(No subject)

April 5, 1999

,

I was first diagnosed at age 42, just like your husband. I also have

2 children--boys.

I know that the wonderful people who are members of this mailing list

will provide support to you, your family, and all of us as we all try

to deal with PLS.

There are 2 other resources available for PLS people. First, is

Reyerse's PLS website:

htty://members.home.net/freyerse/welcome.html

The site is updated monthly and is really excellent. In addition to

the info that it contains, it has lots of links to other sites where

you can research PLS and related topics.

Second, is Joe Alberstadt's Interactive newsletter, " Synapse " . It

comes out monthly and is just wonderful. I just got the most recent

issue. It had a large section about falling. It changed the way I

thought about risk taking (walking). Hopefully, I'll avoid a few

broken bones having read the articles.

Unlike most newsletters, you must do more to continue to receive it.

You must send messages for publication. Email Joe at

epsPLSpal@....

Hope to hear from you again.

Keep the faith.

Mark

--- J Lawrence wrote:

>

> Jerry,

> My ex husband was dx with pls last year. He is 42

> y.o. He had two spinal

> taps recently. We have two children, and soo I have

> been concerned about

> this disease as well as my girls are worried. His

> began with a dragging

> left foot, and he falls often. He is self-employed

> and so does not have

> anything to fall back on. I'm so grateful to this

> site. There is little

> info out there. The best seems to be from people

> like you who share their

> experience. Thanks, Lawrence

>

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

> We have a new web site!

> http://www.onelist.com

> Onelist: The leading provider of free email

> community services

>

_________________________________________________________

April 7, 1999

Well After the cruise it was 10 days before I shook off the really bad cold.

One day I was on bed all day. Then I was really behind getting daily chores

done. And without getting caught up, I spent next full week on income tax.

Now today April 7 I can breathe a little and finally see what's waiting on

the e-mail. I'm sorry I haven't been back to you sooner. I'll try to be more

attentive.

Joe Alberstadt

September 4, 1999

In a message dated 9/4/1999 9:28:13 AM Eastern Daylight Time,

gprogers@... writes:

<< I think most of us who don't know about our child's hearing loss

have been there. One day you finally finally realize that it doesn't

matter how, only that you need to do the best you can >>

I agree Tammy. Don't let the *why's* make you nuts. Alot of people never

know the reason, when it happened etc.....

Elaine

September 4, 1999

At 09:28 AM 9/4/99 -0400, brogers wrote:

>

> >Well this is definetly longer than I planned, but I just needed to vent and

> >also see if anyone out there has any advice or information for me. Also is

> >there any way to find out what caused Alek's hearing loss? Like was he

>born

> >with it, was it from meds he was on, the oxygen he was on, missed ear

> >infections????

>

>Tammy,

>

>You may never know. I remember wanting answers. My daughter may have been

>born with her loss, it may have been caused by meds, it could be related to

>her kidney disease, part of it could be the result of repeated ear

>infections. We will never know for sure. Wondering is a normal stage to go

>through. I think most of us who don't know about our child's hearing loss

>have been there. One day you finally finally realize that it doesn't

>matter how, only that you need to do the best you can with the cards you

>have been dealt.

>

>Barb

All true. For us, it has to be genetic since we have two, each born via

different means and with no complications. I stopped wondering once my

second was born. However, now Gallaudet wants to test us for connexin-26,

and we're going for it. Hey, it's their dime.

Chris

<< Christofer deHahn..................Manager, EDA Systems and Test >>

<< Quantum Corporation...........Shrewsbury, Massachusetts, USA >>

January 18, 2000

Thanks Rita. Your attitude makes me smile too. Sounds like you had a

wonderful day and I'm glad. I hope you and all of us have many, many, many

great days. It is amazing what now constitutes great. After all is stripped

off you find out that the little things are the only things that matter. In

many ways, we are lucky. Most people never figure this out. Have a good

one. Your friend, Jeanne Ann. ps. what did you fix for dinner?

January 18, 2000

Jeanne Ann:

Good for you. When I read positive things like your day, it makes me

smile.

Last Saturday, we met our daughter at one of those food warehouses,

walked there for 2 1/2 hours, without my walker, just with the cart.

After we put all our stuff away, we met our daughter, climb her stairs 2

flights to her apartment. Thank God for railings. Than we decided to

do chinese, down the stairs again, to the restaurant. After dinner, we

rented a movie, back to my daughter's, up the stairs again, watched the

movie, and drove 35 minutes home. I did all the driving. I was so

tired, but it was such a wonderful day, and thank God I had the energy

to do it. It was bitter cold on top of that. Sometimes when I

accomplish days like that, I wonder HOW!! I just do it.

So I know how good it feels to accomplish anything we can still do.

Like I say, " THERE ARE A LOT OF THINGS I CAN " T DO, BUT BY GOD I AM STILL

GOING TO DO THE THINGS I CAN DO.

God Bless you!

Rita

January 19, 2000

What in the world is macaroni with ears? I guess you've guess, I'm not

Italian. I visited Italy though. Great Place.

January 19, 2000

Hi Jeanne, thanks for your words of wisdom. I learned a long time ago,

that we got what we got, and it ain't gonna change (sorry about the bad

english), so we have to make the best of it, and ajust our lives

accordingly. I just don't have the time to sit around and worry about

what to do, and feel sorry for myself, I just do.

Supper last night was home made pizza, and tonight, it Orrochette (a

kind of macaroni with ears, tossed with italian sausage, broccoli, olive

oil & grated cheese, and a touch of red pepper, it's wonderful. with a

tossed salad on the side.

Tonight is bingo night, thats always fun (if you win)

Talk to you soon

Rita

January 19, 2000

Jeanne:

It's a small macaroni, that is shaped like ears, it's called Orrochette

(not sure of the spelling. When I scramble the sausage & broccoli

together the macaroni catches the meat in the ears, also they look like

little cups w/saucers attached (hard to explain). If I had your address

I would send you a box.

Rita

January 21, 2000

This is one I will sign my name to.

Rita

[This message contained attachments]

January 21, 2000

Wow! Italy! Were you lucky enough to be born there or what took you? I

spent 9 great years on a busman's holiday in Germany working in my " rich

uncle " 's Air Force. Lavon

At 08:07 PM 01/21/2000 +0000, you wrote:

> From: <>

>

> BEEING A BITCH IS A TOUGH JOB, BUT SOMEONE HAS TO DO IT!

> (In our home I am the one)

> Cecilia

> Perugia, Italy

>

January 21, 2000

Hi Coni, Is Perugia anywhere near Aviano AFB, Italy. I spent 2 weeks there.

Loved it.

January 21, 2000

BEEING A BITCH IS A TOUGH JOB, BUT SOMEONE HAS TO DO IT!

(In our home I am the one)

Cecilia

Perugia, Italy

January 21, 2000

Cecilia,Where is Perugia, located?

.

January 22, 2000

Perugia is an Etruscan city in The Appenines. Between Rome and Florence

in the green heart of Italy called Umbria. It is a most beautiful city

with the most fantastic view. 500 mt above sealevel.

But! as most cities in Italy this is very hard for people with any kind

of handicap. But the beauty of it is worth it all. I moved here 35 years

ago from cold Sweden.

Saluti

Cecilia

January 24, 2000

Jeanne Ann:

Boy did you hit the nail on the head. These people who are still able

to go to work should count there blessings. I wish I could come home

from work, and be able to sit down and read my mail. I would smile all

the way to the bank. Never thought it would ever come to this. There

is only so much info that we can give each other relayive to whats going

on medically with PLS, so whats the big deal.

I will never give in to pressure from the other's. Sorry gang, but

after 20 years, I am not going to change what keeps me going.

Rita

January 24, 2000

Jeanne Ann:

I will not give in to all of this. I feel what we contribute to each

and every one, is as important, as to how much medications we use. Most

of the PLS conversations is repetitious anyway. Yes, it's good for the

new kids on the block, but most of that stuff I delete. Maybe they do

not think it's relative to be able to walk 4 hours at the mall at xmas,

and to be able to climb stairs twice in one day. As you said, I hope

the day never comes when they need that kind of support.

Rita

January 24, 2000

RITA---

GOD BLESS YOU for not giving in to pressure. We need your up beat

attitude to help us along the and this is one that does need you. Sitting

at home all day in an electric wheelchair can get you down sometimes.

----------

>

> To: PLS-FRIENDSonelist

> Subject: Re: (no subject)

> Date: Monday, January 24, 2000 8:52 AM

>

> From: ritadfromhollis@... (Rita DiClemente)

>

> Jeanne Ann:

>

> Boy did you hit the nail on the head. These people who are still able

> to go to work should count there blessings. I wish I could come home

> from work, and be able to sit down and read my mail. I would smile all

> the way to the bank. Never thought it would ever come to this. There

> is only so much info that we can give each other relayive to whats going

> on medically with PLS, so whats the big deal.

> I will never give in to pressure from the other's. Sorry gang, but

> after 20 years, I am not going to change what keeps me going.

>

> Rita

>

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

January 24, 2000

:

I hear you, and I am going to stay and do my thing, even if it only

helps one person (like you), than it's worth it. Thanks for your kind

words.

Rita

January 24, 2000

I am sorry you are giving up under pressure as I have really enjoyed your

in-put and it is like you say some day there time will come when they will

be glad to have someone to share happy days and down days. Encouraging not

to give up when depression hits hard. I thought when this split came that

was what the friends stood for, friends in time of need???

Bannwart

----------

> From: JeanneAnnNeff@...

> To: pls-friendsonelist

> Subject: (no subject)

> Date: Monday, January 24, 2000 8:46 AM

>

> From: JeanneAnnNeff@...

>

> I have just read all the comments about too much chitchat and too much

mail.

> I assure you that all chit chat will stop from this end and that I will

make

> certain any reply from me will concern PLS. I apologize for thinking

that

> you cared if I had a good day or not. I cared whether you did. I

apologize

> for wanting to share happy moments or thoughts with you all. And I

apologize

> for bothering you when I needed your opinion. I guess hitting delete is

just

> too much trouble. I just hope that when the day comes, and it will come,

> that you need someone to listen to you or just be a friend over the

miles,

> that someone will be there. I will remember you all in my prayers.

> Your friend, Jeanne Ann

>

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

January 24, 2000

:

If I have anything to say about it, she will not give in. I have

already asked not to, and she hasn't given us her answer as yet. Lets

hear from you JeanneAnn once you have thought it all over. Things

should not be this way, we don't need this kind of stress.

Good thing this was a Prozac day for me.

Keep Smiling!

Rita (the rebel)

January 24, 2000

Again I say please think it over we (I) need people like you. We have

enough blue days we need some sunshine along the way. Take Rita's floor

mat " the rebel "

----------

> From: JeanneAnnNeff@...

> To: pls-friendsonelist

> Subject: (no subject)

> Date: Monday, January 24, 2000 8:46 AM

>

> From: JeanneAnnNeff@...

>

> I have just read all the comments about too much chitchat and too much

mail.

> I assure you that all chit chat will stop from this end and that I will

make

> certain any reply from me will concern PLS. I apologize for thinking

that

> you cared if I had a good day or not. I cared whether you did. I

apologize

> for wanting to share happy moments or thoughts with you all. And I

apologize

> for bothering you when I needed your opinion. I guess hitting delete is

just

> too much trouble. I just hope that when the day comes, and it will come,

> that you need someone to listen to you or just be a friend over the

miles,

> that someone will be there. I will remember you all in my prayers.

> Your friend, Jeanne Ann

>

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

January 24, 2000

looks like I opened mouth and inserted huge foot. Please accept my apology for

offending those of you who disagree with my views on the email. My intent was

certainly not to offend...but to offer an opinion......which I now deeply

regret.

I will not offer anymore I assure you all. God bless you all

JeanneAnnNeff@... wrote:

> From: JeanneAnnNeff@...

>

> I have just read all the comments about too much chitchat and too much mail.

> I assure you that all chit chat will stop from this end and that I will make

> certain any reply from me will concern PLS. I apologize for thinking that

> you cared if I had a good day or not. I cared whether you did. I apologize

> for wanting to share happy moments or thoughts with you all. And I apologize

> for bothering you when I needed your opinion. I guess hitting delete is just

> too much trouble. I just hope that when the day comes, and it will come,

> that you need someone to listen to you or just be a friend over the miles,

> that someone will be there. I will remember you all in my prayers.

> Your friend, Jeanne Ann

>

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

January 24, 2000

Carol:

We are not offended, we feel that if we want to laugh a little, and try

to lift the spirits of other's who have PLS, in this way, we should have

that rght, without being criticized. Thats what bother's us, I am 63

years old and have had this stupid disease for 20 years. I widh I had

the support and encouragement you are all getting, when I was first

diagnosed. I had no one to turn to, and had to fight my own battle. I

couldn't turn on my computer and talk to other people who had my

disease. Not until I joined NORD, and got names of other people I could

write to, like Joe Alberstadt, and all the other's. I remeber

sending out one letter, that I copied and sent to about 6 people at that

time. About a week later I received my first reply, along with one of

my letter's returned marked " deceased " . IFirst thing I said " was thank

God I can still open & read the letter from my new friend " . So I know

what works for some peopl, and it is not always, what pill or vitamin

you take, it's the whole package. So far I am living proof that

attitude and encouragment works.

There I got that out, so don't feel bad, that is what we are all here

for to give FULL support to each other.

Love to All!

Rita (The Rebel)

January 24, 2000

please stay. i don't need your apology, i need you for all the reasons

you listed, so please stay........you are also in my prayers. i care.

kathleen