Newcomer

[Guest guest]

Welcome Kathy:

The first few months of my symptoms I had a prickly sensation all over my body, especially on my back, for several days and on two occasions. The Dr. suspected MS but that was soon ruled out. From what I can tell PLS can have some "out-of-character" symptoms. Good luck in seeking a diagnosis.

in Texas

[Guest guest]

Hi Kathy! At least two of us, and I, had the waxing

waning problem. Mine included about 5 specific periods of 2-5 weeks in 2

years when I was weak, twitchy, achy, etc. I would go to the doc as soon

as I could get in only to be told I looked fine (only one doc saw me during

an episode and he was at an Air Force clinic where he seemed mostly to want

to get me out- he even recorded I was not weak when that was my main

complaint!). Anyway, both and I had self diagnosed ourselves with

MS which is probably why no one pays us for health advice :-) Supposedly

the waxing waning thing can't be PLS but that's what I heard about

fasciculations too... We await your outcome and welcome aboard. Lavon PS

eye things are also " not PLS " but I have a heck of a time keeping focus

when my eyes fatigue- never had a problem prior to PLS so who knows.

At 03:55 PM 08/14/2001 -0600, you wrote:

>Hi, everyone: I am a kind of newcomer. I am online for myself now. Before,

>my daughter(email-hetherington@sk,sympatic.)was getting the messages and

>saving them for me to read when I visited. I have not yet been diagnosed

>with PLS,;but it has been suggested as the cause of my problems and all my

>tests seem to be aimed at ruling out everything else. I have read the

>messages with great interest as many of you sound just like me, but with

>some differences.I have a few questions : 1st My symptoms seem to come and

>go. They never totally disappear, but at times I feel almost normal.The

>time can range from a few hours to a few months,but when the symptoms

>return, something is just a little bit worse. Is this part of the

>progression? 2nd: I am having trouble with my eyes.I had my eyes checked,

>but don't need new glasses.My optometrist thinks that it could be that the

>muscles of my eyes no longer work together. One set is slower than the

>other in bringing my eyes into focus It makes me feel as if I were drunk

>(my son's words, but they fit.) 3RD: Emotional lability-I don't have fits

>of laughter, but do get crying jags for no apparent reason. I also get

>times when I am very bad-tempered without reason. I am not sure if these

>are part of the problem or because of my problems causing

>fear,frustration, despair,etc. What do you think? Any advice/comments

>would be appreciated. Kathy O'B

[Guest guest]

Kathy,

I am so glad you opened up, and are here for information, support, and you'll find friendship too.

Sounds like your progression is slowly doing it's thing, and yes, I find that the bad days/good days come and go. Some days are definately better for me.

I am fortunate to have just my legs affected. However, my reflexes in my arms and jaw are beginning to be slightly hyper. (Rita, Ronnie, and other old-timers......don't you dare comment on my "hyper-jaw")

Welcome, Kathy, and just ask away your questions. Someone usually has an answer or suggestion.

Take care, and God bless.

Laurel

Newcomer

Hi, everyone: I am a kind of newcomer. I am online for myself now. Before, my daughter(email-hetherington@sk,sympatic.)was getting the messages and saving them for me to read when I visited. I have not yet been diagnosed with PLS,;but it has been suggested as the cause of my problems and all my tests seem to be aimed at ruling out everything else. I have read the messages with great interest as many of you sound just like me, but with some differences.I have a few questions : 1st My symptoms seem to come and go. They never totally disappear, but at times I feel almost normal.The time can range from a few hours to a few months,but when the symptoms return, something is just a little bit worse. Is this part of the progression? 2nd: I am having trouble with my eyes.I had my eyes checked, but don't need new glasses.My optometrist thinks that it could be that the muscles of my eyes no longer work together. One set is slower than the other in bringing my eyes into focus It makes me feel as if I were drunk (my son's words, but they fit.) 3RD: Emotional lability-I don't have fits of laughter, but do get crying jags for no apparent reason. I also get times when I am very bad-tempered without reason. I am not sure if these are part of the problem or because of my problems causing fear,frustration, despair,etc. What do you think? Any advice/comments would be appreciated. Kathy O'B

[Guest guest]

Hey Laurel, did you get my pic's of me in my red convertible???

Rita

Luv & Hugs!

*************************************

Some people succeed in spite of their handicap. Others succeed because

of them.

[Guest guest]

Rita,

YES, YES, YES I sure did! That looked like a lot

of fun!!!!!!!!!!!!! I'm gonna have to rent me one of

them for a day! What a gorgeous, sexy, happy woman

you looked like! That was one of the nicest funnest

birthday presents I have heard of in a long time.

And, as far as my jaw is concerned, just wait til we meet

in person, dear, then you'll know............Just as Ronnie,

Ed, Kathy, Dale, Doug, and Bill do.

My jaw flaps a lot.............

Laurel

Re: Newcomer

> Hey Laurel, did you get my pic's of me in my red convertible???

>

> Rita

>

> Luv & Hugs!

>

>

>

>

> *************************************

> Some people succeed in spite of their handicap. Others succeed because

> of them.

>

>

>

>

>

[Guest guest]

Laurel:

I was gorgeous, sexy and all those nice things you said about me. I

felt 20 years old (I always do). I would suggest that if you have a

dream, like I did, " DO IT " ! Don't wait life it to short.

As far as your " jaw " , I do pretty well in that category myself, mine

usually gets me in trouble, but I am getting better, right Mike?

Rita

Luv & Hugs!

*************************************

Some people succeed in spite of their handicap. Others succeed because

of them.

[Guest guest]

Rita:

I am all for living one's dream if at all possible. I'm going

to let my boys know what you got for your birthday. Hopefully, that will

give them a little hint, hint.

I have the day off tomorrow, and am going to the tattoo

parlor. I'll let you know in a day or two if I really did it!

That's one of my long-time dreams. Don't worry, it will

be tasteful, and inconspicuous!

As always,

Laurel

Re: Newcomer

> Laurel:

>

> I was gorgeous, sexy and all those nice things you said about me. I

> felt 20 years old (I always do). I would suggest that if you have a

> dream, like I did, " DO IT " ! Don't wait life it to short.

>

> As far as your " jaw " , I do pretty well in that category myself, mine

> usually gets me in trouble, but I am getting better, right Mike?

>

>

>

> Rita

>

> Luv & Hugs!

>

>

>

>

> *************************************

> Some people succeed in spite of their handicap. Others succeed because

> of them.

>

>

>

>

>

[Guest guest]

Rita,

What's your excuse? You were already bad when you met me....

Re: Newcomer

> Laurel, a tattoo, who'd guessed??? Where are you going to put it, and

> what??? I guess thats what happened when you met Ronnie, changed you a

> lot!

> To Bad!!

>

> Rita

>

> Luv & Hugs!

>

>

>

>

> *************************************

> Some people succeed in spite of their handicap. Others succeed because

> of them.

>

>

>

>

>

[Guest guest]

Laurel, a tattoo, who'd guessed??? Where are you going to put it, and

what??? I guess thats what happened when you met Ronnie, changed you a

lot!

To Bad!!

Rita

Luv & Hugs!

*************************************

Some people succeed in spite of their handicap. Others succeed because

of them.

[Guest guest]

Hi ,

I understand your anger. I to am angry but I am on the other end of this situation. I have a husband that has PLS and I care for him. It is just so hard sometimes wonder if I can stay much longer. We have been married for 25 years and have 5 kids. But I don't get the hugs and affection any more so hard for him to do with his canes and all. Or maybe just don't want to try this is what I don't know. I don't want to put pressure on him to do things he can't do. But I am only 48 and feel I have a lot of life left to live. So what do you do? If anyone has an answer please let me know. Thanks in advance Shirley

[Guest guest]

:

God Bless you sweetie! I feel the same way, I have had a better life

with PLS than when I didn't have it.

Good for you!

Rita

Luv & Hugs!

*************************************

Some people succeed in spite of their handicap. Others succeed because

of them.

[Guest guest]

thanks for the info sorry you are so angry but not sure what I will do. Just wish vows would had said in pls or health maybe I would have thought harder. I don't blame him but I also don't blame me this is a hard time thank you Shirley

[Guest guest]

Hi Not sure what that all meant but I think I got the jest of it. My husband walks with 2 canes and uses a wheelchair for work. He never approaches me in any manner has been maybe in 3 years. I don't approach him as I am not sure what his response would be I wish I knew but do not want to put any undo stress on him. I feel he gives me what he can and that should be good enough but sometimes it is just so lonely. He a lot of times don't even come to bed at night just sleeps in the lift chair. Sometimes he has bowl and bladder accidents and that bothers me also. Have to always cut his food will as he may choke if I don't. So I am just going to get on with my counseling and find what will work best for us. Thanks so much for your understanding Shirley

[Guest guest]

yes and thanks

[Guest guest]

thanks , will call when I can where are you at what state do you live in? Have to watch the phone bill but I will call. thank you for understanding

[Guest guest]

This hits kinda close. I was married for 16 years, but no kids. I think

the marriage vows include " ...in sickness and in health... "

Having said that, however, I'd say scoot if you feel like it. He'll get

over it.

Or not.

Look at me. It hasn't affected me a bit.

>Hi ,

> I understand your anger. I to am angry but I am on the other end of this

>situation. I have a husband that has PLS and I care for him. It is just so

>hard sometimes wonder if I can stay much longer. We have been married for 25

>years and have 5 kids. But I don't get the hugs and affection any more so

>hard for him to do with his canes and all. Or maybe just don't want to try

>this is what I don't know. I don't want to put pressure on him to do things

>he can't do. But I am only 48 and feel I have a lot of life left to live. So

>what do you do? If anyone has an answer please let me know. Thanks in advance

>Shirley

Galen Hekhuis NpD, JFR, GWA ghekhuis@...

They killed his mother, they burned his forest, he's back, and he's pissed

Bambo!

[Guest guest]

Galen:

It is nice when you come to visit, please do it more often, I miss your

words of wisdom. How is you summer going? haveyou bought any new

t-shirts lately??

Rita

Luv & Hugs!

*************************************

Some people succeed in spite of their handicap. Others succeed because

of them.

[Guest guest]

Regarding the t-shirts, I haven't gotten any recently, but plan on picking

up a couple more " Bite Me " t-shirts in a few weeks. I need to digress a

bit in explanation for some of the newer folks. I have been a cave

explorer for several many years and am going to the Old Timer's Reunion

again this year. The Old Timer's Reunion is a get-together for cave

explorers. They've been holding it for the past 50 years or so, and I've

been to about 35 of them. I'm kind of a fixture there. Anyway, the

t-shirts have vampire bats on the front and rear, and that's where I get

them. A lot of people think that vampire bats suck blood, but instead they

bite, and then lap up the blood. The " Bite Me " t-shirts hardly cause a

stir among cavers, but other folks are either curious about them and ask me

stuff or they wind up taking great offense. Either way, I find the

reactions entertaining. It's about as good an example of " simple pleasures

for simple minds " that I can come up with right now. I take great pleasure

in them. Y'all can conclude what you want about my mind.

>Galen:

>

>It is nice when you come to visit, please do it more often, I miss your

>words of wisdom. How is you summer going? haveyou bought any new

>t-shirts lately??

>

>Rita

>

>Luv & Hugs!

Galen Hekhuis NpD, JFR, GWA ghekhuis@...

They killed his mother, they burned his forest, he's back, and he's pissed

Bambo!

[Guest guest]

Dear Shirley,

I too am 48, my husband is 69, soon to be 49 and 70.

I want the hugs but sometimes pullback, not because I

don't want them, but because I don't feel like an

object of romantic interests with my cane and all.

(my husband is Mr. Romantic and walks (hikes) with our

black lab, Duke, 2 miles at least per day) I wish I

had more energy to feel more romantic. BUT, I must

say, my husbands desires, carried out or just an

expression, mean much more to me than anything. I

know sometimes he may be put off because of my

attitude. It is more of the feeling I have about ME

than the feelings I have about him. I don't quite

know if I am saying this right. I hope you understand

what it is I am trying to say.

Thomson

--- grammyflanagan@... wrote:

> Hi ,

> I understand your anger. I to am angry but I am

> on the other end of this

> situation. I have a husband that has PLS and I care

> for him. It is just so

> hard sometimes wonder if I can stay much longer. We

> have been married for 25

> years and have 5 kids. But I don't get the hugs and

> affection any more so

> hard for him to do with his canes and all. Or maybe

> just don't want to try

> this is what I don't know. I don't want to put

> pressure on him to do things

> he can't do. But I am only 48 and feel I have a lot

> of life left to live. So

> what do you do? If anyone has an answer please let

> me know. Thanks in advance

> Shirley

>

=====

Thomson, Solana Beach, CA

www.geocities.com/mdmfoo/pls.html

__________________________________________________

[Guest guest]

Hi Rita,

I hear you saying that maybe before PLS you didn't

quite appreciate what life was offering you?

Sometimes I feel like that. That I didn't quite

appreciate all the good things life had to offer. And

now I do appreciate these things more than I ever

could have before.

I was trying to tell my sister that PLS was like

winning the lottery. The chances are very slim. But

when you find out it is PLS (not ALS), you feel like

you won the lottery! Life is strange. I wouldn't

trade it for anything. Even if PLS does suck (as Mark

Weber has put it so eloquently).

--- ritadfromhollis@... wrote:

> :

>

> God Bless you sweetie! I feel the same way, I have

> had a better life

> with PLS than when I didn't have it.

>

> Good for you!

>

> Rita

>

> Luv & Hugs!

>

>

>

>

> *************************************

> Some people succeed in spite of their handicap.

> Others succeed because

> of them.

>

>

=====

Thomson, Solana Beach, CA

www.geocities.com/mdmfoo/pls.html

__________________________________________________

[Guest guest]

Some days I guess you could say I'm angry, but other days I'm certainly

not. I wouldn't wish living with a gimp on anyone, and I certainly don't

blame anyone for moving on. It's a mixed bag. When I'm feeling

magnanimous and big hearted, I figure it is the best thing for her. When

I'm feeling small and petty I like to whine about it. Either way, it isn't

much fun. Do what is best for you, after all, you are the one who has to

live with yourself. I wouldn't blame you no matter what you do. Some

things just suck.

" Ah Love, coulds't Thou and I with Fate conspire,

To change this sorry Scheme of Things entire,

Would not We shatter it to bits

And then remold it nearer to the Heart's desire? "

-- The Rubaiyat of Khayyam

As translated by

Fitzgerald

>thanks for the info sorry you are so angry but not sure what I will do. Just

>wish vows would had said in pls or health maybe I would have thought harder.

>I don't blame him but I also don't blame me this is a hard time thank you

>Shirley

Galen Hekhuis NpD, JFR, GWA ghekhuis@...

They killed his mother, they burned his forest, he's back, and he's pissed

Bambo!

[Guest guest]

Hi Shirley,

Call me anytime you want to talk. I'm

here for you.

--- grammyflanagan@... wrote:

> Hi

> Not sure what that all meant but I think I got

> the jest of it. My husband

> walks with 2 canes and uses a wheelchair for work.

> He never approaches me in

> any manner has been maybe in 3 years. I don't

> approach him as I am not sure

> what his response would be I wish I knew but do not

> want to put any undo

> stress on him. I feel he gives me what he can and

> that should be good enough

> but sometimes it is just so lonely. He a lot of

> times don't even come to bed

> at night just sleeps in the lift chair. Sometimes he

> has bowl and bladder

> accidents and that bothers me also. Have to always

> cut his food will as he

> may choke if I don't. So I am just going to get on

> with my counseling and

> find what will work best for us. Thanks so much for

> your understanding Shirley

>

>

=====

Thomson, Solana Beach, CA

www.geocities.com/mdmfoo/pls.html

__________________________________________________

[Guest guest]

:

Gosh , enjoy that man!!!! It sounds like he loves you no matter

what, and doesn't even see anything different about

you than the woman he married. You are lucky to be the object of his love

interest. Having recently lost the man I thought I would spend the rest of

my life with (to another woman), I would love to be hugged, and have a

romantic man around. I envy you.

I am doing fine by myself, and enjoy the quiet, privacy, and freedom that I

have never had in my life, but it is certainly different, and if I had a

choice, it wouldn't be this way. I hope you will treasure that man, and he

enjoy the romance that you have to give in return.

Sorry if I sound like I am sermonizing again. Take care and God bless.

Amen,

Laurel

Re: Newcomer

> Dear Shirley,

> I too am 48, my husband is 69, soon to be 49 and 70.

> I want the hugs but sometimes pullback, not because I

> don't want them, but because I don't feel like an

> object of romantic interests with my cane and all.

> (my husband is Mr. Romantic and walks (hikes) with our

> black lab, Duke, 2 miles at least per day) I wish I

> had more energy to feel more romantic. BUT, I must

> say, my husbands desires, carried out or just an

> expression, mean much more to me than anything. I

> know sometimes he may be put off because of my

> attitude. It is more of the feeling I have about ME

> than the feelings I have about him. I don't quite

> know if I am saying this right. I hope you understand

> what it is I am trying to say.

> Thomson

> --- grammyflanagan@... wrote:

> > Hi ,

> > I understand your anger. I to am angry but I am

> > on the other end of this

> > situation. I have a husband that has PLS and I care

> > for him. It is just so

> > hard sometimes wonder if I can stay much longer. We

> > have been married for 25

> > years and have 5 kids. But I don't get the hugs and

> > affection any more so

> > hard for him to do with his canes and all. Or maybe

> > just don't want to try

> > this is what I don't know. I don't want to put

> > pressure on him to do things

> > he can't do. But I am only 48 and feel I have a lot

> > of life left to live. So

> > what do you do? If anyone has an answer please let

> > me know. Thanks in advance

> > Shirley

> >

>

>

> =====

> Thomson, Solana Beach, CA

> www.geocities.com/mdmfoo/pls.html

>

> __________________________________________________

>

[Guest guest]

Laurel, Your tattoo sounds beautiful. I hope I can stand the pain,

everyone says they do hurt. Thank you, take care , B. Oregon

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[Guest guest]

Rita, Thank You. B. Oregon

________________________________________________________________

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