Re: Off List with Bill and Aletta

[Guest guest]

I'm responding to this off list comment, and

that will be it for me. Thiis 'disagreement 'is bad for my

health. Anything further is moot as I'm no longer taking an active

part in this group'

I will read the posts for a few more days and then decide whether I

should unsubscribe. I will cheerfully correspond with anyone about

anything they like - just be careful, because apparently I am dangerous

with my opinions ands experiences - you have been duly warned. I am

nevertheless grateful for Don Summers inviting me to this group.

Without any avaiable support groups here and so little known about

Shy-Drager even by doctors, every scrap of information has helped me

enormously as has just knowing there were others out there suffering the

humiliation of bowel and urinary incontence, passing out and getting

fired from work for appearing drunk and incompetent. Thanks for

letting me know some of the trick sof coping with swallowing and speech

difficulties, and thanks for inspiring me to use it or lose it.

Overall my life has improved thanks to this group.

It was very difficult to write this and write a response to yesterday's

'off-list' email. Stress has a negative effect on all my symptoms,

and I cannot afford it. This group means much to Bill, and I

understand he has invested much energy into it. You are his

friends. I am who I am, and this is unacceptable to Bill.

That is ok, for me I was not here as a popularity contest. I need

for people to respect who I am without putting conditions on it. I

respect you all, unconditionally.

Cheers! (which, Bill is a greeting, not an indication of alcoholism)

At Saturday 6/15/02 09:51 AM, you wrote:

Pam and Aletta,

We took our disagreement off list last night.

Actually, no Bill, you took it off list and blind

sided me. The comments in that email were accusatory and offensive.

I have no secret opinions from the group.

No, I did not

mean Aletta is a

drug pusher (as in illegal drugs) - anymore than I am when I push Sinemet

as a

trial help for rigidity, but I do point out that Sinemet in NOT for all

MSA

patients (probably less than half).

Yes I do feel strongly that some people may misinterpret her words -

especially

when she goes into how good it makes her feel. In particular - most

MSA

patients wake up tired and stiff from the rigidity of MSA. When

Aletta talks

about the ability to get up after her " wakeup " pill and feel

good, I am afraid

some will decide to try it out for themselves.

He interprets what I wrote, it is not what I wrote.

If I called it a 'wakeup pill' I most likely found it easier to spell or

at that moment could not remember the name exactly. I write/wrote

as a friend//sufferer not a clinician/

Here in the

USA, you can find

someone who will sell you uppers if you have enough money and do not need

a

doctor.

Whereas foreigners are without means and are safe

from the illegal drug trade? Are Americans more gullible than us

foreigners???

Many MSA

patients (even smart ones we know) have tried ANYTHING to help

them, including a $20,000 trip to South America for a miracle cure.

They are

desperate for something to help them as they are losing

movement.

As I have told you, Aletta, you are NOT typical MSA.

I was not aware there was a standard to live up to

in this group, and that it was set by you. I shall pass on to my

doctor that he was wrong, because you said so.

Anne was told

for 23 years

that she has SDS, yet we all know now that she has PAF instead and that

has

given her extra years of life. She worries at this time that she

may have

mislead people on the list. Most MSA patients can NOT move (or at

least walk)

by 5 years at most. Within seven years they can not type and by ten

years they

can not use a mouse.

Well, I regret that my decline is insufficient to

meet your criteria. I do hope it will not be quickly fatal, and

prove to be something else (who wouldn't).

These people

CAN be killed by the side effects of either your wakeup OR your

sleeping pills. In addition, you have mentioned drinking wine -

with those

drugs, any alcohol is a problem.

I'm a Catholic and European, Bill, it is

permissable to drink at occasions in my religion, and it is my business

if I choose to do so, as an adult it is mine to live my life as I choose

as long as I am living lawfully. I don't like it being slanted that I

drink irresponsibly because you choose to do that. I don't, haven't

and it is none of your business.

If you

know all of this and accept the risk,

that is your business. There is another person on the list who has

had MSA

symptoms for over 12 years and takes morphine daily (three times a day)

for over

15 years. They say they don't have side effects either, but get out

of breath

after going up 10 stairs. Morphine causes that symptom as well as

the few MSA

symptoms they have. If you look at drug sites, you will see that

shortness of

breath is a major sign of morphine addiction, along with stumbling,

eyesight

problems, confusion and bowel problems. This type of person does

NOT need to

hear how good it makes someone feel.

I regret I spoke from the heart, I mistook this for

a support group, I will take my brief moments of joy elsewhere, where it

will not offend.

Yes I have a

great concern for MSA patients

except for Aletta who has not met the standards for

concern

and that is the

reason I stay on the

list. I do not care who comes on the list and talks/writes about

anything they

wish, as long as they write in a responsible manner. There ARE

people on the

list who will take everything they read as gospel - look at the number of

dumb

hoaxes we get every year.

Sorry, but I've seen no evidence of these people so

easily led. I read of patients who have doctors, ask their

questions to gather what they need to make and informed decision.

They are supplied with URLs and if personal experience is asked for,

several are usually posted in short order. The fact they are on

this support group indicates they search for answers, it took me some

time to discover the group and monitored for some time before taking part

actively. All my posts are spontaneous and from the heart with no

malice or intent to mislead. I use humour (which I suppose can be

misunderstood) because it is easier to get through tough times with it

than without. I am often brief, because I tire, and it takes energy

to try and put the words on the computer. I used to spellcheck, but

no longer do, it can take and hour to write an email, and that is longer

than I can be comfortable sitting up. To be concise every time, and

weigh every word is simply no longer possible, so I write as I would

converse with a friend, conversationally, adult to adult. I find

your patronizing and condescending tone to me unacceptable.

As I told you

Aletta, freedom to write what you want

is the same as freedom of speech - and yelling " Fire " in a

crowded theater is

not responsible to me.

This comparison greatly offends me.

Freedom

requires responsibility.

I don't care about Aletta saying how she feels or what her problems are.

This hurts greatly, I thought people on this list

generally cared about each other. You bashed me on my son when he

was in hospital also, I should have noticed then how little you cared for

my feelings. I thought you were still reeling from Charlotte's

death so I let it go.

I DO

care about mentioning using prescription drugs which are KNOWN to cause

MSA

symptoms just to wake up or go to sleep, because of pain - which is NOT

usually

a problem with MSA until late stages. And even in late stages of

MSA dystonia

causes the MSA pain which is better controlled with anti-spasm or

muscle

relaxers - in at least 97% of MSA patients. If you are going to

tell people you

use an upper to wake up, you MUST also tell them that if they are prone

to

tachycardia, the medicine can kill them. About 10% of our list has

tachycardia

problems and all MSA patients have that problem when they have infection

(which

is when they have the most pain also).

I will soon be gone the rest of the weekend so you will not have to worry

about

me until late Sunday night. Yes the big bad wolf or nasty old man

is taking a

short vacation. I know of several medical people who also feel it

is

irreponsible for a doctor who has no experience with autonomic failure

to

prescribe this type of medicine just to get to sleep and wake up.

If I am

wrong, I will pay for my sins when I meet my maker, no one is hurt.

If you are

wrong, people can die. Yes, that bothers me as many of these people

are my

friends

unlike me, who is just someone to bash when you

feel like it, and the friends on the list were kept out of this round

because you did not feel you could bash me out there with quite as

favourable and outcome. apparently you consider yourself the

guardian elder charged with the responsibility of making certain no one

needs to think for themselves.

and I have seen

too many of my friends die over the last 3 and a half

years. I feel self censorship is best for everyone. If I see

something that I

feel may hurt people on the list, I feel free to say so. When we

fight like

this, everyone on the list gets hurt as they decide I am a nasty old man

picking

on you and others feel you are a nutcase and pay no attention to either

of us.

I have been able to work out differences over the years with many list

members

including Anne Pledger and Barb Selleck as well as several others, I do

not want

anyone hurt.

Well, bully for you Bill. I don't have a

caregiver to help me laboriously contruct emails, and I certainly lack

the strength to do much in the way of editing each and every word

weighing what people might think or do. I withdraw from the group

and this argument not because I concede, but because I am too sick and to

tired for this.

Take

care, Bill

---------------------------------------------------

Pam Bower wrote:

> 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@... 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

[Guest guest]

Aletta Have written you twice but both have come back.Can`t figure out why .Have sent you my off list e mail hope we can still keep talking

Love Marg Manson

Aletta Mes wrote: I'm responding to this off list comment, and that will be it for me. Thiis 'disagreement 'is bad for my health. Anything further is moot as I'm no longer taking an active part in this group'I will read the posts for a few more days and then decide whether I should unsubscribe. I will cheerfully correspond with anyone about anything they like - just be careful, because apparently I am dangerous with my opinions ands experiences - you have been duly warned. I am nevertheless grateful for Don Summers inviting me to this group. Without any avaiable support groups here and so little known about Shy-Drager even by doctors, every scrap of information has helped me enormously as has just knowing there were others out there suffering the humiliation of bowel and urinary incontence, passing out and getting fired from work for appearing drunk and incompetent. Thanks for letting me know some of the trick sof coping with swallowing and speech difficulties, and thanks for inspiring me to use it or lose it. Overall my life has improved thanks to this group.It was very difficult to write this and write a response to yesterday's 'off-list' email. Stress has a negative effect on all my symptoms, and I cannot afford it. This group means much to Bill, and I understand he has invested much energy into it. You are his friends. I am who I am, and this is unacceptable to Bill. That is ok, for me I was not here as a popularity contest. I need for people to respect who I am without putting conditions on it. I respect you all, unconditionally.Cheers! (which, Bill is a greeting, not an indication of alcoholism)At Saturday 6/15/02 09:51 AM, you wrote:

Pam and Aletta,We took our disagreement off list last night. Actually, no Bill, you took it off list and blind sided me. The comments in that email were accusatory and offensive. I have no secret opinions from the group.

No, I did not mean Aletta is adrug pusher (as in illegal drugs) - anymore than I am when I push Sinemet as atrial help for rigidity, but I do point out that Sinemet in NOT for all MSApatients (probably less than half).Yes I do feel strongly that some people may misinterpret her words - especiallywhen she goes into how good it makes her feel. In particular - most MSApatients wake up tired and stiff from the rigidity of MSA. When Aletta talksabout the ability to get up after her "wakeup" pill and feel good, I am afraidsome will decide to try it out for themselves. He interprets what I wrote, it is not what I wrote. If I called it a 'wakeup pill' I most likely found it easier to spell or at that moment could not remember the name exactly. I write/wrote as a friend//sufferer not a clinician/

Here in the USA, you can findsomeone who will sell you uppers if you have enough money and do not need adoctor. Whereas foreigners are without means and are safe from the illegal drug trade? Are Americans more gullible than us foreigners???

Many MSA patients (even smart ones we know) have tried ANYTHING to helpthem, including a $20,000 trip to South America for a miracle cure. They aredesperate for something to help them as they are losing movement.As I have told you, Aletta, you are NOT typical MSA. I was not aware there was a standard to live up to in this group, and that it was set by you. I shall pass on to my doctor that he was wrong, because you said so.

Anne was told for 23 yearsthat she has SDS, yet we all know now that she has PAF instead and that hasgiven her extra years of life. She worries at this time that she may havemislead people on the list. Most MSA patients can NOT move (or at least walk)by 5 years at most. Within seven years they can not type and by ten years theycan not use a mouse.Well, I regret that my decline is insufficient to meet your criteria. I do hope it will not be quickly fatal, and prove to be something else (who wouldn't).

These people CAN be killed by the side effects of either your wakeup OR yoursleeping pills. In addition, you have mentioned drinking wine - with thosedrugs, any alcohol is a problem. I'm a Catholic and European, Bill, it is permissable to drink at occasions in my religion, and it is my business if I choose to do so, as an adult it is mine to live my life as I choose as long as I am living lawfully. I don't like it being slanted that I drink irresponsibly because you choose to do that. I don't, haven't and it is none of your business.

If you know all of this and accept the risk,that is your business. There is another person on the list who has had MSAsymptoms for over 12 years and takes morphine daily (three times a day) for over15 years. They say they don't have side effects either, but get out of breathafter going up 10 stairs. Morphine causes that symptom as well as the few MSAsymptoms they have. If you look at drug sites, you will see that shortness ofbreath is a major sign of morphine addiction, along with stumbling, eyesightproblems, confusion and bowel problems. This type of person does NOT need tohear how good it makes someone feel.I regret I spoke from the heart, I mistook this for a support group, I will take my brief moments of joy elsewhere, where it will not offend.

Yes I have a great concern for MSA patients except for Aletta who has not met the standards for concern

and that is the reason I stay on thelist. I do not care who comes on the list and talks/writes about anything theywish, as long as they write in a responsible manner. There ARE people on thelist who will take everything they read as gospel - look at the number of dumbhoaxes we get every year. Sorry, but I've seen no evidence of these people so easily led. I read of patients who have doctors, ask their questions to gather what they need to make and informed decision. They are supplied with URLs and if personal experience is asked for, several are usually posted in short order. The fact they are on this support group indicates they search for answers, it took me some time to discover the group and monitored for some time before taking part actively. All my posts are spontaneous and from the heart with no malice or intent to mislead. I use humour (which I suppose can be misunderstood) because it is easier to get through tough times with it than without. I am often brief, because I tire, and it takes energy to try and put the words on the computer. I used to spellcheck, but no longer do, it can take and hour to write an email, and that is longer than I can be comfortable sitting up. To be concise every time, and weigh every word is simply no longer possible, so I write as I would converse with a friend, conversationally, adult to adult. I find your patronizing and condescending tone to me unacceptable.

As I told you Aletta, freedom to write what you wantis the same as freedom of speech - and yelling "Fire" in a crowded theater isnot responsible to me. This comparison greatly offends me.

Freedom requires responsibility.I don't care about Aletta saying how she feels or what her problems are. This hurts greatly, I thought people on this list generally cared about each other. You bashed me on my son when he was in hospital also, I should have noticed then how little you cared for my feelings. I thought you were still reeling from Charlotte's death so I let it go.

I DOcare about mentioning using prescription drugs which are KNOWN to cause MSAsymptoms just to wake up or go to sleep, because of pain - which is NOT usuallya problem with MSA until late stages. And even in late stages of MSA dystoniacauses the MSA pain which is better controlled with anti-spasm or musclerelaxers - in at least 97% of MSA patients. If you are going to tell people youuse an upper to wake up, you MUST also tell them that if they are prone totachycardia, the medicine can kill them. About 10% of our list has tachycardiaproblems and all MSA patients have that problem when they have infection (whichis when they have the most pain also).I will soon be gone the rest of the weekend so you will not have to worry aboutme until late Sunday night. Yes the big bad wolf or nasty old man is taking ashort vacation. I know of several medical people who also feel it isirreponsible for a doctor who has no experience with autonomic failure toprescribe this type of medicine just to get to sleep and wake up. If I amwrong, I will pay for my sins when I meet my maker, no one is hurt. If you arewrong, people can die. Yes, that bothers me as many of these people are myfriends unlike me, who is just someone to bash when you feel like it, and the friends on the list were kept out of this round because you did not feel you could bash me out there with quite as favourable and outcome. apparently you consider yourself the guardian elder charged with the responsibility of making certain no one needs to think for themselves.

and I have seen too many of my friends die over the last 3 and a halfyears. I feel self censorship is best for everyone. If I see something that Ifeel may hurt people on the list, I feel free to say so. When we fight likethis, everyone on the list gets hurt as they decide I am a nasty old man pickingon you and others feel you are a nutcase and pay no attention to either of us.I have been able to work out differences over the years with many list membersincluding Anne Pledger and Barb Selleck as well as several others, I do not wantanyone hurt.Well, bully for you Bill. I don't have a caregiver to help me laboriously contruct emails, and I certainly lack the strength to do much in the way of editing each and every word weighing what people might think or do. I withdraw from the group and this argument not because I concede, but because I am too sick and to tired for this.

Take care, Bill---------------------------------------------------Pam Bower wrote:> 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.> PamThanks 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@... 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 mesvancouver, bc Canadaweb: http://aletta.0catch.comIf you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe