Re: Alana

February 17, 2000

Charlie,

Yes, Alana is seeing Imundo at Babies Hospital. and when I can in Nyack

Hospital when she is there, much more conveneinet, we live 15 minutes from

there.

is doing the same thing now with Alana, MTX, every other day pred,

(hopefully for only a few more weeks) , Voltaran and Ultram (pain killer)

She doesn't seem to know much at all about nutritionals.

I am using the meds to get the disease under control but using the

nutritionals to help her body.

I hope to eventually get rid of the meds and keep her body strong with the

nutritionals, but we'll see what happens. I work in the holistic field and

have many friends who are advocating for me.

I'll keep you posted. I'd love to speak with Rena if possible, I can be

reached at 914-941-3947 or on my office line at 800-863-3403 ( I work from

home)

Thanks for your nice message.

Bonnie

Regional Director, PHD Products

http://phdproducts.com mailto:bonnie@...

800-863-3403

Alana

>From: Charlie <_C_S@...>

>

>Bonnie:

>Welcome to the group.

>

>It's important to treat the disease aggresively to prevent long-term joint

>damage. Nutrition is important, but it can't replicate the potency of the

>types of drugs used for JRA.

>

>Our son Elliot, age 5, is also on prednisone, methotrexate and

alternate-day

>steroids. He's was diagnosed 3 1/2 years ago by Dr. Jerry s, who was

>at Columbia Presbytarian. Dr. s died 2 1/2 years ago, and Dr.

>Immundo took over the practice. She follows his protocol, and is supposed

>to be very bright and capable. Is she the doctor you are seeing?

>Now we live in N.J. and see Dr. Kimura in Hackensack (who also trained

under

>Dr. s). Dr. Immundo also shares an office with Dr. Kimura in N.J.

>

>My wife, Rena, who is also on this list, can give you more details, and

>better answer any questions you have.

>Good luck. Please keep us posted.

>

>Charlie

>

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

January 20, 2006

Alana:

Since your post specifically quoted at least a portion

of one post I made, I feel entitled to respond to you

directly. I do so, not to debate right or wrong, but

hopefully to clarify a few items.

First, none of the posts mentioned - were directed at

or to anyone in particular. A simple exchange of

varying viewpoints. If any one person felt offended

for some reason, I do apologize - there is NO intent

to make anyone feel slighted. The posts noted below,

IMO, have absolutely nothing to do with believing in

God, being Agnostic, or whatever. If read carefully,

the posts did not seem to base any statement on belief

in God or not. Also, the threads noted were not

extensive (at least compared to some of the topics in

this group) - and as stated the delete key is always

available.

Contrary to the stated reasons below:

a) the reason the religion thread was introduced

several weeks back had to do specifically with daily

living with SMA - particularly in regard to

opinions/beliefs by some relatives of mine as to why

my children have SMA. Like it or not,

spiritual/ethical beliefs affect the SMA community in

a profound way - at the very least those beliefs of

people outside of the SMA community looking in. I

want/need/have to understand why my children may be

viewed/perceived in different ways - so that I may

prepare them as best I can to live in a world of

ignorance, insensitivity, and stereotypes.

b)I agree that a friendly dialog with folks here about

the practical daily living issues regarding SMA is

what this group is all about. I very much consider

trying to help my children learn to live in a world

still not accepting/welcoming of people disabilities -

to be ALL about daily living.

Philosophical/metaphysical topics are simply sometimes

unavoidable - especially if one considers dealing with

stereotypes, biases, etc. that 'normal' AB people may

have in regards to people with SMA - and in a broader

sense disabilities - to be such topics. Also, all

posts here are of a personal or individual nature -

not just ones dealing with more subjective topics.

c) From what I can tell based on the myriad of

responses on various tangents of the initial religious

thread (which, again, specifically requested the

debate NOT turn into the God-v-No God debate) - you

are by no means in the minority regarding your

personal beliefs. Also, by stating my own personal

opinion regarding abortion - which as stated was not

linked in any way to my spiritual beliefs ( & its not)

- I further indicated that I don't & won't push my

view of abortion on others - though I will express my

opinion. I'm sorry expressing my personal opinion

apparently somehow offends you. I certainly did not

intend to offend you by typing how I felt on that

issue.

Unlike what was apparently viewed as " bait & nip "

posts - I saw varying ideas expressed openly. I

personally appreciated Doug's posts immensely (though

I didn't necessarily agree with them). Maybe that's

just one significant difference between how men and

women communicate (and also how they view

communications between others).

Among the many varying views of a very diverse group -

yours is one I always appreciate - though not

necessarily always agree with. Regardless my personal

belief, I appreciate the expression of those of

others. Here, this issue - I respectfully disagree

with you.

Mitch

--- Alana <alert@com cast.net> wrote:

> Hi Owners/Moderators and Members,

>

> I am posting publicly about specific messages,

> though, do not have an

> interest in engaging the writers on their

> particular. Nor do I wish

> to quash their opinions or presence on the list. I

> am hoping to

> change a trend so that I am comfortable staying

> here.

>

> Specifically, I am becoming very discouraged about

> the volume of

> particular types of messages being posted here

> recently. Today, one

> states, as fact, that if you've ever witnessed the

> birth of your

> child you know abortion is wrong. Another states

> that we're " playing

> God " if we choose not to carry to-term a brain-dead

> fetus - assuming

> we all believe in a god. These messages personally

> offended me, but

> I am able to press the delete key and have decided

> to no longer enter

> into a public debate on this list about such charged

> but subjective

> topics.

>

> I have stopped engaging here because, a) I have no

> need or desire to

> talk someone out of their spiritual, ethical

> beliefs, I want to

> maintain a friendly dialogue with folks here about

> the practical

> daily living issues regarding SMA without offending

> people about

> philosophical/metaphysical topics that are very

> personal and

> individual, and c) I already know I'm in the

> minority in that I don't

> adhere to ANY religious doctrine and I don't expect

> many people to

> understand this, and find very few who are able to

> respect my beliefs.

>

> A 3rd message today invites those of us so inclined

> to tune in to a

> Christian music link. I do not mind a few such

> messages on this list

> as it's a very diverse community and there's always

> that delete key

> again for things that don't interest me. But today

> that message

> landed on top of many days of posts that mostly

> never seemed to be

> able to come around to the moderate, " lets agree to

> disagree and move

> on to another topic. "

>

> It seems people have stopped being careful to avoid

> saying

> inflammatory things here, myself included. We used

> to couch things

> with polite phrases like, " I know not everyone will

> agree... " or " For

> those of you who do/don't believe in God... " or

> " Apologies to those

> who... " We used to assume less about what each

> other feels or

> believes. We rarely " baited " each other, and

> quickly nipped it in

> the bud. I'm hopeful that we can get back to that

> unusual and

> pleasant aspect of this group. This might also

> involve more careful

> use of the " Reply " button. Maybe we don't always

> need to reply to

> the whole group.

>

> Thank you for considering my request for a change in

> tone.

>

> Alana - The Alienated Agnostic

>

__________________________________________________

January 20, 2006

I probably should stay out of the conversation, but I just can't help

wondering every time I read a post on this topic... Why are religious

conversation offensive to the non-religious? I disagree with hundreds

of opinions on a myriad of topics posted to this list, but they don't

offend me.

Granted, a few of the religion posts have strayed off-topic, and that's

an issue I can understand, but it also happens pretty frequently in any

discussion in any forum. Annoying, maybe, but offensive?

It doesn't bother me if people believe differently, and it doesn't

bother me if they discuss their beliefs. I don't understand why

discussion of Christian beliefs is offensive. For me, my religion is an

integral part of who I am, so of course it does play a part in my

opinions on all sorts of issues. I'd imagine that same feeling goes for

many others. If somebody's against abortion because they are opposed to

" playing God, " I don't think it's wrong to state that opinion. Sure,

it's not going to be a convincing argument in a debate with anybody who

doesn't accept the premise that God exists, but it's still a sincere

statement of that person's opinion and their reasoning behind it. Is it

really offensive for them to share that? I don't think the purpose of

these conversations has ever been to change anybody else's

beliefs/thoughts/opinions, but to help everyone understand one

another's beliefs better. (I tend to understand my own beliefs better

after I've shared them with someone else.) Would all the religious

posts have been acceptable if they'd been prefaced with " Apologies to

those who don't believe in God... " ?

I hope I'm not coming across as argumentative or snarky, because that's

not how I'm intending this at all. I'm just genuinely curious about why

religion is often such a taboo topic of conversation. I know this is an

international forum, but for the sake of discussion, America is

supposed to be about freedom of religion. To me, that means that we

should be able to speak openly about our own beliefs and listen

respectfully to others, not that we should be hesitant to approach the

topic, afraid of somebody taking offense.

Of course there is a point where people need to say, " Let's agree to

disagree, " and move on with their lives. I've just noticed (in life in

general, not just here) that people often seem overly eager to reach

that point. As soon as there is a point of disagreement, they want to

discuss something else. But why? The most interesting conversations

often come from disagreement. That's when I get more insight into why

other people think the way they do, and I get to refine--sometimes

revise--my own opinions. As long as the disagreement remains civil and

does not become too circular, I think it's fine for a conversation to

continue over the course of several days.

Just my opinions.

-e