Re: North Carolinians

[Guest guest]

Maureen, That is so good to hear. I want to share that with my husband.

Being a physician he is so worried about me. Thanks for sharing. -Norma

[Guest guest]

hey norma,

that would be great! we should figure out a time when we can all get

together. i hope your appointment at duke goes well. what day do you

go?

sarah

>

> Well, I was so happy to see posts from three other NC folks,

,

> Judith and . Maybe we could get together sometime. Maybe in

> Raleigh. Do all of you drive? , you mentioned that you are

> progressing rapidly. My husband thinks that I am. I will be so

glad to

> find out what Dr. Bedlack thinks. In my reading I thought that

PLS was

> so rare but it seems from the PLS-Friends group that there are

right

> many. I hope I stay in this group.

> One of you mentioned the NC Connection. What is this? Is it

something

> I could do.

> I have told my family that after my visit to Duke and we begin to

tell

> our friends about my situation I want to get each one that asks

what

> they can do for me to sponsor me in a fundraiser for research. Any

> ideas?

> -Norma

>

[Guest guest]

, My appointment is for 2pm on Tuesday, April 4th

Connie asked for me to let ya'll hear my results, so I will try to

post as soon as I can.

-Norma

> >

> > Well, I was so happy to see posts from three other NC folks,

> ,

> > Judith and . Maybe we could get together sometime. Maybe in

> > Raleigh. Do all of you drive? , you mentioned that you are

> > progressing rapidly. My husband thinks that I am. I will be so

> glad to

> > find out what Dr. Bedlack thinks. In my reading I thought that

> PLS was

> > so rare but it seems from the PLS-Friends group that there are

> right

> > many. I hope I stay in this group.

> > One of you mentioned the NC Connection. What is this? Is it

> something

> > I could do.

> > I have told my family that after my visit to Duke and we begin to

> tell

> > our friends about my situation I want to get each one that asks

> what

> > they can do for me to sponsor me in a fundraiser for research.

Any

> > ideas?

> > -Norma

> >

>

[Guest guest]

Norma, After 3 years of having PLS or whatever, I progressed rapidly

for 2 years but for the last 6 years I have been stable. Everyone

experiences a rapid progression now and then and if thats what you are

experiencing then you will plateau soon.

Aussie Maureen

>

> Well, I was so happy to see posts from three other NC folks, ,

> Judith and . Maybe we could get together sometime. Maybe in

> Raleigh. Do all of you drive? , you mentioned that you are

> progressing rapidly. My husband thinks that I am. I will be so glad to

> find out what Dr. Bedlack thinks. In my reading I thought that PLS was

> so rare but it seems from the PLS-Friends group that there are right

> many. I hope I stay in this group.

> One of you mentioned the NC Connection. What is this? Is it something

> I could do.

> I have told my family that after my visit to Duke and we begin to tell

> our friends about my situation I want to get each one that asks what

> they can do for me to sponsor me in a fundraiser for research. Any

> ideas?

> -Norma

>

[Guest guest]

>There is what they call Autumn in North Carolina the first weekend

in October--hosted by Don and Bettie Jo . I just saw them

again this weekend--met them at Spring Fling last year--think about

that because they have a scooter/wheelchair race and it would be a

chance to get to meet many others from the list--They are in

Germanton and he hosts this annually!

Sue Me

hey norma,

>

> that would be great! we should figure ouLadies,

t a time when we can all get

> together. i hope your appointment at duke goes well. what day do

you

> go?

>

> sarah

>

> >

> > Well, I was so happy to see posts from three other NC folks,

> ,

> > Judith and . Maybe we could get together sometime. Maybe

in

> > Raleigh. Do all of you drive? , you mentioned that you are

> > progressing rapidly. My husband thinks that I am. I will be so

> glad to

> > find out what Dr. Bedlack thinks. In my reading I thought that

> PLS was

> > so rare but it seems from the PLS-Friends group that there are

> right

> > many. I hope I stay in this group.

> > One of you mentioned the NC Connection. What is this? Is it

> something

> > I could do.

> > I have told my family that after my visit to Duke and we begin

to

> tell

> > our friends about my situation I want to get each one that asks

> what

> > they can do for me to sponsor me in a fundraiser for research.

Any

> > ideas?

> > -Norma

> >

>

[Guest guest]

Hi, , and Norma,

Welcome, and to all others new or renewed, to the group. The number

of PLSers and HSPers. Judith is from Archdale; Bettie Jo and I live

in Germanton (near Winston-Salem); Jean Mills and Larry Asbury in

Greensboro; Donna Isenhour, Conover; Beckner, Wilmington; Pat

Croom, Garner; Duncan, Belmont; Carolyn Kahle, Ramseur; Pat

Montgomery, Youngsville, and at least 8 others that I have not met.

the North Carolina Connection mentioned may be " Autumn in Carolina "

that Bettie jo and I host in October. This year's event will be

during the weekend of October 6 - 7. This will be our fifth event.

A number of folks arrive on Friday, and those will gather for dinner

and conversation. The meting will be on Saturday, starting about

9:30 and breaking up around 4. We will gather again to share a meal

on Saturday. I have not gotten too far in program planning, and

suggestions on what participants would like to do or see are

welcomed.

We plan to continue the SAWCAR races on Saturday as a fund raiser.

Additional information will be posted soon.

I am planning for the Holiday Inn Select (Madson Park) to the

facility for weekend guests. The contact will be signed Monday or

Tuesday. I will have 10 rooms blocked out, including the five

accessible rooms in the motel. The rate will be $64.00 plus tax per

night.

Again, welcome to all.

Don

[Guest guest]

, If we can get together with and Judith, I would be glad to pick

you up. My only concern would be if my car would hold what you would need

to bring. I have an Avalon, Toyota. I bought a nice walker with a seat but

had to return it because I could not get it into the truck of my car. Let me

know what you think. -Norma

[Guest guest]

Norma, To get togrther would be great! I missed Spring Fling as I am

recuperating from emergency surgery to remove my spleen. I am not driving yet.

My private email is shopkins2@... and I live in town. in

NC

Well, I was so happy to see posts from three other NC folks, ,

Judith and . Maybe we could get together sometime. Maybe in

Raleigh. Do all of you drive? , you mentioned that you are

progressing rapidly. My husband thinks that I am. I will be so glad to

find out what Dr. Bedlack thinks. In my reading I thought that PLS was

so rare but it seems from the PLS-Friends group that there are right

many. I hope I stay in this group.

One of you mentioned the NC Connection. What is this? Is it something

I could do.

I have told my family that after my visit to Duke and we begin to tell

our friends about my situation I want to get each one that asks what

they can do for me to sponsor me in a fundraiser for research. Any

ideas?

-Norma

[Guest guest]

Hello NC folks,

I am off work next week for spring break so if we wanted to get together that

would be a good time for me.

Judith in NC

NKBnormie@... wrote: , If we can get together with and Judith,

I would be glad to pick

you up. My only concern would be if my car would hold what you would need

to bring. I have an Avalon, Toyota. I bought a nice walker with a seat but

had to return it because I could not get it into the truck of my car. Let me

know what you think. -Norma

[Guest guest]

hey norma, judith, and susan,

the end of next wk would be great for me too. my husband is off

thurs. and fri. so he could take me to meet you all. do either of

those days work?

sarah

, If we can get together with

and Judith, I would be glad to pick

> you up. My only concern would be if my car would hold what you

would need

> to bring. I have an Avalon, Toyota. I bought a nice walker

with a seat but

> had to return it because I could not get it into the truck of my

car. Let me

> know what you think. -Norma

>

>

>

[Guest guest]

Hey Ladies,

This is great and sure hope it works out for all of you! It's nice to

meet a small group of people so you have the chance to talk and get to

know each other a little better--then maybe this fall you can go to

the Autumn in NC and meet a larger group of people. Take pix and I'm

sure Kathi would put them on the website as a connection or at least

you can share them with some of us!

Have fun!

Sue Me

>

> hey norma, judith, and susan,

>

> the end of next wk would be great for me too. my husband is off

> thurs. and fri. so he could take me to meet you all. do either of

> those days work?

>

> sarah

[Guest guest]

Hi, , Judith and , I would love to meet with ya'll next week and

had offered to pick up but my husband and I already had a trip to the

mountains planned for Easter weekend which I had almost forgotten about. But

in addition to that I just had a real shock today. I went to the ALS clinic

hoping to rule out ALS and instead I learned I should not drive anymore until

I go back and pass an evaluation. I have had no problems driving at all and I

was not at all aware that my arms or right leg were really involved to that

degree. But I want everyone to be safe so I will do as told. Just still in

shock and shed my first tears!! I go back next week for more EMGs and then the

21st for driving evaluation and then May 2 to see Dr. Bedlack again. Very

tired after this day. Maybe tomorrow I will feel more positive. Anyone else had

this problem about driving?? -Norma

[Guest guest]

Both days sound good to me. Someone familiar with Raleigh needs to pick a day,

time and place. Please keep in mind rush hours because I know traffic and be

crazy at times. This will be great. I wanted to go to spring fling in West Va.

but the ride was just to long to have to work Friday, drive and then get up and

go to work Monday morning.

Judith

srwitt srwitt@...> wrote: hey norma, judith, and susan,

the end of next wk would be great for me too. my husband is off

thurs. and fri. so he could take me to meet you all. do either of

those days work?

sarah

, If we can get together with

and Judith, I would be glad to pick

> you up. My only concern would be if my car would hold what you

would need

> to bring. I have an Avalon, Toyota. I bought a nice walker

with a seat but

> had to return it because I could not get it into the truck of my

car. Let me

> know what you think. -Norma

>

>

>

[Guest guest]

Norma,

i am sorry to hear about the driving too. i haven't driven in a

while; i asked dr bedlack again at my last visit but he said no. i

don't have much control of feet/legs and issues w/my hands as well,

which knocks out hand controls. we have a great babysitter who helps

with the kids, and takes my anywhere i need to go. i'm really hoping

your eval will go well and you'll be back on the roads. but i'm sad

you've been upset; it is hard.

i agree w/Judith on our get-together; why don't we do our connection

another time. Judith, are you a teacher? if so, maybe we could get

together the beginning of the summer and will be feeling

better from her surgery by then too. i am disappointed though:-(

BUT i am looking forward to meeting you all in the next couple of

months.

sarah

Hi, , Judith and , I would love

to meet with ya'll next week and

> had offered to pick up but my husband and I already had a

trip to the

> mountains planned for Easter weekend which I had almost forgotten

about. But

> in addition to that I just had a real shock today. I went to the

ALS clinic

> hoping to rule out ALS and instead I learned I should not drive

anymore until

> I go back and pass an evaluation. I have had no problems driving

at all and I

> was not at all aware that my arms or right leg were really

involved to that

> degree. But I want everyone to be safe so I will do as told. Just

still in

> shock and shed my first tears!! I go back next week for more EMGs

and then the

> 21st for driving evaluation and then May 2 to see Dr. Bedlack

again. Very

> tired after this day. Maybe tomorrow I will feel more positive.

Anyone else had

> this problem about driving?? -Norma

>

>

>