Introduction

[Guest guest]

In a message dated 6/9/01 10:37:26 AM Central Daylight Time,

avonleajules1@... writes:

> Hello! I'm , 23, and a graduate student in

> education. I'm new to this. My husband and I were

> doing tae bo off and on, but we've just started a five

>

Welcome, ! Congrats to you and hubby for starting a 5 day routine.

This is a great group, I'm sure you'll fit right in here! Which tapes do

you have?

Jenni

[Guest guest]

- welcome!

How wonderful to have a 'professional' join us! I'd be very careful not to

reveal your location .... you could be over-whelmed with new residents!!

I'm in the UK. My dad died to LBD in Oct 2002. This group became my life

blood. You will find SO much help here.

Sleep disturbance is a huge part of living with Lewy. Conventional, routine

drugs seem to have the adverse effects sometimes. Please I beg you don't

ever use any benzodiazepine drug - they are killers to LBD sufferers. My dad

had massive swings from insomnia to chronic fatigue. He slept better when

the radio was on. It is very difficult to prescribe for ... but I am certain

someone here will help you. Thank you for all you are doing to provide care

for these sufferers.

Sally

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[Guest guest]

Hello.....I have that problem with my mother in bursts...(usually three days

before a new or full moon) .......after trying ristoral (did nothing), trazadone

(she slept but there were too many side effects to her mobility and function to

continue it) that after all that, we when we were once again caught in another

all niter we doubled the ambien to 20mg (for a 105 lb person)...then it worked

as it should have...HOWEVER...we only do this on the second nite where there is

no sleep ( or little ) and the difference between dementia and exhaustion

blurs....we have found that a second dose of ambien on a successive nite is not

effective and the recovery time for her mobility and function is 3

days...therefore we use it only once a week if necessary and we wait a minimum

of 48 hours if we need a second dose (this has happened only twice since last

July).........This method also caused a conflict with one doctor and about that

time I found a new doctor for her

that had more geriatric patients and he allowed us this option but keeps an eye

on our refills...we have NEVER needed more than half of the standard 30 day

supply

in any 30 day period......it works for us......good luck....Tom G

introduction

Hello. I am a geriatric social worker and have a

small group home for people with Dementia. I have a

new resident with LBD - a delightful woman. Her

doctor has her on 10 mg of Ambien for sleep, but as

her children told us, it doesn't work. She has no

trouble falling asleep, but wakes up every hour and

gets up. About 3am she may sleep for two or three

hours. Being a small home we can safely accommodate

all kinds of sleeping patterns - people get up have

tea, sit with the caregiver, but I am afraid with her

that she is simply not getting enough good sleep. She

is active and rarely naps during the day, although she

will rest with an old movie on.

My aim is, obviously, the quality of her life and

health.

Does anyone have any suggestion about how to deal with

the sleep issue or any other medications or approaches

that may help. I don't want to see her continue on

Ambien since it doesn't seem to be working that well

and will only make her more drowsy and at more risk

for falls.

Any thoughts would be greatly appreciated.

Welcome to LBDcaregivers.

------------------------------------------------------------------------------

[Guest guest]

Hi ,

My dad had LBD and while at home our family practioner had him on sleeping

medication.

Yet every time my dad was admitted to hospital these sleeping medications were

withdrawn - and with good results. They'd re-boot ALL of his medication and

re-introduce it all slowly to a monitored amount and then send him home.

Usually though in the home environment it would all eventually break down again,

I think we had a clash between GP being called out for periods of agitation in

the night and then Consultant seeing my dad in the daytime.....obviously when

his night-time 'episodes' were bad we'd resort to anything, for us and for him,

but in the cold light of day our Consultant couldn't quite understand why the

sleep medication was necessary - Lewy Body being so fluctuating my dad would

have a night of severe agitation followed by a day of relative calm.....

Of all the drugs my dad was prescribed for LBD we had best results from Exelon.

This regulated the hallucinatory side of things and in turn made him sleep in a

more natural fashion at night. But eventually all the drugs sort of out-lived

their usefulness. My dad passed away march 21st - 3 years after diagnosis.

I would have no hesitation in withdrawing the Ambien if it is ok for your

patient to get up and wander around in a monitored environment. The only reason

my dad was given sleeping medication at home was both for his own sake in that

if he was up in the night he was usually also agitated and hallucinatory, and

for my mums sake as at 77 years old and his main carer she needed to know he

would sleep so that SHE could rest. My dad also went through sleep patterns

where he went into many deep and un-natural sleeps, sometimes lasting from 24 -

48 hour stretches, this provided it's own complications, with LBD nothing ever

stays the same for very long.

It's very refreshing to hear of a professional like yourself questioning extra

medication - Like said I would keep your location quiet or you WILL be

innundated with new residents!

It's people like you who restore our faith in the system! It sounds like your

doing a fantastic job, wish there were more out there like you.

Kathleen - Scotland.

introduction

Hello. I am a geriatric social worker and have a

small group home for people with Dementia. I have a

new resident with LBD - a delightful woman. Her

doctor has her on 10 mg of Ambien for sleep, but as

her children told us, it doesn't work. She has no

trouble falling asleep, but wakes up every hour and

gets up. About 3am she may sleep for two or three

hours. Being a small home we can safely accommodate

all kinds of sleeping patterns - people get up have

tea, sit with the caregiver, but I am afraid with her

that she is simply not getting enough good sleep. She

is active and rarely naps during the day, although she

will rest with an old movie on.

My aim is, obviously, the quality of her life and

health.

Does anyone have any suggestion about how to deal with

the sleep issue or any other medications or approaches

that may help. I don't want to see her continue on

Ambien since it doesn't seem to be working that well

and will only make her more drowsy and at more risk

for falls.

Any thoughts would be greatly appreciated.

Welcome to LBDcaregivers.

------------------------------------------------------------------------------

[Guest guest]

,

CONGRATULATIONS HUGS AND MORE HUGS, you are an angel someone who is willing to

go the extra mile to help those with LBD, so if no one else has appreciated you,

i and the others here in our lbd family do!!!!!

my dad has sleep issues as well, he is also suffering what i call rbd restless

body disease, where it is difficult for him to sleep and he is all over the bed,

sometimes even screaming blood curdling screams in his sleep, or yelling out in

his sleep . he takes 100 mg of zoloft but in the daytime (lunch) and that has

seemed to ease his rbd and let him sleep better.

my dads lbd medications were exelon and namenda both twice a day, until his

orthostatic bp kept getting dangerously low. with both of those medications he

seemed to slow the progression of the disease quite a bit.

dad has many falls, he seems to fall to the right side more than his left. that

was his first clue of lbd was the gait and falls. fortunately he doesnt realize

he is falling and doesnt fight it so we havent had any serious injuries, thank

goodness. we have found that he tends to close his eyes for too long of a time,

like he is falling asleep prior to a fall, so when he is standing and going to

the bathroom or something i frequently remind him to keep his eyes open. that

seems to help a little, it is like he forgets he is standing up!! scary,

good luck and feel free to seek all the info that you need, hugs again, sharon m

pensacola, florida

Date: 2005/04/18 Mon PM 04:21:20 EDT

To: LBDcaregivers

Subject: introduction

Hello. I am a geriatric social worker and have a

small group home for people with Dementia. I have a

new resident with LBD - a delightful woman. Her

doctor has her on 10 mg of Ambien for sleep, but as

her children told us, it doesn't work. She has no

trouble falling asleep, but wakes up every hour and

gets up. About 3am she may sleep for two or three

hours. Being a small home we can safely accommodate

all kinds of sleeping patterns - people get up have

tea, sit with the caregiver, but I am afraid with her

that she is simply not getting enough good sleep. She

is active and rarely naps during the day, although she

will rest with an old movie on.

My aim is, obviously, the quality of her life and

health.

Does anyone have any suggestion about how to deal with

the sleep issue or any other medications or approaches

that may help. I don't want to see her continue on

Ambien since it doesn't seem to be working that well

and will only make her more drowsy and at more risk

for falls.

Any thoughts would be greatly appreciated.

Welcome to LBDcaregivers.

[Guest guest]

Hi ,

The same thing happened with my mom...constant waking and wandering,

in a 'not okay' situation--stairs, little kids in our home and us

being sleep deprived.Ambien did nothing, but Trazadone worked pretty

well. She would only get up twice per night as opposed to 4-5 times.

She seems to be tolerating it. She is now in a NH and is still on

it. Good luck and welcome. Leigh

> Hello. I am a geriatric social worker and have a

> small group home for people with Dementia. I have a

> new resident with LBD - a delightful woman. Her

> doctor has her on 10 mg of Ambien for sleep, but as

> her children told us, it doesn't work. She has no

> trouble falling asleep, but wakes up every hour and

> gets up. About 3am she may sleep for two or three

> hours. Being a small home we can safely accommodate

> all kinds of sleeping patterns - people get up have

> tea, sit with the caregiver, but I am afraid with her

> that she is simply not getting enough good sleep. She

> is active and rarely naps during the day, although she

> will rest with an old movie on.

>

> My aim is, obviously, the quality of her life and

> health.

> Does anyone have any suggestion about how to deal with

> the sleep issue or any other medications or approaches

> that may help. I don't want to see her continue on

> Ambien since it doesn't seem to be working that well

> and will only make her more drowsy and at more risk

> for falls.

>

> Any thoughts would be greatly appreciated.

>

>

[Guest guest]

Hi Guys

My mother is in the latter stages of LBD and was earlier medicated with

Ativan, she almost perished within a period of 10 days dues to the side

affects. Once the drug was removed she slowly recovered and we have had a

window of 12 weeks that have been great, recently she had a seizure during

the night and has rapidly declined, both physically and mentally to the

point that she though the whole time in a home is now totally assisted to

toilet, clothe and eat by staff. She is on a small maintanence dose of

Amitriptyline and it allows her to sleep unimpeded, with little anxiety, or

hallucinations that are so desperately horrible. Her mind is not able to

function at all and she struggles to process anything, but has glimpses of

speech now and again. Its a horrible disease and Im sure that mum knows what

is going on but cant process as the brain wont allow her to. I only hope

that she doesn't linger on in desperation. Thankfully we remember the happy

times and eventually these sad times will be overtaken by positive thought

rather than negative ones.

Kind wishes to you stella, Te Rangiita, New Zealand.

Re: introduction

>

>

> Hi ,

> The same thing happened with my mom...constant waking and wandering,

> in a 'not okay' situation--stairs, little kids in our home and us

> being sleep deprived.Ambien did nothing, but Trazadone worked pretty

> well. She would only get up twice per night as opposed to 4-5 times.

> She seems to be tolerating it. She is now in a NH and is still on

> it. Good luck and welcome. Leigh

>

>

>

>

>

>> Hello. I am a geriatric social worker and have a

>> small group home for people with Dementia. I have a

>> new resident with LBD - a delightful woman. Her

>> doctor has her on 10 mg of Ambien for sleep, but as

>> her children told us, it doesn't work. She has no

>> trouble falling asleep, but wakes up every hour and

>> gets up. About 3am she may sleep for two or three

>> hours. Being a small home we can safely accommodate

>> all kinds of sleeping patterns - people get up have

>> tea, sit with the caregiver, but I am afraid with her

>> that she is simply not getting enough good sleep. She

>> is active and rarely naps during the day, although she

>> will rest with an old movie on.

>>

>> My aim is, obviously, the quality of her life and

>> health.

>> Does anyone have any suggestion about how to deal with

>> the sleep issue or any other medications or approaches

>> that may help. I don't want to see her continue on

>> Ambien since it doesn't seem to be working that well

>> and will only make her more drowsy and at more risk

>> for falls.

>>

>> Any thoughts would be greatly appreciated.

>>

>>

>

>

>

>

>

>

> Welcome to LBDcaregivers.

>

>

>

[Guest guest]

Stella,

Good seeing your name in here. My thoughts and prayers are with you

and your mum. My dad is declining too since a seizure on Feb.

24th. He is able to communicate and eat but has days where he can

barely stand and walk, we have to get the wheelchair. It is so hard

watching them go a little piece each day, such a long and painful

goodbye. His birthday is today, he is 78. In some ways I hope it

is his last one because I hate to see him suffer. I know that

sounds cruel and then I feel guilty but he looks so sad and

miserable. My thoughts are with you. I too hope for your mum and

my dad that they don't linger on in desperation. Keep hanging on to

the happier times! Take care.

Donna P.

> >> Hello. I am a geriatric social worker and have a

> >> small group home for people with Dementia. I have a

> >> new resident with LBD - a delightful woman. Her

> >> doctor has her on 10 mg of Ambien for sleep, but as

> >> her children told us, it doesn't work. She has no

> >> trouble falling asleep, but wakes up every hour and

> >> gets up. About 3am she may sleep for two or three

> >> hours. Being a small home we can safely accommodate

> >> all kinds of sleeping patterns - people get up have

> >> tea, sit with the caregiver, but I am afraid with her

> >> that she is simply not getting enough good sleep. She

> >> is active and rarely naps during the day, although she

> >> will rest with an old movie on.

> >>

> >> My aim is, obviously, the quality of her life and

> >> health.

> >> Does anyone have any suggestion about how to deal with

> >> the sleep issue or any other medications or approaches

> >> that may help. I don't want to see her continue on

> >> Ambien since it doesn't seem to be working that well

> >> and will only make her more drowsy and at more risk

> >> for falls.

> >>

> >> Any thoughts would be greatly appreciated.

> >>

> >>

> >

> >

> >

> >

> >

> >

> > Welcome to LBDcaregivers.

> >

> >

> >

[Guest guest]

Hi ,

Thank you for asking your question and what a lucky lady your new

resident is for having someone who cares looking out for her.

Could you share what other meds your resident is taking? Maybe a tweak

is called for rather than adding a new med.

Courage - Caregiver to mother who has LBD for five years now.

Carton wrote:

> Hello. I am a geriatric social worker and have a

> small group home for people with Dementia. I have a

> new resident with LBD - a delightful woman. Her

> doctor has her on 10 mg of Ambien for sleep, but as

> her children told us, it doesn't work. She has no

> trouble falling asleep, but wakes up every hour and

> gets up. About 3am she may sleep for two or three

> hours. Being a small home we can safely accommodate

> all kinds of sleeping patterns - people get up have

> tea, sit with the caregiver, but I am afraid with her

> that she is simply not getting enough good sleep. She

> is active and rarely naps during the day, although she

> will rest with an old movie on.

>

> My aim is, obviously, the quality of her life and

> health.

> Does anyone have any suggestion about how to deal with

> the sleep issue or any other medications or approaches

> that may help. I don't want to see her continue on

> Ambien since it doesn't seem to be working that well

> and will only make her more drowsy and at more risk

> for falls.

>

> Any thoughts would be greatly appreciated.

>

>

>

>

> Welcome to LBDcaregivers.

>

>

>

>

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

>

[Guest guest]

Hi Sheila, welcome. I am a patient of Dr. K and I am 4 yrs out. I have lost

170 pds. I have lost more than I weigh. I used to weigh 333. I personally

have not had any major problems with the surgery. I eat everything I want, as

much as I want. I just eat less of course. I researched for a year and a half

before I had the surgery. In fact I came to Dr. K's group meetings for a year

before I had the surgery. I am glad I made the choice I did. Of course, as in

all surgeries you have to know that it will be a life changer in more ways

than one. You will have to be very good about taking your supplements, but that

is what you have to do regardless of what type of surgery you choose. You

also need to know that you will always need to make sure that you always choose

protein first when you eat. Protein and water are going to be the most

important things to you always. I am 69 and so I am not as young as most you

will

meet, but smart enough to know that the binder that they give you will become

your bible. Dr. K has lots of films that can show you exactly what he does,

if you are not grossed out by that sort of thing. I am not. So I was fully

prepared for what he was going to do to me and I was as calm as the proverbial

cucumber the day of my surgery. I had asked him to show all kinds of films

and asked him thousands of questions during the year I came to group. I am one

who always sits up front and asks questions. Still do. I have gotten where I

want to be and I have held it for the past year. I am happy. My labs have

been good. So I guess I can't ask for more. I have done as he asked or told me

to though.

Good luck with your insurance. Don't settle for less than the best.

Pearl

In a message dated 12/24/2008 12:19:03 P.M. Pacific Standard Time,

Lollepopz@... writes:

Hello all, My name is Sheila and I am new to this site. I have been

researching different types of weight loss surgery and Duodenal

Switch is the one that has really caught my eye and kept me going

back to.

I started seeing a lot of Dr. Keshishian's patients postings

everywhere I went. So, I have been researching everything I can get

my hands on about the procedure and the doctor.

I made a profile on obesityhelp and was thrilled when I found this

group.

I put in a request for a referral to see Dr. Keshishian and I am now

waiting for my referral dept to get an approval back from Blue cross

to go see him.

They wanted me to see Dr. Pavrez but he doesn't do duodenal switch. I

am sure he is a fine doctor but if he doesn't do this. I hate to

waste his time, my time or my insurance's money.

I am usually very quiet and just like to " lurk and research " but I

figured an introduction was only right. Nice to meet you all =)

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[Guest guest]

Hello all, My name is Sheila and I am new to this site. I have been

researching different types of weight loss surgery and Duodenal

Switch is the one that has really caught my eye and kept me going

back to.

I started seeing a lot of Dr. Keshishian's patients postings

everywhere I went. So, I have been researching everything I can get

my hands on about the procedure and the doctor.

I made a profile on obesityhelp and was thrilled when I found this

group.

I put in a request for a referral to see Dr. Keshishian and I am now

waiting for my referral dept to get an approval back from Blue cross

to go see him.

They wanted me to see Dr. Pavrez but he doesn't do duodenal switch. I

am sure he is a fine doctor but if he doesn't do this. I hate to

waste his time, my time or my insurance's money.

I am usually very quiet and just like to " lurk and research " but I

figured an introduction was only right. Nice to meet you all =)

[Guest guest]

Welcome  yes do come meet us at CAMP:)

Hi everyone - it's about time I stop lurking and introduce myself. I've been reading the listserve for quite a while now, and am in awe of the generosity of information and support provided here (and I'd like to be part of that).

So here's the brief introduction:

>Born and raised in Los Angeles. Med school USC, residency Internal Med at Beth Israel in Boston.

>Back to LA for private practice (with my Clinical Medicine instructor and several others) for 13 years.

>Left after earthquakes and 9/11 caused us (wife Jill and myself) to rethink priorities.

>Hospitalist in Medford, OR since 2002.

>Opened Meducation, PC summer 2007 in Ashland, OR (website: www.meducationpc.com).

Goal of the practice is to provide " uniquely collaborative care " for folks who want a personal medical consultant, who are interested in and invested in making their own healthcare decisions, and who value the extra time, access, education, and attention that is hard to find elsewhere. Meducation is structured as a hybrid between an IMP and a concierge internal medicine practice, with a fee schedule based on an a la carte approach: no up front membership, but folks understand that time spent on preventative and comprehensive care may not be covered by their insurance. My wife Jill was a professor of marketing in her prior career, and has been invaluable in this effort.

I am the sole practitioner, and I have one employee, a non-clinical office assistant. I have a bit too much office space, but sublease to my wife (a psychotherapist) and a chiropractor. We have a comfortable waiting room/library which rarely gets used - people are almost always seen on time. We are growing slowly mostly via word-of-mouth. I am still working about half-time as a hospitalist to pay our mortgage, but Meducation has been paying for itself for the last year (alas, some but not enough take-home). It's a slow, overworked, tough transition; but we expected that.

Support-wise, using Amazing Charts EMR (based on recommendations of this group); previously had used Soapware (ASP model) and fed up after too much data loss. Using Office Ally (also recommended by this group) after finding AltaPoint support very weak. We use Ring Central as a virtual PBX to handle incoming fax and voice mail. Currently dropping Medem, which I tried for secure email - too few people will jump the hurdles; most are happy with insecure email. We strive to be paperless. Oh, and this year we decided that we could splurge on a Blue Cross insurance policy for ourselves and our office manager.

I noted that IMP camp (which I could not attend last year) will be in our part of the country this August, and I'd very much like to join you!

OK, I feel better, no more anonymous partaking in your generosity - I'm ready to channel the positive energy.

Steve Hersch

--

L. Hersch, MD, FACP

Meducation, P.C.

499 Chestnut Street

Ashland, Oregon 97520

Telephone:

E-Mail: meducation@...

-- If you are a patient please allow up to 24 hours for a reply by  email/please note the new email address.Remember  that e-mail may not be entirely secure/     MD

        ph   fax impcenter.org

[Guest guest]

Welcome to the list! You are in our old

stomping grounds….Steve had his practice in Grants

Pass (at the Grants Pass Clinic) from 1998-2005 before we relocated

back to Northern California. If you know Matt

(anesthesiologist in Medford

– went to med school at USC), he and his wife Carolyn are old friends of

ours from Mayo Clinic.

Good luck with your practice!

Pratt

Office Manager

Oak Tree Internal Medicine P.C

Roy Medical Associates, Inc.

From: [mailto: ] On Behalf Of slhersch

Sent: Thursday, March 19, 2009

9:51 PM

To:

Subject:

Introduction

Hi everyone - it's about time I stop lurking and

introduce myself. I've been reading the listserve for quite a while now, and am

in awe of the generosity of information and support provided here (and I'd like

to be part of that).

So here's the brief introduction:

>Born and raised in Los Angeles.

Med school USC, residency Internal Med at Beth Israel in Boston.

>Back to LA for private practice (with my Clinical Medicine instructor and

several others) for 13 years.

>Left after earthquakes and 9/11 caused us (wife Jill and myself) to rethink

priorities.

>Hospitalist in Medford,

OR since 2002.

>Opened Meducation, PC summer 2007 in Ashland,

OR (website: www.meducationpc.com).