New member

[Guest guest]

wlecome you now this happened to me nonoe could figure it out it truns out i

have ddd digentive artherite of the spine i also have carpel in hand pluss

dd it evrywaer but my nees i finally went to doc who dose thid he

redognioded me said i was a mess.they put me on ssi but also for abuses i

suffered in my life .welcome you have come to the rigth place,hugs naana

>

>Reply-To: chronic_pain

>To: chronic_pain

>Subject: New member

>Date: Tue, 23 Mar 2004 20:13:32 -0000

>

_________________________________________________________________

Find a broadband plan that fits. Great local deals on high-speed Internet

access.

https://broadband.msn.com/?pgmarket=en-us/go/onm00200360ave/direct/01/

[Guest guest]

Carol wrote: >>...I have undiagnosed chronic pain

<<sniipped>> I feel like I'm on medical merry go round...<<

Hi Carol,

I am in the same kind of situation, although my symptoms are less

severe. I have undiagnosed chronic low back pain radiating down

my right leg, plus a knob of pain in my midback and pain in my right

side. Oh, and persistent appetite loss. So far I have been to 2

family physicians, 4 physiotherapists, and 3 specialists. I've had a

CT scan, an MRI, an abdominal ultrasound, and a nerve conduction

test. Next week I have a bone scan. So I know exactly what you mean

about being on a medical merry-go-round! Everyone seems to have

a different opinion about what my problem is but no one really

knows. It's scary because you can't help fearing the worst at times.

I too was afraid it was M.S. because I had a friend who was

diagnosed with M.S. after having back problems for 8 months.

Anyway, to cut a long story short - although I don't have exactly the

same medical problems you have, I understand what you are going

through.

My only suggestion is to get yourself into some kind of clinic (like

a neurology clinic) at a big hospital, if you can. I have been in

this state and getting worse for more than a year now - and nothing

really happened as far as figuring out what was going on until I got

into the Spine Program at Vancouver General Hospital. The specialist

I see there is not particularly helpful or informative but at least

he is actively pursuing my case.

This site is amazing because everyone is so helpful and supportive,

and informative too.

Glad to have you with us!

Di

in Vancouver, B.C., Canada

[Guest guest]

Hi Danny, I am glad to see another N.Englander on. It gets lonesome sometimes.

Peoople don't know how bad this damn N.E. weather can make you feel. I only

joined last week and learned so much and have such nice people talk to me. It

really helps to have some sympathy sometimes. Write some more about your self

and your problem.

Donna

Danny wrote:

Hi My name is Danny and I'm a new member as of 04/07/04. I suffer from Severe

Peripheral Nerve Damage and Severe Vascular Problems I've had Chronic Pain for 3

years now. I take Percussetts,Neurotins and use the Duragesic75 patch.I'm

looking forward to reading some of your posts and hope to learn from each and

everyone one of you a little here and a little there! Thank Yo for allowing me

the oppurtunity to join! Danny NH

Know someone who could benefit from our list? Send our direct sign-up URL:

http://www.yahoogroups.com/subscribe.cgi/chronic_pain or write us at:

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Manage your subscription with several special email addresses:

chronic_pain-owner - Sends email to the list owners

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[Guest guest]

wlecome danny i hope to get to know you better hugs nanna

Danny wrote: <clipped>

> Hi My name is Danny and I'm a new member as of 04/07/04.

[Guest guest]

wlecome danny i hope to get to know you better hugs nanna

Danny wrote: <clipped>

> Hi My name is Danny and I'm a new member as of 04/07/04.

[Guest guest]

wlecome danny i hope to get to know you better hugs nanna

Danny wrote: <clipped>

> Hi My name is Danny and I'm a new member as of 04/07/04.

[Guest guest]

<<<I'm looking forward to reading some of your posts and hope to learn from

each and everyone one of you a little here and a little there! Thank Yo for

allowing me the oppurtunity to join! Danny NH>>>>

Hi Danny,

Welcome to the group! Sorry you have pain and have to suffer but you are in

good company here! I hope you enjoy the group and get a lot out of it.

I assume the NH stands for New Hampshire? I have a brother I visit in

Portsmouth...are you any where near there? I love it up there.

Peace,

Ann

[Guest guest]

<<<I'm looking forward to reading some of your posts and hope to learn from

each and everyone one of you a little here and a little there! Thank Yo for

allowing me the oppurtunity to join! Danny NH>>>>

Hi Danny,

Welcome to the group! Sorry you have pain and have to suffer but you are in

good company here! I hope you enjoy the group and get a lot out of it.

I assume the NH stands for New Hampshire? I have a brother I visit in

Portsmouth...are you any where near there? I love it up there.

Peace,

Ann

[Guest guest]

New Hampshire is one of my favorites. I am in Conn. which in relation to the

rest of you is pretty close to N.H. Glad to hear from another New Englander.

Not that I don't love hearing and reading all your posts from all over. Nice

holiday to everyone. Donna

[Guest guest]

New Hampshire is one of my favorites. I am in Conn. which in relation to the

rest of you is pretty close to N.H. Glad to hear from another New Englander.

Not that I don't love hearing and reading all your posts from all over. Nice

holiday to everyone. Donna

[Guest guest]

Hi Danny,

Welcome to the group. We seem to have a lot in common. I also have

CP from severe Peripheral nerve damage and I too have severe vasular

problems in both my lower extremities. My stem from my diabetes most

likely.

I would love to hear more about you and how you started having

problems with your nerve damage. Was it an accident/injury or did it

start as a result from another problem such as mine with my

diabetes. I have not found very many people with my exact problem

and even my doctors seem puzzled at the amount of pain and other

problems I have as a result.

I also have atrophy in both feet, ankles and legs as well as severe

muscle spasms and joint pain. I constantly am searching for more

information trying to find answers so it would be great to hear more

about you.

Thank you and be well,

> Hi My name is Danny and I'm a new member as of 04/07/04. I suffer

from Severe Peripheral Nerve Damage and Severe Vascular Problems I've

had Chronic Pain for 3 years now. I take Percussetts,Neurotins and

use the Duragesic75 patch.I'm looking forward to reading some of your

posts and hope to learn from each and everyone one of you a little

here and a little there! Thank Yo for allowing me the oppurtunity to

join! Danny NH

[Guest guest]

Hi Danny,

Welcome to the group. We seem to have a lot in common. I also have

CP from severe Peripheral nerve damage and I too have severe vasular

problems in both my lower extremities. My stem from my diabetes most

likely.

I would love to hear more about you and how you started having

problems with your nerve damage. Was it an accident/injury or did it

start as a result from another problem such as mine with my

diabetes. I have not found very many people with my exact problem

and even my doctors seem puzzled at the amount of pain and other

problems I have as a result.

I also have atrophy in both feet, ankles and legs as well as severe

muscle spasms and joint pain. I constantly am searching for more

information trying to find answers so it would be great to hear more

about you.

Thank you and be well,

> Hi My name is Danny and I'm a new member as of 04/07/04. I suffer

from Severe Peripheral Nerve Damage and Severe Vascular Problems I've

had Chronic Pain for 3 years now. I take Percussetts,Neurotins and

use the Duragesic75 patch.I'm looking forward to reading some of your

posts and hope to learn from each and everyone one of you a little

here and a little there! Thank Yo for allowing me the oppurtunity to

join! Danny NH

[Guest guest]

Hi Danny,

Welcome to the group. We seem to have a lot in common. I also have

CP from severe Peripheral nerve damage and I too have severe vasular

problems in both my lower extremities. My stem from my diabetes most

likely.

I would love to hear more about you and how you started having

problems with your nerve damage. Was it an accident/injury or did it

start as a result from another problem such as mine with my

diabetes. I have not found very many people with my exact problem

and even my doctors seem puzzled at the amount of pain and other

problems I have as a result.

I also have atrophy in both feet, ankles and legs as well as severe

muscle spasms and joint pain. I constantly am searching for more

information trying to find answers so it would be great to hear more

about you.

Thank you and be well,

> Hi My name is Danny and I'm a new member as of 04/07/04. I suffer

from Severe Peripheral Nerve Damage and Severe Vascular Problems I've

had Chronic Pain for 3 years now. I take Percussetts,Neurotins and

use the Duragesic75 patch.I'm looking forward to reading some of your

posts and hope to learn from each and everyone one of you a little

here and a little there! Thank Yo for allowing me the oppurtunity to

join! Danny NH

[Guest guest]

What a wonderful person you are! I wish we had a sitter for my father who wanted

to learn more. I know you will find lots of information here that will help you

care for the patient and be helpful to the family. Thank you for your caring!

Tammy Castille wrote:I am looking forward to learning more

about LBD and hopefully that will help me deal with the problems that arise. I

am a sitter who doesn't have alot of medical experience. But I do know that I

need help. Thanks for allowing me into this group. I am sure I will get the help

I need and the support.

Thanks again

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

Start your day with Yahoo! - make it your home page

[Guest guest]

Welcome Myrna,

If you go to the LBD page to get to caring spouses group, do stop and read lots

of the links and things. You can also go back and read old messages if you go

to the Yahoo site.

Sorry you have to be here. You can request a brochure and also read the news

letter (1-3) and get some good insight. I do believe if you find an appropiate

Nero, you should be able to get a proper diagnosis. The brochure will help you

decide also and help you to determine what is going on. As you will read from

the experience of many here, been there, done that. It will help you anticipate

what is coming and what you might be able to avoid.

Keep reading and let us know you are there and what is happening. Someone else

has always been where you are.

Let people know where you are located so you might find others who are in your

area and can be a real support. We are having our first caregivers meeting in

Florida in Sepember and I am sure Carol will be updating everyone soon again.

We are hoping to have more support groups going in the near future.

Donna R

New Member

[Guest guest]

Welcome Phyllis ---

A suggestion for the walking -- get an alarm system. It will alert

you she is getting up -- and the alarm may become a reminder to her

that she's not supposed to walk. My Dad had one in the hospital

when his pneumonia caused severe dilarium (sp). It really helped.

Lori

In LBDcaregivers , " phyllis_40206 "

<phyllis_40206@y...> wrote:

> OMG - my sister found this site last night and forwarded it to me

> this morning. i have been reading messages on and off all day.

i

> thought i had sent this before, but it didn't get sent somehow.

>

> my mom was dx 2-1/2 years ago and has been living with me since.

i

> have been her major caregiver and i am absolutely thrilled to find

> this site.

>

> i have already learned alot and it is sooooo nice to know that

there

> are others out there going through the same things; coherent when

> others around; the spells; the disorientation and being nasty....

>

> mom has gone down so drastically in the last month that we have

> called in hospice and goten a hospital bed. hospice has been a

god

> sent. just to know that i call call someone during the night and

get

> some answer regarding medicine, etc.

>

> we are currently trying our best to inforce the wheelchair only

> policy. mom forgets that she can't walk and sometimes just gets

up

> and takes off. she ends up having to call me, and 9 out of 10

times

> ends up having a " spell " .

>

> i don't want to make mom feel like she is a burden or that we

don't

> want her here.....we will keep her as long as we are able.....but

i

> cannot keep lifting her off the floor. she has lost so much

weight

> that she only weighs 110, however, as you all know - when she is

out

> she is dead weight and it is beginnning to have an adverse effect

on

> my back.

>

> i have sent an e-mail regarding namenda. i swear sometimes i

think

> the doctors don't know what is what. i guess that is why they

call

> it practicing. our nuerologist kept insisting that all

the " spells "

> were a result of a drop in blood pressure and had mom on so many

meds

> to raise her bp that it was going up to 240 + - and we have since

> decided that it is not the bp alone causing the seizures.

>

> after we called in hospice, our neurologist called mom and told

her

> that she was concerned about the care she was being given and the

> treatment she was receiving. i was not home at the time she

called

> and spoke with her later. i was amazed that she would question

the

> care my sister and i are giving mom - amazingly enough she can

> remember that and is now questioning so many things i do - things

> that we have been doing the same way for so long. we have taken

her

> off all the meds for bp and she is a bit better. not too much,

> however, we will take any little bit of improvement.

>

> needless to say, the dr. will no longer treat mom. that is fine

with

> us as she is associated with a learning hospital and we think she

> would keep mom alive as long as she could regardless of

> anything....just so that she can record it somewhere.

>

> i love my mother very much, however, i don't want her to be kept

> alive just to be kept alive. she is so weak, has no muscles left,

is

> so stiff and in pain - oh yes, the dr. said this is a painless

> disease and the concept of keeping her comfortable until she dies

doe

> not exist! - and she was a vital, energetic person who was always

the

> first one to go somewhere or party! now she is awake maybe 4

hours a

> day and spends most of her time in bed and confused. this is not

the

> quality of life mom wants and she has said so in lucid moments.

>

> anyway, enuf' rambling. i am sure i will be posting messages and

> seeking advice quite often. i am so relieved to find other people

> who are living the same life as i am. the dr. saw her once every

6-8

> months and did not see all that we have.

> phyllis

[Guest guest]

what a great idea. i find that i can't relax at all - day or night - since i

never know when she is going to be jumping up. where do you get these alarms,

does anyone know? that would be wonderful as mom can't remember she can't

walk.......sounds perfect. thanks too much!

ladpr6 wrote:Welcome Phyllis ---

A suggestion for the walking -- get an alarm system. It will alert

you she is getting up -- and the alarm may become a reminder to her

that she's not supposed to walk. My Dad had one in the hospital

when his pneumonia caused severe dilarium (sp). It really helped.

Lori

In LBDcaregivers , " phyllis_40206 "

<phyllis_40206@y...> wrote:

> OMG - my sister found this site last night and forwarded it to me

> this morning. i have been reading messages on and off all day.

i

> thought i had sent this before, but it didn't get sent somehow.

>

> my mom was dx 2-1/2 years ago and has been living with me since.

i

> have been her major caregiver and i am absolutely thrilled to find

> this site.

>

> i have already learned alot and it is sooooo nice to know that

there

> are others out there going through the same things; coherent when

> others around; the spells; the disorientation and being nasty....

>

> mom has gone down so drastically in the last month that we have

> called in hospice and goten a hospital bed. hospice has been a

god

> sent. just to know that i call call someone during the night and

get

> some answer regarding medicine, etc.

>

> we are currently trying our best to inforce the wheelchair only

> policy. mom forgets that she can't walk and sometimes just gets

up

> and takes off. she ends up having to call me, and 9 out of 10

times

> ends up having a " spell " .

>

> i don't want to make mom feel like she is a burden or that we

don't

> want her here.....we will keep her as long as we are able.....but

i

> cannot keep lifting her off the floor. she has lost so much

weight

> that she only weighs 110, however, as you all know - when she is

out

> she is dead weight and it is beginnning to have an adverse effect

on

> my back.

>

> i have sent an e-mail regarding namenda. i swear sometimes i

think

> the doctors don't know what is what. i guess that is why they

call

> it practicing. our nuerologist kept insisting that all

the " spells "

> were a result of a drop in blood pressure and had mom on so many

meds

> to raise her bp that it was going up to 240 + - and we have since

> decided that it is not the bp alone causing the seizures.

>

> after we called in hospice, our neurologist called mom and told

her

> that she was concerned about the care she was being given and the

> treatment she was receiving. i was not home at the time she

called

> and spoke with her later. i was amazed that she would question

the

> care my sister and i are giving mom - amazingly enough she can

> remember that and is now questioning so many things i do - things

> that we have been doing the same way for so long. we have taken

her

> off all the meds for bp and she is a bit better. not too much,

> however, we will take any little bit of improvement.

>

> needless to say, the dr. will no longer treat mom. that is fine

with

> us as she is associated with a learning hospital and we think she

> would keep mom alive as long as she could regardless of

> anything....just so that she can record it somewhere.

>

> i love my mother very much, however, i don't want her to be kept

> alive just to be kept alive. she is so weak, has no muscles left,

is

> so stiff and in pain - oh yes, the dr. said this is a painless

> disease and the concept of keeping her comfortable until she dies

doe

> not exist! - and she was a vital, energetic person who was always

the

> first one to go somewhere or party! now she is awake maybe 4

hours a

> day and spends most of her time in bed and confused. this is not

the

> quality of life mom wants and she has said so in lucid moments.

>

> anyway, enuf' rambling. i am sure i will be posting messages and

> seeking advice quite often. i am so relieved to find other people

> who are living the same life as i am. the dr. saw her once every

6-8

> months and did not see all that we have.

> phyllis

Welcome to LBDcaregivers.

[Guest guest]

Hi and welcome to the group.

Your mom is probably in shock and angry as hell. Who among us would

want to face up to the facts of LBD. If I were in your shoes I would

let her blow off some steam. Its going to be hard for you but please

know that our LO's tend to take out their frustration with their main

caregiver - lucky you. This too shall pass. I learned early on to just

roll with this disease and just be wherever my mother was at. If she

rambled or hallucinated I would just go with it because trying to reason

with someone with LBD is tiring - you can use your energy on something

else.

The next few weeks are going to be rough but eventually you and mom will

be able to pace yourselves and live with your new normal. When you are

able, read some posts and check out the files section for up to date

information.

Hang in there and sending you strength.

Courage

Duvall wrote:

> Hi,

>

> My name is , and I just received the diagnosis of my Mom's LBD

> last Wed. We knew something was wrong, and suspected Alzheimers, but

> I had never heard of LBD. At this point, Mom is crying, yelling at me

> about the diagnosis, calling herself an " idiot, " and " nuts, " and

> saying that she was crucified by the doctors. She's upset, and

> upsetting me terribly. She blames me for making and taking her to the

> doctor's appointments. Does anyone have any ideas on how to deal with

> this? She wants to sue everybody involved, and swears up and down

> that she doesn't have memory problems. Mom will be 81 this year, and

> still gets around fairly well. We thought her memory issues might be

> tied to a couple of falls she took in the last few years, but the

> doctors said no.

>

> Anyways, any ideas you may have would be greatly appreciated!

>

> Thank you,

>

>

>

> __________________________________________________

>

[Guest guest]

, i am soo sorry that you ahve the uglies of LBD right now. they are so

hard to deal with. if you can try to distract your mom into thinking about

something else, in other words change the subject, otherwise agree with it and

maybe pretend to call a lawyer to make an appointment for say one month out, and

tell her mom i have an appt with a lawyer we will talke to him;/her about suing

the doc. play along maybe she will calm down then, someimtes you have to do

both inordre for them to calm down. my dad has terrifying night mares that we

hafve to console him thru and sometimes it is hard, as i am the bad guy in his

dreams and i have to assure him that i m not the bad guy but someone hwo wants

to help him. good luck hugs sharon m

Date: 2005/09/11 Sun PM 09:34:52 EDT

To: LBDcaregivers

Subject: New member

[Guest guest]

I know I'm replying to an older post, but I'm trying to go through some of

my unread mail.

The MRI probably was looking for strokes. My dad had a cat-scan to rule out

strokes or a brain tumor. When neither were found, LBD was dx'd as the

reason for hallucinations.

Last Friday he had an EEG, a brain waves test. I could see the computer

screen from where I was sitting. There sure was a lot of " mess " on the

screen whenever he had a hallucinogenic episode. I think the test was

looking for seizure activity. Has anyone else's lo had an EEG? The doc

hasn't told me the results yet.

_____

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of Myrna

Sent: Thursday, September 01, 2005 9:49 AM

To: LBDcaregivers

Subject: Re: New member

I don't understand how an MRI scan can diagnose that. My doctor tells me

that the brain scans on my husband are negative, but that doesn't mean he

doesn't have AD or LBD, because brain scans are not definitive. Myrna

" but an MRI scan performed in May

of this year finally gave us the diagnosis of probable LBD. " urbanmisfit9

[Guest guest]

Hi D,

Welcome to the group!

Alana

>

> I developed asthma six years ago when I was 59. I am using Albuterol which

helps a great deal. Thank you. d

>

[Guest guest]

Hello,

I will be receiving a DS by Dr. Keshishian on August 29! I am so humbled and grateful. I am 5'8" and 300 Lbs. I have no co-morbidities....yet but several family members do. It is just a matter of time without having the surgery.

I will be a 1st time grandmother in October, and we have a 12 year old and 7 year old at home (3 kids total).

I know I'll need support from my fellow DS'rs. I'm glad to be able to come here and learn!

Move over on the losers bench.

Martha

[Guest guest]

Welcome Martha! Dr. K is the best and congratulations. Here's praying for an uneventful surgery and speedy recovery!

Peebles

Surgery date-4/3/2008

247 to 145decorate.home@...http://www.celebratinghome.com/sites/susanpeebles/PWPHome.aspx

To: DS_Friends_Keshishian Sent: Saturday, August 13, 2011 8:12 PMSubject: New member

Hello,

I will be receiving a DS by Dr. Keshishian on August 29! I am so humbled and grateful. I am 5'8" and 300 Lbs. I have no co-morbidities....yet but several family members do. It is just a matter of time without having the surgery.

I will be a 1st time grandmother in October, and we have a 12 year old and 7 year old at home (3 kids total).

I know I'll need support from my fellow DS'rs. I'm glad to be able to come here and learn!

Move over on the losers bench.

Martha

[Guest guest]

Welcome Martha! Dr. K is the best and congratulations. Here's praying for an uneventful surgery and speedy recovery!

Peebles

Surgery date-4/3/2008

247 to 145decorate.home@...http://www.celebratinghome.com/sites/susanpeebles/PWPHome.aspx

To: DS_Friends_Keshishian Sent: Saturday, August 13, 2011 8:12 PMSubject: New member

Hello,

I will be receiving a DS by Dr. Keshishian on August 29! I am so humbled and grateful. I am 5'8" and 300 Lbs. I have no co-morbidities....yet but several family members do. It is just a matter of time without having the surgery.

I will be a 1st time grandmother in October, and we have a 12 year old and 7 year old at home (3 kids total).

I know I'll need support from my fellow DS'rs. I'm glad to be able to come here and learn!

Move over on the losers bench.

Martha

[Guest guest]

Welcome to the group Martha. Dr. Keshishian is the greatest and without him I

would not be walking around today. You are in good hands with Dr. Keshishian. My

prayer to you for a successful surgery and speedy recovery.

Sheryl

>

> Hello,

> I will be receiving a DS by Dr. Keshishian on August 29! I am so humbled and

> grateful. I am 5'8 " and 300 Lbs. I have no co-morbidities....yet but several

> family members do. It is just a matter of time without having the surgery.

> I will be a 1st time grandmother in October, and we have a 12 year old and 7

> year old at home (3 kids total).

>

> I know I'll need support from my fellow DS'rs. I'm glad to be able to come

here

> and learn!

> Move over on the losers bench.

> Martha

>