MD-List : Messages : 21493-21522 of 22639

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

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#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

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#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.

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#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.

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#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.

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#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

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#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

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#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!

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#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

#21506

From: JoyceGlass@...
Date: Mon Sep 22, 2008 8:52 am
Subject: Community Choice Act

JoyceGlass@...

http://www.adapt.org/casaintr.htm

The Community Choice Act would give people with disabilities more services (caregivers) in the home and community and would be an alternative to placing people in nursing homes. Get in touch with your senators and representatives and make sure they are behind this so we can get some more desperately needed help in our homes to care for our families. By the way, Barack Obama supports this legislation. John McCain does not.

Here is a link that gives more information about the Community Choice Act.

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

#21505

From: John Herrmann <johnrsf@...>
Date: Mon Sep 22, 2008 3:04 am
Subject: On-line dating

johnrancho

Offline

Hi all,

I'm making pretty good progress with my e-harmony match. We are now talking outside of e-harmony via email. I have revealed a lot about my disability, but she still wants to talk. That is a great sign. I feel upbeat. My question is, when should I start planning to meet her in person?

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@...

#21504

From: Brenda <BracinKnee@...>
Date: Sun Sep 21, 2008 4:18 am
Subject: MJ Update - Projects, Six Words, & Reconnecting

bshanson68

Offline

Hi everyone:

Are you amazed, it is Saturday and already a new update? Not much happened during the week, just homework and group projects to start.

I met my group for my Sociology project on Tuesday. I have a bunch of articles to go through and hopefully found enough information to write my portion of the paper. We have to do a 20 page paper that is due in November, but in October we have to have 20 professional references and write a one page summary of each article. There are 3 of us, so that is like 7 articles a piece. It isn’t too bad, just trying to get my group to work. My communications class is still going as planned. I have done 2 weeks worth and am going to do next weeks work on Monday. There is a quiz that I have to take by next Saturday, but I am going to try to get ahead in that class. The following week, I have to write my autobiography in=2 06 words. (http://www.smithmag.net/sixwords/). It looks like fun but what a challenge it will be. How do you sum up your life in 6 words? My Medical Aspects of Rehab class is going okay. Most of it is review for me so far. It goes over each body system and associated disorders, so far we have done the Nervous System with nothing much new. We have a group project in this class too. We have to give a presentation on a specific condition (no, we couldn’t choose our own) and my group picked end stage renal disease (not my idea). My group is pretty cool. We all get along so that is good. My counseling class is okay…the first 90 minutes is a lecture so that part of class is pretty boring then the rest is a movie and a group activity. So as of today, I only have 16 more days left of class!!

Frida y, Hill Rom did come over to replace my mattress, but only got the bed box, not a mattress. They misunderstood the message that my MATTRESS went up in smoke, not the box. SIGH! They took the bed away Friday and left me with nothing! They promised me a new mattress but it didn’t come until today. My cousin Kate came yesterday. She now goes to college in Cincinnati and we haven’t seen each other a lot in the past few years. We went out to dinner at Qdoba’s and laughed and laughed and had a great time while staying up way too late. This morning, the bed finally arrived, it is not the one that broke but a cheap make of an air mattress. I’ll let you know how it works and if I sleep better. We also we got TV back tonight! It’s amazing how much I missed it just as background noise. Kate left this afternoon. (Thanks for coming and can’t wait to hang out again!) Click here to see pictures: http://b4sma.shutterfly.com/5247
That is about it for now. Please send major prayers for my friends who are in the hospital already. Dani has influenza (yes, it is true, flu season already), Stella has a bad cold , Autumn who just got home after getting a G-tube, and Julia who also got home from the hospital too. Also prayers for anyone else who is under the weather and those who are still waiting to get power back after last weekend’s storm.

Love

Today’s quote:
You don't choose your family. They are God's gift to you, as you are to them. ~Desmond Tutu

Find phone numbers fast with the New AOL Yellow Pages!

#21503

From: "Terri" <momdmd@...>
Date: Fri Sep 19, 2008 4:02 pm
Subject: Re: FW: Google Alert - Muscular dystrophy

imblueangel

Offline

Wow.

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

From: Adele

To: dmdpioneers@yahoogroups.com ; dmdsupport@yahoogroups.com ; MD-List@yahoogroups.com

Sent: Wednesday, September 17, 2008 10:14 AM

Subject: [MD-List] FW: Google Alert - Muscular dystrophy

Even though Jason�s name wasn�t mentioned, he was the other young man with Ryan Lochte.

Adele

From: Marcnjulz@aol.com [mailto:Marcnjulz@aol.com]
Sent: Wednesday, September 17, 2008 8:50 AM
To: Jasona65@verizon.net
Subject: Fwd: Google Alert - Muscular dystrophy

In a message dated 9/17/2008 12:27:45 A.M. Pacific Daylight Time, googlealerts-noreply@google.com writes:

Adele, how many dmd kids? Was it Jason and Michael?

Google News Alert for: Muscular dystrophy

Swimmer wades into disease fight
Chicago Tribune - United States
Lochte said he is donating a portion of his endorsement earnings to Parent Project Muscular Dystrophy, a non-profit organization focused on individuals ...
See all stories on this topic

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

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#21502

From: John Herrmann <johnrsf@...>
Date: Fri Sep 19, 2008 2:44 am
Subject: New Blog Post 9/18

johnrancho

Offline

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

Peace,

John

#21501

From: "Adele" <jasona65@...>
Date: Thu Sep 18, 2008 12:20 pm
Subject: RE: Re:FW: Google Alert - Muscular dystrophy

navymom2josh

Offline

All in all, we both had a great time. it was very tireing, but I think that the effort will produce the desire effect with the signing of the re-authorization bill.

Adele

From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of Becky S.
Sent: Thursday, September 18, 2008 1:18 AM
To: MD-List@yahoogroups.com
Subject: [MD-List] Re:FW: Google Alert - Muscular dystrophy

Adele-

At least Jason was mentioned in the PPMD article. I enjoyed seeing that
Jason was able to go.

Becky S., missouri

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#21500

From: "Becky S." <oubecky@...>
Date: Thu Sep 18, 2008 5:17 am
Subject: Re:FW: Google Alert - Muscular dystrophy

bygracenotby...

Offline

Adele-

At least Jason was mentioned in the PPMD article.  I enjoyed seeing that
Jason was able to go.

Becky S., missouri

#21499

From: "Tigger Greg" <greg1960@...>
Date: Wed Sep 17, 2008 11:06 pm
Subject: Wed. 9/17

tiggers2000us

Offline

Hello all,

Hope you had a good day, it's almost 4pm here PST and not as hot, but feels like there are a lot of clouds and maybe rain out there now. Got up on time today and Brain to did not fight to have to wake me up and get me in my chair for the bath room lol. No bleeding today that we could see today and feels like my insides are so so now and not feeling the best. Every one is napping now and i am up alone for a bit more before Rosa has to get ready to cook supper, she is ficing them some kind of hamburger dish, i forgot what she picked and i am having eggplant in great sause and texas cheese toast i think that what i ordered, lol. All my lean pockets and good frozen healthy meals i like are gone and do not even have any pot pies left, so now i know i am doing bad lol. Today i had my my yogurt and banana and dinner was a good cheif salad and 2nd meal was the rest of my turkey sandwich, on a great health store bread and had a small small bag of chips and going to have to have a little more before dinner so i can take pain pills. Not in as much pain, but my insides are real bad today, part weather and how my body has been working of late.

Been very busy on line today and over 1,500 emails back i think and going to try and catch up when i put the other computer on my auto downloads for a few hours. Got a lot of my writing work done and watching lots of great stuff on tv and have not watched a dvd today. Have 3 movies to copy from netflix today, one for Rosa and Forbidden Kingdom and The Love Guru for me. I think my mom is coming over for dinner tonight and watch a movie i bet. Did not get out today and not sure when i will again, maybe if there is something we have to have or when Rosa gets paid next and the money clears, but do not think i have to spend until next month when i get paid. Been watching all the mess on the news and not sure how things are going now lol. Hope you all had the best day you could. I am feeling more sick than i was thinking :( oh well, will be in a good mood and enjoy the rest of the day and night. :)

Take care

*hugs*

Greg

#21498

From: Brian Denger <denger2@...>
Date: Wed Sep 17, 2008 8:48 pm
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.

#21497

From: "Adele" <jasona65@...>
Date: Wed Sep 17, 2008 2:14 pm
Subject: FW: Google Alert - Muscular dystrophy

navymom2josh

Offline

Even though Jason’s name wasn’t mentioned, he was the other young man with Ryan Lochte.

Adele

From: Marcnjulz@... [mailto:Marcnjulz@...]
Sent: Wednesday, September 17, 2008 8:50 AM
To: Jasona65@...
Subject: Fwd: Google Alert - Muscular dystrophy

In a message dated 9/17/2008 12:27:45 A.M. Pacific Daylight Time, googlealerts-noreply@... writes:

Adele, how many dmd kids? Was it Jason and Michael?

Google News Alert for: Muscular dystrophy

Swimmer wades into disease fight
Chicago Tribune - United States
Lochte said he is donating a portion of his endorsement earnings to Parent Project Muscular Dystrophy, a non-profit organization focused on individuals ...
See all stories on this topic

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

I am using the free version of SPAMfighter for home users.
SPAMfighter has removed 456 spam emails to date.
Paying users do not have this message in their emails.
Try SPAMfighter for free now!

Google News Alert for: Muscular dystrophy

Swimmer wades into disease fight
Chicago Tribune - United States
Lochte said he is donating a portion of his endorsement earnings to Parent Project Muscular Dystrophy, a non-profit organization focused on individuals ...
See all stories on this topic

This as-it-happens Google Alert is brought to you by Google.

Remove this alert.
Create another alert.
Manage your alerts.

#21496

From: "Tigger Greg" <greg1960@...>
Date: Tue Sep 16, 2008 7:55 pm
Subject: Tuseday 9/16 12:30pst

tiggers2000us

Offline

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

Hello all,

Hope you all had or having a good day and feeling the best you can. Yesterday at the doctor was very bad news, my blood thinner like was too high, worst i have been in almost 9 years, we try to keep it at 2.5 and it was 4.56 in the spring when i had to go to the er and was that again in Aug. and we changed meds and got it to 3.29 on Aug 18th and my 9/11 test was like 7.5 and the doctor lower the meds again and will test in 2 weeks, but should have sent me to get it check at the hospital again stat and stopped my meds and get me on vit. k,so i cut my med today and will go to 2.0 on my med and test in week and again next month and watch for bad signs it's too high and get to the hospital fast. Had very bad bleeding in the bath room today and i did stop, but was going to go and see my sister at the ER and get it checked out. So that my bad news, could bleed out at anytime until i get this lower, next time will ask for a test every week and for some vit. k. Eatting foods to lower now also. We have no clue how this has got out of control now. Diet is the same and cut all meds out in the spring that will bring it way up.

Rosa worked today and they are at the store now and due home soon, she is getting the last foods we need and stuff for a bigger dinner Sunday for her bf before he is out of the country for 3 months, she is going to house sit his house and feed the outside cats when he is gone, so i think she will be gone most nights here.

I got a lot done today and trying to get my class work going good and looking for home based jobs and helping a friend write a book about it and haave so much i want to get done and looks like i have 24 hours of stuff to do a day in the 14 hours or so i am on line. There are clouds moving in now and it might rain. I think it was like 105 or so out there now. I know we have the water cooler on high now and my fan is on low and you can feel the air is not as dry now. Hoping not to lose power, but have stuff i am writing today backed up on the other computer every few mins to be safe. Tonights dinner is sandwiches and/or left overs. Hope you all have a great rest of your day and night, take care. :)

*Hugs*

Greg

#21495

From: "Tigger Greg" <greg1960@...>
Date: Tue Sep 16, 2008 12:00 am
Subject: Re: Hello all, 9/11

tiggers2000us

Offline

Both of my aids can cook for me and Brian did when Rosa was gone for 2 weeks and he did the other night when Rosa was late getting back from watching a movie at her bf's house. I use to keep very odd hours and for a while from 97 to 99 i would stay up until i was too tired and sleep for 8-10 hours and do it again and not care what time i got to bed. Got a lot better when my now ex wife was here for 2 and a half years, would go to bed 8 hours before she had to go to work and sleep in on her days off. now for over the last year when Rosa started to work for a third person i had to get up at 5:10am every day and in bed at 8:30pm, not it was to be 5:40am and 9pm, but Brian is the day time aid always and gets me up at 5:20am or so and works out good, now if Rosa is going to her bf's house early i get put to bed at about 8:30pm or so and last night Rosa was going to her bf's early and washed me up at 7:30 and Brian put me to bed just after 9pm as we were watching a movie. Rosa is a great cook, before she got here i was fixing the meals and had to get my wife to eat much and i ended up with a lot of frozen meals.

*Hugs*

Greg

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

From: mzmrize039@...

To: MD-List@yahoogroups.com

Sent: Sunday, September 14, 2008 8:00 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)

#21494

From: Terri Can <plusterri@...>
Date: Mon Sep 15, 2008 5:19 pm
Subject: Re: an update from Cure CMD

plusterri

Offline

Please remove me from your site. It looks like my grand daughter has a form of dystonia. She is being put on a trial of dopomine to determine if she has "Dopamine Responsive Dystonia" I wish all of you the very best and may God bless you all.

--- On Sat, 9/13/08, Susan <leemillers@...> wrote:

From: Susan <leemillers@...>
Subject: [MD-List] an update from Cure CMD
To: mdaalltheway@yahoogroups.com, MD-List@yahoogroups.com, muscledisease@yahoogroups.com, ullrich_congenital_muscular_dystrophy@yahoogroups.com
Date: Saturday, September 13, 2008, 10:16 AM

Hi everyone,

Some of you may be aware of the group Cure CMD started by Anne Rutowski, a parent of a daughter w/ CMD and a few other parents of children w/ CMD. As Congenital Muscular Dystrophy affects only a small percent of people w/ Muscular Dystrophy, the goal is for people w/ the different types to join forces to find and fund high potential research and clinical trials for those with CMD. Please go to www.CureCMD. org for more information or to sign up for the patient registry. (I apologize for the duplications of this email for those who receive mailings from more than one group)

An update from Anne:

I will be attending a meeting bringing together 3 advocacy groups for the muscular dystrophies: Cure CMD, PPMD (parent project muscular dystrophy representing Duchenne and Becker) and MDF (myotonic dystrophy foundation). The agenda for the meeting will be focused primarily on advocacy, collaboration and education.

We will be choosing 3 signs or symptoms that best represent the childhood muscular dystrophies to be included in the CDC "Learn the Signs" campaign. The CDC campaign targets pediatricians and their offices with written material and links on their website to increase and expedite the diagnosis of childhood diseases. The childhood muscular dystrophies represent a varied spectrum from the congenital myotonic dystrophy to the CMD's to Duchenne/Becker muscular dystrophy. Even within the CMD subtypes there is great variability. As a parent, you have noticed signs that may or may not be included or prioritized in a review article on your child's subtype of CMD.

I am conducting an informal survey and am asking you as a parent to email me the top 3 signs or symptoms you first noticed in your child's presentation of CMD. Please also specify the age of diagnosis. Given the variability in the diseases I will need to come up with 3 signs that are most representative of the CMD's and these may be age specific as well.

In other words:
age 0-6 months: floppy baby (merosin deficient), hip dislocation (Ullrich), eye/brain abnormalities (dystroglycanopathi es)
abnormal CPK, breathing and feeding difficulties

age 6-12 months: abnormal white matter on MRI (merosin deficient)

The more descriptive symptoms that I gather that are age specific the easier the task will be to look for commonalities with the other dystrophies and put together a unified document that sheds light on the CMD's as well.

If you can take time in the next week, to sit down and send me your top 3 signs and symptoms with approx age you noticed them, I would greatly appreciate it. If you want to send more than 3 that would be most helpful. Send to anne_rutkowski@ hotmail.com

Thank you,

Anne Rutkowski
Vice Chair Cure CMD

Reply | Forward | Messages in this Topic (2)

#21493

From: "Tigger Greg" <greg1960@...>
Date: Mon Sep 15, 2008 2:18 pm
Subject: Good Morning Yahoo :)

tiggers2000us

Offline