the long goodbye, don't bother to read if offended by personal views and opinions, blank unsubscription to follow

[Guest guest]

I have lurked in the background for about a week. to see if hanging

in just for information etc. would still have a positive impact on how I

cope with my neuro-degenrative disease (I've made it generic, so no one

needs to be offended, by anything'atypical'). Regretably (I speak

only for myself) I've not found it to be useful to be a silent member. If

anything I find it often painful not to be able to pose questions, since

many of them draw only criticism and not useful information.

Although it is all very nice to witness that there are options for

treatment of symptoms, it is often ignored that not all who suffer have

access to them, due to geography, poverty or other factors of

access. Something as simple as an effective laxative which is not

sold everywhere, or support hose hard to get hold of. The advice of

this test and that test cannot be applied to people (equally deserving)

when again these are not available.

Not all of us have caregivers, social workers, specialists to rely

on. To be criticised for coping alternatively is at best hostile

and certainly disrespectful. To be held to an arbitrary expectation

of when we shall lose this or that ability, and worse the expectation of

life ending in seven or so years as a certainty, when indeed others have

surpassed it, is downright cruel. Holding on to even the slender

possibility of making it beyond that expectation as Harriet and Anne have

done has done me the most good while being here swapping stories. I

took from it that if Anne can still stand, I have no excuse not to do the

same. So far, that is working nicely for me.

Certainly when a cure comes to light, some will have access to it and

others not. That is reality. Much of research also ends in

abject failure, the loss of money spent is passed on to the next study -

while we know with certainty that lab rats can be given cancer by

researchers, cures elude. Personally (that means it is my opinion,

please don't be a Lemming) I'd like to see more research done on the

healing properties of the human spirit. Since I can afford the

human spirit, I will keep on painting, dancing (if only in my mind),

writing, gardening, loving, singing, decorating, rejoicing and

grieving. I will philosophise, and worship as the spirit moves me

and find beauty in all there is (even if it takes a microscope or an

exceptionally strong stomach). I will laugh, fall and

rebound. The rest I leave to my physicians and my own ability to

make choices based on information given and sought.

Sharing is a large part of the human spirit, I have made friends here and

hope for a long time to share with them for as long as they choose.

It was a huge relief to be able to discuss having your bowels let go in a

public place and find there were others who had survived the same (one

example, there are as you already know many more). It was valuable

to see the caregiver side, helping me make up my mind not to pursue a

certain (this one is private) relationship, because I could not face

putting anyone or myself through it. It allowed me to weight how

much to share with family and friends and what to keep to myself, because

I could contruct what would happen if... in a much more informed

way.

I am very dissapointed in being expected to hold back my experiences and

feelings, because thought they are true, it is felt my experience is more

likely to cause harm to others. Since my variation of

neurodegeneration does not conform to standard held understanding it

invalidates anything I might have to say. Plainly I joined because

it was " shydrager' group, which is what I was told I have, but found

much confusion and little clarity regarding what illness was actaually

being discussed. I was not told I had Parkinsons (that has still

not manifested), and I was told it was not PAF. Some of my symptoms

took hold after I had a 'likely stroke' imaging was done almost a

year later and it could not be verified. I lost my sense of taste,

ability to speak (therapy helped here, which I did with the help of my

sister, an RN in neuro, because therapists were not available to me) and

all basic bio-rhythms (sleep, hunger etc.) and gained a relentlessly high

heartbeat. This 'episode' however was caused by autonomic

failure. I struggled alone unable to put a name to what I had,

Shy-Drager had been mentioned as long ago as four years, but there are no

tests to verify conclusively, until autopsy (no rush). When asked,

I tell people I have a neurodegenerative illness which primarily attacks

the autonomic functions (a bit hard to get out at times)

On veneration of Engineers. No problem, my grandmother was an

engineer (design of diesel engines, Holland-Amerca line), my uncle

followed in her footsteps. She died before I was born, her name

also was Aletta. Her husband (grandpa or Opa) was an artist and

musician who liked doing faux paintings in grand homes, he died of

Parkinsons at age 52, months after Oma died of stomach cancer. The

private nurse the family hired was my mother. Enough personal stuff

- I think all people are worthy or respect and everyone has a wisom or

two up their sleeves, regardless of social standing, gender, race,

cultural background, faith or lack of it, sick or healthy - to actually

think anything else (this is a personal view, I'm not a sheep, so sue me)

is repugnant and offensive. Equally offensive are the people who

let them get away with it.

Certain of the neurodegenerative diseases impact the thought processes

(lewey bodies, Alzheimers some Parkinsons) to varying degrees. Mine

(whatever it is) like many here does not. I am everybit the person

I was, I feel as I did, I ruminate as I did, I continue to learn and grow

intellectually, the same with many of the others. The body however

is out of phase, I have four year old hands, three year old toilet

problems, five year old speech (at times), I grapple and wobble like a

child still new with the walking thing (I do better crawling at times) -

but I am not a child - so I resent being patronized, parented and

condescended to. I long ago achieved the legal right to sign

contract, make decisions and even vote. I have the mental agility

to take in information, and based on information and the complexities of

my own body/mental understanding make decisions regarding my

well-being. So do other patients on this list. The ability to

do this is not influenced by the gender, culture, ethnicity, eduation,

econoimic status and faith of the individual. To me (again,

personal belief) it should never be inferred otherwise. When I lose

the ability to communicate because my speech and writing are gone, I will

feel no differently. I only hope that those around me will have the

sensitivity to understand the need to be treated with respect and

dignity, even if you are the subject of an enema, or need diapers

changed.

All this has awakened me to the very great need for me to put into place

a legal document so foolproof and airtight that any misintepretation of

my actual wishes is rendered impossible.

The hostility of my knowledge and understanding trumps your knowledge and

understanding, is a childhood bully game I've grown out of. Even

so, on a day I feel defeated by symptoms and loneliness, it is hurtful

and damaging to the spirit, to then have someone take you to the mat

'off-line' more hurtful still. When no-one made it stop I knew that

others must have felt as hurt as I when similarly thier treatments and

diagnosis was held up to question. So on my behalf (not anyone

elses) I protest this unkind treatment of myself and anyone else

subjected to it. Not very sporting to make accusation without

having it witnessed (that concept is familiar to people of various

faiths). I feel (note my feelings, I don't bring others into it and

speak for no one else) that inferring what I said would kill people, I

was pushing people into 'illegal' drug use, and I was wholly unqualified

to make any staatements on this illness because I don't meet the

criteria, all without directly quoting anything I had actually written,

and then to boot be told I should no longer mention 'painkillers' and

just to let it go - whew - was offensive and judgemental. To anyone

who did not on their own figure it out, this was not the first time

accusations and insulting remarks were made to me, it simply is the last

straw.

I had asked Pam to recommend another support group who might accpt me

despite my 'atypical' symptomology, but no answer was given. If

some does know of one I'd be deeply indebted if you could share that with

me (alettames@...). To anyone, if you need to blow of steam or

just be heard and are afraid to, I will listen, you can do it

anonymously, but for goodness sake do not hold it in, I have for the past

week and it is devastating. Those who would just like to criticise

and be insulting, keep it to yourselves.

Now, to my great grief, goodbye, I wish you all (even the ones of if you

who hurt me) well.

aletta mes

vancouver, bc

Canada

web:

http://aletta.0catch.com

imagine the worst it

could be and delight that it is not yet so

[Guest guest]

Oh Come on, Aletta. Stay on line with us all. We have to take

the good and throw away the bad, and we are all capable of doing

that. No one agrees 100 per cent with everyone else--and wouldn't

that be a dull world. We all have problems and personalities that

react differently to ideas. Stay on if you feel you are deriving

benefit. Lou R.At 04:45 PM 6/20/2002 -0700, you wrote:

I have lurked in the background for

about a week. to see if hanging in just for information etc. would

still have a positive impact on how I cope with my neuro-degenrative

disease (I've made it generic, so no one needs to be offended, by

anything'atypical'). Regretably (I speak only for myself) I've not

found it to be useful to be a silent member. If anything I find it often

painful not to be able to pose questions, since many of them draw only

criticism and not useful information. Although it is all very nice

to witness that there are options for treatment of symptoms, it is often

ignored that not all who suffer have access to them, due to geography,

poverty or other factors of access. Something as simple as an

effective laxative which is not sold everywhere, or support hose hard to

get hold of. The advice of this test and that test cannot be

applied to people (equally deserving) when again these are not

available.

Not all of us have caregivers, social workers, specialists to rely

on. To be criticised for coping alternatively is at best hostile

and certainly disrespectful. To be held to an arbitrary expectation

of when we shall lose this or that ability, and worse the expectation of

life ending in seven or so years as a certainty, when indeed others have

surpassed it, is downright cruel. Holding on to even the slender

possibility of making it beyond that expectation as Harriet and Anne have

done has done me the most good while being here swapping stories. I

took from it that if Anne can still stand, I have no excuse not to do the

same. So far, that is working nicely for me.

Certainly when a cure comes to light, some will have access to it and

others not. That is reality. Much of research also ends in

abject failure, the loss of money spent is passed on to the next study -

while we know with certainty that lab rats can be given cancer by

researchers, cures elude. Personally (that means it is my opinion,

please don't be a Lemming) I'd like to see more research done on the

healing properties of the human spirit. Since I can afford the

human spirit, I will keep on painting, dancing (if only in my mind),

writing, gardening, loving, singing, decorating, rejoicing and

grieving. I will philosophise, and worship as the spirit moves me

and find beauty in all there is (even if it takes a microscope or an

exceptionally strong stomach). I will laugh, fall and

rebound. The rest I leave to my physicians and my own ability to

make choices based on information given and sought.

Sharing is a large part of the human spirit, I have made friends here and

hope for a long time to share with them for as long as they choose.

It was a huge relief to be able to discuss having your bowels let go in a

public place and find there were others who had survived the same (one

example, there are as you already know many more). It was valuable

to see the caregiver side, helping me make up my mind not to pursue a

certain (this one is private) relationship, because I could not face

putting anyone or myself through it. It allowed me to weight how

much to share with family and friends and what to keep to myself, because

I could contruct what would happen if... in a much more informed

way.

I am very dissapointed in being expected to hold back my experiences and

feelings, because thought they are true, it is felt my experience is more

likely to cause harm to others. Since my variation of

neurodegeneration does not conform to standard held understanding it

invalidates anything I might have to say. Plainly I joined because

it was " shydrager' group, which is what I was told I have, but found

much confusion and little clarity regarding what illness was actaually

being discussed. I was not told I had Parkinsons (that has still

not manifested), and I was told it was not PAF. Some of my symptoms

took hold after I had a 'likely stroke' imaging was done almost a

year later and it could not be verified. I lost my sense of taste,

ability to speak (therapy helped here, which I did with the help of my

sister, an RN in neuro, because therapists were not available to me) and

all basic bio-rhythms (sleep, hunger etc.) and gained a relentlessly high

heartbeat. This 'episode' however was caused by autonomic

failure. I struggled alone unable to put a name to what I had,

Shy-Drager had been mentioned as long ago as four years, but there are no

tests to verify conclusively, until autopsy (no rush). When asked,

I tell people I have a neurodegenerative illness which primarily attacks

the autonomic functions (a bit hard to get out at times)

On veneration of Engineers. No problem, my grandmother was an

engineer (design of diesel engines, Holland-Amerca line), my uncle

followed in her footsteps. She died before I was born, her name

also was Aletta. Her husband (grandpa or Opa) was an artist and

musician who liked doing faux paintings in grand homes, he died of

Parkinsons at age 52, months after Oma died of stomach cancer. The

private nurse the family hired was my mother. Enough personal stuff

- I think all people are worthy or respect and everyone has a wisom or

two up their sleeves, regardless of social standing, gender, race,

cultural background, faith or lack of it, sick or healthy - to actually

think anything else (this is a personal view, I'm not a sheep, so sue me)

is repugnant and offensive. Equally offensive are the people who

let them get away with it.

Certain of the neurodegenerative diseases impact the thought processes

(lewey bodies, Alzheimers some Parkinsons) to varying degrees. Mine

(whatever it is) like many here does not. I am everybit the person

I was, I feel as I did, I ruminate as I did, I continue to learn and grow

intellectually, the same with many of the others. The body however

is out of phase, I have four year old hands, three year old toilet

problems, five year old speech (at times), I grapple and wobble like a

child still new with the walking thing (I do better crawling at times) -

but I am not a child - so I resent being patronized, parented and

condescended to. I long ago achieved the legal right to sign

contract, make decisions and even vote. I have the mental agility

to take in information, and based on information and the complexities of

my own body/mental understanding make decisions regarding my

well-being. So do other patients on this list. The ability to

do this is not influenced by the gender, culture, ethnicity, eduation,

econoimic status and faith of the individual. To me (again,

personal belief) it should never be inferred otherwise. When I lose

the ability to communicate because my speech and writing are gone, I will

feel no differently. I only hope that those around me will have the

sensitivity to understand the need to be treated with respect and

dignity, even if you are the subject of an enema, or need diapers

changed.

All this has awakened me to the very great need for me to put into place

a legal document so foolproof and airtight that any misintepretation of

my actual wishes is rendered impossible.

The hostility of my knowledge and understanding trumps your knowledge and

understanding, is a childhood bully game I've grown out of. Even

so, on a day I feel defeated by symptoms and loneliness, it is hurtful

and damaging to the spirit, to then have someone take you to the mat

'off-line' more hurtful still. When no-one made it stop I knew that

others must have felt as hurt as I when similarly thier treatments and

diagnosis was held up to question. So on my behalf (not anyone

elses) I protest this unkind treatment of myself and anyone else

subjected to it. Not very sporting to make accusation without

having it witnessed (that concept is familiar to people of various

faiths). I feel (note my feelings, I don't bring others into it and

speak for no one else) that inferring what I said would kill people, I

was pushing people into 'illegal' drug use, and I was wholly unqualified

to make any staatements on this illness because I don't meet the

criteria, all without directly quoting anything I had actually written,

and then to boot be told I should no longer mention 'painkillers' and

just to let it go - whew - was offensive and judgemental. To anyone

who did not on their own figure it out, this was not the first time

accusations and insulting remarks were made to me, it simply is the last

straw.

I had asked Pam to recommend another support group who might accpt me

despite my 'atypical' symptomology, but no answer was given. If

some does know of one I'd be deeply indebted if you could share that with

me (alettames@...). To anyone, if you need to blow of steam or

just be heard and are afraid to, I will listen, you can do it

anonymously, but for goodness sake do not hold it in, I have for the past

week and it is devastating. Those who would just like to criticise

and be insulting, keep it to yourselves.

Now, to my great grief, goodbye, I wish you all (even the ones of if you

who hurt me) well.

aletta mes

vancouver, bc Canada

web:

http://aletta.0catch.com

imagine the worst it could be and

delight that it is not yet so

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

unsubscribe by sending a blank email to

shydrager-unsubscribe

[Guest guest]

Aletta,

I hate to see you leave this support group. I feel that you are a

loving and caring person. I do not think that you would ever hurt

anyone intentionally. If you feel you can't stay, I understand.

Please, feel free to email me at anytime.

God bless with lots of love and gentle hugs,

Belinda

> I have lurked in the background for about a week. to see if

hanging in

> just for information etc. would still have a positive impact on how

I cope

> with my neuro-degenrative disease (I've made it generic, so no one

needs to

> be offended, by anything'atypical'). Regretably (I speak only for

myself)

> I've not found it to be useful to be a silent member. If anything I

find it

> often painful not to be able to pose questions, since many of them

draw

> only criticism and not useful information. Although it is all very

nice to

> witness that there are options for treatment of symptoms, it is

often

> ignored that not all who suffer have access to them, due to

geography,

> poverty or other factors of access. Something as simple as an

effective

> laxative which is not sold everywhere, or support hose hard to get

hold

> of. The advice of this test and that test cannot be applied to

people

> (equally deserving) when again these are not available.

>

> Not all of us have caregivers, social workers, specialists to rely

on. To

> be criticised for coping alternatively is at best hostile and

certainly

> disrespectful. To be held to an arbitrary expectation of when we

shall

> lose this or that ability, and worse the expectation of life ending

in

> seven or so years as a certainty, when indeed others have surpassed

it, is

> downright cruel. Holding on to even the slender possibility of

making it

> beyond that expectation as Harriet and Anne have done has done me

the most

> good while being here swapping stories. I took from it that if

Anne can

> still stand, I have no excuse not to do the same. So far, that is

working

> nicely for me.

>

> Certainly when a cure comes to light, some will have access to it

and

> others not. That is reality. Much of research also ends in abject

> failure, the loss of money spent is passed on to the next study -

while we

> know with certainty that lab rats can be given cancer by

researchers, cures

> elude. Personally (that means it is my opinion, please don't be a

Lemming)

> I'd like to see more research done on the healing properties of the

human

> spirit. Since I can afford the human spirit, I will keep on

painting,

> dancing (if only in my mind), writing, gardening, loving, singing,

> decorating, rejoicing and grieving. I will philosophise, and

worship as

> the spirit moves me and find beauty in all there is (even if it

takes a

> microscope or an exceptionally strong stomach). I will laugh, fall

and

> rebound. The rest I leave to my physicians and my own ability to

make

> choices based on information given and sought.

>

> Sharing is a large part of the human spirit, I have made friends

here and

> hope for a long time to share with them for as long as they

choose. It was

> a huge relief to be able to discuss having your bowels let go in a

public

> place and find there were others who had survived the same (one

example,

> there are as you already know many more). It was valuable to see

the

> caregiver side, helping me make up my mind not to pursue a certain

(this

> one is private) relationship, because I could not face putting

anyone or

> myself through it. It allowed me to weight how much to share with

family

> and friends and what to keep to myself, because I could contruct

what would

> happen if... in a much more informed way.

>

> I am very dissapointed in being expected to hold back my

experiences and

> feelings, because thought they are true, it is felt my experience

is more

> likely to cause harm to others. Since my variation of

neurodegeneration

> does not conform to standard held understanding it invalidates

anything I

> might have to say. Plainly I joined because it was " shydrager'

group,

> which is what I was told I have, but found much confusion and

little

> clarity regarding what illness was actaually being discussed. I

was not

> told I had Parkinsons (that has still not manifested), and I was

told it

> was not PAF. Some of my symptoms took hold after I had a 'likely

> stroke' imaging was done almost a year later and it could not be

> verified. I lost my sense of taste, ability to speak (therapy

helped here,

> which I did with the help of my sister, an RN in neuro, because

therapists

> were not available to me) and all basic bio-rhythms (sleep, hunger

etc.)

> and gained a relentlessly high heartbeat. This 'episode' however

was

> caused by autonomic failure. I struggled alone unable to put a

name to

> what I had, Shy-Drager had been mentioned as long ago as four

years, but

> there are no tests to verify conclusively, until autopsy (no

rush). When

> asked, I tell people I have a neurodegenerative illness which

primarily

> attacks the autonomic functions (a bit hard to get out at times)

>

> On veneration of Engineers. No problem, my grandmother was an

engineer

> (design of diesel engines, Holland-Amerca line), my uncle followed

in her

> footsteps. She died before I was born, her name also was Aletta.

Her

> husband (grandpa or Opa) was an artist and musician who liked doing

faux

> paintings in grand homes, he died of Parkinsons at age 52, months

after Oma

> died of stomach cancer. The private nurse the family hired was my

> mother. Enough personal stuff - I think all people are worthy or

respect

> and everyone has a wisom or two up their sleeves, regardless of

social

> standing, gender, race, cultural background, faith or lack of it,

sick or

> healthy - to actually think anything else (this is a personal view,

I'm not

> a sheep, so sue me) is repugnant and offensive. Equally offensive

are the

> people who let them get away with it.

>

> Certain of the neurodegenerative diseases impact the thought

processes

> (lewey bodies, Alzheimers some Parkinsons) to varying degrees.

Mine

> (whatever it is) like many here does not. I am everybit the person

I was,

> I feel as I did, I ruminate as I did, I continue to learn and grow

> intellectually, the same with many of the others. The body however

is out

> of phase, I have four year old hands, three year old toilet

problems, five

> year old speech (at times), I grapple and wobble like a child still

new

> with the walking thing (I do better crawling at times) - but I am

not a

> child - so I resent being patronized, parented and condescended

to. I long

> ago achieved the legal right to sign contract, make decisions and

even

> vote. I have the mental agility to take in information, and based

on

> information and the complexities of my own body/mental

understanding make

> decisions regarding my well-being. So do other patients on this

list. The

> ability to do this is not influenced by the gender, culture,

ethnicity,

> eduation, econoimic status and faith of the individual. To me

(again,

> personal belief) it should never be inferred otherwise. When I

lose the

> ability to communicate because my speech and writing are gone, I

will feel

> no differently. I only hope that those around me will have the

sensitivity

> to understand the need to be treated with respect and dignity, even

if you

> are the subject of an enema, or need diapers changed.

>

> All this has awakened me to the very great need for me to put into

place a

> legal document so foolproof and airtight that any misintepretation

of my

> actual wishes is rendered impossible.

>

> The hostility of my knowledge and understanding trumps your

knowledge and

> understanding, is a childhood bully game I've grown out of. Even

so, on a

> day I feel defeated by symptoms and loneliness, it is hurtful and

damaging

> to the spirit, to then have someone take you to the mat 'off-line'

more

> hurtful still. When no-one made it stop I knew that others must

have felt

> as hurt as I when similarly thier treatments and diagnosis was held

up to

> question. So on my behalf (not anyone elses) I protest this unkind

> treatment of myself and anyone else subjected to it. Not very

sporting to

> make accusation without having it witnessed (that concept is

familiar to

> people of various faiths). I feel (note my feelings, I don't bring

others

> into it and speak for no one else) that inferring what I said would

kill

> people, I was pushing people into 'illegal' drug use, and I was

wholly

> unqualified to make any staatements on this illness because I don't

meet

> the criteria, all without directly quoting anything I had actually

written,

> and then to boot be told I should no longer mention 'painkillers'

and just

> to let it go - whew - was offensive and judgemental. To anyone who

did not

> on their own figure it out, this was not the first time accusations

and

> insulting remarks were made to me, it simply is the last straw.

>

> I had asked Pam to recommend another support group who might accpt

me

> despite my 'atypical' symptomology, but no answer was given. If

some does

> know of one I'd be deeply indebted if you could share that with me

> (alettames@l...). To anyone, if you need to blow of steam or just

be

> heard and are afraid to, I will listen, you can do it anonymously,

but for

> goodness sake do not hold it in, I have for the past week and it is

> devastating. Those who would just like to criticise and be

insulting, keep

> it to yourselves.

>

> Now, to my great grief, goodbye, I wish you all (even the ones of

if you

> who hurt me) well.

>

> aletta mes

> vancouver, bc Canada

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

>

> imagine the worst it could be and delight that it is not yet so