$5 Can Still&nbsp;Buy Something

Hi, I have joined the blogging world. Check my blogg out http://lanaesquires.blogspot.com/

"We must be the change we wish to see"

Gandhi

Your personal Southern Living at Home Consultant

www.southernlivingathome.com

Want to do more with Windows Live? Learn �10 hidden secrets� from Jamie. Learn Now

#21536

From: "knuckles 145" <knuckles145@...>
Date: Fri Oct 31, 2008 1:23 pm
Subject: Re: OT: My list of Yahoo Groups :)

knuckles145us

Offline

my understanding from other email groups I'm on, Grouply is NOT a good idea.

Beth

On Fri, Oct 31, 2008 at 5:14 AM, Corey Krull <coreyk@...> wrote:

Hi,

You can see a list of my groups on Grouply at the link below. Maybe you'll find some you want to join.

Corey

Here's the link:
http://www.grouply.com/register.php?tmg=1278007&vt=14781440

====================
This message was posted by a fellow group member who uses Grouply instead of email to access this group. Grouply blocks additional invitations from being sent to this group by anyone for 30 days. Group owners can permanently block future invitations. For more on how Grouply maintains privacy and protects you, see http://blog.grouply.com/protect/ .

Reply | Forward | Messages in this Topic (7)

#21535

From: Corey Krull <coreyk@...>
Date: Fri Oct 31, 2008 12:14 pm
Subject: OT: My list of Yahoo Groups :)

disdg

Offline

Hi,

You can see a list of my groups on Grouply at the link below. Maybe you'll find some you want to join.

Corey

Here's the link:
http://www.grouply.com/register.php?tmg=1278007&vt=14781440

====================
This message was posted by a fellow group member who uses Grouply instead of email to access this group. Grouply blocks additional invitations from being sent to this group by anyone for 30 days. Group owners can permanently block future invitations. For more on how Grouply maintains privacy and protects you, see http://blog.grouply.com/protect/ .

Reply | Forward | Messages in this Topic (7)

#21534

From: Brenda <BracinKnee@...>
Date: Mon Oct 27, 2008 3:25 pm
Subject: MJ Update: Rollerskating + FSMA OKI Halloween Party = too much fun

bshanson68

Offline

Hello everyone

I have survived another week of classes and am slowing getting closer to the end of the quarter. I am so ready for a break and a health rest.

So on the health front, my IBS has finally stopped spasming out and so has the reflux! My lung infection is once again stenotrophomonas maltophilia, the same thing I have had off and on since April. It has been quite dreadful at times this week with the big huge plugs. Tuesday night I almost passed out due to a plug and it scared me to no end. I have had a plugging episode almost every night since them but we are getting better at catching them earlier and getting rid of them. I did change my G-tube and my J-tube changed Saturday, since it was time. Went great and I was glad.

Classes are going okay. My group project for Sociology that I was having major trouble with has turned around and we are doing great. Our bibliography reviews were due Tuesday and we got them back Thursday and our group did excellent. Our paper isn’t due until the last day of class and I have written 2 pages (out of my 7) so far. My group project in Rehab class is done and ready to present on Thursday, have to go make copies of the handout on Monday but it is done. I also started writing my Counseling paper which is due Nov 4^th or anytime before the end of the quarter…hmm, I hope to get it done early enough and turned in and out of the way.

Today was the OKI FSMA 2^nd annual Halloween Party. I had everyone trying to guess what I was going to be. My hints were dark, bright, and out of this world. Ever heard of the Milkyway??? Well I don't drink milk, I drink YooHoo...so with inspiration from Kim, an hours worth of sticking from Brenda, I give you the YooHoo Way Galaxy...Just discovered in a night sky near you. You can check my caring bridge page for a picture or the link to my photo album for pictures. http://b4sma.shutterfly.com/5637 I am working on a montage too, so stay tuned for that!

Tomorrow I have to meet with Jeff at ODS (Office of Disability Services) to go over my presentation for Friday and find out more details. I am nervous about speaking but I will do fine (just hope my throat doesn’t close during it!). I am also sending out 3 more blankets, making 16 blankets sent out this month. I hate that we keep having to send out so many but I will not stop until a cure is found. Another one of my friends from Connecticut with SMA passed away last week. Kyle was 10 years old and has had a couple of rough years. Just too many kids who die too early and there are way too many kids that are sick or still sick from last week. http://www.our-sma-angels.com/b4sma/prayers.htm I am just dreading this winter because it started off way to early this year.

Quote of the Day:

"True friendship is like sound health; the value of it is seldom known until it be lost." - Charles Caleb Colton

MJ Purk
SMA type I+, 20 years old
“Your life is an occasion, rise to it.” ~ Dustin Hoffman in Mr. Magorium's Wonder Emporium

Ask me about B4SMA – Blankets for SMA kids, Our-SMA-Angels websites, and Personalized Merchandise!

www.our-sma-angels.com/b4sma - B4SMA, My organization
www.our-sma-angels.com/Margaret - My website
www.cafepress.com/b4sma - My Shop

#21532

From: "lukenathaniel" <lukenathaniel@...>
Date: Tue Oct 21, 2008 6:36 am
Subject: McArdle's disease

lukenathaniel

Offline

While not technically a muscular dystrophy, McArdle's disease is in fact a
skeletal muscle
disorder that affects perhaps thousands of people worldwide, and many are
undiagnosed.  I
create http://mcardlesdisease.org to share information about this disease.  I
hope this proves
useful to anyone with McArdle's.

#21531

From: Lanae Squires <lmssquires@...>
Date: Tue Oct 21, 2008 9:29 pm
Subject: Presentation

freckeledscr...

Offline

hello, I have volunteered to give a presentation on MD to a graduate class of vocational Rehab counseling students. This is for our disabilities class. I have LGMD and can speak on this type of MD, but maybe not as well on the others. i will get most of my info from MDA website, but I would like some info from you out there.

1. How many of you are currently working or have worked in the past?
2. What accomodations do you have or have had to help you perform the tasks of work?
3. What accomodations would you like to have/ concerns that would be good to address?
4. If you could give advice to future rehab counselors what would that be?

Thanks for your help with this presentation.

Lanae

'We must be the change we wish to see'

Gandhi

Your personal Southern Living at Home Consultant

www.southernlivingathome.com

Store, manage and share up to 5GB with Windows Live SkyDrive. Start uploading now

#21530

From: JoyceGlass@...
Date: Mon Oct 20, 2008 8:47 pm
Subject: Fwd: Take Action for Duchenne

JoyceGlass@...

New MapQuest Local shows what's happening at your destination. Dining, Movies, Events, News more. Try it out!

$5 Can Still Buy Something

In these trying economic times, $5 doesn't seem to go far anymore. If you're lucky, $5 will get you:

Just over a gallon of milk

Just over a gallon of gas

A large coffee at Starbucks

But a $5 donation to Parent Project Muscular Dystrophy can fund research, raise awareness, promote advocacy, connect the community, and broaden treatment options. A donation of $5 can change lives.

Today, we are asking you to do two things which will take no more than 5 minutes of your time:

Take out your cell phone and text the word "CURE" to 90999 to make a $5 donation to PPMD.*
Forward this email to everyone in your address book, asking them to do the same. The ripple effect will be amazing. Even if you only ask 5 people, who ask 5 people, who ask 5 people - you will have made a difference.

Thank you for believing in Coach to Cure MD, and the partnership Parent Project Muscular Dystrophy has formed with the American Football Coaches Association to raise awareness of Duchenne muscular dystrophy while simultaneously raising money to fund cutting edge research that will end Duchenne.

October 25, 2008 will go down in the Duchenne community history books as a day where our country, while enjoying a great American pastime college football, generously gave to save the lives of young men around the world. So skip your venti pumpkin spice latte today, make a $5 donation, and spread the word.

We can beat this deadly opponent. We can end Duchenne.

Visit http://www.coachtocuremd.org/ to learn more or to stand behind your favorite participating team!

* A one-time charge of $5 will be added to your mobile phone bill. Standard messaging rates and additional fees may apply. All charges are billed by and payable to your mobile service provider. Proceeds benefit Parent Project Muscular Dystrophy. Service is available on most carriers. You can unsubscribe at any time by texting 'STOP' to 90999.

Our Mission: To improve the treatment, quality of life and long-term outlook for all individuals affected by Duchenne muscular dystrophy through research, education, advocacy and compassion.

� Parent Project Muscular Dystrophy 2008 — All Rights Reserved.
158 Linwood Plaza, Suite 220 Fort Lee, NJ 07024

Help Coach to Cure. Donate today.
Forward to a friend. Was this e-mail forwarded to you? Subscribe today.
Unsubscribe

#21529

From: Brenda <BracinKnee@...>
Date: Mon Oct 20, 2008 6:43 am
Subject: MJ Update: Projects, Flu Shots, and Exhaustion

bshanson68

Offline

Hi everyone:

Another week down and only 4 weeks to go! It has been a long week but I made it. The weekend is almost over and I am almost done with my Rehab Project (due 10/30), done with my Bibliography (7 pages, due 10/21), and have more ideas for my speech to the Medical conference I have to speak at (10/31).

I registered for Winter Classes on Tuesday. I will be taking (starting in January) 18 credit hours. I am taking Rehabilitation Resources (the class I had to drop last year while in the hospital), Rehabilitation Casework, Sociology of Deviant Behavior, Sex, Drugs and HIV, and Free Speech: Past and Present. I have class every day except Friday’s!!! How exciting! On Monday, I only have one class from 4 to 7pm – I hope I can wake up in time for it. Tuesday and Thursday’s I have two classes from 12:20 to 2:00pm and then 4:10 until 5:50pm. Wednesday is a split day. Normally I will only have class from 4 to 7pm, but on three of the Wednesday’s I will also have a class from 11am until 2pm. So my earliest class will be the 11am until 2pm. =2 0Not too bad since this past weekend, I have been waking up or getting woken up at 1pm! OOPS, guess I’m tired.

My health this past week has been, okay I guess. I did call the pulmo doc to ask about starting an antibiotic after aspirating my day glow, Charlie Brown pumpkin medicine. He wanted a sputum sample and boy oh boy did I give him one. Woke up Wednesday morning and did a cough session and almost filled up the whole sterile suction container. They asked and I delivered. Of course, due to much confusion, I didn’t get to start my antibiotic until yesterday (luckily I have Zithromax at home and used that until the Cipro came in).

Other than all that, last week I sent out 7 blankets, one of our weekly records. We have sent out 10 so far this month and already have another one ready to go out this week. In B4SMA news, we are sad to say that one of our kids passed away yesterday, she was only 9 months old. There are still many sick kids who have SMA out there this week. The flu is making a bigger showing so please be safe and get a flu shot. If you want to visit me over the holidays, you must20have your flu shot before hand (BIG HINT TO MY FAMILY!!!)

This week I have 2 tests and a pop quiz in my Communication class. Next Sunday is the FSMA OKI annual Halloween skating party. I bet you can’t wait to see my Halloween costume…just think dark! LOL!

Until next week, hugs and prayers to all!
MJ

Quote of the week: Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has. ~Margaret Meade

#21528

From: John Herrmann <johnrsf@...>
Date: Sat Oct 18, 2008 1:35 am
Subject: New Blog Post

johnrancho

Offline

Check out my new blog post. www.johnrsf.blogspot.com

John

There is no cure for birth and death save to enjoy the interval.
--George Santayana(1863-1952)

My E-Mail: johnrsf@...

My Blog: www.johnrsf.blogspot.com

My Website: www.geocities.com/johnrsf@...

Yahoo IM:johnrsf@...

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#21527

From: Brenda <BracinKnee@...>
Date: Sun Oct 12, 2008 10:33 pm
Subject: MJ Update

bshanson68

Offline

The new update: Major Reflux, Pumpkin Meds, and Girls Night Out

go to http://www.caringbridge.org/ny/mjpurk

Brenda
caregiver to MJ, 20, SMA type 1

http://www.our-sma-angels.com/Margaret/ - MJ's website
http://www.our-sma-angels.com/b4sma - MJ's organization

"Far away in the sunshine are my highest aspirations.
I may not reach them, but I can look up and see their beauty,
believe in them, and try to follow where they lead."
~Louisa May Alcott~

McCain or Obama? Stay updated on coverage of the Presidential race while you browse - Download Now!

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#21526

From: "Corey" <coreyk@...>
Date: Wed Oct 8, 2008 6:22 am
Subject: New Blog Post 10/07/08 - Regrets; OUCH!!!; Kevin Goessling

disdg

Offline

Read my latest blog post:

@ Dis Life

Corey

#21525

From: "Diane" <dpro@...>
Date: Mon Oct 6, 2008 7:13 pm
Subject: Re: This group for friendship and intimacy

dianeproc

Offline

I think the political discussions here of late are pretty healthy and respectful. In this political climate it's important to hear ALL sides of the issues that each of us feel are important. I don't agree with many on this list politically but I respect them non the less.

I think people should listen, think, research, and debate then VOTE!

I love one thing about this election, and that is that it has made many people that are not very political take notice and pay attention to what is happening in our great land. That's a good thing.

Diane

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

From: who let the dogs out?

To: MD-List@yahoogroups.com

Sent: Monday, October 06, 2008 1:34 PM

Subject: [MD-List] This group for friendship and intimacy

This group for friendship and intimacy

Hello

I am looking for members that have mainly physical disability and have
a positive outlook on life,that Are not into all this political
correctness and complain about handicapped parking,,More important
things in life..

This group in now almost six years old and there over 1,700 members
with all kinds of disability and from all country's

All I ask of members is to have information on there profile..and of
course no flaming of any members...You can disagree with someone,but
without making it personal....

As said I am mainly looking for members that have a positive out look
on life and dealing with your disability and different..

I myself was born with spina bifida and use wheelchair...

http://groups.yahoo.com/group/INTIMACYFORTHEDISABLED/

Reply | Forward | Messages in this Topic (2)

#21524

From: "who let the dogs out?" <chris1h23@...>
Date: Mon Oct 6, 2008 6:34 pm
Subject: This group for friendship and intimacy

chris1h23

Offline

This group for friendship and intimacy

Hello



I am looking for members that have mainly physical disability and have
a positive outlook on life,that Are not into all this political
correctness and complain about handicapped parking,,More important
things in life..

This group in now almost six years old and there over 1,700 members
with all kinds of disability and from all country's

All I ask of members is to have information on there profile..and of
course no flaming of any members...You can disagree with someone,but
without making it personal....

As said I am mainly looking for members that have a positive out look
on life and dealing with your disability and different..

I myself was born with spina bifida and use wheelchair...

http://groups.yahoo.com/group/INTIMACYFORTHEDISABLED/

Reply | Forward | Messages in this Topic (2)

#21523

From: John Herrmann <johnrsf@...>
Date: Thu Oct 2, 2008 11:27 pm
Subject: New Blog Post

johnrancho

Offline

Check out my new blog post www.johnrsf.blogspot.com

Peace,

John

There is no cure for birth and death save to enjoy the interval.
--George Santayana(1863-1952)

My E-Mail: johnrsf@...

My Blog: www.johnrsf.blogspot.com

My Website: www.geocities.com/johnrsf@...

Yahoo IM:johnrsf@...

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#21522

From: "Susan" <leemillers@...>
Date: Wed Oct 1, 2008 12:48 pm
Subject: CureCMD Website Announcement

sleemiller1

Offline

Now announcing......Cure CMD!!!!!

We are excited to announce the official arrival of the Cure CMD website, www.curecmd.org! We welcome you to go to the site, browse through the stories, review the recent research news, participate in the forums and provide feedback on what we can do to improve the site. To access the forum, you will need to register. You will
receive a confirmation, then acceptance email inviting you to log on
as a member.

Cure CMD emerged from a shared vision to find a treatment or cure for the Congenital Muscular Dystrophies. The Cure CMD team of parents, professionals and volunteers have made tremendous progress in 2008; accomplishments so far include setting up the non-profit charity, developing relationships with researchers and doctors around the world, developing the website, organizing a registry and scheduling our first international research conference next year. We have found that there are many potential treatment options that we are reviewing that could help those with Congenital Muscular Dystrophy, with focus and financial backing we will be successful in bringing these treatments forward. Cure CMD is a 501(c)(3) registered non profit charity and tax deductible contribution can either be made online or by check (address on the Donate page of curecmd.org).

I would like to personally thank those of you who submitted some very touching, heartfelt stories of your children (or you) to be featured on the website. Without you, our site would not be successful. We always welcome more stories at any time. Thank you for taking the time to share your or your family's story.

How else can I help?
Our goal is to raise to money to find a treatment/cure for CMD. Please encourage friends, family, neighbors, co-workers, your hair stylists, community members, and any other acquaintances you have to donate to Cure CMD. To help make this process easier for you, we are attaching a letter. Feel free to copy and personalize to help you solicit donations. While we cannot do all the fundraising ourselves, we can and will give you ideas on how to raise money for Cure CMD, and we think it's a good opportunity with our official launching to do the letters. If anyone has problems opening the letter, please let me know right away. Please send your letters to as many people as you possibly can. If you or your child is featured on our website, you could even mention something like "check out this website to see ___!" You could save the postage by copying/pasting the letter into your email address book instead and then people can click on the link right
away!

We will continue to give you ideas for fundraising along the way, but most importantly, please remember we cannot do this without you. If you have ideas on raising donations, please share them with the rest of us, so we can work with each other and find a treatment/cure for CMD. Our goal this month is to "get the word out!" about Cure CMD.

Another way to help is to go to www.curecmd.org and register yourself or your family member. Follow the register now link on the main page. Registering helps build the database that will become our CMD patient registry. Please send the following information, you or your child's: name, year born, type of CMD, genetic mutation if known and geographic location. Clinical trials to test medical therapies cannot happen without a registry. For questions about clinical trials or the registry go to the tabs across the top of the website. Registering with Cure CMD will allow us to send you periodic updates and notices of fundraising campaigns. Please indicate if you do not wish to receive that information.

What can I find on the website? Stories/pictures of individuals affected by various types of CMD. CMD research news, which is updated every 2 weeks. Upcoming medical conferences and upcoming fundraisers. (again, if you are planning a fundraiser in your city, let us know and we'll be happy to post it on the website!) Various resources to help you (for example, a FAQ on manual wheelchairs vs power wheelchairs), Disease information, and information about Cure CMD.

Where can I ask a question about the site?
Please send an email to info@curecmd.org with questions or comments. Please include your contact information with your questions or comments. If you would like to recommend something be on the site that may help someone, please let us know as well. We are always looking to add to our Resource section, Our Stories, and Equipment Loaner Closet. You are always welcome to join the Forum to participate in any discussions regarding the various topics as well.

Again, we welcome you to curecmd.org! We encourage you to help "get the word out!" Please help us make Cure CMD a success story and contribute to fighting for yourself or your child's future.

Richard Cloud,
Chairman

[Non-text portions of this message have been removed]

#21521

From: BracinKnee@...
Date: Mon Sep 29, 2008 12:41 am
Subject: MJ Update - 14 Classes, 1 Infection, & 6 Words

bshanson68

Offline

Hi everyone:

Another week and another update, can you believe it. I am trying to stay up-to date, but I am busy.

So, I did get another V-Cue mattress back. The bad news is that there are very few V-Cue mattresses left in the country, so once they are gone, they are gone. Now , I have to start shopping for something similar from another company. The temporary mattress was okay for me but Brenda hated it. It took Brenda a lot longer to get me ready for anything because I just sank into the mattress. I did sleep better so that was helpful.

Monday I went and saw a new family doctor. I was impressed and liked her (still not as great as Dr. Proskin). I told her why I picked her and what I expected from her and she was okay with it. We talked about all of my meds that I currently take and she was familiar with most of them and agreed with me taking them. I had an EKG done and it was normal and we will do them yearly to make sure all is right with my heart (if you are wondering, don’t worry, I hav e no heart issues, but this is why we are doing EKG’s: ( http://www.fightsma.org/blog/sma-science-research/bach-studies-autonomic-dysfunction-in-sma-patients.html ). My doctor also gave me my yearly flu shot. It is early, but the CDC said that the flu is starting early so I am taken care of already. I just hope this year’s flu shot is more effective than last years.

Classes are going okay. I have two tests this week, so I stayed home all weekend. My group for Sociology is becoming a pain (I think you can guess where). I am trying to work with them, but they meet alone and they tell me what to do, I am working on it. Frustrating to say the least. Rehab class is going good. So far it seems pretty straight forward and review. My group in rehab is going good. We20work well together. I have a test in here Thursday, so will let you know how that goes. (My other test is in Sociology). My Counseling class is okay. We did move classrooms so we are a little more spread out and that is better. It is funny, after 2 hours of lecture, the professor shows a movie and we can stay if we want to or leave – I leave. The movie isn’t on the tests, so why bother! LOL! My online communication class is okay. The class is fine, but there are so many issues going on with getting it set up that it drives you crazy. I have my autobiography done, but now have to write the 4 pages that go with the 6 words. I’ll share next week.

Guess what, I finally got the phone call to go get fitted for my manual chair…three years later. My chair is in and almost ready. Whoo hooo! I had a three hour fitting Friday. It should be done this week, if the guy can make a tray this week. If, not it will be here soon enough. I loved the seat cushion, it felt like I was sitting on a cloud. Here are a few pictures - http://b4sma.shutterfly.com/5450

Unfortunately, I am not feeling great. Friday, I was really off and having trouble digesting food and was extremely congested. I am digesting food now, but am just feeling crappy. I have a sinus infection and who knows what else. I am knocking on wood, really hard now, but it almost feels like last January when I had the flu. I am so glad for my trach right now. It is blocking all the sinus crap from draining into my lungs – it just heads to my stomach. I have a dentist appointment tomorrow morning so it should be interesting. I have been resting and doing homework and working on websites.

Please say prayers for all my friends who are hospitalized, sick, or under the weather. (http://our-sma-angels.com/b4sma/prayers.htm ). This year’s cold and flu season is starting way too early this year. Don’t forget to get your flu shot and please, don=E 2t share your germs with others.

Love,
MJ

Quote of the week:
There is no medicine20like hope, no incentive so great, and no tonics so powerful as expectation of something better tomorrow. -O. Swett Marden

Find phone numbers fast with the New AOL Yellow Pages!

#21520

From: Brian Denger <denger2@...>
Date: Sat Sep 27, 2008 10:29 pm
Subject: MD CARE Act passes!

adenger

Offline

The MD CARE Act passed for the second time today in the House of Representatives. This leaves only the President's signature to enact the law.

The law ensures the continuation of the Paul D. Wellstone Centers of Excellence for MD research and adds the National Heart Lung and Blood Institute as a partner along with the National Institute of Neurological Disorders and Stroke and the National Institute of Arthritis, Musculoskeletal and Skin Diseases. Additionally new provisions are added to improved epidemiological data collect as the natural history of the disorder changes and seeks the development and dissemination of care considerations for DMD. The current trend to move research to therapies more quickly will be expanded by making promising research eligible for "Fast Track" consideration.

The Senate passed the bill under "Unanimous Consent" and the bill passed in the House earlier this week 418-2. Please take a few minutes to visit your members' websites, call their offices or send an e-mail to thank them for supporting this vital legislation. To find your member and their web page go to the links below or paste in your browsers address bar.

http://www.house.gov
http://www.senate.gov

Brian Denger
Maine

Find phone numbers fast with the New AOL Yellow Pages!

#21519

From: Brian Denger <denger2@...>
Date: Fri Sep 26, 2008 8:08 pm
Subject: Re: MD CARE Act follow-up (addendum)

adenger

Offline

The Senate passed a the MD CARE Act today with minor changes by Unanimous Consent. Because the bill is not exactly the same as the House version another vote must be held in the House to approve the newer version. PPMD is working diligently to secure passage. We are so close, yet it is not over and the bill still needs the President's signature to go into law.

Brian Denger

-----Original Message-----
From: Brian Denger <denger2@...>
To: denger2@...; MD-List@yahoogroups.com; dmdsupport@yahoogroups.com; Duchenne_Muscular_Dystrophy@yahoogroups.com
Sent: Wed, 24 Sep 2008 9:16 pm
Subject: MD CARE Act follow-up (addendum)

One other possibility exists which is the House bill may be introduced to the Senate precluding the need for the Senate version to be moved from Committee...

If this happens I will post more.

Brian Denger
Maine

Just a quick note to let all know the reauthorization of the MD CARE Act passed in the House today 418-2. If you took time to call your Representatives Thank You!

Now we must wait for the Senate to move it from the HELP Committee and to the floor for a vote.

Brian Denger
Maine

The reauthorization of the MD CARE Act passed another hurdle today favorably leaving the House Energy and Commerce Committee. Thanks to the PPMD Advocates and Ryan Lochte for promoting the need to pass this legislation. It is hoped the legislation will go to the floor for a vote next week. Stand by for more news or visit the PPMD website and new Community Site and go to the Advocacy discussion in the Discussion Forum (http://community.parentprojectmd.org/forum)!

Brian Denger
Maine

Looking for spoilers and reviews on the new TV season? Get AOL's ultimate guide to fall TV.

Find phone numbers fast with the New AOL Yellow Pages!

#21518

From: Kmmx2@...
Date: Thu Sep 25, 2008 7:50 pm
Subject: Re: MD CARE Act follow-up (addendum)

Kmmx2@...

Actually I'm surprised that Ron Paul did not support it since he's an obstetrician. Wow! No biggie since almost everyone else is for it. Good News!
kathy

-----Original Message-----
From: Brian Denger <denger2@...>
To: MD-List@yahoogroups.com
Sent: Thu, 25 Sep 2008 9:32 am
Subject: Re: [MD-List] MD CARE Act follow-up (addendum)

No surprise.

Brian

-----Original Message-----
From: Pat Furlong <pat@parentprojectmd.org>
To: MD-List@yahoogroups.com
Sent: Wed, 24 Sep 2008 9:54 pm
Subject: Re: [MD-List] MD CARE Act follow-up (addendum)

Ron paul
Jeff flake (az)

----- Original Message -----
From: MD-List@yahoogroups.com <MD-List@yahoogroups.com>
To: MD-List@yahoogroups.com <MD-List@yahoogroups.com>
Sent: Wed Sep 24 21:44:28 2008
Subject: Re: [MD-List] MD CARE Act follow-up (addendum)

Brian,

Do you know the names of the two house members who did not vote for the MD Care act?

Thanks,

Jeff Marsh

--- On Wed, 9/24/08, Brian Denger <denger2@netscape.net> wrote:

        From: Brian Denger <denger2@netscape.net>
        Subject: [MD-List] MD CARE Act follow-up (addendum)
        To: denger2@netscape.net, MD-List@yahoogroups.com, dmdsupport@yahoogroups.com, Duchenne_Muscular_Dystrophy@yahoogroups.com
        Date: Wednesday, September 24, 2008, 8:16 PM


        One other possibility exists which is the House bill may be introduced to the Senate precluding the need for the Senate version to be moved from Committee...

        If this happens I will post more.

        Brian Denger
        Maine




        -----Original Message-----
        From: Brian Denger <denger2@netscape. net>
        To: denger2@netscape. net; MD-List@yahoogroups .com; dmdsupport@yahoogro ups.com; Duchenne_Muscular_ Dystrophy@ yahoogroups. com
        Sent: Wed, 24 Sep 2008 9:12 pm
        Subject: MD CARE Act follow-up


        Just a quick note to let all know the reauthorization of the MD CARE Act passed in the House today 418-2. If you took time to call your Representatives Thank You!

        Now we must wait for the Senate to move it from the HELP Committee and to the floor for a vote.

        Brian Denger
        Maine


        -----Original Message-----
        From: Brian Denger <denger2@netscape. net <mailto:denger2@netscape.net> >
        To: denger2@netscape. net <mailto:denger2@netscape.net> ; MD-List@yahoogroups .com <mailto:MD-List@yahoogroups.com> ; dmdsupport@yahoogro ups.com <mailto:dmdsupport@yahoogroups.com> ; Duchenne_Muscular_ Dystrophy@ yahoogroups. com <mailto:Duchenne_Muscular_Dystrophy@yahoogroups.com>
        Sent: Wed, 17 Sep 2008 4:48 pm
        Subject: MD CARE Act follow-up


        The reauthorization of the MD CARE Act passed another hurdle today favorably leaving the House Energy and Commerce Committee. Thanks to the PPMD Advocates and Ryan Lochte for promoting the need to pass this legislation. It is hoped the legislation will go to the floor for a vote next week. Stand by for more news or visit the PPMD website and new Community Site and go to the Advocacy discussion in the Discussion Forum (http://community. parentprojectmd. org/forum <http://community.parentprojectmd.org/forum> )!

        Brian Denger
        Maine
        ________________________________

        Looking for spoilers and reviews on the new TV season? Get AOL's ultimate guide to fall TV <http://television.aol.com/feature/fall_tv?ncid=aoletv00050000000037> .
        ________________________________

        Find phone numbers fast with the New AOL Yellow Pages <http://yellowpages.aol.com/?NCID=emlweusyelp00000001> !
        ________________________________

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Find phone numbers fast with the New AOL Yellow Pages!

#21517

From: Brian Denger <denger2@...>
Date: Thu Sep 25, 2008 1:32 pm
Subject: Re: MD CARE Act follow-up (addendum)

adenger

Offline

No surprise.

Brian

-----Original Message-----
From: Pat Furlong <pat@...>
To: MD-List@yahoogroups.com
Sent: Wed, 24 Sep 2008 9:54 pm
Subject: Re: [MD-List] MD CARE Act follow-up (addendum)

Find phone numbers fast with the New AOL Yellow Pages!

#21516

From: "Pat Furlong" <pat@...>
Date: Thu Sep 25, 2008 1:54 am
Subject: Re: MD CARE Act follow-up (addendum)

pat@...

Ron paul
Jeff flake (az)

----- Original Message -----
From: MD-List@yahoogroups.com <MD-List@yahoogroups.com>
To: MD-List@yahoogroups.com <MD-List@yahoogroups.com>
Sent: Wed Sep 24 21:44:28 2008
Subject: Re: [MD-List] MD CARE Act follow-up (addendum)

Brian,

Do you know the names of the two house members who did not vote for the MD Care act?

Thanks,

Jeff Marsh

--- On Wed, 9/24/08, Brian Denger <denger2@...> wrote:

        From: Brian Denger <denger2@...>
        Subject: [MD-List] MD CARE Act follow-up (addendum)
        To: denger2@..., MD-List@yahoogroups.com, dmdsupport@yahoogroups.com, Duchenne_Muscular_Dystrophy@yahoogroups.com
        Date: Wednesday, September 24, 2008, 8:16 PM


        One other possibility exists which is the House bill may be introduced to the Senate precluding the need for the Senate version to be moved from Committee...

        If this happens I will post more.

        Brian Denger
        Maine




        -----Original Message-----
        From: Brian Denger <denger2@netscape. net>
        To: denger2@netscape. net; MD-List@yahoogroups .com; dmdsupport@yahoogro ups.com; Duchenne_Muscular_ Dystrophy@ yahoogroups. com
        Sent: Wed, 24 Sep 2008 9:12 pm
        Subject: MD CARE Act follow-up


        Just a quick note to let all know the reauthorization of the MD CARE Act passed in the House today 418-2. If you took time to call your Representatives Thank You!

        Now we must wait for the Senate to move it from the HELP Committee and to the floor for a vote.

        Brian Denger
        Maine


        -----Original Message-----
        From: Brian Denger <denger2@netscape. net <mailto:denger2@...> >
        To: denger2@netscape. net <mailto:denger2@...> ; MD-List@yahoogroups .com <mailto:MD-List@yahoogroups.com> ; dmdsupport@yahoogro ups.com <mailto:dmdsupport@yahoogroups.com> ; Duchenne_Muscular_ Dystrophy@ yahoogroups. com <mailto:Duchenne_Muscular_Dystrophy@yahoogroups.com>
        Sent: Wed, 17 Sep 2008 4:48 pm
        Subject: MD CARE Act follow-up


        The reauthorization of the MD CARE Act passed another hurdle today favorably leaving the House Energy and Commerce Committee. Thanks to the PPMD Advocates and Ryan Lochte for promoting the need to pass this legislation. It is hoped the legislation will go to the floor for a vote next week. Stand by for more news or visit the PPMD website and new Community Site and go to the Advocacy discussion in the Discussion Forum (http://community. parentprojectmd. org/forum <http://community.parentprojectmd.org/forum> )!

        Brian Denger
        Maine
        ________________________________

        Looking for spoilers and reviews on the new TV season? Get AOL's ultimate guide to fall TV <http://television.aol.com/feature/fall_tv?ncid=aoletv00050000000037> .
        ________________________________

        Find phone numbers fast with the New AOL Yellow Pages <http://yellowpages.aol.com/?NCID=emlweusyelp00000001> !
        ________________________________

        Find phone numbers fast with the New AOL Yellow Pages <http://yellowpages.aol.com/?NCID=emlweusyelp00000001> !

#21515

From: Jeff Marsh <jcmarsh_usa@...>
Date: Thu Sep 25, 2008 1:44 am
Subject: Re: MD CARE Act follow-up (addendum)

jcmarsh_usa

Offline

Brian,

Do you know the names of the two house members who did not vote for the MD Care act?

Thanks,

Jeff Marsh

--- On Wed, 9/24/08, Brian Denger <denger2@...> wrote:

From: Brian Denger <denger2@...>
Subject: [MD-List] MD CARE Act follow-up (addendum)
To: denger2@..., MD-List@yahoogroups.com, dmdsupport@yahoogroups.com, Duchenne_Muscular_Dystrophy@yahoogroups.com
Date: Wednesday, September 24, 2008, 8:16 PM

One other possibility exists which is the House bill may be introduced to the Senate precluding the need for the Senate version to be moved from Committee...

If this happens I will post more.

Brian Denger
Maine

-----Original Message-----
From: Brian Denger <denger2@netscape. net>
To: denger2@netscape. net; MD-List@yahoogroups .com; dmdsupport@yahoogro ups.com; Duchenne_Muscular_ Dystrophy@ yahoogroups. com
Sent: Wed, 24 Sep 2008 9:12 pm
Subject: MD CARE Act follow-up

Just a quick note to let all know the reauthorization of the MD CARE Act passed in the House today 418-2. If you took time to call your Representatives Thank You!

Now we must wait for the Senate to move it from the HELP Committee and to the floor for a vote.

Brian Denger
Maine

-----Original Message-----
From: Brian Denger <denger2@netscape. net>
To: denger2@netscape. net; MD-List@yahoogroups .com; dmdsupport@yahoogro ups.com; Duchenne_Muscular_ Dystrophy@ yahoogroups. com
Sent: Wed, 17 Sep 2008 4:48 pm
Subject: MD CARE Act follow-up

The reauthorization of the MD CARE Act passed another hurdle today favorably leaving the House Energy and Commerce Committee. Thanks to the PPMD Advocates and Ryan Lochte for promoting the need to pass this legislation. It is hoped the legislation will go to the floor for a vote next week. Stand by for more news or visit the PPMD website and new Community Site and go to the Advocacy discussion in the Discussion Forum (http://community. parentprojectmd. org/forum)!

Brian Denger
Maine

Looking for spoilers and reviews on the new TV season? Get AOL's ultimate guide to fall TV.

Find phone numbers fast with the New AOL Yellow Pages!

Find phone numbers fast with the New AOL Yellow Pages!

#21514

From: Brian Denger <denger2@...>
Date: Thu Sep 25, 2008 1:16 am
Subject: MD CARE Act follow-up (addendum)

adenger

Offline

Looking for spoilers and reviews on the new TV season? Get AOL's ultimate guide to fall TV.

Find phone numbers fast with the New AOL Yellow Pages!

#21513

From: Brian Denger <denger2@...>
Date: Thu Sep 25, 2008 1:12 am
Subject: MD CARE Act follow-up

adenger

Offline

Looking for spoilers and reviews on the new TV season? Get AOL's ultimate guide to fall TV.

Find phone numbers fast with the New AOL Yellow Pages!

#21512

From: "Corey" <coreyk@...>
Date: Wed Sep 24, 2008 11:04 am
Subject: New Blog Post 09/24/08 - Fading Away; Bro Update

disdg

Offline

Read my latest blog post:

@ Dis Life

Corey

#21511

From: BracinKnee@...
Date: Wed Sep 24, 2008 2:08 am
Subject: MJ Update - Check out Center for Courageous Kids Family Camp at onetruemedia.com

bshanson68

Offline

See Center for Courageous Kids - 2008 online.

	Come see Center for Courageous Kids - 2008

B4SMA has shared Center for Courageous Kids - 2008 with you, a montage created at One True Media.

A personal message from B4SMA:

Hi, here's a montage I created online at onetruemedia.com. At long last, it is finally here. The montage from camp. Warning, it is an hour long, so make sure you have plenty to drink and eat, along with a snack if you can make it clear through. A lot of the songs are the songs that were played during the camp dances. Please enjoy and have fun! Click on the link below to see it. You don't need to have an account.

Center for Courageous Kids - 2008

If clicking on the image or link does not work, copy and paste this link into your browser's address field: http://www.onetruemedia.com/shared?p=6f360380c6e30c0f57131f&skin_id=1602&pid=624&utm_source=otm&utm_medium=email

One True Media, Inc.
customercare@...
www.onetruemedia.com

Find phone numbers fast with the New AOL Yellow Pages!

#21510

From: Brian Denger <denger2@...>
Date: Tue Sep 23, 2008 12:49 am
Subject: Re: MD CARE Act follow-up

adenger

Offline

A vote is scheduled tomorrow, September 23, for the reauthorization of the MD CARE Act HR 5265. Please take time to call your House members' offices and urge them to support this excellent legislation or go to the following link for more information:

https://secure2.convio.net/ppmd/site/Advocacy?page=SplashPage&pagename=homepage&id=133&JServSessionIdr001=vkk5x28vt4.app6b

Brian Denger
Maine

Looking for spoilers and reviews on the new TV season? Get AOL's ultimate guide to fall TV.

Find phone numbers fast with the New AOL Yellow Pages!

#21509

From: "Terri" <momdmd@...>
Date: Mon Sep 22, 2008 3:56 pm
Subject: Re: Hello all, 9/11

imblueangel

Offline

I thought I answered this lol.

Ok, Nathan could eat when they are here, but he is "too busy" playing video games. About an hour or two after they leave, then he takes a break from that and wants to eat. After he eats he wants to "go to bed" but since he sleeps in his chair that means, pillow behind head, between knees, put up feet, turn bottom turn top, blanket turn off tv, turn off bed and any other little things that he thinks of before he lets me leave. I skipped all the 200 times he needs the urinal before he eats that he only goes 100cc if we are lucky. So then I spend the next couple hours running back and forth from what I am doing on the pc to him which is a pain, because I have to move the desk, and its a pain getting up off the chair to go help him. which is usually turning him. I start to dread getting up off the chair and then I procrastinate which of course means he has to call me again lol. I can't hear what he is saying because of the fan. Thats about every 1/2 hour.

Finally lately he has started asking to be put in bed at that point. So I have to drag all the pillows blankets out, help him sit up (sometimes) put his feet down so he can drive 3 feet over to the bed. I put him in bed, then go through the pillow thing again and finally get him turned right, and moved the arm first and all that. and 1/2 hour later he wants turned. This goes on till after 5:40 am, so then I have to tell him to wait sometimes because Christians bus comes at 6:08 and I have to get him up, dressed, in his chair, pray he doesn't need to go to the bathroom 5 min before the bus comes, cause he can't get done that fast, and finally get him off on the bus and then help Nathan who finally around 7 or 8 am stays asleep and I am wide awake. I swear as soon as I fall asleep he calls me. He absolutely knows I fell asleep and calls me lol. Heaven for bid I have to go to the store cause I sure didnt get more then an couple hours of sleep before my mom gets here and yes, thats another story onto itself because I feel stupid having to ask my mom to come and I am too tired but I can't expect her to wait till I get more sleep. chances are she's been running all day giving her friend rides or stuff like that.

And we don't even want to go into my own hormonal craziness due to my time of life which of course he DOESN'T want to know about. lol He'd rather think I'm just crazy.

;-)

Terri mom of Nathan 20, DMD, ADD Christian 11, DMD, ADHD Alex 16, DMD (3/29/91-4/2/07)
DMD = Duchenne Muscular Dystrophy
"The clock of life is wound but once, and no man has the power to tell just when the hands will stop... At late or early hour.. Now is the only time you own...
Live, love, toil with a will... Place no faith in time, for the clock may soon be still. ";

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

From: mzmrize039@...

To: MD-List@yahoogroups.com

Sent: Sunday, September 14, 2008 11:00 PM

Subject: Re: [MD-List] Hello all, 9/11

I wish I could get our aid to cook for my son. He won't eat anyone's cooking but mine, and I don't even cook that well, LOL. Vincent also has a bad habit of asking me to make him something in the middle of the night because he doesn't even get up until 1:00-6:00 pm. And I do mean one in the afternoon until six in the evening depending on how late he stays up in the morning. I get up to use the bathroom, and he's asking me to make him something to eat. But, I love him, so I do it. Besides, he needs to gain some weight.

Diana, mom to Vincent, age 19, with DMD

In a message dated 9/13/2008 2:42:11 A.M. Eastern Daylight Time, momdmd@comcast.net writes:

Usually the aids cook for the boys. Well, usually. Nathan has a bad habit of asking me to cook something at 2:30 am thus the 5 min or less really applies cause who wants to cook that late?

Psssst...Have you heard the news? There's a new fashion blog, plus the latest fall trends and hair styles at StyleList.com.

Reply | Forward | Messages in this Topic (7)

#21508

From: JoyceGlass@...
Date: Mon Sep 22, 2008 11:01 am
Subject: Community Choice Act S.799, H.R.1621

JoyceGlass@...

Here is more information about the Community Choice Act. It is Senate Bill 799. It was sponsored by Senator Tom Harkin has 21 co-sponsors.

Here is a link that shows which Senators are sponsoring the bill: http://www.govtrack.us/congress/bill.xpd?bill=s110-799

Here is a very good source for more information from the National Council on Independent Living: http://www.ncil.org/news/CCAActionHub.html

Here is a link that explains how the Community Choice Act will provide in home services to people with disabilities: http://www.arcmi.org/CommunityChoice%20Q&A.htm

The Community Choice Act establishes a national program of community-based attendant services and supports for people with disabilities, regardless of age or disability. This bill would allow the dollars to follow the person, and allow eligible individuals, or their representatives, to choose where they would receive services and supports. Any individual who is entitled to nursing home or other institutional services will now be able to choose where and how these services are provided.

COMMUNITY CHOICE ACT NOW!

Looking for simple solutions to your real-life financial challenges? Check out WalletPop for the latest news and information, tips and calculators.

#21507

From: "Tigger Greg" <greg1960@...>
Date: Mon Sep 22, 2008 2:44 pm
Subject: Monday, 9/22 7:30am pst

tiggers2000us

Offline

Good morning all,

Hope you had a good weekend and having a good day when you are reading this. It was 60 outside when i got in the front room at 6:30 to get in my power chair. 72 or so inside and looks to be a very nice first day of fall. We had a good weekend and i got out with Brian each day for some great walks. Saturday we walked all over the park here and watched a friend taking a trailer apart to get rid of it and bring a new trailer in. Then walked to long street behind the park and to the freeway , we live in a place like a island, the I-15 and I-40 on 2 sides and main street on the other so do not get a lot of cars out there and can walk all over. There are a lot of storage places, look shops for biulding cars and stuff and the dial a ride office and yard is there and on the other end of the street is the back end of the Barstow Mall, a use to be cool mall my dad built in 1976 and now is a almost ghost town for years. Just a few places in there now, a big sporting goods store, hair place, PT place and PAL (a place for kids for after school and weekends and run by the cops). I use to work in the mall from 80-86 and it was always full of stores and busy, owned a sandwich shop and book store there in the mid 90's and was there until the mall died off of real stores. We walked around the mall and up the front side back home and stopped to watch trains at the front wall of the trailer park and that was fun. Rosa came over later to tell us she was going to her bf's and she came back later that night, not sure how she could walk home as her bf said she had a lot of beer in her, lol, she came home and eat and was in bed and did not say a word, so that worked out good as i was in bed trying to sleep.

Sunday at 9am we started a walk and Brian wanted to take a longer walk so came back home to eat first and get me ready for a trip and then headed up the hill on main street and over across the tracks to the "other side" of the tracks which is a bad part of town i never get to and could see the trains from the other side and very close lots of the crews waved and sounded the horns and bells, was cool and we walked all the way down the road to the city owned fields there are always watering and saw a lot of wild life out there and saw a very big hawk. Was a lot of fun and did not get to hot until the way back on main street. Was a 6 miles trips. Brian is sore and hurting now but he said it was worth it and his trip he wanted to make on his day off.

Rosa fixed a very big meal and baked and cooked all day for it, she wanted to cook for her bf before he leaves on the first for 3 and a half months over seas for his trip. We had real southern fried chickend, red country mashed potatos, gravy, a green bean dish she made, corn on the cob and home made stuffing. She made butter milk biscuits and 2 cholo. cream pies. So a very good meal and there are 9 chicken parts left for today and Rosa is having biscuits and honey before going to work.

Got to watch a few movies and good tv shows this weekend and most of our races we watch. Over all a good weekend and i am not feeling too bad now, breathing is hard, but will get better as it warms up. I am so not wanted to have it cold again, well cool for us. lol.

Hope you have a great day :)

Greg