hi All,

> I have kinda been observing how things work. Here is my intro:

> My Mom has been seeing a Neurologist since her hemmoraghic brain

stem

> stroke in Feb '06. Zolpidem was given during her stay in rehab for

a

> week after the stroke. She was misdiagnosed with side effects from

> medicines and low vision (which causes hallucinations) . She is

also

> dealing with double vision and balance issues from the stroke. 20

> months after the stroke, she had learned to walk and do the stairs

> both with assistance. At 86 years young, she told her

> Neurologist, " I'm an old lady now. I'm 86 you know. " Clonazepam

was

> considered the wonder drug that helped control her anxiety and

> uncontrollable movements of her left leg allowing her to walk with

> little assistance. She has had care 24/7 since her stroke and

thinks

> I hold her back by not allowing her to walk by herself, " And when

are

> you going to let these girls (caregivers) go and leave me alone? "

> In 10/07 her complaint was a man singing in her head. He didn't

have

> a bad voice. He just sang the same songs over and over.

Neurologist

> started with Seroquel then switched to Zyprexa. Mom had problems

> walking on these meds and was trying to perform in rehab for her

> stroke in order to qualify for more rehab. I chose rehab over the

> singing in the head. At this time we could explain away the

> hallucinations. She had several bouts with pneumonia all cured at

> home with antibiotics. Levaquin was ruled a contributor to her

drug

> induced hallucinations. A neuropsych eval in 2/08 showed lewy body

> disorder without dementia. Neurologist put her on Namenda in

4/08.

> She suggested a Geriatric Psychiatrist, who took her off Namenda

and

> put her on Abilify and Exelon. No mention of the Clonazepam by the

> Psychiatrist. I worked to get the dosage up on the Clonazepam to

> help with the tremors in her left shoulder and uncontrollable

kicking

> of her left leg which seemed to be getting stiffer and she

complained

> that her foot was stuck on the floor (both stroke or so I

thought).

> I then started the Abilify. I received a call at work that an

> ambulance had been called by daycare because my Mother was

> unresponsive. The Psychiatrist told me no way the Abilify would

> affect her walking. ER said she was over medicated. Hmmmm

> Stop Abilify; lower Clonazepam; call Psychiatrist. He pats me on

the

> back. Now he says Clonazepam is not good for someone

hallucinating.

> Thanks. Neurologist confirms I should follow the Psychiatrist now

> that she is diagnosed. Note to self: time to accept clinical

> diagnosis of LBD any more proof will come in symptoms...until death.

> Today she is on her second week without Clonazepam. I always hated

> that drug. It's not covered by any insurance. Look forward.

> Prozac, Abilify, Exelon are the mix of the moment.

> Kat

> Caregiver for Jane, Mother, 86, diagnosed 3/08 LBD

>

[Guest guest]

thanks for the welcome and I'm happy to listen sometimes its the best I can

do

Heidi

Mz T sun conure

ie aka bUg BuG tiel

http://shops.ittybittybirdiebites.com/Heidi/

www.mywellnessoils.com/heidikeitz.htm

That you may retain your self respect,it is better

to displease the people by doing what

you know is right,than to temporarily please

them by doing what you know is wrong

J.A. Boetcker

Re: new member

> Welcome Heidi, I'm glad you're here .

>

> Heidi is indeed a close friend of mine - so close in fact that I file her

> emails in my " Family " folder - lol. She gets to listen to me talk about

> my

> mom both on the phone and in emails, lucky girl .

>

> His,

> Sherry

> www.owly.net

> daughter of , (mis?)diagnosed with AD in 2005, descent slowed by

> Aricept; diagnosed with LBD March 2008, in a wonderful NH 1/2 mile from my

> house. We're learning to live with Lewy...

>

> ----- Original Message -----

>

>> I am a close friend of Sherry's and she has been letting me know how

>> things are going with her mom so I asked if she thought I could join

>> the group as well.I am an LPN currently working in pediatric home

>> care , have had years working in nursing homes both as a certified

>> aide and as a liscenced nurse.There is a possibility that I my go

>> back to geriatric nursing in the future and thought it would be a

>> good thing to be up to date as it were on diseases, etc of the

>> elderly.For the most part I'll probably be a lurker at least for a

>> bit,working nights and dealing with fibromyalgia sometimes all I do

>> is get my emails and skim them til I have time to read,lately I have

>> had alot of stress in my life so if I focus on others problems maybe

>> I can calm down a bit too.

>> So thanks for letting me be apart of this group and please don't let

>> me being in the medical profession worry you ,I'm not here to

>> judge,tell on you or anything like that ,I'm here to learn and offer

>> what support I can

>

>

> ------------------------------------

>

> Welcome to LBDcaregivers.

>

>

[Guest guest]

thanks for the welcome and I'm happy to listen sometimes its the best I can

do

Heidi

Mz T sun conure

ie aka bUg BuG tiel

http://shops.ittybittybirdiebites.com/Heidi/

www.mywellnessoils.com/heidikeitz.htm

That you may retain your self respect,it is better

to displease the people by doing what

you know is right,than to temporarily please

them by doing what you know is wrong

J.A. Boetcker

Re: new member

> Welcome Heidi, I'm glad you're here .

>

> Heidi is indeed a close friend of mine - so close in fact that I file her

> emails in my " Family " folder - lol. She gets to listen to me talk about

> my

> mom both on the phone and in emails, lucky girl .

>

> His,

> Sherry

> www.owly.net

> daughter of , (mis?)diagnosed with AD in 2005, descent slowed by

> Aricept; diagnosed with LBD March 2008, in a wonderful NH 1/2 mile from my

> house. We're learning to live with Lewy...

>

> ----- Original Message -----

>

>> I am a close friend of Sherry's and she has been letting me know how

>> things are going with her mom so I asked if she thought I could join

>> the group as well.I am an LPN currently working in pediatric home

>> care , have had years working in nursing homes both as a certified

>> aide and as a liscenced nurse.There is a possibility that I my go

>> back to geriatric nursing in the future and thought it would be a

>> good thing to be up to date as it were on diseases, etc of the

>> elderly.For the most part I'll probably be a lurker at least for a

>> bit,working nights and dealing with fibromyalgia sometimes all I do

>> is get my emails and skim them til I have time to read,lately I have

>> had alot of stress in my life so if I focus on others problems maybe

>> I can calm down a bit too.

>> So thanks for letting me be apart of this group and please don't let

>> me being in the medical profession worry you ,I'm not here to

>> judge,tell on you or anything like that ,I'm here to learn and offer

>> what support I can

>

>

> ------------------------------------

>

> Welcome to LBDcaregivers.

>

>

[Guest guest]

Hi, Laurie!

It sounds like you are embarking on an internship you never wanted, but

which will serve you very well in the years to come. Our social worker from

the hospice told me the other day that her Dad has LBD. My heart broke for

her but, at the same time, I was able to relate to her in a way that I would

not have been able to with another social worker. I am sure she brings a

level of insight and compassion to her job that can only come from life's

experience and I am equally sure that you will be doing the same.

Are you anywhere near a university or teaching hospital? We got the best

answers from our neurologist at Beth Israel in Manhattan who has a movement

disorders specialty.

I now know that depression is one of the first symptoms of LBD. We missed

that one because Mom's illness appears to have started slightly before my

Dad's death. She was also falling unexpectedly, stepping off curbs, etc.

and we attributed that to a long standing diagnosis of Meniere's Disease.

We missed almost all of the first warning signs, but they are all clear as

day when looking back. I don't know how I managed to excuse so many of them

away as something else, but I never heard of LBD until 1 year ago. In

hindsight, I believe Mom may have had LBD since as long ago as 2000.

Again, I was shocked by your Mom's age. I'm guessing you are close in age

to my daughter who has been indispensable to me in caring for my Mom. I'm

so sorry that either of you has to deal with this at such a young age.

Gladys

-- new member

Greetings,

I am writing here because my mother was given a preliminary diagnosis of LBD

She is just 58 as of a few weeks ago. She lives with my father, I am 20

min away and my brother is 3 hours away. She started with hearing voices in

the house, and thinking the house was tapped. (backing up I honestly

believe she has undiagnosed and untreated depression since my birth) She

than went on to lose words in her sentences. She has been on abilify to

take care of the psychosis, and now that we are thinking LBD, we are

thinking it hass hastened the parkonisms that she has now. I am going to

talk to her neurologist on monday. He changed her to seroquel, but I am

wondering if we should not scale it back or try to stop it for awhile. She

has been at the same job for 38 years. They had to reduce her job to

bagging groceries from stocking shelves. We found out yesterday she is not

doing that well now. This has all been over a year and a half that the

psychosis started(crisis) and about 3 years since she started making small

comments about the house being bugged and paranoia. I am almost done my

degree in mental health and human services, and a minor in geriatric human

services. Just in time I guess, ugg!

She was still driving as of yesterday, but I am worried about it now. I am

worried she will not beable to make a judgement call. We had an EEG with

major slowing in the brain areas, we are having an MRI next week (we had on

last march showing no changes), we are also going to see a neuropsych and

having a PET??? We are in Maine, and I am looking for a geriatric

specialist. I am not sure that is even the way to go.

Thank you all for being here, and also thank you for listening to this.

Laurie French

" There is much more to rescue than handling the dog. There are calls to be

made, miles to drive, paperwork to fill out, records to keep. It all costs

money. " ~Laurie French

For animals needing homes: www.petfinder.com

www.neorescue.net

http://www.mastiffrescue.org/

_________________________________________________________________

See how Windows connects the people, information, and fun that are part of

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[Guest guest]

Hello Aspire! I'm so glad to have found this resource - I'm a newlywed to a man

I've long suspected has AS or HFA - he's a genius when it comes to building

instruments and playing music...literally anything he picks up turns to gold or

sounds like an angel is playing it. However, he is very emotionally erratic.

When we first met, he cried several times over seemingly mild events and I

chalked it up to being a textbook sensitive poet, but after we got married I

noticed a lot of those emotional moments became more explosive and evolved into

temper tantrums (even hiding in a closet a couple times). Any time he senses

confrontation, he completely freaks out...even if it is normal discussions about

things. At this point, I'm totally exhausted and have essentially allowed myself

to become a caretaker. He's fine when he is at his shop making guitars, but

every other aspect of his life is unmanaged.

He is 26 (I am 29), and has severe anxiety in large groups or crowds to the

point of having nervous breakdowns and panic attacks, and tends to be very

abrupt and rude to people he doesn't know. Moreover, he lived with his parents

(and allowed them to manage his life) until we got married, which makes me think

a lot of his behavioral issues are things that simply got exacerbated by his

parents micromanaging his world. I'm left feeling very frustrated and at my

breaking point. I married him knowing I would be committing to him for life, so

I am not looking for a way out by any means, but I could definitely use some

advice on how to tackle issues like discussing finances (he throws away money

rapidly and we're down to my bank account as the initial place where money goes

so he doesn't spend rent on guitar supplies), and dealing with emotional

outbursts. I've even moved halfway across the country to Tulsa to make his world

less " crowded " so he could focus on what he's good at...leaving a great job and

my whole family behind.

Sorry this is so long! My name is Danica. Thank you so much for reading and I'm

looking forward to new supportive friendships.

[Guest guest]

Hi Danica.....

Welcome to Aspires....seems like what you have said is true of a lot of people

who meet someone who has AS/HFA only to marry them and find out that things

aren't quite what they seemed to be from the getgo.

I didn't have temper tantrums like other fellow AS folk and such. However, I

struggled nonetheless in my last relationship before my current one. My

then-girlfriend would have told anyone that I seemed like this really incredible

man when she first met met. But things got worse when we started living

together. For instance, I would not seemingly know what to do if she got sick

(basic things that people should know what to do).

I was " there " but not " totally present " . I am grateful and thankful to this day

she chose to end her relationship with me, because it gave me the freedom and

time I needed to learn to adapt to living with AS/HFA. So, it's made me so much

more successful to where I am now.

Sounds like to me that social skills may be an issue here. Social skills can be

a challenge for many people with AS, and I've gotten a lot better over time (and

will soon be mentoring someone who was once where I was with regard to social

skills).

You wrote, " Moreover, he lived with his parents (and allowed them to manage his

life) until we got married, which makes me think a lot of his behavioral issues

are things that simply got exacerbated by his parents micromanaging his world.

I'm left feeling very frustrated and at my breaking point. " I think this is

true, and I lived with my mom until I was 25, then lived with her for a year

after my divorce was official.

I agree with you with regard to his behavioral issues. Because he hasn't been

able to live independently, he hasn't developed socially to the point where you

are. This explains why you feel as you do, because you are much further along

developmentally than he is (at least in my view).

I am hopeful that he will be able to get the help he needs through a counselor

or therapist who specializes in working with folks who have AS/HFA. I live in

SE Tennessee and do not know of anyone in your area period. You might want to

consider asking some of the social service agencies in your area, since Tulsa is

a good, mid-sized city.

Hope this helps....

>

> Hello Aspire! I'm so glad to have found this resource - I'm a newlywed to a

man I've long suspected has AS or HFA - he's a genius when it comes to building

instruments and playing music...literally anything he picks up turns to gold or

sounds like an angel is playing it. However, he is very emotionally erratic.

When we first met, he cried several times over seemingly mild events and I

chalked it up to being a textbook sensitive poet, but after we got married I

noticed a lot of those emotional moments became more explosive and evolved into

temper tantrums (even hiding in a closet a couple times). Any time he senses

confrontation, he completely freaks out...even if it is normal discussions about

things. At this point, I'm totally exhausted and have essentially allowed myself

to become a caretaker. He's fine when he is at his shop making guitars, but

every other aspect of his life is unmanaged.

>

> He is 26 (I am 29), and has severe anxiety in large groups or crowds to the

point of having nervous breakdowns and panic attacks, and tends to be very

abrupt and rude to people he doesn't know. Moreover, he lived with his parents

(and allowed them to manage his life) until we got married, which makes me think

a lot of his behavioral issues are things that simply got exacerbated by his

parents micromanaging his world. I'm left feeling very frustrated and at my

breaking point. I married him knowing I would be committing to him for life, so

I am not looking for a way out by any means, but I could definitely use some

advice on how to tackle issues like discussing finances (he throws away money

rapidly and we're down to my bank account as the initial place where money goes

so he doesn't spend rent on guitar supplies), and dealing with emotional

outbursts. I've even moved halfway across the country to Tulsa to make his world

less " crowded " so he could focus on what he's good at...leaving a great job and

my whole family behind.

>

> Sorry this is so long! My name is Danica. Thank you so much for reading and

I'm looking forward to new supportive friendships.

>

[Guest guest]

To be more specific, we have a long distance relationship right now and she's coming here in August- Ill see her every weekend then. But I feel that the problem is a bit deeper, she often is completely rude, and when I say ''are you excited to come here'' she says that she's more excited to her book than getting her- which kinda hurts. And she seems to be angry at the world, or people, for being phony, and pretending like their loners while she's the original loner. She also made reference that I'm such a person and thus treats me like i'm a stranger all of a sudden. She was really happy here, but now she makes reference to that she might be happier alone then with other people. I really love her but I don't know what do with that sometimes.To: aspires-relationships From: madeinengland333@...Date: Thu, 23 Jun 2011 20:56:56 -0400Subject: Re: Re: New Member

Hi C,

What kind of problems are you referring to..personal, intimate or relating or temperament issues maybe?

You don't need to be ultra specific but a broad idea would be helpful, although I may not be the person most able to help ..maybe a member who is female and AS themselves may be better at answering your query ,

Hazel married to AS husband TC for 32+ years

> Dear fellow aspires, > > > So I'm engaged to a most beautiful woman. I really love her and I mean it when I say I'll do anything for her. That doesn't mean however that I have encountered some difficulty. I don't want to say to many personal stuff but do any of you have any tips for a spouse encountering some difficulty with his beloved woman, who has asperger syndrome?> > > regards,> > C.>