Introduction

[Guest guest]

,

Hello! Very nice to " meet " you- You happen to have one of the best SMA doctors

right by you in Madison- Dr. Schroth. We drive up from Kansas City,

Missouri to see her every year. Her info is:

K. Schroth, M.D.

Associate Professor of Pediatrics

Director, Pediatric Pulmonary Center Grant

University of Wisconsin Children's Hospital

600 Highland Avenue

Madison, WI 53792-9988

Office: 608-263-8555

FAX: 608-263-0510

email: mschroth@...

You can learn more about SMA @ www.curesma.org or www.smasupport.com

There is also a site, kinda like facebook- called www.smaspace.com where you can

connect with families and physicians. There is another support group that mainly

consists of parents- a google group through sma support.

My son is a Type 2 and is now 11 years old, so feel free to ask me any questions

directly!

Kristal- Mom to Brett- SMA II- 11 years old

Visit Brett @ www.our-sma-angels.com/brett

OR www.caringbridge.org/visit/brettwilson

introduction

Hello!

Thank you for this great site and resource!

We are and Rick Henningfeld and are from southeastern Wisconsin. We

currently have 5 boys at home- 3 bio and twins adopted from Ethiopia. We are

reviewing the file of a little girl from China with Spinal Muscular Atrophy

Type

II who is 5 years old.

We definitely do not know as much as we'd like or need to know so we are

looking

forward to learning more from this group.

We have already begun reading about SMA, but have a lot to learn!

Is anyone out there from Wisconsin who would know of a good doctor

specializing

in this field who might review this child's file for us?

Thanks in advance for your advice and knowledge!

and Rick

[Guest guest]

I'm in San , and my daughter Anmei has type II/III. Let me know if you want

to meet sometimes.

 

Most people SMA patients I know are kids since Anmei is 12 years old.

 

Ping

 

 

>________________________________

> From: na Czapkay <ohdisco@...>

>

>Sent: Thursday, January 12, 2012 11:23 AM

>Subject: Introduction

>

>

>

> 

>

>Hey there!

>

>My name is na. I'm 23 years old and have SMA type 3. I was born in Santa

>Clara, but split my time as a child between Saratoga, California and Aberdeen,

>Washington. I now live in San , CA, in a cute, brand new house with my

>husband, , and our dog, Ramona. I live and breathe music, and read

>extensively. I have a baby nephew, Noah, whom I adore, and we have started

>trying to have a bundle of joy of our own. My dream is to own my own cupcake

>and cookie shop (as trendy as that is right now), because baking is therapeutic

>to me (and apparently I make pretty tasty cupcakes and cookies!). I'm a Food

>Network nerd (along with my father-in-law, and his girlfriend), and I want

a

>Deen to be my grandma.

>

>My SMA has slowed me down somewhat compared to others, and I've felt myself

>getting weaker, but I know I am fortunate and lucky to still be able to walk

>independently with little to no effort.

>

>I really hope that I can find people I can connect with on here that I can get

>to know and love, be there for them in difficult times, and also rely on them

>when times get rough for me as well. I don't really have any support when it

>comes to my SMA since my mama passed away in 2010, seeing as most of the

doctors

>I see haven't even heard of the disease, let alone know what to do with someone

>who has it.

>

>

[Guest guest]

Hello na, I'm a type 3'er and exactly twice your age. I'm in a manual

wheelchair now as I can't walk anymore (fairly recent) but I want to tell you my

life is very good. If I was to offer any advice, it would be to stay as active

as your can and don't put important things off, Do em' today. Good advice for

everyone!

>

> Hey there!

>

> My name is na. I'm 23 years old and have SMA type 3. I was born in

Santa

> Clara, but split my time as a child between Saratoga, California and Aberdeen,

> Washington. I now live in San , CA, in a cute, brand new house with my

> husband, , and our dog, Ramona. I live and breathe music, and read

> extensively. I have a baby nephew, Noah, whom I adore, and we have started

> trying to have a bundle of joy of our own. My dream is to own my own cupcake

> and cookie shop (as trendy as that is right now), because baking is

therapeutic

> to me (and apparently I make pretty tasty cupcakes and cookies!). I'm a Food

> Network nerd (along with my father-in-law, and his girlfriend), and I want

a

> Deen to be my grandma.

>

> My SMA has slowed me down somewhat compared to others, and I've felt myself

> getting weaker, but I know I am fortunate and lucky to still be able to walk

> independently with little to no effort.

>

> I really hope that I can find people I can connect with on here that I can get

> to know and love, be there for them in difficult times, and also rely on them

> when times get rough for me as well. I don't really have any support when it

> comes to my SMA since my mama passed away in 2010, seeing as most of the

doctors

> I see haven't even heard of the disease, let alone know what to do with

someone

> who has it.

>

>

[Guest guest]

That is great advice, I wish I did more while I could. I have type 3. I'm 41. I

use a power chair at work and a manual around the house but I can only wheel

myself on hard flooring, no carpet. Can't really walk anymore, just a couple

steps if I'm holding on to someone. I have been working full time steadily as a

drafter/CADD operator for the past 22 years, I got married on May 29, 2010. I

recently had to quit driving but just a few weeks ago I completed training and

passed my test to drive with hand controls, so as soon as I figure out how to

pay for a van that can be modified, I should be on the road again. Welcome,

na!

Tom

Re: Introduction

Hello na, I'm a type 3'er and exactly twice your age. I'm in a manual

wheelchair now as I can't walk anymore (fairly recent) but I want to tell you my

life is very good. If I was to offer any advice, it would be to stay as active

as your can and don't put important things off, Do em' today. Good advice for

everyone!

>

> Hey there!

>

> My name is na. I'm 23 years old and have SMA type 3. I was born in Santa

> Clara, but split my time as a child between Saratoga, California and Aberdeen,

> Washington. I now live in San , CA, in a cute, brand new house with my

> husband, , and our dog, Ramona. I live and breathe music, and read

> extensively. I have a baby nephew, Noah, whom I adore, and we have started

> trying to have a bundle of joy of our own. My dream is to own my own cupcake

> and cookie shop (as trendy as that is right now), because baking is

therapeutic

> to me (and apparently I make pretty tasty cupcakes and cookies!). I'm a Food

> Network nerd (along with my father-in-law, and his girlfriend), and I want

a

> Deen to be my grandma.

>

> My SMA has slowed me down somewhat compared to others, and I've felt myself

> getting weaker, but I know I am fortunate and lucky to still be able to walk

> independently with little to no effort.

>

> I really hope that I can find people I can connect with on here that I can get

> to know and love, be there for them in difficult times, and also rely on them

> when times get rough for me as well. I don't really have any support when it

> comes to my SMA since my mama passed away in 2010, seeing as most of the

doctors

> I see haven't even heard of the disease, let alone know what to do with

someone

> who has it.

>

>

[Guest guest]

Hi!

I do try to stay as active as I can; next month I'll be up in Washington

trekking through the rainforest with my father-in-law and his girlfriend!

My mom, before she had her stroke at 48, was still walking around the house

lightly holding onto walls, and was still able to stand and make dinner. She

needed help (either a bar on the left side or her walker) to get out of sitting

position, but other than that she was really independent inside the house/hotel

rooms. Outside the house she needed her scooter/powerchair, but her strength

and walking abilities at 48, and the fact that my symptoms now are more mild

than hers were at my age, make me hopeful for the future that I still have a

good chunk of walking life ahead of me.

> >

> > Hey there!

> >

> > My name is na. I'm 23 years old and have SMA type 3. I was born in

Santa

> > Clara, but split my time as a child between Saratoga, California and

Aberdeen,

> > Washington. I now live in San , CA, in a cute, brand new house with my

> > husband, , and our dog, Ramona. I live and breathe music, and read

> > extensively. I have a baby nephew, Noah, whom I adore, and we have started

> > trying to have a bundle of joy of our own. My dream is to own my own

cupcake

> > and cookie shop (as trendy as that is right now), because baking is

therapeutic

> > to me (and apparently I make pretty tasty cupcakes and cookies!). I'm a

Food

> > Network nerd (along with my father-in-law, and his girlfriend), and I want

a

> > Deen to be my grandma.

> >

> > My SMA has slowed me down somewhat compared to others, and I've felt myself

> > getting weaker, but I know I am fortunate and lucky to still be able to walk

> > independently with little to no effort.

> >

> > I really hope that I can find people I can connect with on here that I can

get

> > to know and love, be there for them in difficult times, and also rely on

them

> > when times get rough for me as well. I don't really have any support when

it

> > comes to my SMA since my mama passed away in 2010, seeing as most of the

doctors

> > I see haven't even heard of the disease, let alone know what to do with

someone

> > who has it.

> >

> >

[Guest guest]

Hi na and welcome. I am type 3 also, ane even older than Paco (!) and

older than your mum when she had her stroke...and I'm still standing and

ambulatory. I echo what Paco said: keep those muscles moving! I have been

using a vibration plate and it has definitely made a difference. Sma affects

everyone differently. Listen to your body. And go for it. The last thing you

want to have in life are regrets.

By the way, after we got married our first pet was a wonderful cat named Ramona.

Sent from my BlackBerry device on the Wireless Network

Re: Introduction

Hi!

I do try to stay as active as I can; next month I'll be up in Washington

trekking through the rainforest with my father-in-law and his girlfriend!

My mom, before she had her stroke at 48, was still walking around the house

lightly holding onto walls, and was still able to stand and make dinner. She

needed help (either a bar on the left side or her walker) to get out of sitting

position, but other than that she was really independent inside the house/hotel

rooms. Outside the house she needed her scooter/powerchair, but her strength

and walking abilities at 48, and the fact that my symptoms now are more mild

than hers were at my age, make me hopeful for the future that I still have a

good chunk of walking life ahead of me.

> >

> > Hey there!

> >

> > My name is na. I'm 23 years old and have SMA type 3. I was born in

Santa

> > Clara, but split my time as a child between Saratoga, California and

Aberdeen,

> > Washington. I now live in San , CA, in a cute, brand new house with my

> > husband, , and our dog, Ramona. I live and breathe music, and read

> > extensively. I have a baby nephew, Noah, whom I adore, and we have started

> > trying to have a bundle of joy of our own. My dream is to own my own

cupcake

> > and cookie shop (as trendy as that is right now), because baking is

therapeutic

> > to me (and apparently I make pretty tasty cupcakes and cookies!). I'm a

Food

> > Network nerd (along with my father-in-law, and his girlfriend), and I want

a

> > Deen to be my grandma.

> >

> > My SMA has slowed me down somewhat compared to others, and I've felt myself

> > getting weaker, but I know I am fortunate and lucky to still be able to walk

> > independently with little to no effort.

> >

> > I really hope that I can find people I can connect with on here that I can

get

> > to know and love, be there for them in difficult times, and also rely on

them

> > when times get rough for me as well. I don't really have any support when

it

> > comes to my SMA since my mama passed away in 2010, seeing as most of the

doctors

> > I see haven't even heard of the disease, let alone know what to do with

someone

> > who has it.

> >

> >

[Guest guest]

Hello everyone,

I would like to introduce myself as a new member of the group. After 10 years in

practice I am now a first year full time PhD research student at UCLan. My

research is concerned with health visitors experiences of working with child

neglect.

I'm really looking forward to some good discussions with you all.

Warm regards, Lorraine

[Guest guest]

Hi Lorraine,

Good to hear of your research. Several years ago Tim Brighouse , Director of Education for Bham wrote that many children were starting school with a very limited vocabularly and little confidence to use the words they did

know.

He wrote that he thought HVs should address this issue in some way.

He also wrote that attention to this aspect of child health was the key issue if we are serious about reducing inequalities in health in the UK.

Will your research be looking into this aspect of child neglect?

Regards

Malcolm

From: [ ] On Behalf Of lorraine.edmondston [lorraine.edmondston@...]

Sent: 04 May 2012 22:56

Subject: Introduction

Hello everyone,

I would like to introduce myself as a new member of the group. After 10 years in practice I am now a first year full time PhD research student at UCLan. My research is concerned with health visitors experiences of working with child neglect.

I'm really looking forward to some good discussions with you all.

Warm regards, Lorraine

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

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[Guest guest]

Hi Malcolm,

Thanks very much for your message. Its a very interesting and important point

that you raise and it certainly may be an issue that is raised in my findings.

My study is concerned with understanding of what hv's experiences are of working

with child neglect and the reality of what their practice is, so it will be very

interesting to see if this is an issue that emerges from the data.

Best wishes

Lorraine

>

> Hi Lorraine,

>

> Good to hear of your research. Several years ago Tim Brighouse , Director of

Education for Bham wrote that many children were starting school with a very

limited vocabularly and little confidence to use the words they did know.

>

> He wrote that he thought HVs should address this issue in some way.

>

> He also wrote that attention to this aspect of child health was the key issue

if we are serious about reducing inequalities in health in the UK.

>

>

> Will your research be looking into this aspect of child neglect?

>

> Regards

>

> Malcolm

>

>

>

>

> ________________________________

> From: [ ] On Behalf Of

lorraine.edmondston [lorraine.edmondston@...]

> Sent: 04 May 2012 22:56

>

> Subject: Introduction

>

>

>

> Hello everyone,

> I would like to introduce myself as a new member of the group. After 10 years

in practice I am now a first year full time PhD research student at UCLan. My

research is concerned with health visitors experiences of working with child

neglect.

> I'm really looking forward to some good discussions with you all.

> Warm regards, Lorraine

>

>

>

>

>

********************************************************************************\

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

>

> This message may contain confidential information. If you are not the intended

recipient please inform the

> sender that you have received the message in error before deleting it.

> Please do not disclose, copy or distribute information in this e-mail or take

any action in reliance on its contents:

> to do so is strictly prohibited and may be unlawful.

>

> Thank you for your co-operation.

>

> NHSmail is the secure email and directory service available for all NHS staff

in England and Scotland

> NHSmail is approved for exchanging patient data and other sensitive

information with NHSmail and GSi recipients

> NHSmail provides an email address for your career in the NHS and can be

accessed anywhere

>

>

********************************************************************************\

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

>

[Guest guest]

Hi Margaret,

Thanks for that. Will keep you posted as it progresses.

Best wishes

Lorraine

>

> Hi Lorraine

>

> Welcome and that will be very interesting research - look forward to hearing

more as it develops.

>

> Margaret

>

> From: [mailto: ] On

Behalf Of lorraine.edmondston

> Sent: 04 May 2012 22:57

>

> Subject: Introduction

>

>

>

> Hello everyone,

> I would like to introduce myself as a new member of the group. After 10 years

in practice I am now a first year full time PhD research student at UCLan. My

research is concerned with health visitors experiences of working with child

neglect.

> I'm really looking forward to some good discussions with you all.

> Warm regards, Lorraine

>

[Guest guest]

Hi ,

Thanks for that. Which area of child protection are you looking at?

Malcolm's point is very relevant and it will be interesting to see if the

findings of the study highlight this issue.

I will keep you posted on how the study progresses

Thanks

Lorraine

>

> Hello Lorraine,

>

> Glad to see another HV exploring child protection issues! I will be

> interested to hear how yours progresses. Neglect is such a complex

> issue and like Malcolm, I find speech and social development a real

> question for health visitors.

>

>

>

>

> From: " lorraine.edmondston "

> <lorraine.edmondston@...>

> Date sent: Fri, 04 May 2012 21:56:31 -0000

> Subject: Introduction

> Send reply to:

>

> [ Double-click this line for list subscription options ]

>

> Hello everyone,

> I would like to introduce myself as a new member of the group. After

> 10 years in practice I am now a first year full time PhD research

> student at UCLan. My research is concerned with health visitors

> experiences of working with child neglect. I'm really looking forward

> to some good discussions with you all. Warm regards, Lorraine

>

>

>

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

>

>

[Guest guest]

I had hoped to find something relating to speech and language, but I

didn't find any mention of it in the material I used because it was

SCRs. Most of the children in the reports were aged well under

school age and many under 1 year.

Your study may be more fortunate than mine and perhaps the evidence

will support such hypotheses. It'll be interesting to hear more from

your work.

From: " lorraine.edmondston "

<lorraine.edmondston@...>

Date sent: Sun, 06 May 2012 21:46:37 -0000

Subject: Re: Introduction

Send reply to:

[ Double-click this line for list subscription options ]

Hi ,

Thanks for that. Which area of child protection are you looking at?

Malcolm's point is very relevant and it will be interesting to see if

the findings of the study highlight this issue. I will keep you

posted

on how the study progresses Thanks Lorraine

>

> Hello Lorraine,

>

> Glad to see another HV exploring child protection issues! I will be

> interested to hear how yours progresses. Neglect is such a complex

> issue and like Malcolm, I find speech and social development a real

> question for health visitors.

>

>

>

>

> From: " lorraine.edmondston "

> <lorraine.edmondston@...>

> Date sent: Fri, 04 May 2012 21:56:31 -0000

> Subject: Introduction

> Send reply to:

>

> [ Double-click this line for list subscription options ]

>

> Hello everyone,

> I would like to introduce myself as a new member of the group. After

> 10 years in practice I am now a first year full time PhD research

> student at UCLan. My research is concerned with health visitors

> experiences of working with child neglect. I'm really looking

> forward to some good discussions with you all. Warm regards,

> Lorraine

>

>

>

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

>

>

[Guest guest]

Dear ,Welcome to the list! I look forward to reading your blog. Do you ever accept guest posts. I often have ideas, but do not have time to write a regular blogSincerely,Dr. Marguerite DuaneSent from my iPhoneOn May 17, 2012, at 3:37 PM, J <2@...> wrote:

Hello, my name is . I served as first full time NFP Coordinator in the Diocese of Madison from 2007-09 until my family relocated. I've been blogging about NFP, fertility and family life issues at NFPworksblog.com since 2007, and currently serve as the Mission Development Coordinator for the Edith Stein Foundation. Thanks to Dr. Dominic Pedulla for introducing me to this list.

-- Real Love. Real Natural.Natural Family Planning Blog

=

[Guest guest]

Hi ! Welcome, welcome! I LOVE reading your blog! Thank you for all you do to spread the word about NFP. I'm sure you'll learn a lot and be able to contribute a lot to this group!Warmly,

O'Connor, RN, BSNOn Thu, May 17, 2012 at 6:04 PM, Marguerite <mduanemd@...> wrote:

 

Dear ,Welcome to the list!  I look forward to reading your blog.  Do you ever accept guest posts.  I often have ideas, but do not have time to write a regular blog

Sincerely,Dr. Marguerite DuaneSent from my iPhoneOn May 17, 2012, at 3:37 PM, J <2@...> wrote:

 

Hello, my name is . I served as first full time NFP Coordinator in the Diocese of Madison from 2007-09 until my family relocated. I've been blogging about NFP, fertility and family life issues at NFPworksblog.com since 2007, and currently serve as the Mission Development Coordinator for the Edith Stein Foundation. Thanks to Dr. Dominic Pedulla for introducing me to this list.

-- Real Love. Real Natural.Natural Family Planning Blog

=