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I'm afraid that the words " butt out " are neither constructive nor positive.

This is greatly offensive to the many non-caregiving relatives and friends

and former caregivers who still share in this forum regularly. People who

come here ask us questions and we answer them as best we can, no one needs

to take our advice but we all offer it up with love.

I hope those who have a problem with things said to them will write to the

individuals involved and not continue to pollute the list with these sorts

of negative remarks.

Love,

Pam

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I would like to offer some positive comments:

I would simply observe this list is a welcome, interactive resource to

anyone - patient, care giver, relative or friend of either. " Anyone "

includes those whose lives are impacted by MSA and similar neuro

degenerative processes, and those who can make a contribution to the list

based on their personal impact of this miserable disease.

I am speaking as a care giver, on behalf of my wife, Terry [whose is the

patient], and on behalf of my family members all of whom have benefited

enormously from the help offered on this list. I am grateful to all who

contribute. I am especially grateful to the former care givers who have

lost their beloved patients and who still chose to help the rest of us.

This list makes it possible to cope much more effectively with MSA.

If it ain't broke, don't fix it.

PS I support Pam's comments also.

Message: 5

Date: Thu, 4 Jul 2002 08:59:04 -0300

Subject: Negative Comments

I'm afraid that the words " butt out " are neither constructive nor positive.

This is greatly offensive to the many non-caregiving relatives and friends

and former caregivers who still share in this forum regularly. People who

come here ask us questions and we answer them as best we can, no one needs

to take our advice but we all offer it up with love.

I hope those who have a problem with things said to them will write to the

individuals involved and not continue to pollute the list with these sorts

of negative remarks.

Love,

Pam

Sennewald Charlottesville, Virginia

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Hi Pam,

Without perpetuating this discussion unnecessarily or adding to the level of

concern over this topic, I just want to say that I read Bill's post and

although he may prefer to speak for himself, I didn't react to the overall

tone of the posting as being intentionally negative. To the contrary, I

felt the general intent of the posting was to encourage each of us to be

slower to react and more tolerant of the views expressed on the list -- even

when we disagree with those views. In other words, I think the " butt-out "

phrase was simply an unfortunate choice of words that were not in character

with the balance of the message.

I know there are concerns on the part of some on this list that we need to

challenge questionnable or potentially harmful advice if it appears in

postings, but in general I think each of us comes to the list with the

responsiblity to question any advice posted here and to consult with our

physicians before changing the course of care or trying new meds or

supplements. Otherwise, I think the list serves a variety of purposes for

each of us, one of which may be a place to vent our frustrations and know

that there are others who will understand or at least not judge us too

harshly.

Anyway, just add my vote to those already cast for this list to continue to

be a resource to those needing information; a shoulder to cry on for those

suffering from the disease or from the pain of having a loved one endure the

disease; a source of up-to-date information about progress in research for a

treatment/cure; a place where you can share with people who know first-hand

what you are experiencing; and a sounding board for those needing to vent to

be able to vent.

Regards,

Jerry Cash

Negative Comments

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Jerry, I admit I read the note quickly and the butt out comment jumped out

as it was written in capitals which in email etiquette is usually read as

shouting. I am still very confused as to exactly what incident of criticism

was being referred to... I took it that there was some specific incident

being hinted at and instead of it being addressed directly to the people

involved it was directed as a general letter to the list. That's my problem

with the note. I have no quarrel with Bill P. I already know he regrets

the remark as a poor choice of words.

Take care,

Pam

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Pam,

I understand your points, and I agree that in general when we come to have

strong feelings about a topic and when it becomes more of a personal

disagreement with another poster than an issue the rest of the list

understands or gives a hoot about, those issues ought to be taken off line

and discussed in private emails between the parties involved.

ly, I find it useful to just delete postings by parties I tend to

disagree with rather than reading them and becoming frustrated.

Thank you for your continued excellent work and stewardship of this list.

Regards,

Jerry

RE: Negative Comments

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unsubscribe by sending a blank email to

shydrager-unsubscribe

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