Re: Bill and Aletta

June 16, 2002

Bill,

You were out of line and rude. And though you may need a hug because

of some repressed anger, you also need a good punch in the nose.

Every person on this board should be treated as important. I do not

think you meant that you did not care about Aletta. Rather, I take it

you meant that she can share how she feels, but you object to her

discussion of certain medications. But why did she take that part of

your e-mail wrong? Well, think about her situation, what she is going

through, and how you set the letter up. There were hurtful things in

that letter and past posts, and for that you should sincerely

apologize.

I will repeat something I said in an earlier post: 'The

last thing anyone on this board needs is more doubt in regards to the

severity of what they are going through. Rather, what most people

come to this board for is support.'

Aletta is very ill. Multiple systems in her body are affected, and

she needs support regardless of what YOU think is going on.

Be careful with your 'typical' talk. It can be a very isolating term

to a number of people on the board including myself and many who have

contacted me off the board--people who, not coincidently, do not

appreciate your tone. You may want to ask yourself why you are having

to work out differences with so many people on the board.

Just because you are a great resource and benefit to the board does

not excuse you from rude and disrespectful occassions. I know of

others who do not post as often because of your tone and delivery at

times. It would be nice to see you take notice of this fact and be an

even greater help to the board. You might consider not being so

controlling and authoritative. Therefore, we might see some other

voices on the board.

You could have said that you thought the medication Aletta was

discussing was dangerous to MSA patients and LEFT IT AT THAT.

And the broken record routine, though necessary at certain times

because of newbies etc, can be condescending. Please be more careful

who you pull it with and when you pull it. Do not put so much

responsibility on your shoulders; it is a sure fire way to become

controlling and offensive. I guarantee you will not be of any less

help; indeed, you will help more people.

The other day I pointed out that you gave some poor advise. (Are you

being hypocritical?) Look how dangerous your advise would have been.

You did not give any credence to beta-blockers being used for

tachycardia. Despite what you may think, not all tachycardia is

caused by infection. There is a host autonomic difficulties you just

could not know about as well as a whole group of voices on this

board. I just hate that these voices do not feel more comfortable

sharing on the board.

I digress for now. Additionally, I want to say you are great

resource. Thank you for that. Just share the waves, dude!

Zachery

TO ALETTA:

I am so sorry you had to be exposed to such stressors.

Sincerely,

Zac

> >

> > > Ok I'm sending the both of you to your rooms with no supper!

> > >

> > > I know there is common ground here somewhere.

> > >

> > > Bill I hope you didn't mean to imply Aletta was a " drug

pusher " . Now

> > that's

> > > not nice!

> > >

> > > Aletta, your experience of your illness is your own and not for

any one of

> > > us to judge or belittle. I admire your courage and tenacity.

You are

> > > welcome to stay and contribute to the list. I have no desire

to kick you

> > > off or moderate your posts.

> > >

> > > Aletta, I know it's not your intention to confuse people by

what you write.

> > > Do you agree that those of us who post regularly (i.e. almost

daily) have a

> > > certain responsibility to uphold in that our messages are read

by the most

> > > people and what we say can often be taken as gospel? I try to

be mindful

> > > whenever I post that there are constantly new people joining

who have just

> > > been diagnosed who want to know the facts about MSA. I often

will chime in

> > > and clarify things other's write if I think they may be

misunderstood

> > by new

> > > people. (On average we get about 5 new people joining per

week). Even

> > > though MSA does not affect any two people in the exact same way

there is

> > > definitely a typical array of symptoms. Many of the things you

> > describe are

> > > not typical and therefore potentially confusing especially to

those newly

> > > diagnosed with MSA, I believe therein lies Bill's concern.

> > >

> > > No of course it's not your fault you don't fit the typical

> > pattern. And yes

> > > you definitely have the right to discuss and describe YOUR

experience of

> > > YOUR illness in a way that makes you feel better emotionally.

Maybe Bill

> > > needs you to acknowledge in your notes that you know you don't

fit the

> > > typical pattern of MSA and new folks should understand that

many of the

> > > things you describe as your physical symptoms may not apply to

them. I

> > > certainly agree though that the emotional symptoms of illness

can apply to

> > > anyone and your notes often offer others great comfort and

emotional

> > > support. I would hate to see you go and lose that part of your

> > contribution

> > > to our list.

> > >

> > > Love to both of you.

> > > Pam

>

> Thanks Pam.

> This is not the first time I have taken a licking by Bill, but it

is the

> first off list, that bothers me most. If you have to say it say it

plainly

> and witnessed by all who are directly or indirectly involved.

> I am unwilling at this point to sacrifice my emotional well being,

by

> staying around after this round of bashing (which is how it

feels). Right

> now I feel as though I am devalued for not being 'typical' of MSA,

a

> foreigner, alcoholic and 'pushing' narcotics and other drugs which

are

> dangerous to the group. I also know I can't be other than who I

am. I

> don't have the capacity to type out complex disclaimers every time

I

> mention something that 'someone' might take out of turn. I know

there are

> others who might want me around, and I urge them that they may use

my

> email: aletta@l... anytime at all and I'd be happy to correspond,

as

> long as they remember what a dangerous woman I am.

> I'm pretty wiped right now and probably geting a bit

> repetitive. Coathanger pain (it's probably in my head) is killing

me.

> > >

> > > --

>

> aletta mes

> vancouver, bc Canada

> web: http://aletta.0catch.com

June 16, 2002

Zac,

Sorry you think I am rude. Maybe it IS time for me to leave the list. I

will work with the DC group and anyone is free to ask me off list about

problems they are having. I tried to take this discussion off the list and

she (and now you) brought it back on the list.

In truth any MSA patient who has an infection can (and usually does) have

tachycardia. My reference to beta-blockers was from MY experience and it is

used for coronary artery disease (I have had a triple bypass). In truth ANY

person with tachycardia should not be using uppers and downers. MSA, POTS

and PAF patients using uppers and downers can not distinguish between side

effects and their normal disorder symptoms. I personally feel that if I am

wrong about MSA patients using these drugs, no one is hurt. However, if I am

right and someone dies from using them, was I right to be rude?

Some facts:

Fact: opiates and uppers cause MSA like symptoms - AM I wrong?

Fact: the use of AMPHETAMINES by patients with tachycardia can cause death -

AM I wrong?

Fact: None of my wife's movement disorder specialists or geriactric doctors

ever wanted her to have uppers or downers, because they felt it was dangerous

for her to use them because of the MSA - were they wrong?

Fact: under information for patients for this group of drugs it states:

" Amphetamines should not be used to combat unusual tiredness or weakness or

replace rest. When used for these purposes, they may be dangerous to your

health. "

PLEASE ask your doctor (preferably a movement disorder specialist and not a

psychiatrist) before taking these drugs if you have ANY movement disorder.

Take care, Bill Werre

June 17, 2002

Bill--

Please do not even THINK of getting off the list. You are an

extraordinarily valuable resource, and you have contriubted a lot to

clarify thinking and promote helpful dialogue. You're realy needed.

Not only that, you're a good counselor who has put a helluva lot of

dedication into research and advice that benefits us all.

There's more than enough room for all of us with our varying

perspectives to inform and support each other, understanding that we

all suffer as patients or caregivers from this awful disease, and we

shouldn't feel defensive about any point of clarification, whether we

accept it or not. I hope we can all feel free to share our

experiences, offer clarification, question each others' statements

and information as needed, and take it as a given that everybody has

a major stake in being supportive and supported.

Personally, Bill, if you check out of the list I will become very

surly and irritable, and we don't need that.

Tony

in Boston

-- In shydrager@y..., Werre wrote:

> Zac,

>

> Sorry you think I am rude. Maybe it IS time for me to leave the

list. I

> will work with the DC group and anyone is free to ask me off list

about

> problems they are having. I tried to take this discussion off the

list and

> she (and now you) brought it back on the list.

>

> In truth any MSA patient who has an infection can (and usually

does) have

> tachycardia. My reference to beta-blockers was from MY experience

and it is

> used for coronary artery disease (I have had a triple bypass). In

truth ANY

> person with tachycardia should not be using uppers and downers.

MSA, POTS

> and PAF patients using uppers and downers can not distinguish

between side

> effects and their normal disorder symptoms. I personally feel that

if I am

> wrong about MSA patients using these drugs, no one is hurt.

However, if I am

> right and someone dies from using them, was I right to be rude?

>

> Some facts:

>

> Fact: opiates and uppers cause MSA like symptoms - AM I wrong?

> Fact: the use of AMPHETAMINES by patients with tachycardia can

cause death -

> AM I wrong?

> Fact: None of my wife's movement disorder specialists or geriactric

doctors

> ever wanted her to have uppers or downers, because they felt it was

dangerous

> for her to use them because of the MSA - were they wrong?

> Fact: under information for patients for this group of drugs it

states:

> " Amphetamines should not be used to combat unusual tiredness or

weakness or

> replace rest. When used for these purposes, they may be dangerous

to your

> health. "

>

> PLEASE ask your doctor (preferably a movement disorder specialist

and not a

> psychiatrist) before taking these drugs if you have ANY movement

disorder.

>

> Take care, Bill Werre

June 17, 2002

I wish to offer several comments on this subject:

1. This list is an absolutely effective and unique resource made possible

by the good will, experience - both personal and professional, and the warm

dedication of people who participate in many different ways on the list. I

have only been on for close to two years and it has made life for Terry and

myself a lot easier. I hope my small contributions to the list have been

helpful to others on the list.

2. All contributors should be free to participate to whatever extent they

wish. Hopefully, all contributions are responsible and mature. All

responsible contributors are welcome. The usefulness of their contributions

to this warm and appreciative community is only known to the individual

members. Clearly, a lot of us find the list to be very beneficial.

3. Bill has been a major contributor to this resource with his many

valuable, responsible, and caring contributions. I recall a few occasions

where he has seen fit to revise his comments to be more accurate as the

need has become clear. In particular, I find his comments to be well based,

subjected to his own critical thinking, and always made conditionally;

i.e.. subordinated to those of the involved doctors. [For example, see

Bill's email to Zac below.] This increases their value for me.

4. Different perspectives by different contributors to the list have

generally been handled in a mature and professional manner. Some times this

has been on list and sometimes off the list. Off list is far more

appropriate in certain protracted situations. In this instance, the off

list effort was thwarted and needlessly broadened the issue to involve others.

5. Bill is clearly among a group of a few dozen whose contributions are

individually more substantive, both emotionally and objectively, than those

contributions made by the rest of us. I believe that if he should decide to

leave us, it would be a significant loss to me and Terry and also to the list.

My bottom line: Bill is one of many who have helped make this list what it

is and I feel he belongs here now and in the future.

PS I completely support Pam's comments quoted below:

" 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. "

Message: 3

Date: Mon, 17 Jun 2002 00:06:33 -0400

Subject: Re: Re: Bill and Aletta