Leather Couch

[Guest guest]

Rita,I don't think 's comment was meant to hurt you,I think he was just

making a statement.Please stay online you are an inspiration to all,and keep

the comments coming,that's what makes this group interesting, and

knowledgeable,we know more about this disease than most doctors,as we all

know.

God bless,.

[Guest guest]

I think everyone with PLS who can be here needs to be here. We all react

to our disease differently and I think doing so helps clarify where we have

been and where we are going. I appreciate hearing from others who are

walking this rare path with me- I look forward to the guidance (positive

and negative) from those ahead and hope to provide the same for those

behind. I hope to be supportive on my good days and hope to be supported

on those not so good- most of all I value the opinions of those who have

truely walked a mile in my shoes - or used a wheelchair. Rita, I value

your message from since it gave folks a chance to tell him that his

site still has value and we value his efforts. Just my thoughts, Lavon

At 09:49 PM 01/02/2000 -0500, you wrote:

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

>

>Mike:

>

>You'd better get the couch ready it is me again. I am going to stop

>participating in this PLS group, the reason being , every time I

>comment, I seem to stirrup a hornet's nest ('s comment about

>wasting his time, was attached to a message I had sent to the group) I

>feel

>because of my attitude towards having PLS, that I am not contributing to

>this group in a positive manner. I have made some wonderful friends,

>and I will stay in touch with them one on one, and I will continue to

>read everything that is written. but I will not comment any more, so as

>not to start any problems.

>

>I have had PLS for over 20 years, and I know what works for me. I will

>keep all of you in my prayer and in my heart.

>

>Rita

>

>>

>

[Guest guest]

Thanks for your kind words , but I have to disagree with you. Why

is it, that no one else gets such a negative response when they make

any comments, it's only me. If I can;t say the things that I think will

help, than it's best I say nothing. My feelings are very strong, about

PLS, and I disagree more than I agree, and thats what gets me into

trouble.

Thanks for your support, your a dear. If you ever coe to NH, you'd

better look me up.

Rita

[Guest guest]

how can i access the pls chat room?

[Guest guest]

i agree with the lockwood family. we all deal with our disabilities in

different ways. i have been disabled for 33 years this january. i was

still in high school when it began and the struggles back then were

worse than they are now. i wanted to work but had a hard time finding

jobs because no one thought that i was capable of doing anything. the

jobs i did get were always low paying ones, and so on and so on. i am

not married so need to manage on my own as best as possible. i am not

feeling sorry for myself it is just the way it is. i like hearing about

the struggles and successes of others. i don't feel so alone. i may not

agree with everything others say or do but that is what makes us all

special. it is what makes us who we are and i think makes us stronger

and better prepares us for whatever the future may bring. i thank God

for all of you every day.

kathleen

Lockwood Family wrote:

>

>

>

> I think everyone with PLS who can be here needs to be here. We all react

> to our disease differently and I think doing so helps clarify where we have

> been and where we are going. I appreciate hearing from others who are

> walking this rare path with me- I look forward to the guidance (positive

> and negative) from those ahead and hope to provide the same for those

> behind. I hope to be supportive on my good days and hope to be supported

> on those not so good- most of all I value the opinions of those who have

> truely walked a mile in my shoes - or used a wheelchair. Rita, I value

> your message from since it gave folks a chance to tell him that his

> site still has value and we value his efforts. Just my thoughts, Lavon

>

> At 09:49 PM 01/02/2000 -0500, you wrote:

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

> >

> >Mike:

> >

> >You'd better get the couch ready it is me again. I am going to stop

> >participating in this PLS group, the reason being , every time I

> >comment, I seem to stirrup a hornet's nest ('s comment about

> >wasting his time, was attached to a message I had sent to the group) I

> >feel

> >because of my attitude towards having PLS, that I am not contributing to

> >this group in a positive manner. I have made some wonderful friends,

> >and I will stay in touch with them one on one, and I will continue to

> >read everything that is written. but I will not comment any more, so as

> >not to start any problems.

> >

> >I have had PLS for over 20 years, and I know what works for me. I will

> >keep all of you in my prayer and in my heart.

> >

> >Rita

> >

> >>

> >

>

>

[Guest guest]

I apologize for being out of touch, but with the holidays, I've been

away from work quite a bit and have not had time to do anything but read the

digests. I fell Christmas Eve and dislocated my shoulder and that took me

away from work also. I was hurrying and not concentrating on my walking and

just tripped again. I had myself convinced that if I was careful and paid

attention when I walked I could do okay. It doesn't take a minute to lose

my concentration, though, and now I'm paying for it. I also turned around

and fell again yesterday, but fell on carpet and did not try to break my

fall hoping to avoid making my shoulder worse. I am very aware that both of

them could have been much worse than they turned out, and now intend to

start using a cane as soon as I have money to do it. With Christmas and car

problems, it will be a while before I can do that.

I wanted to say that I really appreciate the website also. Even

though my neurologist gave me a lot of good information when she diagnosed

me, it was still reassuring to read about it when there was nothing on it

anywhere else. I found PLS Friends through the website and really

appreciate everything you all write so I can find out how other people are

dealing with it. When I read how other people have searched for

information, whether they find it or not, it is a path I do not have to

search again. I appreciate that. I also appreciate the positive attitudes

so many of you have. It helps me to be more positive. I try not to think

about it most of the time because I do get down, but I enjoy reading the

digests.

[Guest guest]

Rita,

The only thing you need a couch for is the way you are now feeling. I have

read the responses everyone else has given you and believe they have good

insights into what is needed and what you do contribute. Keep your positive

attitude and keep going. This too shall pass. Right now it is important for

all of us to keep together and keep telling each other's stories. There may

be a shred of evidence out there that has been missed by all the

neurologists and us, but which someone with a little insight and wisdom may

spot. This little shred may open a whole new avenue of research or self-care

we have overlooked. By the way, your little cards are cute and uplifting. If

people don't want to open them, they have the choice of deleting them. We

all need to keep our sense of humor and our positive attitudes. These are

among the strongest disease fighters there are. If we look for disease and

trouble, we will find it. If we look for health and joy, we will find those.

This doesn't mean that all days will be good. It just means that we will be

better prepared for the bad ones.

is not wasting his time. I certainly hope more people will tell him

that. The web site is what brought me to you and all the rest of us PLSers.

And I found it by contacting a medical website at Beth Israel Hospital in

New York. They told me it was the only thing they could find which could

give me the information I was looking for. It more than exceeded my

expectations! I found Joe Alberstadt there, too. His interactive newsletter

is excellent and he has good taste in correspondents.(Last issue I was named

correspondent of the month, though for the life of me I can't understand

why. Thanks, Joe.) Levy was also found this way and the newsletter he

sends out. Since finding this website, I have gotten more information,

knowledge, and support than I had in the previous 3 years. This is great and

it should continue for others, also!

We all need to have someone with whom we can talk who may understand what we

are going through. Some of us are in worse shape than others; some are doing

well after several years.If we don't have each other, and the new people who

are finding us, what will become of us? Isolation is not a good thing. Human

beings need contact, either in person or phone or writing. This is a method

of us having contact. Don't pull out and just read what we have to say. We

need you and we need each other. We need your responses, especially since

you are one of us who has been diagnosed the longest and is apparently doing

the best. That gives you more information and wisdom about PLS than the rest

of us have.We will catch up with you, though, so keep on your toes. There

are many new people coming on board, so there will be more information

coming along. Remember, one step back is ok if you are able to take two

steps forward!

Listen to your heart and not your head. Your head is telling you things that

you have heard in your past. It's called self-talk, or automatic thinking.

It is done at an unconscious level and is very rapid. It replaces the data

you have before you with data that is no longer relevant and may be harmful

in the way you view your world. Your heart will tell you what to do. Listen

to it.That's where love is, and we all could use love to help us face our

lives, especially now that our style of living has had to change.

Enough of the rambling. Don't quit, don't leave, just love. Love, Mike Gray.

Rita DiClemente wrote:

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

>

> Mike:

>

> You'd better get the couch ready it is me again. I am going to stop

> participating in this PLS group, the reason being , every time I

> comment, I seem to stirrup a hornet's nest ('s comment about

> wasting his time, was attached to a message I had sent to the group) I

> feel

> because of my attitude towards having PLS, that I am not contributing to

> this group in a positive manner. I have made some wonderful friends,

> and I will stay in touch with them one on one, and I will continue to

> read everything that is written. but I will not comment any more, so as

> not to start any problems.

>

> I have had PLS for over 20 years, and I know what works for me. I will

> keep all of you in my prayer and in my heart.

>

> Rita

>

>

[Guest guest]

Rita:

I regret that you are considering withdrawing from active

participation in PLS-FRIENDS. Should I feel partly responsible

since it does seem that you and I are often at loggerheads, ready to

quarrel at the drop of a phrase. I highly respect the fact that you are

63 years old with 20 years experience in dealing with PLS. I think

that it is GREAT that you continue to have the ability to accomplish

as much as you do. You are so fortunate in that respect. Many who

have been able to recognize symptoms for a much shorter time are

unable to walk four hours Christmas shopping or to drive themselves

because of the startle reflex and loss of hand-eye coordination. It

seems that PLS effects different people in different ways, and it is

very important that PLS-FRIENDS is and continues to be a place of

open forum in discussing those differences. Rather than a hornets

nest, open discussion of differences allows everyone to see different

views.

Please let me relate an experience. I have been heavily involved in

Boy Scouts of America for 10 years. I served as Scoutmaster for 9

years and served in other levels at the same time. In my first year as a

leader, another adult and I took advantage of every possible

opportunity to state our different opinions. By and large we fought at

every level, finally, after about four years, reaching the point that we

both realized that we were not only destroying each other, we were

detrimental to the advancement of Scouting which we both loved so

much. We met, sat down across from each other, and tried to make

peace. Still, there were subjects that we differed on so strongly, it

began to look like we would never be able to work together. We then

decided that on some subjects, we MUST AGREE to DISAGREE.

That was about six years ago. Now the leader and I are very close,

indeed, he is the leader of our District and I am his Commissioner.

He leads the District and my job is to insure that the quality of the

program remains high. We still have differences, and in some

discussions one or the other of us will say " I agree to disagree " . We

then realize that we have gone as far as possible on that subject, and it

is time to move on. It is working well, and I now count him as a

friend and he knows that he can always depend on me.

Having said that, I ask that you review your essay posted on December

19. Don't all of us fit in the subject? I hope so, for I am sure that

every member of the group cares deeply for each other. To cease

participating in PLS-FRIENDS would, in your words, be " ...safe and

comfortable, but dull and utterly pointless. " Please reconsider.

Don

[Guest guest]

Mike:

I appreciate what you and everybody else is saying, I really do,

however, what good is it, if when I say or do something, right away, I

am criticized. I don't see it happening to anybody else. When I don't

agree with something or somebody I get these one on one letter's telling

me, how wrong I am to say or feel the way I do.

I submitted a copy of a letter from my doctor, and I was told in a one

on one letter, that my doctor, didn't know what he was talking about,

due to his lack of experience with PLS patients. Now really, this

disease is so rare, that many doctor's have never heard of it, and have

to run to a book to find out what the heck PLS is, and my doctor knows,

what it is, and doesn't pretend to have a magical treatment to make me

better. We tried swimming, it only aggravated my condition. We tried

exercises, and that also made things worse. So it's not that he is not

trying to help me, he is just a frustrated as my doctor, not to be able

to help. However, he is please that I am able to control my condition,

by trial & error. I know this doesn't work for everyone, but it works

for me. I know how well I feel, and I don't have BAD days, I just live

my life to the fullest, regardless what my physical condition is, and

adjust my life accordingly. And when I am criticized for this and that,

it upsets me, because I feel that I do have a lot to give, and have in

the past. I try to stay away from negative situations as much as I can,

and it's not easy, but I try.

I read a letter today, from a person who fell on her shoulder, and than

fell again, and I said to my husband, why doesn't she have sense enough

to purchase a 4 wheeled walker and stop the falling. I haven't fell in

over two years. I don't pretend to have all the answers, but believe

you me, if I had or knew about this walker many years ago, it would have

saved me many trips to our local hospital.

Sorry to be rambling on the way I am, don't know what got me going.

I realize everyone reacts differently to there own situation, and there

are times when no words, can change attitudes.

I will try to reconsider what I said, because I do feel I have something

to contribute, because of how good I feel, and how well I function after

having PLS for so many many years.

Thanks Mike, you always have the words to make me see things

differently.

Rita

[Guest guest]

Hi :

I am in Hollis, just outside of Nashua.

Look forward to meeting with you.

Rita

[Guest guest]

Don:

Thank you for your response to my letter.

However, let me make it clear I am not pointing the finger at any one

person. Yes, we have disagreed on many issues,

and I do respect your opinion, whether I agree or disagree. I never get

angry, or try to persuade anyone to take my position on the way to

handle there particular situation. I just wished I didn't get so much

negative flack, when my point of view is brought on the table, so to

speak.

I am not a very smart person, nor educated to the extreme that some of

you are. I am just a grandma trying to get along in this world, the

best I can, by helping other people, and when I feel I am not

contributing I back off. That is the way I am.

So I will end on that note, and do a little soul searching.

Rita

[Guest guest]

Me too!

[Guest guest]

I received this question today? Does any know of a PLS Chat Room, or

how do you all feel about starting one?

Rita

[This message contained attachments]

[Guest guest]

It would be great to have a chatroom. On AOL you can make up your own chat

room but not sure about getting others not on AOL on it. I will ask some

friends maybe theres a website all internet users can use. Jill

[Guest guest]

I would be interested, Jill

[Guest guest]

[This message is not in displayable format]

[Guest guest]

Hi all.......I like the ICQ idea myself......can check to see if anyone

is on there without going to a certain url etc first - If anyone is

interested, my ICQ name is oleCC - and would be more than happy to add

anyone in our group to my list .

Carol C.

Mike Gray wrote:

> Dear Jac and Rita and others,

>

> ICQ or MSN have available chat rooms that can be created for us. We

> would need to register and get a number, then establish a chat room.

> On ICQ, you can tell if one of your members, whose # you have in your

> address book, is online by looking at the little bar at the top. I

> don't know much about MSN, but believe it is somewhat the same. ICQ is

> a free service. MSN comes with Windows 95 and 98. Rita, you may only

> be able to use ICQ. Both are worth looking into. Mike Gray.

>

> Jac028@... wrote:

>

>> It would be great to have a chatroom. On AOL you can make up your

>> own chat

>> room but not sure about getting others not on AOL on it. I will ask

>> some

>> friends maybe theres a website all internet users can use. Jill

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

>> [

[Guest guest]

Mike:

I have no idea what your talking about!

I am only familiar with webtv, and Talk City, sorry to so limited, maybe

someone else can set it up, if enough people are interested. The only

bad feature, is it not just limited to people with PLS, all kinds of

people crop up in these rooms and some are really creeps, on the prowl.

Rita

[Guest guest]

Your right Rita, anybody can join in a chat room talk. I had a look at one

the other day - I couldn't even understand what they were talking about!

Seemed to have a language of their own!! Some comments were quite

offensive!

My dad (PLSer) is now also on Digital TV e-mail, but it is different in the

UK - I think it is literally just e-mail.

Sonya.

Re: Leather Couch

> Mike:

>

> I have no idea what your talking about!

> I am only familiar with webtv, and Talk City, sorry to so limited, maybe

> someone else can set it up, if enough people are interested. The only

> bad feature, is it not just limited to people with PLS, all kinds of

> people crop up in these rooms and some are really creeps, on the prowl.

>

> Rita

>

>

>

>

>

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

[Guest guest]

Alot of these rooms have been established for a long time, and people

get to know one another pretty well. The disability Chat rooms I go

into, for the most part, are pretty OK, and you know when there is a

pervert that comes in, and they are pegged pretty quick.

Rita

[Guest guest]

I agree with Sonja, I'm afraid with the chat room, PLSfriends would suffer.

As the caregiver, I work all day, and Tom and I enjoy reading the postings in

the evenings.

Trish and Tom Stokes

[Guest guest]

We already have a chatroom,why invite others into our group,and believe me,

we'll have every " degenerate " online getting into it, I think we are asking

for trouble considering a chatroom,thats my opinion.

.

[Guest guest]

Well everyone doesn't have to go into a Chat Room, and it should in no

way effect the PLS Line, it's just another way of getting in contact

with people.

Rita