Survey

[Guest guest]

I agree with Debbi. I don't think meat causes or

" triggers " achalasia. I think it is a result of

achalasia.

I have been a vegetarian for 20 years and have

had Achalasia for 2 1/2 years. It certainly

could not have caused or triggered achalasia in

me. Meat is tough and if you are going to have

trouble swallowing it makes since it would be

one of the first foods to have problems with.

As far as the blood type theory I am type O.

I don't feel that I have more acid than the

next person. I have never had acid problems.

I still believe it is a problem with the nerves

that have been effected by a virus that progressively

damages the nerves. Different people have different

levels of severities of achalasia as many people

respond to viruses differently. I mean you hear of

hearts or other body parts that have been damaged

by viruses, why not the E? My friends mother was

just in the hospital because she had a virus that

attacked her heart.

I'm sure vitamins, stress etc. have to do with

how well your body can fight a virus also.

Any way, thats my theory for what its worth.

Jenifer

>

> > WOW Genia! Yes, that deffinely helped! Thank you for responding!

> > So you agree that meats are the main cause or trigger.

>

> I didn't read Genia's response to say this at all.

>

> You asked: In the early stages, did you usually find the problem

food to

> be meat; beef, chicken, fish etc?

>

> And Genia replied: YES, PORK AND BEEF

>

> You asked us what foods we first had trouble swallowing, not what

we think

> caused our achalasia. So taking Genia's response to meat being

a " problem

> food " and rewording it like she's saying that meat is a " cause or

trigger "

> isn't an appropriate conclusion to her statement.

>

> I also think that before using terms like " cause " or " trigger " that

there

> should be some sort of definition of what those words mean; without

> clarification of what is meant by the terms, there's a huge

potential for

> misunderstanding.

>

> For example, most people think of a " cause " as being a reason for

why

> something happened. The cause of chicken pox is the varicella-

zoster

> virus. You get chicken pox BECAUSE OF the varicella-zoster virus.

The

> virus is the cause. You become hypothermic BECAUSE OF the cold

> temperature. The temperature is the cause. This does not translate

into

> the meat/achalasia scenario. You don't get achalasia BECAUSE OF

the meat

> --you have trouble swallowing the meat BECAUSE OF the achalasia.

>

> Same for the use of " trigger " -- a trigger sets off a process. The

sight

> of a squirrel in the back yard triggers a dog's excited barking.

The dog

> barks BECAUSE OF the squirrel. But the squirrel wasn't in the back

yard

> because he wanted to hear the dog bark (well, maybe... we have some

pretty

> crafty squirrels around here!) But we don't have achalasia because

we are

> trying to swallow meat. We have dysphagia (trouble swallowing)

because we

> have achalasia, and we have trouble swallowing meat because we have

> trouble swallowing *in general* -- it's only natural that we would

have

> the most trouble swallowing the items (meat) which are least likely

to be

> completely pulverized in the chewing process, as those items are

going to

> be the largest in size and therefore the most difficult to swallow

for

> people who have trouble swallowing.

>

> I think that clarifying the terms that are used helps to prevent

> misunderstandings and confusion for the ones who are reading the

posts.

>

> Debbi

[Guest guest]

Debbi - You took the words right out of my mouth. I did ask Chet his

blood type, and it is not O - but his first response was that O is

the most common blood type.

As much as I would love to know the cause of this, it does not seem

likely that anyone will really no for sure. No one really knows for

sure with almost any disease out there - My brother-in-law has no

idea why he has the cancer that he has, nor do his doctors at MD

- the number 1 hospital for cancer. There has been some

speculation, but they are just that speculation.

[Guest guest]

Debbi - You took the words right out of my mouth.

Great minds think alike, huh ? ;o)

As much as I would love to know the cause of this, it does not seem likely that anyone will really no for sure.

I agree.... at least not anytime in the near future. Hopefully with time we'll be able to find a cause, but I fear that it may not be so simple as *one* virus or *one* gene, etc., which will make it harder to find the true cause.

No one really knows for sure with almost any disease out there - My brother-in-law has no idea why he has the cancer that he has, nor do his doctors at MD - the number 1 hospital for cancer. There has been some speculation, but they are just that speculation.

Exactly... some people who smoke tobacco get lung cancer, but some don't. Smoking increases your chances of developing cancer, but it doesn't guarantee that you'll get it. And not smoking doesn't guarantee that you won't get lung cancer, either. Sometimes things just happen.

Debbi

[Guest guest]

Hi ,

I see what you and Debbie mean; that meat is really not a " trigger

or cause " per se. I just meant (and I should not have assumed it

was obvious) that meat (beef and pork are meats) is often the food

that brings ON an attack. So meats (chicken, beef, pork etc) seems

to be the most common food that brings ON a spasm - or meat is often

the food that triggers a spasm...

I appreciate her detailed clarification though, just in case a

reader jumped to the conclusion that if we were to give up all meat,

we'd " cure " our Achalasia. duh. However, I myself have taken to

eating LESS meat and when I do I cut it up into small peices and I

eat more slowly, after drinking a full glass of water to disolve MY

stomach acids which are in abundance, characteristic to most Type

O's... (you can read more about it in the book, " Eating Right for

Your Blood Type).

There seem to be an unchracterist amount of Type O's who suffer from

Achalasia. It is a slightly more common blood type, but I know an

even mixture of blood type people and just wanted to mention this

oservation. I just found personally that when I am hungry it

happens most. When I am hungry, my stomach acids are strongest and

undiluted which COULD " trigger " the valve to clamp shut as it senses

the digestive juices while I am chewing my first few bits. This is

just my personal observation that I've had for 7 years now. I'm

ALWAYS hungry when I have a spasm, always eating meat and always

eating too fast. So I am just trying to help us all here when I

made these suggestions. I also think I've been dehydrated to an

extent - I wake up so thirsty many nights, of not most. Now I am

drinking 7 or so glasses of water a day to see if this helps.

Thanks again for responding,

Diane

> >

> > > WOW Genia! Yes, that deffinely helped! Thank you for

responding!

> > > So you agree that meats are the main cause or trigger.

> >

> > I didn't read Genia's response to say this at all.

> >

> > You asked: In the early stages, did you usually find the

problem

> food to

> > be meat; beef, chicken, fish etc?

> >

> > And Genia replied: YES, PORK AND BEEF

> >

> > You asked us what foods we first had trouble swallowing, not

what

> we think

> > caused our achalasia. So taking Genia's response to meat being

> a " problem

> > food " and rewording it like she's saying that meat is a " cause

or

> trigger "

> > isn't an appropriate conclusion to her statement.

> >

> > I also think that before using terms like " cause " or " trigger "

that

> there

> > should be some sort of definition of what those words mean;

without

> > clarification of what is meant by the terms, there's a huge

> potential for

> > misunderstanding.

> >

> > For example, most people think of a " cause " as being a reason

for

> why

> > something happened. The cause of chicken pox is the varicella-

> zoster

> > virus. You get chicken pox BECAUSE OF the varicella-zoster

virus.

> The

> > virus is the cause. You become hypothermic BECAUSE OF the cold

> > temperature. The temperature is the cause. This does not

translate

> into

> > the meat/achalasia scenario. You don't get achalasia BECAUSE OF

> the meat

> > --you have trouble swallowing the meat BECAUSE OF the achalasia.

> >

> > Same for the use of " trigger " -- a trigger sets off a process.

The

> sight

> > of a squirrel in the back yard triggers a dog's excited

barking.

> The dog

> > barks BECAUSE OF the squirrel. But the squirrel wasn't in the

back

> yard

> > because he wanted to hear the dog bark (well, maybe... we have

some

> pretty

> > crafty squirrels around here!) But we don't have achalasia

because

> we are

> > trying to swallow meat. We have dysphagia (trouble swallowing)

> because we

> > have achalasia, and we have trouble swallowing meat because we

have

> > trouble swallowing *in general* -- it's only natural that we

would

> have

> > the most trouble swallowing the items (meat) which are least

likely

> to be

> > completely pulverized in the chewing process, as those items are

> going to

> > be the largest in size and therefore the most difficult to

swallow

> for

> > people who have trouble swallowing.

> >

> > I think that clarifying the terms that are used helps to prevent

> > misunderstandings and confusion for the ones who are reading the

> posts.

> >

> > Debbi

[Guest guest]

Diane, It is my understanding of achalasia that the LES is ALWAYS

shut and does not relax. (others reading this, please correct me if

I'm wrong). It's not something that " clamps " shut when you eat

something specific. Nor are spasms " triggered " by eating meat or

eating too fast or not drinking enough water. My spasms occur

sporadically and I'm lucky enough to be able to control them without

medication. It was also my understanding that we don't know why we

experience the spasms. Also, eating meat or anything else

doesn't " bring on an attack " (not sure what you consider an

attack). With achalasia you have difficulty swallowing anything,

some things are more difficult than others. But the difficulty is

always there. And when I'm not eating the LES is still " clamped

shut. "

I agree with Debbi that CES is not the same thing as achalasia.

When I first went to a GI and told him my symptoms he thought I had

a " congenital ring " in my esophagus that just needed to be stretched

out with the balloon dilation. So I went for an endoscopy thinking

he would look and see the ring and while I was still " under " he

would " fix " it. To my dismay as I came out of it and asked if

everything was done, the nurse said no and wouldn't tell me

anything. My mother who was with me told me the doctor came out and

shrugged his shoulders because he didn't know what was wrong. He

also said that I had food remaining in my esophagus even though I

fasted for over 8 hours. So although not eating for 8 hours,

my " valve " was still " clamped shut. " Nothing " triggered " it. The

LES just doesn't relax. Needless to say I didn't go back to that

doctor and went to another who as soon as I said all my symptoms

told me about achalasia. (Which I already knew about from my own

research). Sent me to for the barium swallow w/ video and

bang...boom...I was diagnosed with A. My next test is the

manometry. Which none of these tests you've ever mentioned getting

when I asked you. So, I'm curious as to why you think you have A

instead of the esophageal ring that Debbi mentioned.

, NYC

PS: My pic was in my user lookup, but I added some to the photos

section if your interested.

> > >

> > > > WOW Genia! Yes, that deffinely helped! Thank you for

> responding!

> > > > So you agree that meats are the main cause or trigger.

> > >

> > > I didn't read Genia's response to say this at all.

> > >

> > > You asked: In the early stages, did you usually find the

> problem

> > food to

> > > be meat; beef, chicken, fish etc?

> > >

> > > And Genia replied: YES, PORK AND BEEF

> > >

> > > You asked us what foods we first had trouble swallowing, not

> what

> > we think

> > > caused our achalasia. So taking Genia's response to meat

being

> > a " problem

> > > food " and rewording it like she's saying that meat is a " cause

> or

> > trigger "

> > > isn't an appropriate conclusion to her statement.

> > >

> > > I also think that before using terms like " cause " or " trigger "

> that

> > there

> > > should be some sort of definition of what those words mean;

> without

> > > clarification of what is meant by the terms, there's a huge

> > potential for

> > > misunderstanding.

> > >

> > > For example, most people think of a " cause " as being a reason

> for

> > why

> > > something happened. The cause of chicken pox is the varicella-

> > zoster

> > > virus. You get chicken pox BECAUSE OF the varicella-zoster

> virus.

> > The

> > > virus is the cause. You become hypothermic BECAUSE OF the cold

> > > temperature. The temperature is the cause. This does not

> translate

> > into

> > > the meat/achalasia scenario. You don't get achalasia BECAUSE

OF

> > the meat

> > > --you have trouble swallowing the meat BECAUSE OF the

achalasia.

> > >

> > > Same for the use of " trigger " -- a trigger sets off a

process.

> The

> > sight

> > > of a squirrel in the back yard triggers a dog's excited

> barking.

> > The dog

> > > barks BECAUSE OF the squirrel. But the squirrel wasn't in the

> back

> > yard

> > > because he wanted to hear the dog bark (well, maybe... we have

> some

> > pretty

> > > crafty squirrels around here!) But we don't have achalasia

> because

> > we are

> > > trying to swallow meat. We have dysphagia (trouble

swallowing)

> > because we

> > > have achalasia, and we have trouble swallowing meat because we

> have

> > > trouble swallowing *in general* -- it's only natural that we

> would

> > have

> > > the most trouble swallowing the items (meat) which are least

> likely

> > to be

> > > completely pulverized in the chewing process, as those items

are

> > going to

> > > be the largest in size and therefore the most difficult to

> swallow

> > for

> > > people who have trouble swallowing.

> > >

> > > I think that clarifying the terms that are used helps to

prevent

> > > misunderstandings and confusion for the ones who are reading

the

> > posts.

> > >

> > > Debbi

[Guest guest]

Thank you for yoru kind thoughts and gentle manner. Maybe I

do hae the " ring " and not A. It just seems so similar to me - I

sitll can't see what the diference is except that with whatever I

have a spasm occurs ony abotu once a month! Otherwise I go abotu

eating as normal, except I cut my food up small and try not to eat

when I'm starving and i do drink a lot of water to keep hydrated.

But the two seems similar to me. With me, it feels liek it does

clamp shut - I'm eating, adn all of a sudden a spasm starts. I will

think and pray about what you said. Either way, I am not gogin to

treat this with medication or surgery. As logn as I can manage it,

i'm goign to do so. I hope and pray it ddoesn't progress - once or

so a month is enough! Sometimes it feels stuck and I cant' eat for

5 or 6 horu; sometimes it only lasts 10 min.

Thank you again for your gentle manner. I am perhaps soon to be able

to rule out A. One can only hope! :-)

Yet what I have is bad enough, just not quite as bad as many of you.

Could there by others on here who will benefit form our dialog?

Diane

> > > >

> > > > > WOW Genia! Yes, that deffinely helped! Thank you for

> > responding!

> > > > > So you agree that meats are the main cause or trigger.

> > > >

> > > > I didn't read Genia's response to say this at all.

> > > >

> > > > You asked: In the early stages, did you usually find the

> > problem

> > > food to

> > > > be meat; beef, chicken, fish etc?

> > > >

> > > > And Genia replied: YES, PORK AND BEEF

> > > >

> > > > You asked us what foods we first had trouble swallowing, not

> > what

> > > we think

> > > > caused our achalasia. So taking Genia's response to meat

> being

> > > a " problem

> > > > food " and rewording it like she's saying that meat is

a " cause

> > or

> > > trigger "

> > > > isn't an appropriate conclusion to her statement.

> > > >

> > > > I also think that before using terms like " cause "

or " trigger "

> > that

> > > there

> > > > should be some sort of definition of what those words mean;

> > without

> > > > clarification of what is meant by the terms, there's a huge

> > > potential for

> > > > misunderstanding.

> > > >

> > > > For example, most people think of a " cause " as being a

reason

> > for

> > > why

> > > > something happened. The cause of chicken pox is the

varicella-

> > > zoster

> > > > virus. You get chicken pox BECAUSE OF the varicella-zoster

> > virus.

> > > The

> > > > virus is the cause. You become hypothermic BECAUSE OF the

cold

> > > > temperature. The temperature is the cause. This does not

> > translate

> > > into

> > > > the meat/achalasia scenario. You don't get achalasia

BECAUSE

> OF

> > > the meat

> > > > --you have trouble swallowing the meat BECAUSE OF the

> achalasia.

> > > >

> > > > Same for the use of " trigger " -- a trigger sets off a

> process.

> > The

> > > sight

> > > > of a squirrel in the back yard triggers a dog's excited

> > barking.

> > > The dog

> > > > barks BECAUSE OF the squirrel. But the squirrel wasn't in

the

> > back

> > > yard

> > > > because he wanted to hear the dog bark (well, maybe... we

have

> > some

> > > pretty

> > > > crafty squirrels around here!) But we don't have achalasia

> > because

> > > we are

> > > > trying to swallow meat. We have dysphagia (trouble

> swallowing)

> > > because we

> > > > have achalasia, and we have trouble swallowing meat because

we

> > have

> > > > trouble swallowing *in general* -- it's only natural that we

> > would

> > > have

> > > > the most trouble swallowing the items (meat) which are least

> > likely

> > > to be

> > > > completely pulverized in the chewing process, as those items

> are

> > > going to

> > > > be the largest in size and therefore the most difficult to

> > swallow

> > > for

> > > > people who have trouble swallowing.

> > > >

> > > > I think that clarifying the terms that are used helps to

> prevent

> > > > misunderstandings and confusion for the ones who are reading

> the

> > > posts.

> > > >

> > > > Debbi

[Guest guest]

Diane, Well, like I said before with achalasia I have difficulty

swallowing no matter what I eat OR drink. I can NEVER eat normal. I

don't go thru sporadic episodes, it's ALL THE TIME. The only way I

can get the food thru into my stomach is drinking room-temp water,

filling up my E until the pressure builds up to a point where it

forces the food thru the LES. Everyone here has there own " method "

for dealing with it. Some need cold water, some use milk. For me,

the cold water just tightens the muscle even more. We all cope with

it however we can. But I really think you should go to a doctor to

rule out A. If you have the " ring " it is more easily treated than

A. There is no cure for A, but with the " ring " you can have a simple

procedure to rid yourself of your symptoms completely. If you don't

have to suffer and there's a way to help it, then you should consider

doing so. Believe me, I'm no fan of doctors in general either but

sometimes you have to do what's best for your body. If I dont' get

some kind of treatment, my esophagus will continue to stretch out

because of all the food it contains from the LES not being able to

relax. So I opted for the surgery because it's supposed to be the

most permanent " fix. " I'm hoping I have a successful outcome like

some of the others here have. I'm not sure if others here have

the " ring " instead of A because any posts that I've read they've been

offically diagnosed with A and have gone thru all the necessary tests

for it. What tests have you gone through?

Well hopefully you will be able to get the answers you are looking

for.

, NYC

> > > > >

> > > > > > WOW Genia! Yes, that deffinely helped! Thank you for

> > > responding!

> > > > > > So you agree that meats are the main cause or trigger.

> > > > >

> > > > > I didn't read Genia's response to say this at all.

> > > > >

> > > > > You asked: In the early stages, did you usually find the

> > > problem

> > > > food to

> > > > > be meat; beef, chicken, fish etc?

> > > > >

> > > > > And Genia replied: YES, PORK AND BEEF

> > > > >

> > > > > You asked us what foods we first had trouble swallowing,

not

> > > what

> > > > we think

> > > > > caused our achalasia. So taking Genia's response to meat

> > being

> > > > a " problem

> > > > > food " and rewording it like she's saying that meat is

> a " cause

> > > or

> > > > trigger "

> > > > > isn't an appropriate conclusion to her statement.

> > > > >

> > > > > I also think that before using terms like " cause "

> or " trigger "

> > > that

> > > > there

> > > > > should be some sort of definition of what those words mean;

> > > without

> > > > > clarification of what is meant by the terms, there's a huge

> > > > potential for

> > > > > misunderstanding.

> > > > >

> > > > > For example, most people think of a " cause " as being a

> reason

> > > for

> > > > why

> > > > > something happened. The cause of chicken pox is the

> varicella-

> > > > zoster

> > > > > virus. You get chicken pox BECAUSE OF the varicella-zoster

> > > virus.

> > > > The

> > > > > virus is the cause. You become hypothermic BECAUSE OF the

> cold

> > > > > temperature. The temperature is the cause. This does not

> > > translate

> > > > into

> > > > > the meat/achalasia scenario. You don't get achalasia

> BECAUSE

> > OF

> > > > the meat

> > > > > --you have trouble swallowing the meat BECAUSE OF the

> > achalasia.

> > > > >

> > > > > Same for the use of " trigger " -- a trigger sets off a

> > process.

> > > The

> > > > sight

> > > > > of a squirrel in the back yard triggers a dog's excited

> > > barking.

> > > > The dog

> > > > > barks BECAUSE OF the squirrel. But the squirrel wasn't in

> the

> > > back

> > > > yard

> > > > > because he wanted to hear the dog bark (well, maybe... we

> have

> > > some

> > > > pretty

> > > > > crafty squirrels around here!) But we don't have achalasia

> > > because

> > > > we are

> > > > > trying to swallow meat. We have dysphagia (trouble

> > swallowing)

> > > > because we

> > > > > have achalasia, and we have trouble swallowing meat because

> we

> > > have

> > > > > trouble swallowing *in general* -- it's only natural that

we

> > > would

> > > > have

> > > > > the most trouble swallowing the items (meat) which are

least

> > > likely

> > > > to be

> > > > > completely pulverized in the chewing process, as those

items

> > are

> > > > going to

> > > > > be the largest in size and therefore the most difficult to

> > > swallow

> > > > for

> > > > > people who have trouble swallowing.

> > > > >

> > > > > I think that clarifying the terms that are used helps to

> > prevent

> > > > > misunderstandings and confusion for the ones who are

reading

> > the

> > > > posts.

> > > > >

> > > > > Debbi

[Guest guest]

> Just curious and wanted to ask you to participate:

>

> 1. In the early stages, did you usually find the problem food to

be

> meat; beef, chicken, fish etc?

>

> 2. Did you sense you were stressed or nervous or upset at the time?

>

> 3. The word " anger " comes from a German word, " angst " which means

> to choke. Who here has a deep rooted problem with anger, large or

> small?

Diane

1. First time I noticed I couldn't swallow it was a piece of beef.

2. I was nervous about moving out on my own for college.

3. I believe that I do have some issues with anger.

Shelli

[Guest guest]

Hiya Liz,

Volunteering for me is a way of being of service -

Of giving back to the 'Universe' what was so freely given to me.

Being a part of the whole - making a difference.

Making a difference maybe in someones life - the way the feel

about themselves - their health etc. In a way its self-serving

because I genuinely get a sense of well-being and it builds one's

self-esteem I believe.

Good question!

Enjoy your day.

Love,

=====

(`'·.¸(`'·.¸ ¸.·'´) ¸.·'´)

«´¨ Love,

** ¨`»

(¸.·'´(¸.·'´ `'·.¸)`' ·.¸)

¸.·´

( `·.¸

`·.¸ )

¸.·)´

(.·´

`*.

*.

*** THOUGHT***

All that we are is the result,

of what we have thought.

*Buddha*

http://alternativehopeforhepc.com

http://alternativehope.royalbodycare.com (membership discount pkgs.)

***Free Audio Tape & Info Pak - Call: 877 367-9875***

The Q2 Energy Spa - http://alternativehopeQ2energy.com

[Guest guest]

Thank you for responding . son <dianaroars@...> wrote:

Hiya Liz,Volunteering for me is a way of being of service -Of giving back to the 'Universe' what was so freely given to me.Being a part of the whole - making a difference.Making a difference maybe in someones life - the way the feelabout themselves - their health etc. In a way its self-servingbecause I genuinely get a sense of well-being and it builds one'sself-esteem I believe.Good question!Enjoy your day.Love,=====(`'·.¸(`'·.¸ ¸.·'´) ¸.·'´)«´¨ Love, ** ¨`»(¸.·'´(¸.·'´ `'·.¸)`' ·.¸)¸.·´( `·.¸`·.¸ )¸.·)´(.·´`*.*.*** THOUGHT***All that we are is the result,of what we have thought.*Buddha*http://alternativehopeforhepc.comhttp://alternativehope.royalbodycare.com (membership discount pkgs.)***Free Audio Tape & Info Pak - Call: 877

367-9875***The Q2 Energy Spa - http://alternativehopeQ2energy.com

[Guest guest]

My concept of Volunteerism would be people working together to improve a situation without seeking individual personal gain. I would be attracted to Volunteer for an organization if it were something I could relate to, something that has affected my life or the life of someone I love, If I thought my help could make a difference, and I believed in the cause. Those are probably the main things for me. Ivy"elwilkinson@..." <elwilkinson@...> wrote:

Hi everybody,

I would like to get your thoughts on a couple of things.

What would attract you to volunteer for an organization? What is your concept of volunteerism?

I'm looking into this as I am a volunteer and I'm interested in what sort of incentives/gratification a person looks for.

Thank you ahead of time for your response.

[Guest guest]

Thanks Ivy....I knew I could count on you.

I hope you're doing ok and livin' life.

-- Re: survey

My concept of Volunteerism would be people working together to improve a situation without seeking individual personal gain. I would be attracted to Volunteer for an organization if it were something I could relate to, something that has affected my life or the life of someone I love, If I thought my help could make a difference, and I believed in the cause. Those are probably the main things for me. Ivy"elwilkinson@..." <elwilkinson@...> wrote:

Hi everybody,

I would like to get your thoughts on a couple of things.

What would attract you to volunteer for an organization? What is your concept of volunteerism?

I'm looking into this as I am a volunteer and I'm interested in what sort of incentives/gratification a person looks for.

Thank you ahead of time for your response.

[Guest guest]

It was a good survey question. We all need to come together and do whatever we can in order to get the voice we need in the nation right now. I hope you and your family are well too. Love, Ivy"elwilkinson@..." <elwilkinson@...> wrote:

Thanks Ivy....I knew I could count on you.

I hope you're doing ok and livin' life.

-- Re: survey

My concept of Volunteerism would be people working together to improve a situation without seeking individual personal gain. I would be attracted to Volunteer for an organization if it were something I could relate to, something that has affected my life or the life of someone I love, If I thought my help could make a difference, and I believed in the cause. Those are probably the main things for me. Ivy"elwilkinson@..." <elwilkinson@...> wrote:

Hi everybody,

I would like to get your thoughts on a couple of things.

What would attract you to volunteer for an organization? What is your concept of volunteerism?

I'm looking into this as I am a volunteer and I'm interested in what sort of incentives/gratification a person looks for.

Thank you ahead of time for your response.

[Guest guest]

In a message dated 1/1/2005 9:38:32 A.M. Eastern Standard Time, cheryl@... writes:

I hope we get the final results of this survey. As an added note, I am a high school teacher. I read in a study that the greatest number of us with AIH are teachers. You should add a question about profession. I shared a room over a course of 3 years with 5 other people at my high school in Bozeman, Montana. 4 of the 5 individuals have autoimmune disease (2 with AIH, 1 with sarcoidosis, 1 with thyroid autoimmune. My school refused to address this fact. I teach at a brand new school in Alpharetta, Georgia now

1. Please note, if you don't have AIH, but have some other autoimmune liver disease, and would like to complete the relevant surveyquestions for the other disease, please write in which disease you're answering questions for._________AIH_______ liver disease2. In what year were you diagnosed with AIH? 1/023. How long did it take for you to be diagnosed with AIH? Who knows how long I really had ita. Less than 1 monthb. Less than 3 monthsc. Less than 6 months Based on time after symptoms (I had Hep A first)d. ___ year/s4. How old were you when you were diagnosed with AIH?a. Less than 18 years oldb. 18-29 years oldc. 30-39 years oldd. 40-49 years olde. 50-59 years oldf. 60 years old or more5. You area. Femaleb. Male6. If female, have you had a child/children?a. Yesb. No7. You area. Whiteb. African-Americanc. Hispanicd. Asiane. Native Americanf. Other _____________8. Have any of your relatives been diagnosed with an autoimmune disease? NONEa. Parent/sb. Sibling/sc. Child/rend. Other relation (i.e. aunt, cousin) _____________9. What type of AIH were you diagnosed with?a. Type Ib. Type II10. At that time, had you already been diagnosed with anotherautoimmune disease, or were you diagnosed with another at the same time?a. yes, already diagnosed with __________________ in ______b. Yes, diagnosed with __________________ at the same timec. no11. Have you since been diagnosed with another autoimmune disease?a. yes, ______________________ in __________b. no12. What AIH treatment medication do/did you take to reach chemicalremission?a. prednisone or prednisoloneb. azathioprine (Imuran) or mercaptopurine (6mp)c. a and be. other _____________________13. How many years did you stay on prednisone/prednisolone beforetapering off?a. less than 6 monthsb. 6-12 monthsc. 12-18 monthsd. 1 1/2 - 2 yearse. 2-3 yearsf. 3-4 yearsg. ____ yearsh. haven't tapered off yet14. If you tapered off the above, for how long did you stay in remission? I am down to 5mg prednisone 25mg imurana. less than 6 monthsb. 6-12 monthsc. 12-18 monthsd. 1 1/2 - 2 yearse. 2-3 yearsf. 3-4 yearsg. ____ yearsh. still in remission15. How many years did you stay on azathioprine/mercaptopurine before tapering off?a. ____ yearsb. haven't tapered off yet16. If you tapered off the above, for how long did you stay in remission?a. less than 6 monthsb. 6-12 monthsc. 12-18 monthsd. 1 1/2 - 2 yearse. 2-3 yearsf. 3-4 yearsg. ____ yearsh. still in remission17. If you took a different medication, briefly describe how well itcontrolled ALT and AST.18. If you had a liver biopsy when you were first diagnosed, whatstage scarring was your liver at?a. Stage Ib. Stage IIc. Stage IIId. Stage IV (with cirrhosis)19. If you had a liver biopsy before tapering off all AIH medication,compared to your first liver biopsy, in this next biopsy the liver wasa. less scarred (one stage lower)b. was similar (same stage)c. more scarred (one stage higher)d. now showed cirrhosise. other __________________20. If you had a liver transplant, how many years did you have AIHbefore getting a transplant? ______ years21. If you had a liver transplant, has AIH returned? a. yesb. noc. related problems ________________________________ Now, please answer several questions on how you have felt at various stages of your illness.22. Regarding your symptoms when you first became sick with AIH,please rank order the following, with 1 being the most prevalent symptom.a. _3 fatigueb. 6_ brain fog (i.e., confusion, inability to concentrate)c. 2 abdominal distressd. _1 jaundicee. 4 itchingf. _7 rashesg. 5_ aching joints, musclesh. ___ ascitesi. ___ spider angiomataj. _8depressionk. ___ other _____________________________23.IF you have been in remission since first being diagnosed with AIH,how would you say you feel compared to how you felt prior tobecoming ill initially?a. _4_ more fatiguedb. _1_ brain fog (i.e., confusion, inability to concentrate)c. _2_ abdominal distressd. _5_ depressede. ___ itchingf. _6_ rashesg. _3_ aching joints and/or musclesh. ___ ascitesi. ___ other _____________________________24. IF relevant, five years after first being diagnosed with AIH, howwould you say you felt/feel compared to how you felt during your firstremission? (IF you've had AIH less than 5 years, skip to Q29.)a. ___ more fatiguedb. ___ increased brain fog (i.e., confusion, inability to concentrate)c. ___ increased abdominal distressd. ___ more depressede. ___ increased itchingf. ___ more/worse rashesg. ___ joints and/or muscles ache moreh. ___ ascites worse i. ___ diagnosed with another diseasej. ___ other _____________________________25. IF relevant, 10 years after first being diagnosed with AIH, howwould you say you felt/feel compared to how you felt five yearsearlier? (OR, skip to Q29)a. ___ more fatiguedb. ___ increased brain fog (i.e., confusion, inability to concentrate)c. ___ increased abdominal distressd. ___ more depressede. ___ increased itchingf. ___ more/worse rashesg. ___ joints and/or muscles ache moreh. ___ ascites worsei. ___ diagnosed with another diseasej. ___ other _____________________________26. IF relevant, 15 years after first being diagnosed with AIH, howwould you say you felt/feel compared to how you felt five yearsearlier? (OR skip to Q29)a. ___ more fatiguedb. ___ increased brain fog (i.e., confusion, inability to concentrate)c. ___ increased abdominal distressd. ___ more depressede. ___ increased itchingf. ___ more/worse rashesg. ___ joints and/or muscles ache moreh. ___ ascites worsei. ___ diagnosed with another diseasej. ___ other _____________________________27. IF relevant, 20 years after first being diagnosed with AIH, howwould you say you felt/feel compared to how you felt five years earlier?a. ___ more fatiguedb. ___ increased brain fog (i.e., confusion, inability to concentrate)c. ___ increased abdominal distressd. ___ more depressede. ___ increased itchingf. ___ more/worse rashesg. ___ joints and/or muscles ache moreh. ___ ascites worsei. ___ diagnosed with another diseasej. ___ other _____________________________28. IF relevant, 25 years after first being diagnosed with AIH, howwould you say you felt/feel compared to how you felt five years earlier?a. ___ more fatiguedb. ___ increased brain fog (i.e., confusion, inability to concentrate)c. ___ increased abdominal distressd. ___ more depressede. ___ increased itchingf. ___ more/worse rashesg. ___ joints and/or muscles ache moreh. ___ ascites worsei. ___ diagnosed with another diseasej. ___ other _____________________________29. Regarding side effects from prednisone or prednisolone, please checkall that you experience/d.a. X thinning of the bonesb. ___ weight gainc. ___ acned. ___ insomniae. ___ moon facef. _X diabetesg. _X high blood pressureh. ___ cataractsi. ___ other ___________________________30. Regarding side effects from azathioprine or 6mp, please checkall that you experience/d.a. ___ nauseab. ___ drop in white blood cell countc. ___ drop in platelet countd. ___ pancreatitise. ___ lymphomaf. ___ other ___________________________31. If we think hard, most of us could come up with at least onepositive thing that has come from having AIH. Please check all thatapply, or share your own.a. _X I take better care of myself now.b. ___ I appreciate how many friends I have who care about me. (I lost a few friends who were afraid of my illness)c. ___ I no longer wonder, ``How would I look with a mustache?''d. ___ While on prednisone, I have an excuse for gaining weight.e. ___ I've saved loads of money not buying beer and/or cigarettes.f. ___ Prednisone lessened my aches and pains.g. X_ other I learned to value the life we are given - it has made me grow stronger internally as an individual. I learned a lot about myself and who I was. Thank you so much for taking the time to answer these questions. Happy New Year,Cheryl

[Guest guest]

Cheryl

I'm wondering if you might consider adding another question to the survery:

is there anything remarkable/unusual about your past medical history other than AIH?

For example I had chicken pox when I was 3 months old and some doctors feel this may have been at least partly responsible for a life-long history of unusual allergic reactions. You never know where we might find a common thread. In my cancer group, we found this rare form of cancer is more common to Asian populations.

Regards

Elaine

[Guest guest]

Good suggestion, Elaine. We had a discussion thread here a couple of

years ago - turned into a very informal mini-survey. Seems those of

us DX later in life, many had shared the same experience...earlier, in

our teens or twenties, thirties either beoming ill with mono or

Epstein Barr followed by episodes of joint inflammation over the

years; some just reported episodes of joint inflamation (all dx as

something different - chondrities, bursitis, tendonitis, carpal

tunnel, etc). Made you wonder if they were all really just isolated

illnesses or part of the development or building blocks of an

autoimmune illness/syndrome.

nne

> Cheryl

> I'm wondering if you might consider adding another question to the

survery:

>

> is there anything remarkable/unusual about your past medical history

other

> than AIH?

>

> For example I had chicken pox when I was 3 months old and some

doctors feel

> this may have been at least partly responsible for a life-long

history of

> unusual allergic reactions. You never know where we might find a

common thread. In

> my cancer group, we found this rare form of cancer is more common to

Asian

> populations.

>

> Regards

> Elaine

[Guest guest]

Tasmin Bendle--

I posted it on Jan. 1. Just go to message #69923, follow the reply

directions, and send it to me. Thanks.

--Cheryl

>

> maybe i am missing the obvious but where do i log on to the survey?!!

[Guest guest]

U can also access it in the files section of the homepage.

Trish

> >

> > maybe i am missing the obvious but where do i log on to the

survey?!!

[Guest guest]

Hiya, All,

Remember that marketing survey about cochlear implants that told

us about? Well, today I received my check for $30! Thanks, ! Way cool!

) Jackie

[Guest guest]

Don't spend it all in one place Jackie.... (giggles)

Carol

Re: Survey

Hiya, All,

Remember that marketing survey about cochlear implants that told

us about? Well, today I received my check for $30! Thanks, ! Way cool!

) Jackie

[Guest guest]

Hi ,

The correct password should be USO6CIre (case sensitive). Give that a try

and see if it works.

Hope this helps!

Left ear - Nucleus 24 Contour Advance with Freedom BTE

Implanted: 12/22/04 Activated: 1/18/05

Right ear - Nucleus Freedom

Implanted: 2/1/06 Activated: 3/1/06

Deafblind/Postlingual

[Guest guest]

Hi B,

You are not alone, I have been trying to get into the survey for

months. I have an apple computer and I thought maybe that was the

reason. I keep trying and I can't get in.

a B.

On Dec 19, 2006, at 7:04 PM, wrote:

> Hi Alice,

> I have tried for weeks to get that Stratinno Survey and they

> won't accept the log in Password USO6CIrf and tried it your way

> as well and it keeps say WRONG I have no idea what the problem is .

> So many have been successful.

> Maybe should try it on my hotmail program. will give that a try and

> see where

> it goes.

> B.

>

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

> I am using the free version of SPAMfighter for private users.

> It has removed 136 spam emails to date.

> Paying users do not have this message in their emails.

> Try SPAMfighter for free now!

>

>

[Guest guest]

Hi ,

what is the web site for the survey again. I lost it someplace.

a B

On Dec 19, 2006, at 7:22 PM, Kozlik wrote:

> Hi ,

>

> The correct password should be USO6CIre (case sensitive). Give that

> a try

> and see if it works.

>

> Hope this helps!

>

>

>

> Left ear - Nucleus 24 Contour Advance with Freedom BTE

> Implanted: 12/22/04 Activated: 1/18/05

>

> Right ear - Nucleus Freedom

> Implanted: 2/1/06 Activated: 3/1/06

>

> Deafblind/Postlingual

>

>

>

[Guest guest]

Hi a,

Unfortunately, I no longer have the URL. (Perhaps has it?) I just

tried doing a Google search for the survey, but came up empty. Sorry!

Left ear - Nucleus 24 Contour Advance with Freedom BTE

Implanted: 12/22/04 Activated: 1/18/05

Right ear - Nucleus Freedom

Implanted: 2/1/06 Activated: 3/1/06

Deafblind/Postlingual

[Guest guest]

Hi B.,

> won't accept the log in Password USO6CIrf and tried it your way

The password is a bit different, I think. We had a slightly different one

here in Germany (DE instead of US, of course but the rest should be the

same.

So try US06CIre

It is the number 0 (zero), not the letter O as in Ottawa ;-)

Hope this helps,

Sabine in Cologne, Germany with

(12/98),

Christian (4/00, great hearing with 2 CIs since 4/01 after meningitis),

Florian (6/02) and

Tobias (8/04) -

all growing up bilingually German/English

> as well and it keeps say WRONG I have no idea what the problem is .

> So many have been successful.

> Maybe should try it on my hotmail program. will give that a try and see

> where

> it goes.

> B.