Re: married?

[Guest guest]

>The factis that there are both men and women out there who can look beyond

a

wheelchair and get to know a person for who they are.

I agree completely, Tom.

L

Re: Re: married?

There's always hope, even though I was starting to wonder. My perception

has always been that the man was supposed to be the provider and protector,

so the typical woman wouldn't see me as a suitable mate. There are valid

arguments for both sides, but being a man, thats the way I saw it. The fact

is that there are both men and women out there who can look beyond a

wheelchair and get to know a person for who they are.

Tom

Re: Re: married?

>

>

> I have had a girlfriend for about 7 months now, the first in about 8

years.

> Helluva dry spell, huh? I was engaged before but that fell apart. My

> current girlfriend used to work as a PA long before I knew her. She

didn't

> tell me at first because she didn't want me to think she was just

interested

> in me in that way.

> Tom

>

> > I haven't caught up on this marriage discussion yet. So, I may have the

> > answer to this question later without a response to my question. But in

> > reading the topic of marriage, I have noticed something. There are a

fair

> > number of married women and women with boyfriends, but no talk of guys

> > talking about girlfriends or wives. So, is it more difficult for

disabled

> > men to find a partner? I am curious, because I have never had luck.

> >

>

>

>

>

[Guest guest]

Actually, I think girls do the same thing too. I've probably missed a

few good relationships thinking the " nice guy " was just " taking pity "

on me.

> That's a good point , my girlfriend has that personality and always

> goes out of her way to make sure I'm comfortable. One of my

problems in the

> past was my own attitude. I considered myself undesirable. Any

affection I

> would get I would pass off as pity. So there may have been

opportunities

> that I was too thickheaded to pick up on!

>

[Guest guest]

Steff -

Well, as you can imagine, I found the whole situation disturbing

myself. It's not just me. I have a friend that's a fairly healthy

quad that was advised to go the abortion route as well. In fact, most

of the parents I know with disabilities in the US have had pretty

negative experiences with the medical professionals. All I'm saying

is that you have to search for the doctor or OB/GYN that is going to

work with you as a viable potential parent. Fortunately, it sounds

like you have a good dr. I was not nearly so lucky with my 1st

pregnancy. Maybe Canada's more enlightened?

> > i wanna get married of course.....like anyone else........how did you

> > guys configure such a thing????? i need some advice!

>

>

>

>

[Guest guest]

" However, there are numerous women on this

list who have met someone and I can come up with at least 2 other couples

where the woman is disabled, but the man is not. And, that is only in the

circle of disabled people I know, which is about 80% men, 20% women. So, it

seems disproportionate. Could it be traditional society values that still

are present underneath despite the clear changes that have occurred on the

surface of Western culture? "

Hi,

Well, I don't know really... Those are pretty valid arguments and I guess nobody

can be neither right or wrong about this.

But, I still do think that it is easier for disabled men to find partners,

because of my own experiences. From the way my current situation is, it seems

that I will never find the right guy and probably I will never get married.

Hopefully, I'm wrong, but I'm afraid I'm not...

Yes, it could be the traditional society values, like the man has to be the

strong one and protective of the family, but the traditional values can also

mean that men usually want active, agile and busy women to take care of the

house, kids and lots of other family matters, which also includes themselves in

a big way. Ok, maybe I'm missing the point, but I have to agree with this person

who wrote that women usually seem to go pass the physical looks of a man more

easily. It's true.

And also the fact that you see so many women with partners on this list, could

be because women are mostly talking on this list and they are by far most active

here...And it's really strange about this group, but there are so many girls

with SMA here who have their disabled brothers, but I don't see their brothers

ever talking here. I have a disabled brother, but he doesn't want to talk about

his disability problems here, even though I suggested him to do it, a few times

And again I have to agree with someone here who said that women seem to be

more opened about their disability... In my opinion, it seems to be the only

explanation for this...

That's all for now )

Best wishes,

Radmy

[Guest guest]

In my phd research, I have found that men with disabilitiies have a harder

time than women finding partners.

Re: married?

I am married and we will be celebrating Our 18th Wedding Anniversary

on August 24th.

I was diagnosed with SMA Adult Form/Onset 2 month before Our 2nd

Wedding Anniversary.

[Guest guest]

Have any of you heard of the group Through the Looking Glass? It's a group

that helps disabled parents and their children. They have numerous

resources, adaptations, etc. Many of the people who work there have

disabilities and children themselves. They are on the web at

www.lookingglass.org/

There is support, even if there is still a lot of ignorance.

Beth T. the OT

Re: married?

Steff -

Well, as you can imagine, I found the whole situation disturbing

myself. It's not just me. I have a friend that's a fairly healthy

quad that was advised to go the abortion route as well. In fact, most

of the parents I know with disabilities in the US have had pretty

negative experiences with the medical professionals. All I'm saying

is that you have to search for the doctor or OB/GYN that is going to

work with you as a viable potential parent. Fortunately, it sounds

like you have a good dr. I was not nearly so lucky with my 1st

pregnancy. Maybe Canada's more enlightened?

> > i wanna get married of course.....like anyone else........how did you

> > guys configure such a thing????? i need some advice!

>

>

>

>

[Guest guest]

I have to agree with on this. Just from all the disabled people I

know, the disabled women have found partners more often than the guys.

Hmm...why?? Not sure.

Lori

Re: married?

I am married and we will be celebrating Our 18th Wedding Anniversary

on August 24th.

I was diagnosed with SMA Adult Form/Onset 2 month before Our 2nd

Wedding Anniversary.

[Guest guest]

Are your findings based in the U.S., certain states etc.?

What age groups did you look at?

What types of disabilities did you survey, physical, emotional, hard of

hearing and deaf? Who did you include?

Re: married?

I am married and we will be celebrating Our 18th Wedding Anniversary on

August 24th. I was diagnosed with SMA Adult Form/Onset 2 month before

Our 2nd Wedding Anniversary.

[Guest guest]

Are your findings based in the U.S., certain states etc.?

US and world wide.

What age groups did you look at?

18-69yrs

What types of disabilities did you survey, physical, emotional, hard of

hearing and deaf?

Physical only

Re: married?

I am married and we will be celebrating Our 18th Wedding Anniversary on

August 24th. I was diagnosed with SMA Adult Form/Onset 2 month before

Our 2nd Wedding Anniversary.

[Guest guest]

In a message dated 8/19/02 2:30:16 PM Eastern Daylight Time, mhe@...

writes:

> This past year at the conference I had a chance to

> talk to Amy for quite a bit.

Is there a way to contact her?

~s, GRADUATE of Class 2002~

" Challenges are what make life interesting; overcoming them is what makes l

ife meaningful. "

- J. Marine

[Guest guest]

I was there that year. This past year at the conference I had a chance to

talk to Amy for quite a bit. She is actually a type 1 - albeit very

strong. She never sat, but she still is able to eat without a g-tube. She

said that she was in better health during the pregnancy than she had been

in a very long time. She has better lung capacity afterwards as well. She

said the doctors speculated that the pregnancy straightened out her spine

which allowed her to breathe better. The only complication she encountered

was that they weren't able to place an epidural or spinal block and had to

do the c-section under general anesthesia.

At 05:25 PM 8/17/02 -0500, you wrote:

>Was anyone here at the FSMA conference in Chicago in 2001? There was a

>woman on one of the panels (I think her name was Amy) who was married and

>had a daughter. Her husband and daughter were both at the conference with

>her. From what I remember, she had type II. She finally found a doctor

>willing to follow her pregnancy and it was video taped and archived at a

>major hospital (don't remember which one). She said her breathing actually

>got better as she went further along into her pregnancy. She said she

>thought that the baby helped to lift her up. She had scoliosis. Her

>doctors delivered her daughter by c-section with no complications.

>

>I don't remember all of the details of it, but from what I do remember it

>sounded like she did fine. Does anyone else remember her or know her?

>

>

> Re: Re: married?

>

>

> In a message dated 8/17/2002 3:55:41 PM Central Daylight Time,

> codemann@... writes:

>

>

> > You should note, not all sma ladies can have a baby. If your anatomy is

> > compromised in anyway, pregnancy would not be advised. As a it may be

> > impossible to carry the child thru. Correct me if I'm wrong...

> >

>

> You're correct. I've never heard of a woman with SMA I/II surviving

> pregnancy and/or not losing their baby.

>

> -Amy

>

>

>

[Guest guest]

I'll send you her e-mail addy offlist. I don't think she'd mind.

At 02:34 PM 8/19/02 -0400, you wrote:

>In a message dated 8/19/02 2:30:16 PM Eastern Daylight Time, mhe@...

>writes:

>

>

> > This past year at the conference I had a chance to

> > talk to Amy for quite a bit.

>

>Is there a way to contact her?

>~s, GRADUATE of Class 2002~

>

> " Challenges are what make life interesting; overcoming them is what makes l

>ife meaningful. "

>- J. Marine

>

>

>

>

>

>

>

>

>

[Guest guest]

Thanks for the extra info, (I wasn't sure if I remembered everything

right or not). Amy is such an amazing person. She has just stuck out in my

mind since the conference. I didn't get a chance to meet her in person, I

just listened to her on the panel. She had such an interesting, incredible

life story. Do you talk to her often? How is she doing?

(mom of Jensen, SMA II/III)

Re: Re: married?

>

>

> In a message dated 8/17/2002 3:55:41 PM Central Daylight Time,

> codemann@... writes:

>

>

> > You should note, not all sma ladies can have a baby. If your anatomy

is

> > compromised in anyway, pregnancy would not be advised. As a it may

be

> > impossible to carry the child thru. Correct me if I'm wrong...

> >

>

> You're correct. I've never heard of a woman with SMA I/II surviving

> pregnancy and/or not losing their baby.

>

> -Amy

>

>

>

[Guest guest]

I got married a bit over a month ago, the 6th of July )

(Got type 2)

Gunn aka Misty

[Guest guest]

Congratulations Misty!

*****

I got married a bit over a month ago, the 6th of July )

(Got type 2)

Gunn aka Misty

*****

Later,

Mike Briggs

Photo Gallery: http://www.pbase.com/photogrif/

" Fish Gotta Swim, I Gotta Dive "

[Guest guest]

She's part of another SMA list I'm on through smasupport.com She's doing

great, she's been a wealth of information when it comes to service dogs and

life in general. She probably sends something through once or twice a

week. I have told her she needs to get on this list too, she'd fit in

great here.

At 05:07 PM 8/19/02 -0500, you wrote:

>Thanks for the extra info, (I wasn't sure if I remembered everything

>right or not). Amy is such an amazing person. She has just stuck out in my

>mind since the conference. I didn't get a chance to meet her in person, I

>just listened to her on the panel. She had such an interesting, incredible

>life story. Do you talk to her often? How is she doing?

>

> (mom of Jensen, SMA II/III)

> Re: Re: married?

> >

> >

> > In a message dated 8/17/2002 3:55:41 PM Central Daylight Time,

> > codemann@... writes:

> >

> >

> > > You should note, not all sma ladies can have a baby. If your anatomy

>is

> > > compromised in anyway, pregnancy would not be advised. As a it may

>be

> > > impossible to carry the child thru. Correct me if I'm wrong...

> > >

> >

> > You're correct. I've never heard of a woman with SMA I/II surviving

> > pregnancy and/or not losing their baby.

> >

> > -Amy

> >

> >

> >

[Guest guest]

" Are your findings based in the U.S., certain states etc.?

US and world wide.

What age groups did you look at?

18-69yrs

What types of disabilities did you survey, physical, emotional, hard of

hearing and deaf?

Physical only "

This is very interesting to know. I was just wondering if I will get to see some

scientific poll research on the issue somewhere. So, it's great to know this. It

would be great if you could post the results in percentage?

Best wishes,

Radmy

[Guest guest]

Hello pickndaisies2002@...,

In reference to your comment:

è who here w/sma is married?

I am a 31 year old female with SMA Type 1 who has been married since 1998,

and we have a 3-year old daughter, le. I am also fairly new to the

list...just never got around to introducing myself. It's great to be here!

Amy M. Marquez

Carol Stream, Illinois

Families of Spinal Muscular Atrophy - Vice President Chicagoland Chapter

Spinal Muscular Atrophy (SMA) - Type 1

Mom to le - Born July 19, 1999

Ella - Active Service Dog

Colette - Retired Service Dog

[Guest guest]

We are Joe (SMA III; powerchair), 44 yrs old, and , 43 yrs old , in

Tampa, FL with three teenagers and a cat............

[Guest guest]

On 18 Aug 2002 at 1:54, nekrosys wrote:

> Actually, I think girls do the same thing too. I've probably missed a

> few good relationships thinking the " nice guy " was just " taking pity "

> on me.

I *always* used to think that and feel I didn't want to talk to them

just because they felt sorry for me. I lap it up now, it's an ego

boost having a guy offer to buy you a drink

TuftySue

[Guest guest]

On 20 Aug 2002 at 0:09, Gunn Aas wrote:

> I got married a bit over a month ago, the 6th of July )

Hey Gunn

Sorry I haven't been in touch for a while. How did things

go for your wedding and blessing? Have you got any photos?

I'd love to see Congratulationss too!

TuftySue

[Guest guest]

Hello blueyedaze@...,

In reference to your comment:

è I've never heard of a woman with SMA I/II surviving

è pregnancy and/or not losing their baby.

I have Type 1...I survived my pregnancy and so did my baby. In fact, all

doctors involved thought I'd be on a vent into my second trimester...never

happened. The pregnancy was uneventful.

Amy M. Marquez

Carol Stream, Illinois

Families of Spinal Muscular Atrophy - Vice President Chicagoland Chapter

Spinal Muscular Atrophy (SMA) - Type 1

Mom to le - Born July 19, 1999

Ella - Active Service Dog

Colette - Retired Service Dog

[Guest guest]

In a message dated 8/23/2002 10:14:34 PM Central Daylight Time,

Ames24@... writes:

> I have Type 1...I survived my pregnancy and so did my baby. In fact, all

> doctors involved thought I'd be on a vent into my second trimester...never

> happened. The pregnancy was uneventful.

>

What was your pre-pregnancy weight? How tall are you? Have you had a full

spinal fusion? How did you deliver your baby? I've found type 1, 2, 3 etc.

to mean NOTHING except a way to classify how long you'll supposedly live.

Your experience is definitely NOT the norm and in my uneducated opinion, pure

luck.

[Guest guest]

Happy Anniversary!

L

Re: married?

I am married and we will be celebrating Our 18th Wedding Anniversary

on August 24th.

I was diagnosed with SMA Adult Form/Onset 2 month before Our 2nd

Wedding Anniversary.

[Guest guest]

thanks so much for the Happy Anniversary Wishes

&

Those Two wrote: Happy Anniversary!

L

Re: married?

I am married and we will be celebrating Our 18th Wedding Anniversary

on August 24th.

I was diagnosed with SMA Adult Form/Onset 2 month before Our 2nd

Wedding Anniversary.