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Re: New to PLS-Friends

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Norma, welcome to our group. If you have being reading this group is full

of good helpful people who will try their darnest to help. No question is

silly so don't be afraid to ask. What state are you from ? We are spread

though out the country, someone may even be close by to meet. Tell us a

little

about yourself.. Again welcome...................Flora

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Hi Norma

I am glad that you found your way here.

Aussie Maureen

>

> Hi, my name is Norma. This is my first post, thanks to help from

> Maureen. I am going to Duke University Medical Center next week to Dr.

> Bedlack to the ALS Clinic for evaluation. Has anyone been there?

> Thanks, Norma

> PS. PLS-Friends has really been so helpful to me as I have just been

> diagnosed with motor neuron disease.

>

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And further! :-)

belgium46@... wrote:

> ................................................................. We

> are spread

> though out the country

--

Every day I beat my own previous record for number of consecutive days I've

stayed alive.

.

,-._|\ Covington

/ Oz \

\_,--.x/

v

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Hi Norma,

my name is sarah witt and i also go to duke. dr bedlack is my

doctor as well and he is terrific. i went through a bunch of bad

doctors and

makes me appreciate him even more. he's a great listener and is very

into making people as functional and safe as possible. there's also

a

great team there--speech therapist and social worker are especially

good.

the clinic has been great about helping me w/services (disability,

mobility devices etc) and putting me in touch w/other good people.

also, dr bedlack is always on email and usually gets back to you

within 24 hours and will answer any questions you have.

i hope this helps and if i can answer any more specific questions

just

let me know. where are you located? are you in raleigh or durham?

i'm

in raleigh.

sarah

>

> Hi, my name is Norma. This is my first post, thanks to help from

> Maureen. I am going to Duke University Medical Center next week

to

Dr.

> Bedlack to the ALS Clinic for evaluation. Has anyone been

there?

> Thanks, Norma

> PS. PLS-Friends has really been so helpful to me as I have just

been

> diagnosed with motor neuron disease.

>

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Norma,

I live in the triad but also go to Duke and see Dr. Bedlack. I have been happy

there but I am also new to this and next fall will be my first visit to the ALS

clinic. I am slow progressing thus far and hope it stays that way. I think you

will find the people at Duke treat you with a decent bedside manner unlike some

places.

Judith

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

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

New Yahoo! Messenger with Voice. Call regular phones from your PC and save big.

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Welcome Norma, Sure glad Maureen steered you our way. It's a cold

lonely world of unknowing without the comfort of this PLS family.

Eva

>

> Hi, my name is Norma. This is my first post, thanks to help from

> Maureen. I am going to Duke University Medical Center next week to

Dr.

> Bedlack to the ALS Clinic for evaluation. Has anyone been

there?

> Thanks, Norma

> PS. PLS-Friends has really been so helpful to me as I have just been

> diagnosed with motor neuron disease.

>

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Hi judith,

where do you live? i'm just north of raleigh.

sarah

>

> Norma,

> I live in the triad but also go to Duke and see Dr. Bedlack. I

have been happy there but I am also new to this and next fall will

be my first visit to the ALS clinic. I am slow progressing thus far

and hope it stays that way. I think you will find the people at Duke

treat you with a decent bedside manner unlike some places.

>

> Judith

>

>

>

> ---------------------------------

>

>

>

>

> ---------------------------------

> New Yahoo! Messenger with Voice. Call regular phones from your PC

and save big.

>

>

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Hi ,

I am in Archdale, south of High Point. While I am new I have been with the group

longer than you, I think. I was first diagnosed at Wake Forest in 2004, but

didn't like the bedside manner so for a second opinion I went to Duke and met

Dr. Bedlack. I believe you have progressed rapidly compared to me. It must be

scary. Do I remember that you are a researcher? I don't know whether that would

be good or bad for your psychological well being.

Judith

srwitt srwitt@...> wrote: Hi judith,

where do you live? i'm just north of raleigh.

sarah

>

> Norma,

> I live in the triad but also go to Duke and see Dr. Bedlack. I

have been happy there but I am also new to this and next fall will

be my first visit to the ALS clinic. I am slow progressing thus far

and hope it stays that way. I think you will find the people at Duke

treat you with a decent bedside manner unlike some places.

>

> Judith

>

>

>

> ---------------------------------

>

>

>

>

> ---------------------------------

> New Yahoo! Messenger with Voice. Call regular phones from your PC

and save big.

>

>

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Norma, I sent one email and it came back " delivery failure " and I sent it in

" reply " to your post. So I'll try again! I've had whatever I have since age 15

and have gone through quite a few diagnoses but now am labeled with a

neuromuscular disorder as every gene test done comes back " normal " . I live in

town, which is north of Freemont. I go to Duke to Dr. Bedlack in the

MDA clinic. I have an appointment April 11 as I am recuperating from emergency

splenectomy surgery March 4 and missed my appointment March 11, as I was in the

hospital. Will love hearing from you. in NC

nkblackman1007 nkblackman1007@...> wrote:

Hi, my name is Norma. This is my first post, thanks to help from

Maureen. I am going to Duke University Medical Center next week to Dr.

Bedlack to the ALS Clinic for evaluation. Has anyone been there?

Thanks, Norma

PS. PLS-Friends has really been so helpful to me as I have just been

diagnosed with motor neuron disease.

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Norma, I sent one email and it came back " delivery failure " and I sent it in

" reply " to your post. So I'll try again! I've had whatever I have since age 15

and have gone through quite a few diagnoses but now am labeled with a

neuromuscular disorder as every gene test done comes back " normal " . I live in

town, which is north of Freemont. I go to Duke to Dr. Bedlack in the

MDA clinic. I have an appointment April 11 as I am recuperating from emergency

splenectomy surgery March 4 and missed my appointment March 11, as I was in the

hospital. Will love hearing from you. in NC

nkblackman1007 nkblackman1007@...> wrote:

Hi, my name is Norma. This is my first post, thanks to help from

Maureen. I am going to Duke University Medical Center next week to Dr.

Bedlack to the ALS Clinic for evaluation. Has anyone been there?

Thanks, Norma

PS. PLS-Friends has really been so helpful to me as I have just been

diagnosed with motor neuron disease.

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Guest guest

Norma, I sent one email and it came back " delivery failure " and I sent it in

" reply " to your post. So I'll try again! I've had whatever I have since age 15

and have gone through quite a few diagnoses but now am labeled with a

neuromuscular disorder as every gene test done comes back " normal " . I live in

town, which is north of Freemont. I go to Duke to Dr. Bedlack in the

MDA clinic. I have an appointment April 11 as I am recuperating from emergency

splenectomy surgery March 4 and missed my appointment March 11, as I was in the

hospital. Will love hearing from you. in NC

nkblackman1007 nkblackman1007@...> wrote:

Hi, my name is Norma. This is my first post, thanks to help from

Maureen. I am going to Duke University Medical Center next week to Dr.

Bedlack to the ALS Clinic for evaluation. Has anyone been there?

Thanks, Norma

PS. PLS-Friends has really been so helpful to me as I have just been

diagnosed with motor neuron disease.

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hey judith,

you're not that far away!! my brother lives in greensboro and my

aunt in winston-salem and they come visit pretty regularly.

you're right; i just joined this group in january. i just started

w/dr bedlack and the clinic last august ('04) and i feel really

fortunate. because of my age (38), previous neurologists that i saw

kept thinking this was MS; when the tests didn't back that up they

jumped straight to " well, this must be a psychsomatic disorder. " so

you can understand why i'm so high on dr bedlack--he spent the first

appointment reassuring me i wasn't crazy or " creating " these

symptoms because i was stressed!

i have progressed rapidly, which is kind of scary, but i feel like

i'm in good hands medically, and i'm trying to do all i can to stay

as physically active as possible. however, i did get a loaner power

chair from the clinic about 10 days ago and i have to admit it's

been great. my daughter plays soccer so it was much easier to get to

her game and to chase her and my son around the yard;-) i love the

power!!

i'm not a medical researcher, which might be a good thing as you

say. i was a journalist--i worked for computer magazines like PC

Magazine and other trade stuff--but stopped working in november. bad

speech and lots of interviews didn't match up too well;-) but i do

miss it.

i'm excited about the NC Connection, even though it's a ways out, so

i can meet some other north carolinians like you.

have you been to the clinic yet, judith? or are you seeing dr.

bedlack privately? i don't recall what you said.

sarah

> >

> > Norma,

> > I live in the triad but also go to Duke and see Dr. Bedlack. I

> have been happy there but I am also new to this and next fall

will

> be my first visit to the ALS clinic. I am slow progressing thus

far

> and hope it stays that way. I think you will find the people at

Duke

> treat you with a decent bedside manner unlike some places.

> >

> > Judith

> >

> >

> >

> > ---------------------------------

> >

> >

> >

> >

> > ---------------------------------

> > New Yahoo! Messenger with Voice. Call regular phones from your

PC

> and save big.

> >

> >

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Guest guest

hey judith,

you're not that far away!! my brother lives in greensboro and my

aunt in winston-salem and they come visit pretty regularly.

you're right; i just joined this group in january. i just started

w/dr bedlack and the clinic last august ('04) and i feel really

fortunate. because of my age (38), previous neurologists that i saw

kept thinking this was MS; when the tests didn't back that up they

jumped straight to " well, this must be a psychsomatic disorder. " so

you can understand why i'm so high on dr bedlack--he spent the first

appointment reassuring me i wasn't crazy or " creating " these

symptoms because i was stressed!

i have progressed rapidly, which is kind of scary, but i feel like

i'm in good hands medically, and i'm trying to do all i can to stay

as physically active as possible. however, i did get a loaner power

chair from the clinic about 10 days ago and i have to admit it's

been great. my daughter plays soccer so it was much easier to get to

her game and to chase her and my son around the yard;-) i love the

power!!

i'm not a medical researcher, which might be a good thing as you

say. i was a journalist--i worked for computer magazines like PC

Magazine and other trade stuff--but stopped working in november. bad

speech and lots of interviews didn't match up too well;-) but i do

miss it.

i'm excited about the NC Connection, even though it's a ways out, so

i can meet some other north carolinians like you.

have you been to the clinic yet, judith? or are you seeing dr.

bedlack privately? i don't recall what you said.

sarah

> >

> > Norma,

> > I live in the triad but also go to Duke and see Dr. Bedlack. I

> have been happy there but I am also new to this and next fall

will

> be my first visit to the ALS clinic. I am slow progressing thus

far

> and hope it stays that way. I think you will find the people at

Duke

> treat you with a decent bedside manner unlike some places.

> >

> > Judith

> >

> >

> >

> > ---------------------------------

> >

> >

> >

> >

> > ---------------------------------

> > New Yahoo! Messenger with Voice. Call regular phones from your

PC

> and save big.

> >

> >

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Guest guest

hey judith,

you're not that far away!! my brother lives in greensboro and my

aunt in winston-salem and they come visit pretty regularly.

you're right; i just joined this group in january. i just started

w/dr bedlack and the clinic last august ('04) and i feel really

fortunate. because of my age (38), previous neurologists that i saw

kept thinking this was MS; when the tests didn't back that up they

jumped straight to " well, this must be a psychsomatic disorder. " so

you can understand why i'm so high on dr bedlack--he spent the first

appointment reassuring me i wasn't crazy or " creating " these

symptoms because i was stressed!

i have progressed rapidly, which is kind of scary, but i feel like

i'm in good hands medically, and i'm trying to do all i can to stay

as physically active as possible. however, i did get a loaner power

chair from the clinic about 10 days ago and i have to admit it's

been great. my daughter plays soccer so it was much easier to get to

her game and to chase her and my son around the yard;-) i love the

power!!

i'm not a medical researcher, which might be a good thing as you

say. i was a journalist--i worked for computer magazines like PC

Magazine and other trade stuff--but stopped working in november. bad

speech and lots of interviews didn't match up too well;-) but i do

miss it.

i'm excited about the NC Connection, even though it's a ways out, so

i can meet some other north carolinians like you.

have you been to the clinic yet, judith? or are you seeing dr.

bedlack privately? i don't recall what you said.

sarah

> >

> > Norma,

> > I live in the triad but also go to Duke and see Dr. Bedlack. I

> have been happy there but I am also new to this and next fall

will

> be my first visit to the ALS clinic. I am slow progressing thus

far

> and hope it stays that way. I think you will find the people at

Duke

> treat you with a decent bedside manner unlike some places.

> >

> > Judith

> >

> >

> >

> > ---------------------------------

> >

> >

> >

> >

> > ---------------------------------

> > New Yahoo! Messenger with Voice. Call regular phones from your

PC

> and save big.

> >

> >

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Guest guest

hey susan,

just saying hi to another north carolinian who goes to dr bedlack:-)

i'm sorry norma is having to join us but i'm kind of glad she did so

i know about you other folks.

i was just in clinic on march 14th and dr bedlack told me had a

large population of PLSers. guess he was telling the truth!

sarah

> Hi, my name is Norma. This is my first post, thanks to help from

> Maureen. I am going to Duke University Medical Center next week

to Dr.

> Bedlack to the ALS Clinic for evaluation. Has anyone been

there?

> Thanks, Norma

> PS. PLS-Friends has really been so helpful to me as I have just

been

> diagnosed with motor neuron disease.

>

>

>

>

>

>

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Guest guest

hey susan,

just saying hi to another north carolinian who goes to dr bedlack:-)

i'm sorry norma is having to join us but i'm kind of glad she did so

i know about you other folks.

i was just in clinic on march 14th and dr bedlack told me had a

large population of PLSers. guess he was telling the truth!

sarah

> Hi, my name is Norma. This is my first post, thanks to help from

> Maureen. I am going to Duke University Medical Center next week

to Dr.

> Bedlack to the ALS Clinic for evaluation. Has anyone been

there?

> Thanks, Norma

> PS. PLS-Friends has really been so helpful to me as I have just

been

> diagnosed with motor neuron disease.

>

>

>

>

>

>

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Guest guest

hey susan,

just saying hi to another north carolinian who goes to dr bedlack:-)

i'm sorry norma is having to join us but i'm kind of glad she did so

i know about you other folks.

i was just in clinic on march 14th and dr bedlack told me had a

large population of PLSers. guess he was telling the truth!

sarah

> Hi, my name is Norma. This is my first post, thanks to help from

> Maureen. I am going to Duke University Medical Center next week

to Dr.

> Bedlack to the ALS Clinic for evaluation. Has anyone been

there?

> Thanks, Norma

> PS. PLS-Friends has really been so helpful to me as I have just

been

> diagnosed with motor neuron disease.

>

>

>

>

>

>

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Guest guest

Hi Norma!! Welcome!! This IS a wonderful group. Keep with us Norma...I

find this group often gets me through my day!

Take good care! PS: (Maureen IS a sweetie isn't she?)

Di.............PLS........Canada

>

> Hi, my name is Norma. This is my first post, thanks to help from

> Maureen. I am going to Duke University Medical Center next week to

Dr.

> Bedlack to the ALS Clinic for evaluation. Has anyone been

there?

> Thanks, Norma

> PS. PLS-Friends has really been so helpful to me as I have just been

> diagnosed with motor neuron disease.

>

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Guest guest

Hi Norma!! Welcome!! This IS a wonderful group. Keep with us Norma...I

find this group often gets me through my day!

Take good care! PS: (Maureen IS a sweetie isn't she?)

Di.............PLS........Canada

>

> Hi, my name is Norma. This is my first post, thanks to help from

> Maureen. I am going to Duke University Medical Center next week to

Dr.

> Bedlack to the ALS Clinic for evaluation. Has anyone been

there?

> Thanks, Norma

> PS. PLS-Friends has really been so helpful to me as I have just been

> diagnosed with motor neuron disease.

>

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Guest guest

Hi Norma!! Welcome!! This IS a wonderful group. Keep with us Norma...I

find this group often gets me through my day!

Take good care! PS: (Maureen IS a sweetie isn't she?)

Di.............PLS........Canada

>

> Hi, my name is Norma. This is my first post, thanks to help from

> Maureen. I am going to Duke University Medical Center next week to

Dr.

> Bedlack to the ALS Clinic for evaluation. Has anyone been

there?

> Thanks, Norma

> PS. PLS-Friends has really been so helpful to me as I have just been

> diagnosed with motor neuron disease.

>

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Guest guest

Di, I plan and hope to be with this group for a long time. It seems

to me that you did a very good job of getting yourself and your

friends through a very difficult week. So glad that you can rest now.

-Norma

> >

> > Hi, my name is Norma. This is my first post, thanks to help from

> > Maureen. I am going to Duke University Medical Center next week

to

> Dr.

> > Bedlack to the ALS Clinic for evaluation. Has anyone been

> there?

> > Thanks, Norma

> > PS. PLS-Friends has really been so helpful to me as I have just

been

> > diagnosed with motor neuron disease.

> >

>

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