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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:


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

Conference Recap -Part 2.

Sitting in on the research sessions must feel a bit like betting on horses, feeling the need to take a side, pick one or perhaps two approaches and make some determination about the likelihood for success based on certain data. And it appears so much depends on the ‘code’ – the specific mutation, the particular horse you think is likely to win and where what will be required in terms of function in order to be a candidate for trial.

And then the word ‘clinical trial” is tossed around… Continue

Added by Pat Furlong on August 7, 2008 at 8:15pm — 3 Comments

Our little "Nemo fish"

I am sure most have seen the movie, Finding Nemo. We saw it when Micah was 2 something years old in the theaters when it came out in 2003. We pre-ordered it on DVD so we could get the 4 walnut framed art prints to decorate his room with. We got wooden blinds of Nemo for the big window in his room (to see what it looks like,… Continue

Added by MicahsDaddy on August 6, 2008 at 7:30pm — 7 Comments

My Boy, My Son.

I wrote this poem today, I wanted to share it with all of you.

My Boy, My Son - by Sharyn Thompson.

You were born on a Saturday, on a day so fine

I saw you, I held you, I loved you, you were mine

You had 10 tiny fingers and 10 tiny toes

Two perfect dimples and a sweet upturned nose.

Your daddy, he was besotted, he’d never known such joy

He’d waited his whole life for you, his perfect little boy

He’d show you the world, how to…

Added by Sharyn Thompson on August 5, 2008 at 5:00am — 8 Comments

Summer vacations and MDX Mice

The MDA summer camp my sons Matthew and Patrick have attended for several years has changed its format cutting the length of stay in half to accommodate those on a small waiting list. To be clear, this decision was made by the organization that operates the camp, not the MDA. My wife and I discussed the challenges of packing the boys' clothing, lift, Bi-Pap, Cough Assist and battery chargers for just four full days of camp. We then talked to Matthew and Patrick who agreed a two plus hour ride… Continue

Added by Brian Denger on August 3, 2008 at 10:24pm — 3 Comments

Adventures in Serial Casting . . . Round Two

Well, yesterday they casted his right foot. She checked his left foot and felt he hadn't lost too much range and still fit (just barely) into his night splint so we are going to let that one be for now. I am still hoping that somehow this will all sink in to Jonathan that we; his parents, the PT and his Dr. are just trying to help him the best we can. The rest is up to him. This could all be a big waste of time if he refuses to stretch and wear his AFOs. At 17 he has to learn that he does have… Continue

Added by Susan Rathfelder on July 31, 2008 at 7:10pm — 1 Comment

Good visit with Dr. Wong and Staff for my son, Alex

Hi all -

I am happy and thankful today and wanted to share. My husband and almost 9 year old son, Alex are in route back to California from a 2 day visit with Dr. Wong and staff. We are pleased that he is doing very well and on some tests a little better than last year. I have been on this rollercoaster for 4 years and it is nice when we have good days...like today.

I can't wait to hug my son tonight when he gets home!

Thanks for listening..


Added by Kim Maddux on July 31, 2008 at 7:05pm — 1 Comment

Happy Birthday!!!

My baby boys are 6 years old today!! Guess they're not really babies anymore. How on earth they're already 6, I don't know.

Not much planned for today. I'm sure we'll go to the pool. For dinner, they've picked IHOP. They've also asked for jello cakes tonight. I'll make 2 little ones since they couldn't agree on one flavor. Sam's is lime. Jake's is cherry. Their party is on Saturday at the fun pool at they Y. They're really looking forward to that. Mostly family coming, but we have… Continue

Added by Laurie Paschal on July 31, 2008 at 12:00pm — 4 Comments

PPMD Conference

After 14 years of holding conferences, writing a review should be relatively easy and in some ways it is. Parents and family members gather to learn, to find something, to understand better, to gain strength. Some are new to the diagnosis, the word Duchenne muscular dystrophy a recent addition to their vocabulary. They are raw, tender, bruised and brave making the decision to attend and commit three days of precious time. It is amazing to me to see the community, sitting, attentive, at times… Continue

Added by Pat Furlong on July 30, 2008 at 3:44pm — 7 Comments

Another opportunity to wear my "Run for Our Sons" jersey

Last weekend, I competed in a local sprint triathlon. This is my regular summer race date with my older brother, Norm. Heather was not going to be with me this race, which is very unusual, and I was feeling just a little off before the race.

So as I stood in in the cool morning, I was nervous, but knew I was ready...I had just completed the swim and run portion of a 1/2 iron man a couple weeks before. And then we were off.... my… Continue

Added by Jenny on July 28, 2008 at 5:30pm — 1 Comment

My training for Run For Our Sons

Well, another week of training has come and gone. The big moment for this week was a scheduled 12-mile run on Saturday. I wound up turning this into a 13-mile run. I ran from Palisades Park (where we were staying) to South Haven, Michigan (where I met Kristin and the boys for lunch) along the Blue Star Highway. Southwest Michigan is really a beautiful place. Especially for someone who grew up outside Chicago. Scenery makes these long runs much more enjoyable. No real problems on the run,… Continue

Added by John Hiatt on July 28, 2008 at 1:00pm — 4 Comments

Conference reflections

2008 marked my third PPMD conference, my second in Philly with hubby Brian. I can't begin to share how impressed I was with the progress of the presentations. Each speaker seemed aware of what had been said the year before, and seemed focused on sharing where they hoped to be next year.

I'm amazed at how much of a family the PPMD community is. I didn't introduce myself to everyone to whom I nodded (a personality flaw I blame squarely on my father) but I feel a camaraderie with my… Continue

Added by Gretchen on July 26, 2008 at 12:00am — 1 Comment

Managing "us"

O.K., so having our child diagnosed with Duchenne was not by choice, let alone having both sons affected. My wife, Alice, and I didn't ask to spend countless hours in waiting rooms, speaking to doctors (Some good, some...well..you know...), deciding what wheelchair is best and wondering whether insurance will cover it or taking a large chunk of savings and weekly salary to buy a gas guzzling accessible van. I'd rather not have to put up with people who stare at my sons, explain to family why we… Continue

Added by Brian Denger on July 25, 2008 at 7:54pm — 1 Comment

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