Re: hi and concerned for this group>Pam

[Guest guest]

I totally agree!

Belinda

>

> Thanks Belinda, that was eloquently said as always. We can't lose

sight of

> the fact that we all need to be respectful of each other. Although

I don't

> always enjoy the mediator role I'm happy to try when these sorts of

disputes

> come up. I really prefer that private emails don't end up on the

list, that

> undermines both trust and respect. If people feel threatened by

things

> others say to them either privately or publicly I hope you'll feel

> comfortable enough to come to me with your concerns. Really

personal and

> heated arguments always bother me when I read them on lists and I

know they

> bother others. This isn't what we eagerly open our mailboxes for

every

> morning.

>

> There should be no question that anyone with any type of

neurological

> disorder is welcome on this list.

>

> Love,

> Pam

>

>

> hi and concerned for this group

>

>

> Hi to all,

> First off I want to say I think anyone should be welcomed in this

> group and I do not want to see anyone leave this group because of

> disagreements. I do not think that because someone has a different

> brain disease they could or would ever hurt anyone else in this

> group. I have Corticobasal ganglionic degeneration and I have been

> told that the symptoms I have relate to CBGD but that I am also

going

> to have symptoms that I will have and maybe a few others will have

> but not all. They don't know enough to say no you won't have this

> symptom or yes you will. My doctor told me he can't tell me

> why I have certain symptoms or what in my brain will cause it.

> I saw mentioned that Aussie Ann is afraid that she might have hurt

> the group because she has PAF. Ann you have not hurt anyone on this

> list. You are well loved and I want to hear from you and how you are

> doing and your concerns.

> Aletta, I don't believe you have hurt anyone on this list. No one is

> going to go on the street and buy drugs. If a drug is mentioned and

> someone thinks it may help them then they will go and ask their

> doctor about it. To me that is belittling the intelligence of the

> people who come to this group. Aletta, you may not have all the

> symptoms that everyone else has but that doesn't mean you do not

need

> support from us. I do not want to see you leave this group either.

> I do believe what Zak has said that there are people who are afraid

> to say anything in this group for fear of being knocked down in

their

> symptoms, fears, and trials. I also have recieved emails concerning

> this. A support group is here to help anyone. To listen, to agree or

> disagree. There is no one on here who is always right and can say

> they are 100% of the time.

> Bill, I believe you are an asset to this group. You have done a lot

> of research and you have the experiences of what Charlotte went

> through. I believe you also know that just because Charlotte didn't

> go through some of the things others have or because she didn't have

> pain, or because she wasn't given pain pills for her pain doesn't

> mean that others doesn't have the symptoms they mention or does not

> mean they do not have MSA or does not mean they do not have pain. It

> also does not mean that if they have pain they shouldn't take pain

> pills. I know that we do not know what someone has until an autopsy

> is given. If an autopsy is not given we can not be sure and even

then

> my doctor said there still could be a reason of doubt about a

> diagnoses. You have mentioned this yourself, Bill.

> What I would like to see for this support group and what I have

tried

> so many time to do myself is be supportive of all in this group. If

> we disagree with someone we have that right to say so. If we agree

we

> also have that right to say so. We also have the right to say how we

> are feeling any given day. We all have good days and bad days

whether

> we be caregivers or someone who has a rare disease. We are both

going

> through a lot of different emotions. I can tell you I have had fear,

> anger, denial, acceptance of the disease. I can go through them

> several times over and over again. I am not put on this earth to

> judge someone but to help in anyway that I can. If I have a fear I

> know that I can say my fears and someone will be there with open

arms

> to give me that hug or words of encouragement. I believe that is

what

> everyone on this list really wants to do. No one wants to see anyone

> belittled for what they say or dont' say. I think someone of us

> express ourselves better than others and sometimes we just don't

feel

> well enough to express ourselves and also say what we think and turn

> around and have to explain our feelings. If this was something

> curable and how many times have I wished it was, then I do not think

> that so many feelings would be flying like they do. We have to

except

> everyone for who they are. If what someone says makes us so mad then

> we need to skip over that email because believe it or not someone is

> going to find the good in that email. Like I said we are adults no

> one is going to run to the corner to buy drugs from someone and if

> they do they have been doing it all along. If someone came on here

> saying they wanted to commit suicide because they can't live like

> this anymore are we going to say because you said that others are

> going to commit suicide? No, I don't think so! We are going to try

> and find help for that person.

> So let us live together the best way we can. We are all different

and

> that is a good thing. If we all felt and thought the same way we

> would be a very boring group. I think I have gone on long enough.

> There is a lot of love and caring in this group. No one wants to see

> anyone leave because we all have value.

> God bless us all,

> Belinda

>

>

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