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All Blog Posts (1,704)


Staff
Impact of Re-authorization

I find it important to sometimes take a look back. The MD CARE Act of 2001 was passed and signed into law in record time.. 11months. It was introduced in February, 2001 and signed Dec. 2001. This legislation put MD on the radar screen of the NIH, Dept. of Defense and CDC. But more than that, it caused a philosophical shift in attitudes, ideas and possibilities. It stimulated reseach and industry interest and insisted on data collection and the development of Standards of Care (Care… Continue

Added by Pat Furlong on October 1, 2008 at 4:26pm — 2 Comments

Link to Blog

Hi all,

I have started a new blog for myself at http://mysonmyrainweatherreport.blogspot.com/. Check it out if you like.

Ivy

Added by Ivy Scherbarth on September 30, 2008 at 12:52am — 2 Comments

Thank you

I just wanted to say thanks to everyone here at this site.
It is so easy to forget that I am not alone in this fight.

Added by Eileen DeLong on September 26, 2008 at 12:00pm — 2 Comments


Staff
Advocacy

These last few days have been pretty wild. On Tuesday, the Paul D. Wellstone MD CARE Act passed the House of Representatives and sent to the Senate. For the last few days, PPMD, Cornerstone and Senate Committee staff have been in contact, negotiating and working to move the Bill forward. Today at 10:50 AM, we are on pins and needles waiting, hoping for good news that the Bill has passed the Senate. The bill then moves to back to the House and on to the President for signature. This has been an… Continue

Added by Pat Furlong on September 26, 2008 at 11:13am — 3 Comments

Welcome to Holland

WELCOME TO HOLLAND

byEmily Perl Kingsley.



c1987 by Emily Perl Kingsley. All rights reserved



I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......



When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans.… Continue

Added by Rhiannon Traigle on September 21, 2008 at 3:41am — 2 Comments

Pnuemonia vs. College classes

Tim has been ill- so ill they admitted him into the hospital on Monday afternoon and by Tuesday morning, he was in ICU for respiritory arrest. Get the full scoop at our College Mom's Blog.

Added by Dee on September 16, 2008 at 7:59pm — No Comments

A word from the College Kid's mom....

I have really enjoyed blogging the last month or so...and more so that I am going through college with my son, (only I don't get credit for it like he does). But I'm enjoying attending his classes anyhow. Although for the most part I feel so out of place- and wishing so much I can be 20-30 years younger again. Even most of the (graduate-students) instructors are so good looking!



However, the challenges that Tim has to go through while attending a great University like UF. Well, for… Continue

Added by Dee on September 13, 2008 at 1:30pm — No Comments

Looking through a glass onion

There are times I watch my boys from a distance and try to imagine what they are thinking. I realize they face challenges we can only imagine, yet I seek access to their world without being intrusive. I have to believe they have similar dreams and desires and try to catch glimpses by observing them when they are just being themselves.



Today I had one of those opportunities. Patrick had just gotten off the bus and I saw him at the end of the driveway. I peered out the window wondering… Continue

Added by Brian Denger on September 12, 2008 at 5:30pm — 7 Comments

Today was a blur!

I didn't have a moment to spare today. Started the day at 6:00. Got Brad on the bus by 7:30 and then Ben dressed and delivered to pre-school at 9:15. Since I didn't really have time to go home before my 10:00 appointment, I stopped at a coffee shop and had a delicious hot chocolate and read my devotional for today. I'm glad I took time for that.



My 10:00 appointment was at church with my pastor. Our church is huge so I had never really talked to him for any length of time but I… Continue

Added by Lisa Tepper on September 12, 2008 at 5:00am — 2 Comments

Our 25th Wedding Anniversary

Today is our 25th wedding Anniversary.



When we started out 25 years ago we never imagined that life would be is hard as it has been. If were not for God’s grace and mercy, which are given to us anew every day we would not have made it. There are so many times it would have been so easy for us to go our separate ways, but I cannot even begin to imagine walking this journey with any one else. While Muscular Dystrophy has placed a huge strain on our lives and our marriage, in many ways… Continue

Added by Susan Rathfelder on September 3, 2008 at 3:08pm — 3 Comments

College Mom's Blog

Come read about a College DMD kid & his mom

Life as mom who assist my 19 year old son through his college career. The up's and down & the laughters and the fustrations of being on a large Univeristy campus does have its challenges.

Added by Dee on September 3, 2008 at 11:17am — 4 Comments

First day of school

My baby went to kindergarten today. What a bittersweet moment. Has it been 5 years already? A part of me wanted to be sad and hold onto him but he was so excited about going that I had to be excited too. He wanted to ride the bus and I agreed, but the bus driver forgot to come by so I was able to take him to school. He had a wonderful day. His teachers are great. I can't believe all the things he is going to learn this year. A lot of people have asked me if I was ok with him starting school. I… Continue

Added by Lisa Tepper on August 27, 2008 at 10:55pm — 2 Comments

We're new....Does it ever get easier???

I copied this in from the other Parent Project message board and it was suggested I post here as well. So here it goes:



Hi,

Well, we're new to this game here. My son was diagnosed with DMD initially on April 21st (one week to the day of his 5th birthday). Official diagnosis confirmed based on genetic testing on June 10th - point mutation. We SIMPLY went to the doctor's for his kindergarten physical and through very casual conversation his nurse practicioner decided to run a… Continue

Added by Donna on August 27, 2008 at 9:02pm — 8 Comments

Great Weekend!

Brad's birthday week-end was so much fun. Carowinds was fairly crowded but we were able to ride most everything we wanted without waiting too long.



His party at The Little Gym was fantastic! We had about 16 kids ranging in age from 2 - 10 and they all had a blast. The staff there did a phenomenal job of getting everyone involved and helping them participate at their own level. Brad had so much fun we are thinking about letting him try karate or gymnastics there. Everything is… Continue

Added by Lisa Tepper on August 27, 2008 at 7:41pm — No Comments

Our Magical Mystery Tour

Traveling is often viewed by the "infrequent flier" as some wonderful activity filled with adventure. Whether by van, train or plane, my sons regularly log many miles. I suppose to an outsider, traveling is somewhat romantic, but add TSA foolishness, delays in airline service and the many other travel inconveniences and I see things a little differently.



My sons next regular appointments were at Cincinnati Children's Hospital Medical Center. Driving from Maine to Ohio is a roughly… Continue

Added by Brian Denger on August 25, 2008 at 10:00pm — 1 Comment

Brad's Birthday

Today is Brad's birthday and he is now 5 years old. I have been reminiscing about that night/early morning when my first-born came into this world. Everything went pretty well except that I was in labor a long time without really progressing and wound up having a C-section anyway. Brad had a giant head - enough said. Anyway, he was beautiful and perfect - 9 lbs. 13 oz. 21 inches long. And just like that my life changed and I was his mom.



I didn't know that my life, his life, our… Continue

Added by Lisa Tepper on August 23, 2008 at 1:22am — 1 Comment

the great Bernie Brillstein

Bernie Brillstein has passed away. He created the muppets, SNL, Ghostbusters and much much more. My husband was working for him when Anthony was diagnosed with DMD and he was so unbelievably compassionate and finanacially generous to our cause and to us personally. I want to take amoment to reflect on the passing of someone who's acitons will continue to live and take on a life of thier own.



He would be proud to know how much progress we have made since his intial support! May he… Continue

Added by Jill Castle on August 16, 2008 at 11:30pm — 1 Comment

Another day in the life.

This morning I got up before six and ran eight miles (A good run helps to clear the cobwebs from my head and prepares me for the day.). After I finished stretching and changed my shirt I began getting my sons out of bed. My wife, Alice, beat me to the shower, so I helped Matthew and Patrick change their clothes, take care of "business"and got them cereal for breakfast. By the time I had the boys' medicines and milk ready Alice and I changed roles. I took my shower (Having already sustained… Continue

Added by Brian Denger on August 15, 2008 at 9:41pm — 1 Comment

Medic Alert Bracelet Information

I get asked for this information quite often. I'm still getting used to this new site. I thought this might be a way for people to get at the information easily.



You can access the Medic Alert Website at

www.medicalert.org (US)

www.medicalert.ca (Canada)



They provide a bracelet that your son should wear at all times. My son wears his 24 7. I worked closely with my pediatrician and one of the medic alert nurses to determine what should be on the bracelet. My son's… Continue

Added by Christine Piacentino on August 13, 2008 at 6:29am — 5 Comments

What I know now. What I didn't know then.

What I know now after 10 years of Duchenne affecting my family.



Life with Duchenne is a roller coaster.



Hope is constant.



Duchenne does not define my son's life, my son define's his own life. Duchenne is just something we deal with.



It's really OK to question the Doctors and understand what they are doing and why they are doing it.



Sometimes I know more than the Doctor treating my son. I will need to provide Duchenne education to… Continue

Added by Christine Piacentino on August 12, 2008 at 8:52pm — No Comments

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