hi and concerned for this group

[Guest guest]

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