PPMD Community

March 2010 Blog Posts (20)

My Idea of Normal

There some days when I think that my life is just not normal. When I start thinking this way I really need to remind myself that normal is a relative term. How a person deals with life is really defined by personal circumstances of their past and present life experiences intertwined.…

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Added by Christine Piacentino on March 28, 2010 at 10:00pm — No Comments

help

I looked down at the stairs leading to the Target Field baseball diamond. Sensing the leather front row seats calling to my son Josiah.

We watched momentarily as people climbed the stairs. Certainly getting

him down there would not require to much effort but the return trip up

would demand more muscle strength. Force I was not sure I might be

capable of. With out hesitation my Josiah was on his way down the steps

on the back of a…

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Added by Rita Felling on March 28, 2010 at 4:32am — 3 Comments

Here There and Everywhere, Part II

Some time ago I wrote a blog concerning people in my life who intuitively understand how to be friends to families like yours and mine dealing with Duchenne. We can all find someone who knows the right thing to say or do among

the many who do not. I describe them as people who "get

it". I've also written how we have raised our sons to be their own

Advocate. Recently we had a situation where none of the stars had aligned

and this situation is particularly…

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Added by Brian Denger on March 26, 2010 at 8:35pm — 1 Comment

Feeling like Cargo?

As a 25 year old with DMD you're going to be moved around a lot. There's a sling on me all day, and I'll need to moved out of bed, wheelchairs and off the toilet, everyday. With all this moving, and being 'plonked' into the chair or whatever, you can feel a bit like cargo, a cardboard box full of spanners. Sometimes arms get grazed, feet get whacked and you can feel less like a person. Don't get me wrong my mum does a supreme job, but sometimes it's a bit of rush for her, having to cook, clean,… Continue

Added by Ian Anthony Griffiths on March 26, 2010 at 2:14pm — 8 Comments

Willing to share?

For all of you wonderful ladies/moms that helped me with my research. I need your age and educational level. Highest degree earned. OR level of program you may be working on in school at this time. As you know, I will not share this information with anyone. Just need for my demographics. If yes, My personal email is donnajg23@yahoo.com. Or confidential phone # is 630-341-339. Donna

Added by Donna Gluck on March 25, 2010 at 2:06pm — No Comments

I am happy to say THANK YOU to all the boys and their mom. I have finished the data collection piece of my research! I want to give a special thank you in my acknowledgements. IF I have your permissi…

I am happy to say THANK YOU to all the boys and their mom. I have finished the data collection piece of my research!

I want to give a special thank you in my acknowledgements. IF I have your permission. I will be using only first names. I am compling the results and will keep you posted as to when it is published and in print! SINCERELY, Donna Gluck

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Added by Donna Gluck on March 22, 2010 at 3:27pm — No Comments

An hard days Night...

Not many know my nightly nightmares with suction but I just wanted to share my experiences to see if anyone can relate or just write it down to get it out of my system.

So every night (barring ten odd days in a year) before bed I and my mother have 1 maybe 1 and a 1/2 hours of chest suctioning before we can even contemplate getting in an actual bed. I don't look forward to it ever because I'm ready for sleeping. So at approx. 1:30am i shut down the comp for bed then i go upstairs in… Continue

Added by Ian Anthony Griffiths on March 18, 2010 at 9:47pm — 7 Comments

It only takes one thing....

Reading through my facebook updates as most of us do usually is a fun process of catching up with friends (most of mine from the Duchenne scene) and putting our ideas up for all to see.

Tonight I was reading through as normal but one sentence really struck me and hit hard. It was mentioning hugs and kissing. Somehow tonight I immediately thought of never having been kissed, I thought this may not happen either as im increasingly stuck at home. It made me feel so awful that I quietly… Continue

Added by Ian Anthony Griffiths on March 15, 2010 at 8:27pm — 2 Comments

Family noise

I recently returned from a conference flying home on a "red eye" flight arriving home early in the morning. These flights are well named. You never know how much sleep you'll get as you

are jetted across the country forced into an unnatural position that prevents

real sleep with God knows how many other interruptions that steal those

precious minutes of rest you so desperately want. For the main flight on

this particular journey…

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Added by Brian Denger on March 11, 2010 at 8:54pm — No Comments

HGH

has anyone had any adverse affects of the growth hormone?

Added by sandy on March 10, 2010 at 9:47pm — No Comments

Wind in My Sails

Wind in My Sails…

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Added by Christine Piacentino on March 10, 2010 at 7:00pm — 6 Comments

inside

I attended a basketball game at my

youngest sons charter school this evening. Part of the schools March

Madness celebration. I had managed to talk my Cody into joining Josiah

and I for the nights festivities. Upon entering the school Cody began

to show signs of feeling uncomfortable. It was his first visit back to

this school since he had graduated from the eighth grade last spring.

Feeling the need to encourage him I searched eagerly for teachers and

staff… Continue

Added by Rita Felling on March 10, 2010 at 12:00pm — No Comments

Staff Katrina Revisited

I don’t know about you but I felt last week the Duchenne community was hit with our own hurricane, similar to the 5^th deadliest hurricane in US history, 2005 Katrina. I’m not from New Orleans, but have a good friend, Diane, whose home was washed way when the levee system failed and neighboring parishes flooded. The 175 mile winds took everything - house, furniture, photos, memories, life as she knew it. While nearly 2,000 people lost their lives, her family…

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Added by Pat Furlong on March 8, 2010 at 11:57am — 14 Comments

Need advice on explaining Duchenne to my son

Hello: I am new to this blog and need some advice and tips on how to discuss the disease with my son who was diagnosed at the age of 2 and is now 8. We have never sat down and had a heart to heart discussion about why his muscles are weak and he cannot do things like riding a bike or skateboard and why he gets hurt so easily. I am never prepared for the questions he is now asking me. Keep in mind that he is developmentally behind and probably won't understand a long explanation. We need to…

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Added by Shana Creel on March 6, 2010 at 2:31pm — 3 Comments

paths

Saturday, March 6, 2010

I watched from my sun room as my dog attempted to climb over the wall of snow we had piled in a semi-circle outside our door. The idea worked

wonderfully keeping her contained to a specific area for her duties.

That is until now, as the snow began to melt I noticed our wall also

lessened in size. The sun shining bright in the sky, beaming…

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Added by Rita Felling on March 6, 2010 at 2:03pm — No Comments

Hello. I am new to all of this, although my son has been diagnosed with DMD since 2004. I want to be more involved with helping my son with his everyday needs. I want to be part of any studies possib…

Hello. I am new to all of this, although my son has been diagnosed with DMD since 2004. I want to be more involved with helping my son with his everyday needs. I want to be part of any studies possible, but I don't know how. Anyone with any ideas I would appreciate it. Thank you. Veronica Romero

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Added by Veronica Romero on March 6, 2010 at 12:30am — 1 Comment

Staff Ataluren Results

Yesterday was really difficult.

In 1999 our Scientific Director Lee Sweeney published an article on Gentamycin and while that was good news, we knew Gentamycin could not be a lifelong therapy. Then PTC marched into our lives, committing time, talent, and millions of dollars. They paved a road where none had been before. They became friends, invested in our community and our sons.

Over the years, we watched as the words premature stop and PTC124 nearly became household words.… Continue

Added by Pat Furlong on March 4, 2010 at 11:10am — 21 Comments

hope

Thursday, March 4, 2010

I watched as some joggers passed by my house today. My eyes following their young thin physiques. Watching as perfectly formed athletic calves carried these athletes. They appeared almost graceful like darting over puddles from the remains of winter. Standing there still holding the phone from the devastating call I had just received, tears began to run down my face.

Once again we were faced with another heart felt disappointment. The drug trial that had… Continue

Added by Rita Felling on March 4, 2010 at 9:31am — 1 Comment

Walk With Me

The following is a poem that my husband, Trevor Colby, wrote. It's dedicated to our son Jacob Colby (5) diagnosed with Duchenne Muscular Dystrophy. Please read and share with others.

Mommy Daddy walk with me

Let's go slow so I can see,

all that this life has given me.

Let's take our time and enjoy the day,…

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Added by Melinda Colby on March 3, 2010 at 7:42pm — 7 Comments

Does anyone need a wheel chair tray? It was from my son's last wheel chair (age 11). It is made of Plexaglass and in pretty good shape. Pay for shipping and it is yours. Thanks, Marcie

Does anyone need a wheel chair tray? It was from my son's last wheel chair (age 11). It is made of Plexaglass and in pretty good shape. Pay for shipping and it is yours.

Thanks, Marcie

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Added by marcie macek on March 2, 2010 at 8:54am — 2 Comments