Re: Re: Sexual Dysfunction

[Guest guest]

Sally,

I sent my message to before I read yours. Mine wasn't needed. You

have a good grasp on the situation and used words much better than I did.

You gave a great response! Especially about letting PLS strengthen us and

open new doors for us. What a great attitude! I also liked the comment

about visiting the "dark room" when we have negative feelings, but not

to "move in!" nne on's (or . I can't remember

either.) Thanks for your excellent reply. Mike Gray

sally b walters wrote:

-

I'm no longer married, but we all struggle with

relationships at one

time or another. Maybe your wife is angry, frustrated, scared;

all

things that I'm sure you've experienced since your diagnosis.

I'm glad

that you're both going to a psyche to talk about things.

You need to

keep the lines of communication open, and sometimes that's hard

to do.

It just takes one person to open the door. I'd like to recommend

to you

the book: Return To Love by nne on. (It could

be ,

my brain's fuzzy!) I listened to the audio tape version and found

it

interesting, insightful and helpful. There are several sections

that I

think would apply to you.

As far as doing things with your spouse,

there are tons of things

that you can do together, you just need to be creative. Enlist

your

daughters help in setting up a romantic candle light dinner at

home. The

girls can help cook, or if your 16-year-old can drive she can go

pick up

a meal from a restaurant and then you can transfer it to your "fine

china." Sure, we've all had to slow down a little,

but that doesn't

mean we need to stop living.

If your daughter can drive, how about

taking 2 cars to the

equestrian events, and when you get exhausted she can bring you

home.

You don't have to go every time, a couple here and there.

YOur daughter

can help you navigate if you need it, plus you'll get to spend

some

quallity time with each other!

We can let PLS conquer us and dictate

who and what we are, OR we can

let it strengthen us and open new doors and adventures. It's

ok to go to

what I call the "dark room" for a while when we're frustrated,

angry,sad....but DO NOT MOVE IN!!

Keep those lines of communication open.

Hope this will help.

OH! I almost forgot.......handy man stuff. Hire one!

Don't let

"stubborn pride" get in the way (easy for ME to say! ha!)

Or ask

friends, folks from community, etc. THe hardest thing for

me to do was

to ask.

We're all pulling for you!

Sally

[Guest guest]

Hey guys, we're all human and struggle with many things, PLS or not!

I'm learning as I go along. We can learn something from EVERY response.

I've had so much fun today talking to all of you! I feel like, heck,

I can't think of anything cheesey to say......I must be pooped!

Tomarrow we all have a new chance for everything!

TTFN (Ta-ta For Now)

Sally

On Sun, 02 Apr 2000 19:56:19 -0500 Mike Gray writes:

>Sally,

>

>I sent my message to before I read yours. Mine wasn't needed.

>You

>have a good grasp on the situation and used words much better than I

>did. You gave a great response! Especially about letting PLS

>strengthen

>us and open new doors for us. What a great attitude! I also liked the

>comment about visiting the " dark room " when we have negative

>feelings,

>but not to " move in! " nne on's (or . I can't

>remember either.) Thanks for your excellent reply. Mike Gray

>

>sally b walters wrote:

>

>> -

>> I'm no longer married, but we all struggle with relationships

>at

>> one

>> time or another. Maybe your wife is angry, frustrated, scared; all

>> things that I'm sure you've experienced since your diagnosis. I'm

>> glad

>> that you're both going to a psyche to talk about things. You need

>to

>> keep the lines of communication open, and sometimes that's hard to

>do.

>>

>> It just takes one person to open the door. I'd like to recommend

>to

>> you

>> the book: Return To Love by nne on. (It could be

>> ,

>> my brain's fuzzy!) I listened to the audio tape version and found

>it

>> interesting, insightful and helpful. There are several sections

>that

>> I

>> think would apply to you.

>> As far as doing things with your spouse, there are tons of

>things

>>

>> that you can do together, you just need to be creative. Enlist

>your

>> daughters help in setting up a romantic candle light dinner at

>home.

>> The

>> girls can help cook, or if your 16-year-old can drive she can go

>pick

>> up

>> a meal from a restaurant and then you can transfer it to your " fine

>> china. " Sure, we've all had to slow down a little, but that

>doesn't

>> mean we need to stop living.

>> If your daughter can drive, how about taking 2 cars to the

>> equestrian events, and when you get exhausted she can bring you

>home.

>> You don't have to go every time, a couple here and there. YOur

>> daughter

>> can help you navigate if you need it, plus you'll get to spend some

>> quallity time with each other!

>> We can let PLS conquer us and dictate who and what we are, OR

>we

>> can

>> let it strengthen us and open new doors and adventures. It's ok to

>go

>> to

>> what I call the " dark room " for a while when we're frustrated,

>> angry,sad....but DO NOT MOVE IN!!

>> Keep those lines of communication open.

>> Hope this will help.

>> OH! I almost forgot.......handy man stuff. Hire one! Don't let

>> " stubborn pride " get in the way (easy for ME to say! ha!) Or ask

>> friends, folks from community, etc. THe hardest thing for me to do

>> was

>> to ask.

>> We're all pulling for you!

>> Sally

>>

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

>>

>>

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

>>

[Guest guest]

ttfn must be a wisconsin thing. i almost closed with that in last mail.

kathy

sally b walters wrote:

> Hey guys, we're all human and struggle with many things, PLS or not!

> I'm learning as I go along. We can learn something from EVERY response.

>

> I've had so much fun today talking to all of you! I feel like, heck,

> I can't think of anything cheesey to say......I must be pooped!

> Tomarrow we all have a new chance for everything!

> TTFN (Ta-ta For Now)

> Sally

>

> On Sun, 02 Apr 2000 19:56:19 -0500 Mike Gray writes:

> >Sally,

> >

> >I sent my message to before I read yours. Mine wasn't needed.

> >You

> >have a good grasp on the situation and used words much better than I

> >did. You gave a great response! Especially about letting PLS

> >strengthen

> >us and open new doors for us. What a great attitude! I also liked the

> >comment about visiting the " dark room " when we have negative

> >feelings,

> >but not to " move in! " nne on's (or . I can't

> >remember either.) Thanks for your excellent reply. Mike Gray

> >

> >sally b walters wrote:

> >

> >> -

> >> I'm no longer married, but we all struggle with relationships

> >at

> >> one

> >> time or another. Maybe your wife is angry, frustrated, scared; all

> >> things that I'm sure you've experienced since your diagnosis. I'm

> >> glad

> >> that you're both going to a psyche to talk about things. You need

> >to

> >> keep the lines of communication open, and sometimes that's hard to

> >do.

> >>

> >> It just takes one person to open the door. I'd like to recommend

> >to

> >> you

> >> the book: Return To Love by nne on. (It could be

> >> ,

> >> my brain's fuzzy!) I listened to the audio tape version and found

> >it

> >> interesting, insightful and helpful. There are several sections

> >that

> >> I

> >> think would apply to you.

> >> As far as doing things with your spouse, there are tons of

> >things

> >>

> >> that you can do together, you just need to be creative. Enlist

> >your

> >> daughters help in setting up a romantic candle light dinner at

> >home.

> >> The

> >> girls can help cook, or if your 16-year-old can drive she can go

> >pick

> >> up

> >> a meal from a restaurant and then you can transfer it to your " fine

> >> china. " Sure, we've all had to slow down a little, but that

> >doesn't

> >> mean we need to stop living.

> >> If your daughter can drive, how about taking 2 cars to the

> >> equestrian events, and when you get exhausted she can bring you

> >home.

> >> You don't have to go every time, a couple here and there. YOur

> >> daughter

> >> can help you navigate if you need it, plus you'll get to spend some

> >> quallity time with each other!

> >> We can let PLS conquer us and dictate who and what we are, OR

> >we

> >> can

> >> let it strengthen us and open new doors and adventures. It's ok to

> >go

> >> to

> >> what I call the " dark room " for a while when we're frustrated,

> >> angry,sad....but DO NOT MOVE IN!!

> >> Keep those lines of communication open.

> >> Hope this will help.

> >> OH! I almost forgot.......handy man stuff. Hire one! Don't let

> >> " stubborn pride " get in the way (easy for ME to say! ha!) Or ask

> >> friends, folks from community, etc. THe hardest thing for me to do

> >> was

> >> to ask.

> >> We're all pulling for you!

> >> Sally

> >>

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

> >>

> >>

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

> >>

>

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

> Get a NextCard Visa, in 30 seconds!

> 1. Fill in the brief application

> 2. Receive approval decision within 30 seconds

> 3. Get rates as low as 2.9% Intro or 9.9% Fixed APR

> Apply NOW!

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

[Guest guest]

i also think that the responses have been great. makes me wish i hadn't

let so much of the negitive in me out. i guess i was more hurt than i thought.

i am still glad i left though as my life has been much, much better.

kathy

Mike Gray wrote:

Sally,

I sent my message to before I read yours. Mine wasn't needed. You

have a good grasp on the situation and used words much better than I did.

You gave a great response! Especially about letting PLS strengthen us and

open new doors for us. What a great attitude! I also liked the comment

about visiting the "dark room" when we have negative feelings, but not

to "move in!" nne on's (or . I can't remember

either.) Thanks for your excellent reply. Mike Gray

sally b walters wrote:

-

I'm no longer married, but we all struggle with

relationships at one

time or another. Maybe your wife is angry, frustrated, scared;

all

things that I'm sure you've experienced since your diagnosis.

I'm glad

that you're both going to a psyche to talk about things.

You need to

keep the lines of communication open, and sometimes that's hard

to do.

It just takes one person to open the door. I'd like to recommend

to you

the book: Return To Love by nne on. (It could

be ,

my brain's fuzzy!) I listened to the audio tape version and found

it

interesting, insightful and helpful. There are several sections

that I

think would apply to you.

As far as doing things with your spouse,

there are tons of things

that you can do together, you just need to be creative. Enlist

your

daughters help in setting up a romantic candle light dinner at

home. The

girls can help cook, or if your 16-year-old can drive she can go

pick up

a meal from a restaurant and then you can transfer it to your "fine

china." Sure, we've all had to slow down a little,

but that doesn't

mean we need to stop living.

If your daughter can drive, how about

taking 2 cars to the

equestrian events, and when you get exhausted she can bring you

home.

You don't have to go every time, a couple here and there.

YOur daughter

can help you navigate if you need it, plus you'll get to spend

some

quallity time with each other!

We can let PLS conquer us and dictate

who and what we are, OR we can

let it strengthen us and open new doors and adventures. It's

ok to go to

what I call the "dark room" for a while when we're frustrated,

angry,sad....but DO NOT MOVE IN!!

Keep those lines of communication open.

Hope this will help.

OH! I almost forgot.......handy man stuff. Hire one!

Don't let

"stubborn pride" get in the way (easy for ME to say! ha!)

Or ask

friends, folks from community, etc. THe hardest thing for

me to do was

to ask.

We're all pulling for you!

Sally

[Guest guest]

:

I have read and reread your letter a dozen times. And there has been

many times over the past 20 years that I have asked myself " why me? " &

and " why have I had this disease with such slow progression " ? (I can

never remember if puncation's go inside or outside the quotation marks).

I am not a college graduate, and don't know a lot of fancy words. I am

just a 64 year old grandma who only has experience, so let me share my

feelings with you, I will try not to ramble & keep it brief, and for me

that is difficult.

I have always said, we get so wrapped up in ourselves, that we forget

that our spouses are victims. When & I were reading your letter, I

asked him " if he still worries about me, even in the safe environment of

this handicapped apartment " , and he said he hates to go off and leave me

alone for fear of me falling.

He puts so much stress on himself, worrying about me, and he shouldn't.

but he does.

In the beginning it was me who really had the problem, which made it

worse for him. I wanted to die, could not understand why he wanted to

stay with me, I was such a klutz, I felt that he was being cheated out

of a life he earned and deserved as a good husband, father & provider.

All he said to me was " for better or for worse, and in sickness and in

health " , we take our marriage vows very seriously. I have given him

many reasons with my lousy attitude over the years, to pack his bags &

take off. I will never will forget the day he said " I wish I were

dead " . He was trying everything to help me and my life easier, but I

could not see it at the time, all I thought about was " me " . I went to

counselling and fixed me, and by golly, we are just fine now. I use to

wonder how he could be still attractive to a fat (almost 200 pounds)

person who stumbled and fell at the drop of a hat. But he has this

unconditional love for me (need a tissue LOL). So now I do my thing,

and let him do for me what ever he wants. No, we can't do the things

together physically, but we play cards, do flea markets together, we

cook together, (I let him cleanup the mess), take rides, go out to

dinner and what ever appeals to us both.

By fixing " me " , the situation between us got better. I can't imagine

what it is like to be the bread winner in the family, and to have to

depend on your spouse to take over. But it's part of having any disease

(and thank God it's PLS, we could be a lot worse off). I am starting to

babble, but I hope you get something out of all of this.

Hang in there, anytime you want to share, I am here.

Good luck!

Rita

PS - I have lost 30 pounds and looking pretty good!!!

[Guest guest]

,

When you see your nero ask him a prescription for detrol (badder control) I

take two

tablets a day one in the morning and one before bedtime 2mg. It has helped me

Flora/St Pete Fl

[Guest guest]

you are talking about the same problems i had. the fatigue and weakness

always won out. i think that it is also important to have a mate that can be

at least a little sensitive to the situation. this unfortunately wasn't the

case for me. my bladder problem got worse as the years went by and i now

have a supra pubic which at this point in my life is great. no more trying

to 'race' to the bathroom (a race i usually lost). i have a urologist for

the bladder stuff. the first thing he had me do was stop all caffine and

carbonated beverages. gee, no sex, no coffee, no soda, no chocolate (it has

caffine in it)! so, what's left. (that is my attempt at humor) some friends

of mine (they are a married couple)are dealing with a sexual dysfunction on

his part (neither has a disability) and they 'doing fine' so far - very

creative thinking, i guess. i will ask if anyone wants me to. anyway there

has to be alternatives.

later.........................kathy

rmdelore@... wrote:

> Group:

>

> I'm glad that this topic was brought forward. I have lower torso,

> pelvic and leg weakness and fatigue. I can't say that there is

> anything abnormal with my libido. I have the desire, but muscle

> fatigue and weakness seems to cause me problems in being successful.

> This problem has been occuring since last year. It's been hard on my

> ego and self-esteem. It also seems that I have less sensitivity than

> normal which also causes some problems. I found that I have been more

> avoidant of sexual encounters and my relationship with my mate only

> because I fear not being successful...

>

> Along with the sexual problem I've had more spasticity in my

> bladder...or rather, sphincter control. Seems that I'm beginning to

> dribble and have a need to run to the bathroom every hour. I've

> reduced my coffee intake and this seems to help somewhat but does not

> resolve the problem.

>

> Anyway, I'm glad this topic has been addressed. I have not discussed

> these problems with my neurologist. I've been too embarrassed by it.

> Thank you for helping me feel as if I'm not alone in this.

>

>

>

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

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[Guest guest]

Kathy and Sally,

ttfn is a Tigger thing. From Walt Disney's Winnie the Pooh. Tigger is

always saying ttfn. Has been for years. I read it to my now 31 yr old daughter

and have read it to her now 7 yr old daughter and to all three of my sons,

the youngest is almost 9. Good books with some rather profound things to

say, even if they are "children's books."

Mike Gray

Kathy Hillary wrote:

ttfn must be a wisconsin thing. i almost closed

with that in last mail.

kathy

sally b walters wrote:

> Hey guys, we're all human and struggle with

many things, PLS or not!

> I'm learning as I go along. We can learn something from

EVERY response.

>

> I've had so much fun today talking to

all of you! I feel like, heck,

> I can't think of anything cheesey to say......I must be pooped!

> Tomarrow we all have a new chance for

everything!

> TTFN (Ta-ta For Now)

> Sally

>

> On Sun, 02 Apr 2000 19:56:19 -0500 Mike Gray

writes:

> >Sally,

> >

> >I sent my message to before I read yours. Mine wasn't needed.

> >You

> >have a good grasp on the situation and used words much better

than I

> >did. You gave a great response! Especially about letting PLS

> >strengthen

> >us and open new doors for us. What a great attitude! I also

liked the

> >comment about visiting the "dark room" when we have negative

> >feelings,

> >but not to "move in!" nne on's (or .

I can't

> >remember either.) Thanks for your excellent reply. Mike

Gray

> >

> >sally b walters wrote:

> >

> >> -

> >> I'm no longer married, but we all

struggle with relationships

> >at

> >> one

> >> time or another. Maybe your wife is angry, frustrated,

scared; all

> >> things that I'm sure you've experienced since your diagnosis.

I'm

> >> glad

> >> that you're both going to a psyche to talk about things.

You need

> >to

> >> keep the lines of communication open, and sometimes that's

hard to

> >do.

> >>

> >> It just takes one person to open the door. I'd like

to recommend

> >to

> >> you

> >> the book: Return To Love by nne on. (It

could be

> >> ,

> >> my brain's fuzzy!) I listened to the audio tape version and

found

> >it

> >> interesting, insightful and helpful. There are several

sections

> >that

> >> I

> >> think would apply to you.

> >> As far as doing things with

your spouse, there are tons of

> >things

> >>

> >> that you can do together, you just need to be creative.

Enlist

> >your

> >> daughters help in setting up a romantic candle light dinner

at

> >home.

> >> The

> >> girls can help cook, or if your 16-year-old can drive she

can go

> >pick

> >> up

> >> a meal from a restaurant and then you can transfer it to your

"fine

> >> china." Sure, we've all had to slow down a little,

but that

> >doesn't

> >> mean we need to stop living.

> >> If your daughter can drive,

how about taking 2 cars to the

> >> equestrian events, and when you get exhausted she can bring

you

> >home.

> >> You don't have to go every time, a couple here and there.

YOur

> >> daughter

> >> can help you navigate if you need it, plus you'll get to spend

some

> >> quallity time with each other!

> >> We can let PLS conquer us and

dictate who and what we are, OR

> >we

> >> can

> >> let it strengthen us and open new doors and adventures.

It's ok to

> >go

> >> to

> >> what I call the "dark room" for a while when we're frustrated,

> >> angry,sad....but DO NOT MOVE IN!!

> >> Keep those lines of communication

open.

> >> Hope this will help.

> >> OH! I almost forgot.......handy man stuff. Hire

one! Don't let

> >> "stubborn pride" get in the way (easy for ME to say! ha!)

Or ask

> >> friends, folks from community, etc. THe hardest thing

for me to do

> >> was

> >> to ask.

> >> We're all pulling for you!

> >> Sally

> >>

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

> >>

> >>

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

> >>

>

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

> Get a NextCard Visa, in 30 seconds!

> 1. Fill in the brief application

> 2. Receive approval decision within 30 seconds

> 3. Get rates as low as 2.9% Intro or 9.9% Fixed APR

> Apply NOW!

> http://click./1/975/7/_/532384/_/954726503/

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