RE: hi and concerned for this group

[Guest guest]

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

If you do not wish to belong to shydrager, you may

unsubscribe by sending a blank email to

shydrager-unsubscribe

[Guest guest]

Well written Belinda!

I hope everyone decides to stay. I need the hope that I feel when someone

finds a medication to relieve their suffering and I need the education from

others about so much I don't know. How I would love for a doctor to look at

me and tell me I am a text book " something " and be able to treat me. All I

get is a lot of I don't know's and atypical this and atypical that. This is

the only group that I truly believe can hold any hope for myself and my

husband. The other groups that we belonged to can no longer offer support

or understanding because this disase is not PD.

Please, Aletta, Bill, Everyone... re-read what Belinda wrote and stay. For

one, I need you guys.

Deborah aka Tenacity

From: " belnorest "

Reply-To: shydrager

To: shydrager

Subject: hi and concerned for this group

Date: Mon, 17 Jun 2002 12:09:21 -0000

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

If you do not wish to belong to shydrager, you may

unsubscribe by sending a blank email to

shydrager-unsubscribe

[Guest guest]

I have only been on this list for a short time while trying to find out

about Shy Drager, even before the doctors diagnosed my husband with it.

You all are very unique and very wonderful people. I have learned a lot from

all of you, and have gained some wonderful friends that I hope to meet one

day. Please take care. Love, Shirley

hi and concerned for this group

> Date: Mon, 17 Jun 2002 12:09:21 -0000

> 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

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

> shydrager-unsubscribe

>

[Guest guest]

Belinda,

You deserve a medal for this. Everything you say here

is spot on. I would remind people of the MSA

Neaopolitan Analogy and that so many people's inital

and ongoing symptoms are so varied. Also many of us

including me are in the proverbial no man's land;

plenty of symptoms but no diagnosis and no GP or

specialist who has been able to pin something down.

This becomes further complicated, because they won't

prescribe anything to alleviate your symptoms when

they don't know what you have. I have a point and I am

getting to it. Although I don't know where I belong,I

would have went crazy by now without the support of

this group. The people who have helped me, including

Bill Werre often have disparate views on various

matters and that is healthy. People like Aletta have

given me inspiration to rise above my troubles and

enjoy life as best I can. Right now my hands are

getting progressively worse and I am frightened I will

totally lose the use of them. Although it may sound

dumb, the biggest worry this causes is relying on

someone else to help me with very personal hygeine

matters. I can't see the Neuro until 24/7/2002 (the

earliest he is available) and the GP did not want to

get involved seeing I am seeing the Neuro. The hand

situation in a nutshell is, can no longer use

chopsticks, cramping across the top of both hands

behind knuckles when vaccuuming, cooking stir fry and

trying to turn a wok of food over, house painting,

hands are even starting to cramp when typing. My

balance problems are worse, positive Romberg (sway in

all directions like I am standing in a gale), tandem

gait fall sideways with one or two steps. Anyway,

we'll see what the neuro says.

Anway enough of my woes. Please can we all stay and

help each other. Also can we focus on the issues

rather than getting personal. When I played Aussie

Rules football as a younger man, I always played the

ball not the man (think about that).

Best regards to all Sowter (Melbourne,

Australia)

--- belnorest Belindastime@...> wrote: > 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

>

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>

[Guest guest]

,

I am sorry that you have not been diagnosed yet. I know that Rose has

also been through a lot of test and knows a lot of things that are

wrong but not a clear cut diagnoses yet. I am sure either of you are

alone in this. When I first came to this group I didn't have a

diagnoses yet either. It was so hard and so scary. I think it is

scarier than when you do know what you have been diagnosed with. At

least then you can say well they think this is it so I can read and

learn as much about it as I can. I am glad you found your way here.

We can help you if someone else has your symptom and see what works

for them. I also am having a harder time with my hands now. I don't

know if it is from this or if I am getting arthritis in my knuckles.

I am 45 years old but I am not to young to have arthritis in my

knuckles. I also have an aching pain in the palm of my hand too that

I do not believe it is arthritis because it is in the muscle. Do you?

Remember I have CBGD and not MSA. I think CBGD affects your muscles

more than MSA. I also have the other problems you mentioned. Do you

have the autonomic problems? I don't. I have high blood pressure. If

you don't have MSA ask your doctor about CBGD and see what he thinks

about that. Of course, I am not saying it is but that I would ask

your doctor about it.

God bless,

Belinda

> 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

> >

> >

> > If you do not wish to belong to shydrager, you may

> > unsubscribe by sending a blank email to

> >

> > shydrager-unsubscribe@y...

> >

> >

> >

> >

> >

[Guest guest]

Hi Everyone,

I have had the Klex worm and have not been able to post anything in the last

3 weeks. Now I have been cured and I want to say that I agree with

Deborah. " Well Written Blendia " . If it wasn't for this group I would have

never made it this far, being my Fathers caregiver. It's almost like this

group are the Doctors whom I look to for information and education (

especially Pam, Bill, Aletta, etc.really all of you.) What I learn for this

group is how I have stayed on top of things and also how I have informed my

Dad's doctors on how to treat him. One of my Dad's Doctors calls me quite

often to get answers to questions she has about MSA. One day she even told

me she felt like the patient and I was her Doctor. Quite a twist huh.So

everyone Please take a minute, take a deep breath and deal with it. Not

everyone here agrees with all that is posted and read, but the end result is

We are all a part of a support group that can't do without each others

advise and experience's (I know I can't)

so I will continue to set here everyday and learn from and share with all of

you what I can. Hope the rest of you will do the same.Some of us are more

outspoken than others in this group, but it takes all kinds of people to

make the world go round

and each of us must do our part to keep spinngs with life each day.

See Ya

Darlene

P.S. Deborah, yours is one of many interesting stories that I have printed

off and taken to my Father's doctor. Good Luck To You

hi and concerned for this group

> Date: Mon, 17 Jun 2002 12:09:21 -0000

> 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

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

> shydrager-unsubscribe

>

[Guest guest]

Thanks Darlene,

To tell you the truth, I would rather be healthy and forgettable than

known this way. Glad to see you have de-wormed yourself. LOL!

I agree, this list helps both and myself teach the doc's what they

need to know to treat me. Rare diseases are hard on our physicians. They

have to learn so much about so many things and are expected to know exactly

what to do with everyone that comes to them. Human like ourselves, they

can't perfect everything. Thank God that so many of us have found

physicians that are willing to be educated in the treatment of rare

disorders. Maybe this is the legacy we will leave behind, a doctor that can

help the next person down the line even better than us. There is something

positive in everything.

Anyway, hands are tired. Trying to catch up on 3 days worth of email. I

keep forgetting where I was so I hope I haven't answered this one before.

If I did, I hope at least I had new things to offer this go around.

Hugs,

Deborah aka Tenacity

Hi Everyone,

I have had the Klex worm and have not been able to post anything in the last

3 weeks. Now I have been cured and I want to say that I agree with

Deborah. " Well Written Blendia " . If it wasn't for this group I would have

never made it this far, being my Fathers caregiver. It's almost like this

group are the Doctors whom I look to for information and education (

especially Pam, Bill, Aletta, etc.really all of you.) What I learn for this

group is how I have stayed on top of things and also how I have informed my

Dad's doctors on how to treat him. One of my Dad's Doctors calls me quite

often to get answers to questions she has about MSA. One day she even told

me she felt like the patient and I was her Doctor. Quite a twist huh.So

everyone Please take a minute, take a deep breath and deal with it. Not

everyone here agrees with all that is posted and read, but the end result is

We are all a part of a support group that can't do without each others

advise and experience's (I know I can't)

so I will continue to set here everyday and learn from and share with all of

you what I can. Hope the rest of you will do the same.Some of us are more

outspoken than others in this group, but it takes all kinds of people to

make the world go round

and each of us must do our part to keep spinngs with life each day.

See Ya

Darlene

P.S. Deborah, yours is one of many interesting stories that I have printed

off and taken to my Father's doctor. Good Luck To You

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