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Thanks Martha, I have a stack of articles on

my desk a mile high (some I’ve had for a while, some newly acquired) that

I am pouring through to help me develop the new protocols. I will also pass on

any good info.

Marcus RD CNSD

New Member

Hello,

My name is Marcus, I'm a registered

dietitian who has worked

with this population since 1998. I've worked with

the same bariatric

surgeon since that time - initially saw pts in his

office and now

see them in my private practice. However,

that is about to change

as I have just accepted a new position at a weight

management center

within our hospital system which is where I will

see this same group

of pts going forward. The psychologists who work

with our pts are

also at this center. While private practice has

it's advantages, I

prefer a situation where I am able to interact

with other members of

the team to best assess and treat these pts.

And so it looks like I

am leaving my private practice behind to become involved

on another

level.

I am also part of our hospital system's newly

formed bariatric

surgery task force - looking to standardize care

and credential

practitioners who wish to participate in the care

of these pts.

Developing sound nutritional standards/protocols

will not be easy. I

have always been frusturated by the lack of good

evidence out there

regarding nutritional management of these pts and

of course every

surgeon seems to have his/her own personal prefs.

Looking forward to learning from and contributing

to this list.

Marcus RD

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Guest guest

I, too have been frustrated with the lack of consistent info and

research - though do realize that this is a relatively new boom in

this type of wt loss treatment so we may need to be patient while

research gets done.

Does anyone know if ADA has anything in the works re bariatric surgery

nutrition protocols?

Is anyone attending (or attended) ADA's Wt Mgmt Certification program

in Chicago next week? There is a spot on the adgenda for surgical

options - I am hoping there may be some helpful info there.

I have been doing this for about 1-1/2 years and keep learning more-

mostly from reading other facilities info, pt. feedback and

experience. Would feel much more comfortable if there were protocols

to follow - and am interested in helping to aquire qualitative info to

lead in that direction.

Rizzo, RD, LD

ian Brothers Medical Center

New Member

>

>

> Hello,

>

> My name is Marcus, I'm a registered dietitian who has worked

> with this population since 1998. I've worked with the same

> bariatric

> surgeon since that time - initially saw pts in his office and now

> see them in my private practice. However, that is about to change

> as I have just accepted a new position at a weight management

> center

> within our hospital system which is where I will see this same

> group

> of pts going forward. The psychologists who work with our pts are

> also at this center. While private practice has it's advantages, I

> prefer a situation where I am able to interact with other members

> of

> the team to best assess and treat these pts. And so it looks like

> I

> am leaving my private practice behind to become involved on

> another

> level.

>

> I am also part of our hospital system's newly formed bariatric

> surgery task force - looking to standardize care and credential

> practitioners who wish to participate in the care of these pts.

>

> Developing sound nutritional standards/protocols will not be easy.

> I

> have always been frusturated by the lack of good evidence out

> there

> regarding nutritional management of these pts and of course every

> surgeon seems to have his/her own personal prefs.

>

> Looking forward to learning from and contributing to this list.

>

> Marcus RD

>

>

>

>

>

>

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Guest guest

If anyone gets to go to the convention, please fill us poor less fortunate

souls in on what's going on when you get back!

Re: RE: New Member

I, too have been frustrated with the lack of consistent info and

research - though do realize that this is a relatively new boom in

this type of wt loss treatment so we may need to be patient while

research gets done.

Does anyone know if ADA has anything in the works re bariatric surgery

nutrition protocols?

Is anyone attending (or attended) ADA's Wt Mgmt Certification program

in Chicago next week? There is a spot on the adgenda for surgical

options - I am hoping there may be some helpful info there.

I have been doing this for about 1-1/2 years and keep learning more-

mostly from reading other facilities info, pt. feedback and

experience. Would feel much more comfortable if there were protocols

to follow - and am interested in helping to aquire qualitative info to

lead in that direction.

Rizzo, RD, LD

ian Brothers Medical Center

New Member

>

>

> Hello,

>

> My name is Marcus, I'm a registered dietitian who has worked

> with this population since 1998. I've worked with the same

> bariatric

> surgeon since that time - initially saw pts in his office and now

> see them in my private practice. However, that is about to change

> as I have just accepted a new position at a weight management

> center

> within our hospital system which is where I will see this same

> group

> of pts going forward. The psychologists who work with our pts are

> also at this center. While private practice has it's advantages, I

> prefer a situation where I am able to interact with other members

> of

> the team to best assess and treat these pts. And so it looks like

> I

> am leaving my private practice behind to become involved on

> another

> level.

>

> I am also part of our hospital system's newly formed bariatric

> surgery task force - looking to standardize care and credential

> practitioners who wish to participate in the care of these pts.

>

> Developing sound nutritional standards/protocols will not be easy.

> I

> have always been frusturated by the lack of good evidence out

> there

> regarding nutritional management of these pts and of course every

> surgeon seems to have his/her own personal prefs.

>

> Looking forward to learning from and contributing to this list.

>

> Marcus RD

>

>

>

>

>

>

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Guest guest

I attended the wt mgmt certif. program

last fall. I learned no new info at the surgical session. The presentation was good but the info

was pretty general. It seemed

geared more towards RDs not currently working in the field or those newly

entering it. However, maybe there was

feedback related to the information being somewhat superficial and the presentation

may be different this time around.

Marcus RD CNSD

Re: RE:

New Member

I, too have been frustrated with the lack of

consistent info and

research - though do realize that this is a

relatively new boom in

this type of wt loss treatment so we may need to

be patient while

research gets done.

Does anyone know if ADA has anything in the

works re bariatric surgery

nutrition protocols?

Is anyone attending (or attended) ADA's Wt Mgmt

Certification program

in Chicago next week?

There is a spot on the adgenda for surgical

options - I am hoping there may be some helpful

info there.

I have been doing this for about 1-1/2 years and

keep learning more-

mostly from reading other facilities info, pt.

feedback and

experience. Would feel much more comfortable if

there were protocols

to follow - and am interested in helping to aquire

qualitative info to

lead in that direction.

Rizzo, RD, LD

ian Brothers Medical Center

New

Member

>

>

> Hello,

>

> My name is Marcus, I'm a registered

dietitian who has worked

> with this population since 1998. I've worked

with the same

> bariatric

> surgeon since that time - initially saw pts

in his office and now

> see them in my private practice.

However, that is about to change

> as I have just accepted a new position at a

weight management

> center

> within our hospital system which is where I

will see this same

> group

> of pts going forward. The psychologists who

work with our pts are

> also at this center. While private practice

has it's advantages, I

> prefer a situation where I am able to

interact with other members

> of

> the team to best assess and treat these

pts. And so it looks like

> I

> am leaving my private practice behind to

become involved on

> another

> level.

>

> I am also part of our hospital system's newly

formed bariatric

> surgery task force - looking to standardize

care and credential

> practitioners who wish to participate in the

care of these pts.

>

> Developing sound nutritional

standards/protocols will not be easy.

> I

> have always been frusturated by the lack of

good evidence out

> there

> regarding nutritional management of these pts

and of course every

> surgeon seems to have his/her own personal

prefs.

>

> Looking forward to learning from and

contributing to this list.

>

> Marcus RD

>

>

>

>

>

>

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Guest guest

I agree with , I attended a year ago and the info, while very good, was very general.

-----Original Message-----From: Marcus [mailto:nutrition@...]Sent: Wednesday, March 26, 2003 5:32 PM Subject: RE: RE: New Member

I attended the wt mgmt certif. program last fall. I learned no new info at the surgical session. The presentation was good but the info was pretty general. It seemed geared more towards RDs not currently working in the field or those newly entering it. However, maybe there was feedback related to the information being somewhat superficial and the presentation may be different this time around.

Marcus RD CNSD

-----Original Message-----From: Rizzo [mailto:Nutrizz6RD@...] Sent: Wednesday, March 26, 2003 3:14 PM Subject: Re: RE: New Member

I, too have been frustrated with the lack of consistent info and research - though do realize that this is a relatively new boom in this type of wt loss treatment so we may need to be patient while research gets done.Does anyone know if ADA has anything in the works re bariatric surgery nutrition protocols? Is anyone attending (or attended) ADA's Wt Mgmt Certification program in Chicago next week? There is a spot on the adgenda for surgical options - I am hoping there may be some helpful info there. I have been doing this for about 1-1/2 years and keep learning more- mostly from reading other facilities info, pt. feedback and experience. Would feel much more comfortable if there were protocols to follow - and am interested in helping to aquire qualitative info to lead in that direction. Rizzo, RD, LDian Brothers Medical Center New Member> > > Hello, > > My name is Marcus, I'm a registered dietitian who has worked > with this population since 1998. I've worked with the same > bariatric > surgeon since that time - initially saw pts in his office and now > see them in my private practice. However, that is about to change > as I have just accepted a new position at a weight management > center > within our hospital system which is where I will see this same > group > of pts going forward. The psychologists who work with our pts are > also at this center. While private practice has it's advantages, I > prefer a situation where I am able to interact with other members > of > the team to best assess and treat these pts. And so it looks like > I > am leaving my private practice behind to become involved on > another > level.> > I am also part of our hospital system's newly formed bariatric > surgery task force - looking to standardize care and credential > practitioners who wish to participate in the care of these pts. > > Developing sound nutritional standards/protocols will not be easy. > I > have always been frusturated by the lack of good evidence out > there > regarding nutritional management of these pts and of course every > surgeon seems to have his/her own personal prefs.> > Looking forward to learning from and contributing to this list. > > Marcus RD> > > > > >

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Guest guest

Wouldn't it be neat if ADA included a 'definitive review' of practises all

over the country and the world regarding bariatric surgeries at the next ADA

FNCE? It could even be one of the graduate courses offered the day before

or after.

Kendra W. McConahy, R.D.

Clinical Nutrition Manager

Largo Medical Center

727-588-5491

This email and any files transmitted with it may contain PRIVILEGED or

CONFIDENTIAL information and may be read or used only by the intended

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the number listed.

> Re: RE: New Member

>

> I, too have been frustrated with the lack of consistent info and

> research - though do realize that this is a relatively new boom in

> this type of wt loss treatment so we may need to be patient while

> research gets done.

> Does anyone know if ADA has anything in the works re bariatric

> surgery

> nutrition protocols?

> Is anyone attending (or attended) ADA's Wt Mgmt Certification

> program

> in Chicago next week? There is a spot on the adgenda for surgical

> options - I am hoping there may be some helpful info there.

> I have been doing this for about 1-1/2 years and keep learning more-

>

> mostly from reading other facilities info, pt. feedback and

> experience. Would feel much more comfortable if there were protocols

>

> to follow - and am interested in helping to aquire qualitative info

> to

> lead in that direction.

> Rizzo, RD, LD

> ian Brothers Medical Center

>

> New Member

> >

> >

> > Hello,

> >

> > My name is Marcus, I'm a registered dietitian who has worked

>

> > with this population since 1998. I've worked with the same

> > bariatric

> > surgeon since that time - initially saw pts in his office and now

> > see them in my private practice. However, that is about to change

>

> > as I have just accepted a new position at a weight management

> > center

> > within our hospital system which is where I will see this same

> > group

> > of pts going forward. The psychologists who work with our pts are

> > also at this center. While private practice has it's advantages, I

>

> > prefer a situation where I am able to interact with other members

> > of

> > the team to best assess and treat these pts. And so it looks like

>

> > I

> > am leaving my private practice behind to become involved on

> > another

> > level.

> >

> > I am also part of our hospital system's newly formed bariatric

> > surgery task force - looking to standardize care and credential

> > practitioners who wish to participate in the care of these pts.

> >

> > Developing sound nutritional standards/protocols will not be easy.

>

> > I

> > have always been frusturated by the lack of good evidence out

> > there

> > regarding nutritional management of these pts and of course every

> > surgeon seems to have his/her own personal prefs.

> >

> > Looking forward to learning from and contributing to this list.

> >

> > Marcus RD

> >

> >

> >

> >

> >

> >

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  • 2 weeks later...
Guest guest

Welcome ,

I am mother to three fabulous children, the youngest of which (Taleah 2

1/2) has SMA type 1. Congratulation on your upcoming wedding - do you have

a date set?

I hope you enjoy the group.

At 11:58 PM 4/6/2003 +0000, you wrote:

>Hi Everyone,

>

>My name is , I am 24 and from Pennsylvania. I am a new member

>to your group. My fiance Greg has SMA. He is 27 and has been in a

>wheelchair since he was about 9yrs. We have been together for a

>little over 2 years and have been engaged for a year. There is little

>I know of his disease, as it is the same for him. He was only about

>2 or 3 when diagnosed and never really questioned his mother or

>father on the specifics of his illness when he got older. So, not

>only am I here to learn more about SMA, but to also get to know some

>people and possibly make some new friends. I don't know what it is

>like to be in a wheelchair and have a disability. But I do know that

>just because someone is in that situation it doesn't mean they are

>different than anyone else and I wish more people understood that. I

>have seen alot of ignorance in so many people and it is extremely

>frustrating to encounter that. I see what Greg goes through but will

>never fully understand it. I'm assuming not only is this group made

>up of people with SMA, but they're family and friends as well. It

>would be enlightning and encouraging to me to discuss different

>topics with your group and I look forward it.

>

>Thank you for reading :)

>

>

>

>

>

>

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Guest guest

Hi and welcome. I am 32 with sma type 3 and I'm also from PA.

Welcome!

Tom

New Member

> Hi Everyone,

>

> My name is , I am 24 and from Pennsylvania. I am a new member

> to your group. My fiance Greg has SMA. He is 27 and has been in a

> wheelchair since he was about 9yrs. We have been together for a

> little over 2 years and have been engaged for a year. There is little

> I know of his disease, as it is the same for him. He was only about

> 2 or 3 when diagnosed and never really questioned his mother or

> father on the specifics of his illness when he got older. So, not

> only am I here to learn more about SMA, but to also get to know some

> people and possibly make some new friends. I don't know what it is

> like to be in a wheelchair and have a disability. But I do know that

> just because someone is in that situation it doesn't mean they are

> different than anyone else and I wish more people understood that. I

> have seen alot of ignorance in so many people and it is extremely

> frustrating to encounter that. I see what Greg goes through but will

> never fully understand it. I'm assuming not only is this group made

> up of people with SMA, but they're family and friends as well. It

> would be enlightning and encouraging to me to discuss different

> topics with your group and I look forward it.

>

> Thank you for reading :)

>

>

>

>

>

>

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Guest guest

Hello ,

I am 23, have SMA 2 and have never walked. I use an electric wheelchair.

I have no breathing-issues, at least not for now. I am from Norway and

I am married to an able-bodied Englishman. We are currently trying to

have a baby.

Hope you feel at home on this list!

Gunn (aka Misty).

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Guest guest

Welcome ,

I too am from PA, man, never knew we had that many on here. I'm just north

of Pittsburgh, although it seems as though most are on the other side of the

state. I'm also AB and dated a girl with SMA, thus how I learned about it

and met some of the people here on this list. It's a good group full of

alot of information along with good friends.

Later,

Mike Briggs

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

" Fish Gotta Swim, I Gotta Dive "

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Guest guest

Ya'll up there should get together!

L

Re: New Member

Welcome ,

I too am from PA, man, never knew we had that many on here. I'm just north

of Pittsburgh, although it seems as though most are on the other side of the

state. I'm also AB and dated a girl with SMA, thus how I learned about it

and met some of the people here on this list. It's a good group full of

alot of information along with good friends.

Later,

Mike Briggs

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

" Fish Gotta Swim, I Gotta Dive "

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Guest guest

Tom,

I live on the edge of montgomery and berks county NW of philly. but i go to

school and have an apt in philly also. what county do u live in?

Kimi

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In a message dated 4/8/2003 5:02:03 PM Pacific Daylight Time,

hollyrp@... writes:

> I also had a little girl gasp and say, " Mommy, it

> talks! " when she heard me humming a silly little jingle under my breath as

> I

> helped a friend look for something at a store.

I actaully had a nurse say something like that to me! She was asking my mom

questions she should have been asking me. When I started answering them

myself, she gasped and said " Oh my gosh, you talk?!? "

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Tom,

My best friend Kaitlin goes to sville. Shes graduating this year. We

aren't that far from eachother. Philly is great. I love the accessible

sidewalks and buses. I live in the middle of no where so getting around is

hard.

Kimi

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Guest guest

I would like to thank you all for the warm welcome. I read alot of

different replies and I got confused as to who was who, lol. It was

cool to see there are alot of other people from PA. We are in the

northeast. About an hour outside the Poconos. We have not yet

decided on a date for our wedding, we are currently trying to

purchase our first home. Its been pretty hard, we have not been able

to find anything accessible for Greg. To give a little more backround

on Greg....like I had said in my first post he has been unable to

walk for close to 20yrs. He has SMA Type 3. Other than that he has

really not had any other problems, aside from occasional weakness. He

has a full time job, he's a graphic artist. And he's able to do alot

of stuff, within limits. Alot of people think that just because of

the wheelchair Greg can't do anything, they think that he has less of

a life, or that our relationship could never be the same as anyone

else's (and more often than not, its better than alot of couples).

There have been so many people who were totally amazed just by the

fact that he works or drives. Then there's the people who think that

he is mentally challenged. It upsets me so much when people are like

that, but I guess I can sort of understand their way of thinking and

I'm sure all of you can relate to this stuff. The fact that he is in

a wheelchair is, ofcourse, part of our lives, but like Pat

stated in a reply that her SMA does not consume her and her husbands

life, and thats how it is for us as I'm sure it is for all of you.

Its nice to finally have people I can talk to and people who

understand.

Thanks again for the welcome

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Guest guest

Good luck house hunting . It took me just over a year of looking to

find a suitable house. It was sooo worth it. As far as the way people talk

to Greg, here's a good example: I was having lunch at an outdoor restaurant

with my girlfriend two weeks ago. An older man came up to our table, looked

right through me and said to her " I knew a man in a wheelchair. It was a

blessing when he died. " Then he told her that God will take me away from my

misery. She was fuming but I told her it wasn't worth getting upset over.

He wasn't mean spirited about it or anything.

Anyway, I live about 50 miles west of Philadelphia and I have been working

in drafting for the past 13 years.

Take care,

Tom

Re: New Member

> I would like to thank you all for the warm welcome. I read alot of

> different replies and I got confused as to who was who, lol. It was

> cool to see there are alot of other people from PA. We are in the

> northeast. About an hour outside the Poconos. We have not yet

> decided on a date for our wedding, we are currently trying to

> purchase our first home. Its been pretty hard, we have not been able

> to find anything accessible for Greg. To give a little more backround

> on Greg....like I had said in my first post he has been unable to

> walk for close to 20yrs. He has SMA Type 3. Other than that he has

> really not had any other problems, aside from occasional weakness. He

> has a full time job, he's a graphic artist. And he's able to do alot

> of stuff, within limits. Alot of people think that just because of

> the wheelchair Greg can't do anything, they think that he has less of

> a life, or that our relationship could never be the same as anyone

> else's (and more often than not, its better than alot of couples).

> There have been so many people who were totally amazed just by the

> fact that he works or drives. Then there's the people who think that

> he is mentally challenged. It upsets me so much when people are like

> that, but I guess I can sort of understand their way of thinking and

> I'm sure all of you can relate to this stuff. The fact that he is in

> a wheelchair is, ofcourse, part of our lives, but like Pat

> stated in a reply that her SMA does not consume her and her husbands

> life, and thats how it is for us as I'm sure it is for all of you.

> Its nice to finally have people I can talk to and people who

> understand.

>

> Thanks again for the welcome

>

>

>

>

>

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Guest guest

Hi all and welcome to all of you new members! I am Holly, 26, diagnosed

with SMA I at age 15 mths, but suspect I really have SMA II. No special guy

in my life at the moment, but I sure am praying God introduces us soon. ;-)

Hmm, as far as the " uneducated " comments, I once had an older fella (right

in my presence) ask my mom, " Has she always been retarded, or was she born

that way? " Hmm....let me think, uh, well, gee, NO! In fact, I'm *still*

not retarded. LOL :) I also had a little girl gasp and say, " Mommy, it

talks! " when she heard me humming a silly little jingle under my breath as I

helped a friend look for something at a store. Of course, the kiddie

comments do not get to me like the adult comments. I can attribute the

former to a lack of exposure and education, but I can only attribute the

latter to ignorance. Oh, and those are just the beginnings....hehe.

On another note....well, never mind. I'll do a separate post with a proper

subject that matches. :-)

Blessings,

Holly

Re: New Member

>

>

> > I would like to thank you all for the warm welcome. I read alot of

> > different replies and I got confused as to who was who, lol. It was

> > cool to see there are alot of other people from PA. We are in the

> > northeast. About an hour outside the Poconos. We have not yet

> > decided on a date for our wedding, we are currently trying to

> > purchase our first home. Its been pretty hard, we have not been able

> > to find anything accessible for Greg. To give a little more backround

> > on Greg....like I had said in my first post he has been unable to

> > walk for close to 20yrs. He has SMA Type 3. Other than that he has

> > really not had any other problems, aside from occasional weakness. He

> > has a full time job, he's a graphic artist. And he's able to do alot

> > of stuff, within limits. Alot of people think that just because of

> > the wheelchair Greg can't do anything, they think that he has less of

> > a life, or that our relationship could never be the same as anyone

> > else's (and more often than not, its better than alot of couples).

> > There have been so many people who were totally amazed just by the

> > fact that he works or drives. Then there's the people who think that

> > he is mentally challenged. It upsets me so much when people are like

> > that, but I guess I can sort of understand their way of thinking and

> > I'm sure all of you can relate to this stuff. The fact that he is in

> > a wheelchair is, ofcourse, part of our lives, but like Pat

> > stated in a reply that her SMA does not consume her and her husbands

> > life, and thats how it is for us as I'm sure it is for all of you.

> > Its nice to finally have people I can talk to and people who

> > understand.

> >

> > Thanks again for the welcome

> >

> >

> >

> >

> >

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Guest guest

Hi Kimi,

I live in Lancaster, right on the border of Lancaster city and

sville. I haven't been to Philly in so long. It's a great city, I

miss the soft pretzels!

Tom

Re: Re: New Member

> Tom,

> I live on the edge of montgomery and berks county NW of philly. but i go

to

> school and have an apt in philly also. what county do u live in?

> Kimi

>

>

>

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Guest guest

Hi,

I live in Lancaster Co. too. Opposite end though.

Anne

Re: Re: New Member

>

>

> > Tom,

> > I live on the edge of montgomery and berks county NW of philly. but i

go

> to

> > school and have an apt in philly also. what county do u live in?

> > Kimi

> >

> >

> >

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Guest guest

Hi everyone,

I've been in a wheelchair my entire life. The rudest comments I've ever

heard

towards me have just happened recently. I'm the maid of honor in my friends

wedding and when we were dress shopping the woman who owned the shop told

my friend and I that I couldn't help pick out the dresses because " I'm not

the kind of maid of honor that can make decisions " .

Nice.

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The new MSN 8: smart spam protection and 2 months FREE*

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Hi, Chris! Welcome! You sound like an old pro!! ;)

pamela

----- Original Message -----

So far this week I've made cream soap, liquid soap, goatmilk lavender soap,

and goatmilk lavender lotion.

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Welcome Chad!

My name is English, I live in Utah with my husband and kids. My

youngest daughter is the reason I am a member of this group. Taleah is 2

1/2 (3 in July) and has type 1 SMA. She is tube fed, uses bipap during

sleep and illnesses and depends on CoughAssist and suction to help clear

her airways - but that's all beside the point. Really she is a bright,

beautiful little girl who loves to color, play with marbles, watch Elmo,

spin donuts with her Power Chair and most of all Get Her Own Way!

There are pictures at the website of both her and I as well as a lot of the

other members here. You should take a peek and then maybe put one of yourself.

At 05:32 AM 4/20/2003 +0000, you wrote:

>Well I just wanted to tell everyone a little about me I am new to

>this group as of today

>

>My name is Chad Rath I live in Coon Rapids, MN I am 24 years old, I

>have SMA Type 3, also I have a beautiful daughter named Zoe (14

>months old) I would like t get to know others with sma I have had

>alot of problems dealing with my disability as it has started to

>progress, I use to attend MDA Camp but other than that i have never

>met anyone with sma that I know so this is a unique situation for me.

>if you would like to know more dont esitate to ask me thank you

>

>

>

>

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Hi Chad, welcome to the group. I am 32, from PA and I have type 3 also.

Can you still walk? What type of work do you do? I'm sure I can relate to

some of the problems you've experienced with the progression of SMA. My

mid- to late-20's were particularly tough, it seems as though I started

losing strength faster during that time. Anyway, this group is a great

resource for info and support.

Take care,

Tom

New Member

> Well I just wanted to tell everyone a little about me I am new to

> this group as of today

>

> My name is Chad Rath I live in Coon Rapids, MN I am 24 years old, I

> have SMA Type 3, also I have a beautiful daughter named Zoe (14

> months old) I would like t get to know others with sma I have had

> alot of problems dealing with my disability as it has started to

> progress, I use to attend MDA Camp but other than that i have never

> met anyone with sma that I know so this is a unique situation for me.

> if you would like to know more dont esitate to ask me thank you

>

>

>

>

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