RE: I approve of the flyer format and I appreciate Notan's suggestions.

[Guest guest]

I have an appointment with Richter at the

Cleveland Clinic on 4/5/04. I will be speaking with

him then about the seminar.

Mark from Ohio

--- lindwoodwebtv <lindwood@...> wrote:

> I especially think it would be good for someone with

> Cleveland Clinic Dr.connections to ask their doctor

> what they think.

>

>

>

[Guest guest]

Thank you Mark!

I think I’ll hold off as long as possible

to register for the conference until we hear from you. Could you please let us

know Dr. Richter’s feelings about this after you see him?

Thanks so much.

Sandi

Re: I approve

of the flyer format and I appreciate Notan's suggestions.

I have an appointment with Richter at the

Cleveland Clinic on 4/5/04. I will be

speaking with

him then about the seminar.

Mark from Ohio

--- lindwoodwebtv <lindwood@...>

wrote:

> I especially think it would be good for

someone with

> Cleveland Clinic Dr.connections to ask their

doctor

> what they think.

>

>

>

[Guest guest]

Sandi,

What questions do you want me to ask Dr. Richter on

Monday?

Mark from Dayton

--- Holt- <holt-smith@...> wrote:

> Thank you Mark!

> I think I'll hold off as long as possible to

> register for the conference

> until we hear from you. Could you please let us know

> Dr. Richter's

> feelings about this after you see him?

> Thanks so much.

>

> Sandi

>

> Re: I approve of the flyer

> format and I appreciate

> Notan's suggestions.

>

> I have an appointment with Richter at the

> Cleveland Clinic on 4/5/04. I will be speaking with

> him then about the seminar.

>

> Mark from Ohio

>

>

> --- lindwoodwebtv <lindwood@...> wrote:

> > I especially think it would be good for someone

> with

> > Cleveland Clinic Dr.connections to ask their

> doctor

> > what they think.

> >

> >

> >

>

>

>

> _____

>

>

[Guest guest]

Mark,

I know I'd be interested in what he thinks the reaction (of the docs / nurses in attendance) will be to having patients right there alongside them -- will we be perceived as "intruders in the holy medical inner sanctum" or "interesting participants with insight to share", ya know?

I guess it comes down to whether the participants really want to LEARN about the "lifestyle" part of achalasia (what it's like to go through the tests, what it's like to be told it's all in your head, what it's like to hurl in the middle of a restaurant, what it's like to have excruciating pains w/ no warning [and with docs telling you there's nothing they can do to fix them when there are SEVERAL things they can do!], what it's like to avoid social settings that serve food) or if they're just there b/c they have to "serve their time" in order to keep their license to practice.

I'm interested in learning what is offered by the speakers at the symposium, and I'm also interested in "spreading the achalasia gospel" if people are interested in hearing any of it (but I don't want to push myself on anyone who is really just there to party and get their credit hours.) I'm not wanting anyone there to "diagnose me" or anything like that; I just want an opportunity to spread the word and be listened to as a PEER, not as a peasant (which unfortunately is how many specialists and docs in general seem to view their patients.)

It was interesting yesterday at my appt. with the endocrinologist.... he was reviewing my medical history sheet that I'd filled out, and he was asking me questions about why I was there, etc. After a minute or two he looked back onto the form to see where I had filled in my occupation (controller, or fancy word for "bookkeeper") and he asked, "You have down here that you're a bookkeeper, but do you have a medical background?" He was surprised to learn that I've never taken any type of medical courses. He's evidently not accustomed to patients who actually research and read stuff, and who know a couple of medical terms and their meanings, and who also use those terms when giving a medical history! )

That's all I really ask of ANYONE in life... treat me w/ respect, and listen to what I'm saying with an open mind; don't dismiss me just b/c I don't have a medical degree, b/c I'm as smart as anybody else -- I just don't have a piece of paper in a frame on my wall to "prove" it. I have a lot of good information to share; all I ask is the opportunity to share it.

Debbi in Michigan

Sandi,What questions do you want me to ask Dr. Richter on Monday?Mark from Dayton

[Guest guest]

Hi Mark,

I basically would like to know if we’d

be well received or not.

I would just like to know if it would be

ok with him to stand out front and “greet “people on they’re

way in and pass out some flyers or buttons to wear, and if the participants are

there to learn more about achalasia, I would like to

thank them for their interest in our disease and welcome them to come and visit

our group.

Or if he would he rather we not do this, is there an informational packet we could add our

group flyer to?

Thanks!

Sandi

Re: I approve

of the flyer format and I appreciate Notan's suggestions.

Mark,

I

know I'd be interested in what he thinks the reaction (of the docs /

nurses in attendance) will be to having patients right there alongside

them -- will we be perceived as " intruders in the holy medical inner

sanctum " or " interesting participants with insight to share " , ya

know?

I

guess it comes down to whether the participants really want to LEARN about the

" lifestyle " part of achalasia (what it's like to go through the

tests, what it's like to be told it's all in your head, what it's like to hurl

in the middle of a restaurant, what it's like to have excruciating pains w/ no

warning [and with docs telling you there's nothing they can do to fix them when

there are SEVERAL things they can do!], what it's like to avoid social settings

that serve food) or if they're just there b/c they have to " serve their

time " in order to keep their license to practice.

I'm

interested in learning what is offered by the speakers at the

symposium, and I'm also interested in " spreading the achalasia

gospel " if people are interested in hearing any of it (but I don't want to

push myself on anyone who is really just there to party and get their credit

hours.) I'm not wanting anyone there to " diagnose me " or

anything like that; I just want an opportunity to spread the word and be

listened to as a PEER, not as a peasant (which unfortunately is how many

specialists and docs in general seem to view their patients.)

It

was interesting yesterday at my appt. with the endocrinologist.... he was

reviewing my medical history sheet that I'd filled out, and he was asking me

questions about why I was there, etc. After a minute or two he looked

back onto the form to see where I had filled in my occupation (controller, or

fancy word for " bookkeeper " ) and he asked, " You have down here

that you're a bookkeeper, but do you have a medical background? " He

was surprised to learn that I've never taken any type of medical courses.

He's evidently not accustomed to patients who actually research and read stuff,

and who know a couple of medical terms and their meanings, and who

also use those terms when giving a medical history! )

That's

all I really ask of ANYONE in life... treat me w/ respect, and listen to what

I'm saying with an open mind; don't dismiss me just b/c I don't have a medical

degree, b/c I'm as smart as anybody else -- I just don't have a piece of paper

in a frame on my wall to " prove " it. I have a lot of good

information to share; all I ask is the opportunity to share it.

Debbi

in Michigan

Sandi,

What questions do you want me to ask Dr. Richter

on Monday?

Mark from Dayton

[Guest guest]

Sandi & Debbi:

Met with Richter at the Cleveland Clinic today.

I mentioned that several individuals from the group

will be attending the upcoming seminar and may want to

share information with the medical personnel.

He stressed to me that the seminar is for doctors,

nurses and such and may be too technical and expensive

for patients.

We probably need to tread lightly at this event. I

never did ask him specifically about the buttons and

flyers. I suggest calling him at the CC: 216-445-9102

As for my situation, I'm being scheduled for myotomy

the first week of June. I really like this doctor,

its nice to speak with someone who has experience with

this disease.

Mark from Dayton, Ohio

--- Holt- <holt-smith@...> wrote:

> Hi Mark,

> I basically would like to know if we'd be well

> received or not.

>

> I would just like to know if it would be ok with him

> to stand out front

> and " greet " people on they're way in and pass out

> some flyers or buttons

> to wear, and if the participants are there to learn

> more about

> achalasia, I would like to thank them for their

> interest in our disease

> and welcome them to come and visit our group.

>

> Or if he would he rather we not do this, is there an

> informational

> packet we could add our group flyer to?

>

> Thanks!

> Sandi

>

> Re: I approve of the flyer

> format and I appreciate

> Notan's suggestions.

>

> Mark,

>

> I know I'd be interested in what he thinks the

> reaction (of the docs /

> nurses in attendance) will be to having patients

> right there alongside

> them -- will we be perceived as " intruders in the

> holy medical inner

> sanctum " or " interesting participants with insight

> to share " , ya know?

>

> I guess it comes down to whether the participants

> really want to LEARN

> about the " lifestyle " part of achalasia (what it's

> like to go through

> the tests, what it's like to be told it's all in

> your head, what it's

> like to hurl in the middle of a restaurant, what

> it's like to have

> excruciating pains w/ no warning [and with docs

> telling you there's

> nothing they can do to fix them when there are

> SEVERAL things they can

> do!], what it's like to avoid social settings that

> serve food) or if

> they're just there b/c they have to " serve their

> time " in order to keep

> their license to practice.

>

> I'm interested in learning what is offered by the

> speakers at the

> symposium, and I'm also interested in " spreading the

> achalasia gospel "

> if people are interested in hearing any of it (but I

> don't want to push

> myself on anyone who is really just there to party

> and get their credit

> hours.) I'm not wanting anyone there to " diagnose

> me " or anything like

> that; I just want an opportunity to spread the word

> and be listened to

> as a PEER, not as a peasant (which unfortunately is

> how many specialists

> and docs in general seem to view their patients.)

>

> It was interesting yesterday at my appt. with the

> endocrinologist.... he

> was reviewing my medical history sheet that I'd

> filled out, and he was

> asking me questions about why I was there, etc.

> After a minute or two

> he looked back onto the form to see where I had

> filled in my occupation

> (controller, or fancy word for " bookkeeper " ) and he

> asked, " You have

> down here that you're a bookkeeper, but do you have

> a medical

> background? " He was surprised to learn that I've

> never taken any type

> of medical courses. He's evidently not accustomed

> to patients who

> actually research and read stuff, and who know a

> couple of medical terms

> and their meanings, and who also use those terms

> when giving a medical

> history! )

>

> That's all I really ask of ANYONE in life... treat

> me w/ respect, and

> listen to what I'm saying with an open mind; don't

> dismiss me just b/c I

> don't have a medical degree, b/c I'm as smart as

> anybody else -- I just

> don't have a piece of paper in a frame on my wall to

> " prove " it. I have

> a lot of good information to share; all I ask is the

> opportunity to

> share it.

>

> Debbi in Michigan

> Sandi,

>

> What questions do you want me to ask Dr. Richter on

> Monday?

>

> Mark from Dayton

>

> _____

>

>

[Guest guest]

> Sandi & Debbi:

>

> Met with Richter at the Cleveland Clinic today.

> I mentioned that several individuals from the group

> will be attending the upcoming seminar and may want to

> share information with the medical personnel.

>

> He stressed to me that the seminar is for doctors,

> nurses and such and may be too technical and expensive

> for patients.

>

> We probably need to tread lightly at this event. I

> never did ask him specifically about the buttons and

> flyers. I suggest calling him at the CC: 216-445-9102

>

> As for my situation, I'm being scheduled for myotomy

> the first week of June. I really like this doctor,

> its nice to speak with someone who has experience with

> this disease.

Mark,

Let me first tell you how wonderful it is to hear the good news

about getting scheduled for surgery! You must be excited about this!

I also wanted to thank you so much for speaking to Dr. Richter about

the symposium. It's good to have a general feeling as to what to

expect. It will be wonderful getting to see Deb, and going to visit

, but my formost reasons for wanting to attend are really just

to hear what they have to say. We may not even get around to the

flyers. I think we'll have to get a feel for things once we get

there.

Well, to be on the safe side, maybe Deb and I should take a class

in achalasia 101? What do you think Deb? I think I saw one offered

at school! We might need to edgeacate arselves a bit about akalazha

before goin there! LOL

Sandi (thinking some feathers may have gotten ruffled today by his

comment!)

[Guest guest]

Sandi,

Dr. Richter meant no disrespect with his comments. He

is truly concerned about his A patients. I spent well

over 1 hour talking to him on Monday.

I gave him our site address, I suspect his

office will be participating in some discussion or at

least monitoring our experiences.

Mark from Dayton

>

>

> Mark,

> Let me first tell you how wonderful it is to hear

> the good news

> about getting scheduled for surgery! You must be

> excited about this!

>

> I also wanted to thank you so much for speaking to

> Dr. Richter about

> the symposium. It's good to have a general feeling

> as to what to

> expect. It will be wonderful getting to see Deb, and

> going to visit

> , but my formost reasons for wanting to attend

> are really just

> to hear what they have to say. We may not even get

> around to the

> flyers. I think we'll have to get a feel for things

> once we get

> there.

>

> Well, to be on the safe side, maybe Deb and I

> should take a class

> in achalasia 101? What do you think Deb? I think I

> saw one offered

> at school! We might need to edgeacate arselves a bit

> about akalazha

> before goin there! LOL

>

> Sandi (thinking some feathers may have gotten

> ruffled today by his

> comment!)

>

>

>

>

>

=====

Mark Dodson

Miami Quality Services

2760 Washington Road

Covington, Ohio 45318

937-620-9625 mobile

937-335-4532 fax

bullscreek@...