Re: married?

[Guest guest]

That is AMAZING, Amy! Just goes to show nobody (including all the docs)

knows it all.

Bettylou

> 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]

Shoot, I get that all the time from RELATIVES, and my wife of 16 years

can't convince most of them otherwise!

jv O ======---,-----,----,---,--,-, o

|--Q \ o

----\ \ o_

________ () ()\_ Fish to Live, Live to Fish -<_><

On Sat, 17 Aug 2002, Tom Shindle wrote:

> Yep, and I'm sure many people see a man in a wheelchair and assume that he

> can't perform at all to begin with. Again, ridiculous to assume.

> Tom

[Guest guest]

In a message dated 8/17/02 6:29:39 PM Eastern Daylight Time,

smamommy@... writes:

> 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?

>

>

>

Hi ,

You have a very good memory...I am the person from the panel. I had my

daughter in 1999 without complications, although the first hospital/team of

doctors advised me to have an abortion and were quite upset when I revealed

that I had sought out a second opinion. Just a slight correction, though...I

was diagnosed with Type 1, and many doctors have confirmed that diagnosis

since I have never sat up without assistance. The pregnancy and delivery were

filmed and are on file at Northwestern University in Chicago, Illinois. The

pulmonologist, Dr. Winslow, has also documented the case, and is

working with one of the medical journals to have it published. Also, I have

been approached by some magazine out of the Rehab Institute of Chicago,

through the recommendation of the medical team involved in the pregnancy and

delivery, to write a my perspective of the entire experience, and the doctors

will add their input when necessary.

Feel free to ask should you have any questions. I'd be glad to help in any

way I could.

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]

HOW WONDERFUL you are on here!!! I remember you SO well from the

conference. You just amazed me. Hopefully I'll get to meet you and talk to

you face-to-face someday. I'm really going to try to make the next FSMA

conference in DC, but it isn't looking good so far. Are you going to be

able to go to that one?

I really look forward to getting to know more about you now that I see you

are on the list.

Re: Re: married?

In a message dated 8/17/02 6:29:39 PM Eastern Daylight Time,

smamommy@... writes:

> 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?

>

>

>

Hi ,

You have a very good memory...I am the person from the panel. I had my

daughter in 1999 without complications, although the first hospital/team

of

doctors advised me to have an abortion and were quite upset when I

revealed

that I had sought out a second opinion. Just a slight correction,

though...I

was diagnosed with Type 1, and many doctors have confirmed that diagnosis

since I have never sat up without assistance. The pregnancy and delivery

were

filmed and are on file at Northwestern University in Chicago, Illinois.

The

pulmonologist, Dr. Winslow, has also documented the case, and is

working with one of the medical journals to have it published. Also, I

have

been approached by some magazine out of the Rehab Institute of Chicago,

through the recommendation of the medical team involved in the pregnancy

and

delivery, to write a my perspective of the entire experience, and the

doctors

will add their input when necessary.

Feel free to ask should you have any questions. I'd be glad to help in any

way I could.

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]

Thanks Sue, everything went great! Got a million photos, but not gotten

any scanned yet. I'll let you know when I do. The honeymoon in Ireland

was also great and almost everything went as planned (which isn't always

the case when you travel in a wheelchair as we all know).

If you want to expand your business after a while, I can be of help from

here!

Gunn (aka Misty)

[Guest guest]

Gunn, I want to see wedding pics too!! :-)

N.

On 8/25/02 5:13 PM, " Gunn Aas " <gunnaas@...> wrote:

> Thanks Sue, everything went great! Got a million photos, but not gotten

> any scanned yet. I'll let you know when I do. The honeymoon in Ireland

> was also great and almost everything went as planned (which isn't always

> the case when you travel in a wheelchair as we all know).

>

> If you want to expand your business after a while, I can be of help from

> here!

>

> Gunn (aka Misty)

>

>

[Guest guest]

hello amy

can you recommend any good sites or email lists re assistance dogs ?

i am thinking of getting a poodle pup and training it myself as to get a

trained one in the uk you seem to have to wait over a year or two, also they

only seem to provide larger dogs like labradors and i want a dog that would

be happy with going to the park 3 or 4 times a week. i have a front and

back garden

cheers

linda

Re: married?

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]

Hello blueyedaze@...,

In reference to your comment:

è What was your pre-pregnancy weight?  How tall are

è you?  Have you had a full spinal fusion?  How did you

è deliver your baby?

The doctors are not certain what my exact pre-pregnancy weight was, but it

was estimated at roughly 50 pounds. My weight was accurately taken when I was

eight to ten weeks pregnant (on a scale I drove up on, chair and all) and I

was like 54 pounds. Again, my exact height is near impossible to get due to

curvature and tightened knee muscles, but I'm between 5'4 " and 5'7 " ...based

on various sizes of clothes I've tried on. As you can assume, I have not had

a spinal fusion, nor do I have any kind of rods. I just never wanted to go

through the surgery.

le was born via c-section at 34 1/2 weeks gestation. Trust me, I

consider myself VERY lucky to be the age I am, still be in very good health,

and to have done all the things I have in life. Not a day goes by that I

don't realize just how lucky I am!

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]

On 26 Aug 2002 at 0:13, Gunn Aas wrote:

> Thanks Sue, everything went great! Got a million photos, but not gotten

> any scanned yet. I'll let you know when I do.

Great, I can't wait to see, I want to see your dress

> The honeymoon in Ireland

> was also great and almost everything went as planned (which isn't always

> the case when you travel in a wheelchair as we all know).

Brilliant! Was it just you and Andy or did you have assistant help

for when you needed it?

> If you want to expand your business after a while, I can be of help from

> here!

Thank you. Going International would be amazing!

TuftySue

[Guest guest]

Hello annaquay@...,

In reference to your comment:

è can you recommend any good sites or email lists re

è assistance dogs ?

Hi ,

I'm sorry...the only e-mail group/list that I know of pertaining to

assistance dogs is the one dedicated to Canine Companions for Independence. I

honestly do not know of any organizations that are willing to training an

existing pet, although there are some out there that do not breed their own

dogs. You may want to research organizations that train dogs from shelters,

etc. as they may be willing to help out. I do not know which do. If you are

interested, I can get you the information for the CCI listserver...just let

me know.

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

========Original Message========

Subj: Re: married?

Date: 8/27/02 9:22:25 PM Eastern Daylight Time

From: <A HREF= " mailto:annaquay@... " >annaquay@...</A>

Reply-to: <A

HREF= " mailto: " > </A>

<A HREF= " mailto: " > </A>

Sent from the Internet (Details)

hello amy

can you recommend any good sites or email lists re assistance dogs ?

i am thinking of getting a poodle pup and training it myself as to get a

trained one in the uk you seem to have to wait over a year or two, also they

only seem to provide larger dogs like labradors and i want a dog that would

be happy with going to the park 3 or 4 times a week. i have a front and

back garden

cheers

linda

Re: married?

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]

Andy will scan some pica asap so I'll let u know when there are some

around. My best friend (Anita if u remember her, Sue) came with us to

Ireland. That way I could get some extra help if I needed it, but I

didn't need to bring a PA. Besides, it worked out well cos she don't

mind at all going off on her own so Andy & I got all the time we wanted

on our own.

Gunn (aka Misty)

[Guest guest]

On 2 Sep 2002 at 23:39, Gunn Aas wrote:

> Andy will scan some pica asap so I'll let u know when there are some

> around. My best friend (Anita if u remember her, Sue) came with us to

> Ireland. That way I could get some extra help if I needed it, but I

> didn't need to bring a PA. Besides, it worked out well cos she don't

> mind at all going off on her own so Andy & I got all the time we wanted

> on our own.

Hi Gunn

Yeah, I remember Anita, she's lovely. I'm glad you had the help

if you needed it. It's always difficult to get new PA's to

disappear without them taking it personally.

TuftySue

[Guest guest]

Hi i have just reread your letter and to be honest yes it is normaly if you can

actually callit that for the man to be the bread winner ect but in this day and

age anything goes and its a good job to as i dont think it matters who earns the

money or who carrys the shopping in or who decorates ect its how we treat each

other if you9 love and respect care and adore ) the person you are with thats

all that counts or matters and i can safely say my boyfriend does all the things

in brackets and i feel exactly the same feelings for him ,he also has sma type2.

So there is someone there for you maybe its looking in the right place who knows

,but please dont give up and keep an open mind because when you do find that

special person you will end up driving them away because they will not be sure

how you truely feel.

Good Luck

Sonya

Tom Shindle <tshindle@...> wrote: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]

I just wanted to say that we know of 2 men that are quadriplegics. One

graduated with my husband, he got married long after his accident and now

has a child that is about 5. (I have no idea how they did it, all I know is

that the child is his). Another friend of ours has just announced his

engagement to his girlfriend. They started dating long after his accident.

Just wanted to let you know that it does happen for the men too.

Both of these women, by the way, are attractive, genuinely decent people.

Loving their men for who they are.

Susi

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.

> > >

> >

> >

> >

> >