Re: Negative Comments/Pam

[Guest guest]

Thanks for the post, Pam. I totally agree with you.

The increasing amount of negativity on this board is

really troublesome. Sometimes I feel like I can give

up wathching my soap opera because there is so much

drama here. :-) I've tried to ignore the negative

comments, but that one really got to me...I guess b/c

I am one of the ones not " suffering first hand " . I

don't, however, feel that my involvement in the group

is any less valid.

I joined the group a year and a half ago when my

father was first diagnosed. Because there is so little

information on MSA out there, I was very pleased to

find this group. The wealth of information here was

astounding. (And, I should add, much of it came from

folks who are not directly suffering from the

disease). Although I was neither suffering from MSA

myself or acting as the primary caregiver for my

father, I felt welcome and learned so much. It's true

that I have only " second-hand experience " with the

disease. That's the main reason I came here...to learn

what people suffering from MSA were going through,

what was helping them, not helping them, etc. so that

I could be of more help to my father and mother (his

caregiver). My parents are not the " researching " types

and were pleased and touched that I had become

involved in this group. They didn't have the time or

energy to devote to a group like this. Had it not been

for my involvement and for the willingness of *all* of

the people here to share what they knew, I wouldn't

have had all the information to pass along to my

father and his Drs. who, themselves, didn't know too

much about the disease. There were times when my

father's neurologist would ask my dad, " What's new on

'the MSA list'? "

I'll just end by saying that all of us who have the

misfortune of being touched by MSA, either directly or

indirectly, are suffering or have suffered in some

way. I realize that I can in no way understand what

it's like to have my body ravaged by the disease, but

still I suffer. It's just on a different level.

in OK

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