Re: hello

[Guest guest]

Hi , My name is and i live in Canada. I was just wondering how much do

the DR's over there know about EDS? DO they really follow up on it.

I was just wondering what its like in different countries. Thanks

P.S. i have aDaughter with EDS.

Re: hello

> Hi welcome back to the CEDA family. I joined the list in

> January,2000 and it is the best thing I ever did. I hav learned so much

> for all the family members and their support and understanding has been

> invaluable.

>

> My daughter Ann (24) and I both have Heds although I also have other

> vascular symptoms and haematurea due to thin kidney walls. We live in

> Scotland and can relate to problems with doctors so much. We have the

> job of educating our local hospital doctors and nurses - with varing

> degrees of success.

>

> Although I don't always respond to e-mails I always read them and pray

> for those who need prayer.

>

> Hugs,

>

> Lilian

>

> Heds, M.E. Fibromyalgia, CFS, viral arthritis and M.S.

>

>

>

> Bells wrote:

> >

> > Hi everyone,

> >

> > I was on this list a few years back looking for advice regarding my

> > daughter who has HEDS. Everyone was very helpful espesially Jill. I felt

> > very overwhlmed with s and my health and hearing about all the

things

> > you all bravely face was too much to take in at the time. Picturing

s

> > possible future was too much.

> >

> > I resubscribed last month as there is still so much unresolved and you

all

> > seem to see and know more than the doctors here do. I'm thinking we

need

> > to get out of Saskatchwan and to a childrens Hospital in Ont. or BC. Can

> > you recomend any specific doctors in Canada?

> > We need someone who understands the symptoms other thatn the

hypermobiliy/

> > joint pain and distocations. Kate doesn't need a surgeon. I think the

> > conective tissuses internally (organs and GI tract) are more what is

> > affecting her. She has venal pooling, Chronic Fatigue symptomes,

chemical

> > and weather sensitivities.She is home most of the time (for past 5

years)

> > and has trouble standing for any length of time with out being

lightheaded.

> >

> > The Rhumatoligist says he thinks it's all part of the EDS but is

> > inconsistant in explaing it and no amount of local referals has gained

us

> > insight or help and follow up is almost nonexsistant. I haven't seen

many

> > documents or research done on the aspects bothering her which may help

him.

> > Any recomendations? I read everything at the national sites.

> >

> > I have enjoyed watching the understanding and support you all give to

each

> > other and look forward to being out of the lurkers section. I have FM

and

> > have other health problems myself and my memory is really poor these

days

> > so if I reapeat myself you'll know why. ;-)

> >

> > thank you,

> > Jean

> >

> >

> >

[Guest guest]

Hello Dear, Is your name Hope? I have not read the mail yet, but I am sure

someone directed you to our " Files, & List " section to find the five phases of

LBD. Notice the addresses at the bottom of your mail.

I am sorry for your Father, Mother, and you. It has to be one terrible

ordeal that all of you have been through. My wish is that he is kept pain free.

Best wished to you with love,

Imogene

Caregiver for my true Texas Gentleman Husband of 37 years. First diagnosed

with Alzheimer's by a Neurologist OCT, 2005. But, on May 2, 2006 Dr.

Schillerstrom, Geriatric/Psychiatrist diagnosed LBD with Parkinsonism.

My precious husband, Don, is taking Zoloft and Razadyne.

A happy personality is contagious. Infect someone today.

In a message dated 4/20/2008 3:06:16 AM Central Daylight Time,

hopeisalive@... writes:

My father was diagnosised with LBD last week. I think however he is at

the final stages. He has broken two hips since february and has a hard

time swallowing and mom has a DNR that says not feeding tube. He is

already on pureed foods and thick liquids. I am trying to get a time

frame. He has had the dreams for at least 8 years.

thank you

**************Need a new ride? Check out the largest site for U.S. used car

listings at AOL Autos.

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[Guest guest]

Here's a link to the phases list that Imogene mentioned.

Go to our Files section:

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

And go into the folder marked:

LBD Phases

List of Phases put together by the LBD Caring Spouses Group

(keep in mind the phases were done by observations by other caregivers)

---

And since I haven't given to you yet - here's my 'welcome message' to

new members

First & foremost:

NO TRADITIONAL ANTIPSYCHOTICS (e.g. Haldol),

NO BENZODIAZEPINES (e.g. Ativan)

EXTREME CAUTION with ATYPICAL ANTIPSYCHOTICS (e.g. Risperidone, Zyprexa)

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

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

Live Chat Event with Dr. Gomperts, MD

Dr. Gomperts answered your questions on this Q & A session with Dr.

Gomperts, MD

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

>

> My father was diagnosised with LBD last week. I think however he is

at

> the final stages. He has broken two hips since february and has a

hard

> time swallowing and mom has a DNR that says not feeding tube. He is

> already on pureed foods and thick liquids. I am trying to get a time

> frame. He has had the dreams for at least 8 years.

>

> thank you

>

[Guest guest]

Hi dad is in an nursing home. He is not walking he has not walked

since after the first week of his first broke hip. He went really

down hill one night, we are not sure what happened. He was transfered

out of rehab into I C U and he did not know me that night but he knew

me the morning before this " episode " happened. He has vivid

hallucinations and has since September of 07. Ambain made him car

drive and he wrecked mom's car before he even broke his hip. Dad

worked as a pipe fitter /welder for 45 years so now they are saying

something about welders poisoning. He was diagnosed with LBD after

his behavior after his hip fractures and the fact that a four hour

metal evaluation suggested it. We knew he had Parkinson's Disease and

Dementia. Now we get all the other stuff like you all have endured

with Lewy Body Disease.

It is cruel I am his only daughter and I am daddy's little girl.

My name is hope is alive because I have my own health issues and Hope

is the only thing that gets me through.

>

> Hello Hopeisalive,

>

> Welcome and hope we can help in some small way. It is curious that

your Dad just got a diagnosis. It must be that his MD didn't know

what he was seeing.

>

> We have had many near where your Dad is and still come back to

somewhat of an ok existence.

>

> The thing that is so worrisome is that he has to be on some meds

that he can't tolerate. Meds are the most sensitive thing about this

disease.

>

> We have no " stages " as they do fluctuate so much depending on so

many things. Did he have surgery for his hips? That means he may

have been medicated for surgery to his detriment.

>

> Not quite sure what you mean by " dreams for 8 years. " Sleep is

usually a problem too.

>

> Hope we hear from you and let us know how YOU are doing. Is your

Dad in a nh or at home and your Mom cares for him?

>

> Hugs,

>

> Donna R

>

> Caregave for Mom (after I brought her from WI to MI) for 3 years and

4th year in a nh.

> She was almost 89 when she died in '02. No dx other than mine.

>

>

> hello

>

> My father was diagnosised with LBD last week. I think however he is at

> the final stages. He has broken two hips since february and has a hard

> time swallowing and mom has a DNR that says not feeding tube. He is

> already on pureed foods and thick liquids. I am trying to get a time

> frame. He has had the dreams for at least 8 years.

>

> thank you

>

>

>

>

>

[Guest guest]

Hi Hope is Alive,

It's very difficult to know a time frame with LBD. Re swallowing, he may

be able to continue this way for quite some time. Were his hips operated

on? How is his mental status right now?

" hopeisalive "

<hopeisalive@yaho

o.com> To

Sent by: LBDcaregivers

LBDcaregivers@yah cc

oogroups.com

Subject

hello

04/20/2008 04:06

AM

Please respond to

LBDcaregivers@yah

oogroups.com

My father was diagnosised with LBD last week. I think however he is at

the final stages. He has broken two hips since february and has a hard

time swallowing and mom has a DNR that says not feeding tube. He is

already on pureed foods and thick liquids. I am trying to get a time

frame. He has had the dreams for at least 8 years.

thank you

[Guest guest]

Dear Hope,

I honor your name and wish you well. Please feel free to let us know how

you are feeling. This can't be easy for you.

Please let us know what medications your father is on. It may be one of

the reasons he went down hill so quickly. OR, he may have had a UTI?

" hopeisalive "

<hopeisalive@yaho

o.com> To

Sent by: LBDcaregivers

LBDcaregivers@yah cc

oogroups.com

Subject

Re: hello

04/20/2008 06:03

PM

Please respond to

LBDcaregivers@yah

oogroups.com

Hi dad is in an nursing home. He is not walking he has not walked

since after the first week of his first broke hip. He went really

down hill one night, we are not sure what happened. He was transfered

out of rehab into I C U and he did not know me that night but he knew

me the morning before this " episode " happened. He has vivid

hallucinations and has since September of 07. Ambain made him car

drive and he wrecked mom's car before he even broke his hip. Dad

worked as a pipe fitter /welder for 45 years so now they are saying

something about welders poisoning. He was diagnosed with LBD after

his behavior after his hip fractures and the fact that a four hour

metal evaluation suggested it. We knew he had Parkinson's Disease and

Dementia. Now we get all the other stuff like you all have endured

with Lewy Body Disease.

It is cruel I am his only daughter and I am daddy's little girl.

My name is hope is alive because I have my own health issues and Hope

is the only thing that gets me through.

>

> Hello Hopeisalive,

>

> Welcome and hope we can help in some small way. It is curious that

your Dad just got a diagnosis. It must be that his MD didn't know

what he was seeing.

>

> We have had many near where your Dad is and still come back to

somewhat of an ok existence.

>

> The thing that is so worrisome is that he has to be on some meds

that he can't tolerate. Meds are the most sensitive thing about this

disease.

>

> We have no " stages " as they do fluctuate so much depending on so

many things. Did he have surgery for his hips? That means he may

have been medicated for surgery to his detriment.

>

> Not quite sure what you mean by " dreams for 8 years. " Sleep is

usually a problem too.

>

> Hope we hear from you and let us know how YOU are doing. Is your

Dad in a nh or at home and your Mom cares for him?

>

> Hugs,

>

> Donna R

>

> Caregave for Mom (after I brought her from WI to MI) for 3 years and

4th year in a nh.

> She was almost 89 when she died in '02. No dx other than mine.

>

>

> hello

>

> My father was diagnosised with LBD last week. I think however he is at

> the final stages. He has broken two hips since february and has a hard

> time swallowing and mom has a DNR that says not feeding tube. He is

> already on pureed foods and thick liquids. I am trying to get a time

> frame. He has had the dreams for at least 8 years.

>

> thank you

>

>

>

>

>