Re: Where are we all from?

[Guest guest]

Hi Pam,

You always do such a good job keeping up with us.

My dad, who is 81, has shy-drager. My mom is his caregiver and I am the

run-around-around-and-take-care-of-everything-else person. Believe me my job

is nothing compared to my moms.

My parents live about 3 minutes away from us in Tempe, Arizona near Phoenix,

home of the World Champion Arizona Diamondbacks. Whoops that just slipped

right out. tacky. sorry.

I would be happy to be a contact person in this area if needed, anytime.

Jean (phx)

[Guest guest]

Hi Pam,

You always do such a good job keeping up with us.

My dad, who is 81, has shy-drager. My mom is his caregiver and I am the

run-around-around-and-take-care-of-everything-else person. Believe me my job

is nothing compared to my moms.

My parents live about 3 minutes away from us in Tempe, Arizona near Phoenix,

home of the World Champion Arizona Diamondbacks. Whoops that just slipped

right out. tacky. sorry.

I would be happy to be a contact person in this area if needed, anytime.

Jean (phx)

[Guest guest]

Hi Pam:

> City/Town: Chapel Hill

> State/Province: NC

> Country: USA

I just discovered this group tonight (and SDS/MSA in the last few

days - I think my mom, diagnosed with Parkinson's 8 years ago, has

it). I would love to get in touch with others in the

Raleigh/Durham/Chapel Hill area. Thanks for your help.

p

> Please write and let me know where you are from:

>

> City/Town:

> State/Province:

> Country:

>

> If you live in a small town or suburb tell me what large city you

are close

> to.

>

> I keep a database and that allows people to connect with each

other. I just

> noticed today that there are 4 families from Omaha, Nebraska.

Hopefully

> that is enough for them to start having meetings.

>

> Many people think they are the only one from their area who is

tackling

> Shy-Drager/MSA but many have found people close to them through

this forum.

> Even if you can't get out to attend meetings you can still keep in

touch

> with others in your area by phone or email. If you'd like to be

a contact

> person for your area please let me know that too and I'll try to

make sure

> you know about new people who join from your area.

>

> Take care,

> Pam

[Guest guest]

I live in a suburb called Airport West in Melbourne, ,

Australia. It is approx 20 kilometres or 15 miles northwest of

Melbourne's CBD.

I am not sure what my situation is. As I have mentioned previously I

don't know what I have and over the last 5 years have been getting

steadily worse. MSA seems to have quite a number of symptoms which fit

in with what I believe is happening. I go back to the Neuro in the

morning and as Bill Werre suggested I will ask about seeing a movement

disorders specialist.

In the meantime I hope no-one minds me staying in the group as I feel

like an orphan or a stray at the moment. Whilst my family try to

understand my problems, it is hard when they cannot see something

obvious. Anyway, I'll let you know whether I find out anything

meaningful tomorrow.

One last thing, reading about the number of sufferers and carers who

do their best to continue to live life to the fullest and the way the

group support each other, is a great tonic when I am feeling like a

misery guts.

Regards Sowter

> Please write and let me know where you are from:

>

> City/Town:

> State/Province:

> Country:

>

> If you live in a small town or suburb tell me what large city you

are close

> to.

>

> I keep a database and that allows people to connect with each other.

I just

> noticed today that there are 4 families from Omaha, Nebraska.

Hopefully

> that is enough for them to start having meetings.

>

> Many people think they are the only one from their area who is

tackling

> Shy-Drager/MSA but many have found people close to them through this

forum.

> Even if you can't get out to attend meetings you can still keep in

touch

> with others in your area by phone or email. If you'd like to be a

contact

> person for your area please let me know that too and I'll try to

make sure

> you know about new people who join from your area.

>

> Take care,

> Pam

[Guest guest]

Tricia Jensen

Glendale, California

pajensen@...

Where are we all from?

>

>

> > Please write and let me know where you are from:

> > A. Jensen

( " Tricia " )

> > City/Town: Glendale

> > State/Province: California

> > Country:

> >

> > If you live in a small town or suburb tell me what large city you are

> close

> > to.

> >

> > I keep a database and that allows people to connect with each other. I

> just

> > noticed today that there are 4 families from Omaha, Nebraska. Hopefully

> > that is enough for them to start having meetings.

> >

> > Many people think they are the only one from their area who is tackling

> > Shy-Drager/MSA but many have found people close to them through this

> forum.

> > Even if you can't get out to attend meetings you can still keep in touch

> > with others in your area by phone or email. If you'd like to be a

> contact

> > person for your area please let me know that too and I'll try to make

sure

> > you know about new people who join from your area.

> >

> > Take care,

> > Pam

> >

> >

> >

> >

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

> > unsubscribe by sending a blank email to

> >

> > shydrager-unsubscribe

> >

> >

> >

> >

> >

[Guest guest]

Tricia Jensen

Glendale, California

pajensen@...

Where are we all from?

>

>

> > Please write and let me know where you are from:

> > A. Jensen

( " Tricia " )

> > City/Town: Glendale

> > State/Province: California

> > Country:

> >

> > If you live in a small town or suburb tell me what large city you are

> close

> > to.

> >

> > I keep a database and that allows people to connect with each other. I

> just

> > noticed today that there are 4 families from Omaha, Nebraska. Hopefully

> > that is enough for them to start having meetings.

> >

> > Many people think they are the only one from their area who is tackling

> > Shy-Drager/MSA but many have found people close to them through this

> forum.

> > Even if you can't get out to attend meetings you can still keep in touch

> > with others in your area by phone or email. If you'd like to be a

> contact

> > person for your area please let me know that too and I'll try to make

sure

> > you know about new people who join from your area.

> >

> > Take care,

> > Pam

> >

> >

> >

> >

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

> > unsubscribe by sending a blank email to

> >

> > shydrager-unsubscribe

> >

> >

> >

> >

> >

[Guest guest]

Tricia Jensen

Glendale, California

pajensen@...

Where are we all from?

>

>

> > Please write and let me know where you are from:

> > A. Jensen

( " Tricia " )

> > City/Town: Glendale

> > State/Province: California

> > Country:

> >

> > If you live in a small town or suburb tell me what large city you are

> close

> > to.

> >

> > I keep a database and that allows people to connect with each other. I

> just

> > noticed today that there are 4 families from Omaha, Nebraska. Hopefully

> > that is enough for them to start having meetings.

> >

> > Many people think they are the only one from their area who is tackling

> > Shy-Drager/MSA but many have found people close to them through this

> forum.

> > Even if you can't get out to attend meetings you can still keep in touch

> > with others in your area by phone or email. If you'd like to be a

> contact

> > person for your area please let me know that too and I'll try to make

sure

> > you know about new people who join from your area.

> >

> > Take care,

> > Pam

> >

> >

> >

> >

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

> > unsubscribe by sending a blank email to

> >

> > shydrager-unsubscribe

> >

> >

> >

> >

> >

[Guest guest]

Greetings !

You noted:

> I am not sure what my situation is. ... In the

> meantime I hope no-one minds me staying in the

> group as I feel like an orphan or a stray at

> the moment.

Well, join the club! All that I know for certain is that I am suffering

from cerebellar degeneration. Since it is Sporadic OPCA, this *MAY* be MSA.

Remember, not all Sporadic OPCA cases develop into MSA. About 25% may. But

that also means most do not.

But as you note, I seem to have some other odd symptoms, that are not

consistent. Some of those include diarrhea and constipation; insufficient

sweating this past summer (but now much better), inconsistent urine

retention, dizziness and gray outs when standing (but clears after a bit),

and so forth. You get the idea.

My doctor suspects that I might have Shy-Drager (read MSA), but as others

have noted, often the symptoms must progress before doctors can eliminate

other potential issues.

So, yes. You are definitely welcome here. Just realize that your

experiences may differ. If they do, it may yield other information to

review with your doctors.

Regards,

=jbf=

B. Fisher

[Guest guest]

Greetings !

You noted:

> I am not sure what my situation is. ... In the

> meantime I hope no-one minds me staying in the

> group as I feel like an orphan or a stray at

> the moment.

Well, join the club! All that I know for certain is that I am suffering

from cerebellar degeneration. Since it is Sporadic OPCA, this *MAY* be MSA.

Remember, not all Sporadic OPCA cases develop into MSA. About 25% may. But

that also means most do not.

But as you note, I seem to have some other odd symptoms, that are not

consistent. Some of those include diarrhea and constipation; insufficient

sweating this past summer (but now much better), inconsistent urine

retention, dizziness and gray outs when standing (but clears after a bit),

and so forth. You get the idea.

My doctor suspects that I might have Shy-Drager (read MSA), but as others

have noted, often the symptoms must progress before doctors can eliminate

other potential issues.

So, yes. You are definitely welcome here. Just realize that your

experiences may differ. If they do, it may yield other information to

review with your doctors.

Regards,

=jbf=

B. Fisher

[Guest guest]

Greetings !

You noted:

> I am not sure what my situation is. ... In the

> meantime I hope no-one minds me staying in the

> group as I feel like an orphan or a stray at

> the moment.

Well, join the club! All that I know for certain is that I am suffering

from cerebellar degeneration. Since it is Sporadic OPCA, this *MAY* be MSA.

Remember, not all Sporadic OPCA cases develop into MSA. About 25% may. But

that also means most do not.

But as you note, I seem to have some other odd symptoms, that are not

consistent. Some of those include diarrhea and constipation; insufficient

sweating this past summer (but now much better), inconsistent urine

retention, dizziness and gray outs when standing (but clears after a bit),

and so forth. You get the idea.

My doctor suspects that I might have Shy-Drager (read MSA), but as others

have noted, often the symptoms must progress before doctors can eliminate

other potential issues.

So, yes. You are definitely welcome here. Just realize that your

experiences may differ. If they do, it may yield other information to

review with your doctors.

Regards,

=jbf=

B. Fisher

[Guest guest]

,

By all means, stay with us. We don't care what you have, I'll bet at least

35% here don't have a definite diagnoses and those who do, don't know if it

is correct. Many of these disorders are so much alike that we often have

people turn out to have something other than MSA. Or members of other lists

that turn out to have MSA.

HOWEVER mate, you got me with " misery guts " . I'm fairly up on strine, but

could not find this one anywhere.

Ave a g'day mate!

Bill

==========================

mjsowter@... wrote:

> I am not sure what my situation is. As I have mentioned previously I

> don't know what I have and over the last 5 years have been getting

> steadily worse. MSA seems to have quite a number of symptoms which fit

> in with what I believe is happening. I go back to the Neuro in the

> morning and as Bill Werre suggested I will ask about seeing a movement

> disorders specialist.

>

> In the meantime I hope no-one minds me staying in the group as I feel

> like an orphan or a stray at the moment. Whilst my family try to

> understand my problems, it is hard when they cannot see something

> obvious. Anyway, I'll let you know whether I find out anything

> meaningful tomorrow.

>

> One last thing, reading about the number of sufferers and carers who

> do their best to continue to live life to the fullest and the way the

> group support each other, is a great tonic when I am feeling like a

> misery guts.

>

[Guest guest]

,

By all means, stay with us. We don't care what you have, I'll bet at least

35% here don't have a definite diagnoses and those who do, don't know if it

is correct. Many of these disorders are so much alike that we often have

people turn out to have something other than MSA. Or members of other lists

that turn out to have MSA.

HOWEVER mate, you got me with " misery guts " . I'm fairly up on strine, but

could not find this one anywhere.

Ave a g'day mate!

Bill

==========================

mjsowter@... wrote:

> I am not sure what my situation is. As I have mentioned previously I

> don't know what I have and over the last 5 years have been getting

> steadily worse. MSA seems to have quite a number of symptoms which fit

> in with what I believe is happening. I go back to the Neuro in the

> morning and as Bill Werre suggested I will ask about seeing a movement

> disorders specialist.

>

> In the meantime I hope no-one minds me staying in the group as I feel

> like an orphan or a stray at the moment. Whilst my family try to

> understand my problems, it is hard when they cannot see something

> obvious. Anyway, I'll let you know whether I find out anything

> meaningful tomorrow.

>

> One last thing, reading about the number of sufferers and carers who

> do their best to continue to live life to the fullest and the way the

> group support each other, is a great tonic when I am feeling like a

> misery guts.

>

[Guest guest]

,

By all means, stay with us. We don't care what you have, I'll bet at least

35% here don't have a definite diagnoses and those who do, don't know if it

is correct. Many of these disorders are so much alike that we often have

people turn out to have something other than MSA. Or members of other lists

that turn out to have MSA.

HOWEVER mate, you got me with " misery guts " . I'm fairly up on strine, but

could not find this one anywhere.

Ave a g'day mate!

Bill

==========================

mjsowter@... wrote:

> I am not sure what my situation is. As I have mentioned previously I

> don't know what I have and over the last 5 years have been getting

> steadily worse. MSA seems to have quite a number of symptoms which fit

> in with what I believe is happening. I go back to the Neuro in the

> morning and as Bill Werre suggested I will ask about seeing a movement

> disorders specialist.

>

> In the meantime I hope no-one minds me staying in the group as I feel

> like an orphan or a stray at the moment. Whilst my family try to

> understand my problems, it is hard when they cannot see something

> obvious. Anyway, I'll let you know whether I find out anything

> meaningful tomorrow.

>

> One last thing, reading about the number of sufferers and carers who

> do their best to continue to live life to the fullest and the way the

> group support each other, is a great tonic when I am feeling like a

> misery guts.

>

[Guest guest]

hello do you know of anyone who has msa that lives in

jacksonville florida.i keep seening people come from

every where exspect jax.if you know of anyone please

let me know.it would be so good to get a support group

going here....thank you janice harrell m anyone may

contact me by phone...1-

--- " A. Jensen " pajensen@...> wrote:

>

> Tricia Jensen

> Glendale, California

> pajensen@...

> Where are we all from?

> >

> >

> > > Please write and let me know where you are from:

> > >

> A. Jensen

> ( " Tricia " )

> > > City/Town: Glendale

> > > State/Province: California

>

> > > Country:

> > >

> > > If you live in a small town or suburb tell me

> what large city you are

> > close

> > > to.

> > >

> > > I keep a database and that allows people to

> connect with each other. I

> > just

> > > noticed today that there are 4 families from

> Omaha, Nebraska. Hopefully

> > > that is enough for them to start having

> meetings.

> > >

> > > Many people think they are the only one from

> their area who is tackling

> > > Shy-Drager/MSA but many have found people close

> to them through this

> > forum.

> > > Even if you can't get out to attend meetings you

> can still keep in touch

> > > with others in your area by phone or email.

> If you'd like to be a

> > contact

> > > person for your area please let me know that too

> and I'll try to make

> sure

> > > you know about new people who join from your

> area.

> > >

> > > Take care,

> > > Pam

> > >

> > >

> > >

> > >

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

> may

> > > unsubscribe by sending a blank email to

> > >

> > > shydrager-unsubscribe

> > >

> > >

> > >

> > >

> > >

[Guest guest]

hello do you know of anyone who has msa that lives in

jacksonville florida.i keep seening people come from

every where exspect jax.if you know of anyone please

let me know.it would be so good to get a support group

going here....thank you janice harrell m anyone may

contact me by phone...1-

--- " A. Jensen " pajensen@...> wrote:

>

> Tricia Jensen

> Glendale, California

> pajensen@...

> Where are we all from?

> >

> >

> > > Please write and let me know where you are from:

> > >

> A. Jensen

> ( " Tricia " )

> > > City/Town: Glendale

> > > State/Province: California

>

> > > Country:

> > >

> > > If you live in a small town or suburb tell me

> what large city you are

> > close

> > > to.

> > >

> > > I keep a database and that allows people to

> connect with each other. I

> > just

> > > noticed today that there are 4 families from

> Omaha, Nebraska. Hopefully

> > > that is enough for them to start having

> meetings.

> > >

> > > Many people think they are the only one from

> their area who is tackling

> > > Shy-Drager/MSA but many have found people close

> to them through this

> > forum.

> > > Even if you can't get out to attend meetings you

> can still keep in touch

> > > with others in your area by phone or email.

> If you'd like to be a

> > contact

> > > person for your area please let me know that too

> and I'll try to make

> sure

> > > you know about new people who join from your

> area.

> > >

> > > Take care,

> > > Pam

> > >

> > >

> > >

> > >

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

> may

> > > unsubscribe by sending a blank email to

> > >

> > > shydrager-unsubscribe

> > >

> > >

> > >

> > >

> > >

[Guest guest]

hello do you know of anyone who has msa that lives in

jacksonville florida.i keep seening people come from

every where exspect jax.if you know of anyone please

let me know.it would be so good to get a support group

going here....thank you janice harrell m anyone may

contact me by phone...1-

--- " A. Jensen " pajensen@...> wrote:

>

> Tricia Jensen

> Glendale, California

> pajensen@...

> Where are we all from?

> >

> >

> > > Please write and let me know where you are from:

> > >

> A. Jensen

> ( " Tricia " )

> > > City/Town: Glendale

> > > State/Province: California

>

> > > Country:

> > >

> > > If you live in a small town or suburb tell me

> what large city you are

> > close

> > > to.

> > >

> > > I keep a database and that allows people to

> connect with each other. I

> > just

> > > noticed today that there are 4 families from

> Omaha, Nebraska. Hopefully

> > > that is enough for them to start having

> meetings.

> > >

> > > Many people think they are the only one from

> their area who is tackling

> > > Shy-Drager/MSA but many have found people close

> to them through this

> > forum.

> > > Even if you can't get out to attend meetings you

> can still keep in touch

> > > with others in your area by phone or email.

> If you'd like to be a

> > contact

> > > person for your area please let me know that too

> and I'll try to make

> sure

> > > you know about new people who join from your

> area.

> > >

> > > Take care,

> > > Pam

> > >

> > >

> > >

> > >

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

> may

> > > unsubscribe by sending a blank email to

> > >

> > > shydrager-unsubscribe

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Pam,

I am Latham from Nashville, TN. My mother, Penny, was

diagnosed in May 1999 with OPCA. We searched for seven years before we

finally found a proper diagnoses.

My husband and I were caregivers for Mother in our home for three years.

We count ourselves blessed to have been able to care for " our " mother. I

had the privilege of holding Mother in my arms as she took her last

breath on this earth - August 19, 2001.

Mother wanted me to go to nursing school so that I could work with MSA

patients - apparently she felt I have a lot to offer. I am unsure what

my future holds, but I do hope to find a career where I can offer my

insight (what ever it may be) and compassion to those touched by this

disease.

________________________________________________________________

GET INTERNET ACCESS FROM JUNO!

Juno offers FREE or PREMIUM Internet access for less!

Join Juno today! For your FREE software, visit:

http://dl.www.juno.com/get/web/.

[Guest guest]

Pam,

I am Latham from Nashville, TN. My mother, Penny, was

diagnosed in May 1999 with OPCA. We searched for seven years before we

finally found a proper diagnoses.

My husband and I were caregivers for Mother in our home for three years.

We count ourselves blessed to have been able to care for " our " mother. I

had the privilege of holding Mother in my arms as she took her last

breath on this earth - August 19, 2001.

Mother wanted me to go to nursing school so that I could work with MSA

patients - apparently she felt I have a lot to offer. I am unsure what

my future holds, but I do hope to find a career where I can offer my

insight (what ever it may be) and compassion to those touched by this

disease.

________________________________________________________________

GET INTERNET ACCESS FROM JUNO!

Juno offers FREE or PREMIUM Internet access for less!

Join Juno today! For your FREE software, visit:

http://dl.www.juno.com/get/web/.

[Guest guest]

Bill,

Misery guts is just a local expression for feeling sorry for yourself,

it is not strine as such. For instance if you are moping around,

someone might say stop being a misery guts. Colloquially being a guts

is eating more than your fair share, so perhaps it means you are

exagerrating your woes.

Thanks for your reassurance (also to others who have taken the time to

send me a reply).

I went to the neuro this morning who is still not convinced there is a

neurological problem. However, due to persisting dizziness he is

sending me for various tests related to vertigo. So the search goes on

!

Take care.

Regards

>

> > I am not sure what my situation is. As I have mentioned previously

I

> > don't know what I have and over the last 5 years have been getting

> > steadily worse. MSA seems to have quite a number of symptoms which

fit

> > in with what I believe is happening. I go back to the Neuro in the

> > morning and as Bill Werre suggested I will ask about seeing a

movement

> > disorders specialist.

> >

> > In the meantime I hope no-one minds me staying in the group as I

feel

> > like an orphan or a stray at the moment. Whilst my family try to

> > understand my problems, it is hard when they cannot see something

> > obvious. Anyway, I'll let you know whether I find out anything

> > meaningful tomorrow.

> >

> > One last thing, reading about the number of sufferers and carers

who

> > do their best to continue to live life to the fullest and the way

the

> > group support each other, is a great tonic when I am feeling like

a

> > misery guts.

> >

[Guest guest]

Pam:

I live in Newport Beach, CA. It is about 40 miles south of Los Angeles

in Orange County.

Barbara

[Guest guest]

Pam:

I live in Newport Beach, CA. It is about 40 miles south of Los Angeles

in Orange County.

Barbara

[Guest guest]

Pam:

I live in Newport Beach, CA. It is about 40 miles south of Los Angeles

in Orange County.

Barbara

[Guest guest]

Hi Pam:

Carole Barber

N. Versailles, PA (about 20 miles east of Pittsburgh)

USA

Just a little background info for new members. I have been on the list

since 9/95 when my sister, , was dx. at Vanderbilt. She began

having incontinence problems around 1990. That was the first really

noticeable symptom. SDS progressed very rapidly in her. By early 96

she was in a w/c most of the time as her symptoms worsened. In 9/98, she

peacefully left us late at night while sleeping. She had decided she did

not want a trac/peg tube or to be kept alive by any other means. So, we

all respected her decision.

On Mon, 26 Nov 2001 11:56:19 -0400 " Pam Bower " pbower@...>

writes:

> Please write and let me know where you are from:

>

> City/Town:

> State/Province:

> Country:

>

> If you live in a small town or suburb tell me what large city you

> are close

> to.

>

> I keep a database and that allows people to connect with each other.

> I just

> noticed today that there are 4 families from Omaha, Nebraska.

> Hopefully

> that is enough for them to start having meetings.

>

> Many people think they are the only one from their area who is

> tackling

> Shy-Drager/MSA but many have found people close to them through this

> forum.

> Even if you can't get out to attend meetings you can still keep in

> touch

> with others in your area by phone or email. If you'd like to be a

> contact

> person for your area please let me know that too and I'll try to

> make sure

> you know about new people who join from your area.

>

> Take care,

> Pam

>

>

>

>

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

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>

[Guest guest]

Hi Pam:

Carole Barber

N. Versailles, PA (about 20 miles east of Pittsburgh)

USA

Just a little background info for new members. I have been on the list

since 9/95 when my sister, , was dx. at Vanderbilt. She began

having incontinence problems around 1990. That was the first really

noticeable symptom. SDS progressed very rapidly in her. By early 96

she was in a w/c most of the time as her symptoms worsened. In 9/98, she

peacefully left us late at night while sleeping. She had decided she did

not want a trac/peg tube or to be kept alive by any other means. So, we

all respected her decision.

On Mon, 26 Nov 2001 11:56:19 -0400 " Pam Bower " pbower@...>

writes:

> Please write and let me know where you are from:

>

> City/Town:

> State/Province:

> Country:

>

> If you live in a small town or suburb tell me what large city you

> are close

> to.

>

> I keep a database and that allows people to connect with each other.

> I just

> noticed today that there are 4 families from Omaha, Nebraska.

> Hopefully

> that is enough for them to start having meetings.

>

> Many people think they are the only one from their area who is

> tackling

> Shy-Drager/MSA but many have found people close to them through this

> forum.

> Even if you can't get out to attend meetings you can still keep in

> touch

> with others in your area by phone or email. If you'd like to be a

> contact

> person for your area please let me know that too and I'll try to

> make sure

> you know about new people who join from your area.

>

> Take care,

> Pam

>

>

>

>

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

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>

[Guest guest]

HELLO PAM THIS IS JANICE HARRELL,I HAVE BEEN TRYING TO

FIND SOMEONE IN MY AREA THAT HAS MSA.BUT I DON,T KNOW

IF I AM DOING SOMETHING WRONG OR WHAT BUT I TRY TO

CONTACT PEOPLE BUT I SEEM TO GET NO REPONSE,I DON,T

KNOW WHAT I AM DOING WRONG.WELL ANY WAY I LIVE IN

JACKSONVILLE FLORIDA,AND I WOULD LOVE TO BE A CONTACT

PERSON IN MY AREA.I LIVE AT 458 WEST 59 ST.

JAX.FLA.32208 MY NO. IS 1- PLEASE CONTACT

ME IF YOU KNOW OF ANYONE IN MY AREA....THANK YOU

JANICE HARRELL

--- CAROLE A BARBER BARBER.CAROLE@...> wrote:

> Hi Pam:

>

> Carole Barber

> N. Versailles, PA (about 20 miles east of

> Pittsburgh)

> USA

>

> Just a little background info for new members. I

> have been on the list

> since 9/95 when my sister, , was dx. at

> Vanderbilt. She began

> having incontinence problems around 1990. That was

> the first really

> noticeable symptom. SDS progressed very rapidly in

> her. By early 96

> she was in a w/c most of the time as her symptoms

> worsened. In 9/98, she

> peacefully left us late at night while sleeping.

> She had decided she did

> not want a trac/peg tube or to be kept alive by any

> other means. So, we

> all respected her decision.

>

>

>

>

> On Mon, 26 Nov 2001 11:56:19 -0400 " Pam Bower "

> pbower@...>

> writes:

> > Please write and let me know where you are from:

> >

> > City/Town:

> > State/Province:

> > Country:

> >

> > If you live in a small town or suburb tell me what

> large city you

> > are close

> > to.

> >

> > I keep a database and that allows people to

> connect with each other.

> > I just

> > noticed today that there are 4 families from

> Omaha, Nebraska.

> > Hopefully

> > that is enough for them to start having meetings.

> >

> > Many people think they are the only one from their

> area who is

> > tackling

> > Shy-Drager/MSA but many have found people close to

> them through this

> > forum.

> > Even if you can't get out to attend meetings you

> can still keep in

> > touch

> > with others in your area by phone or email. If

> you'd like to be a

> > contact

> > person for your area please let me know that too

> and I'll try to

> > make sure

> > you know about new people who join from your area.

> >

> > Take care,

> > Pam

> >

> >

> >

> >

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

>

> > unsubscribe by sending a blank email to

> >

> > shydrager-unsubscribe

> >

> >

> >

> >

> >