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.…
ContinueAdded by Christine Piacentino on March 28, 2010 at 10:00pm — No Comments
Added by Rita Felling on March 28, 2010 at 4:32am — 3 Comments
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…
Added by Brian Denger on March 26, 2010 at 8:35pm — 1 Comment
Added by Ian Anthony Griffiths on March 26, 2010 at 2:14pm — 8 Comments
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 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
ContinueAdded by Donna Gluck on March 22, 2010 at 3:27pm — No Comments
Added by Ian Anthony Griffiths on March 18, 2010 at 9:47pm — 7 Comments
Added by Ian Anthony Griffiths on March 15, 2010 at 8:27pm — 2 Comments
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…
Added by Brian Denger on March 11, 2010 at 8:54pm — No Comments
Added by sandy on March 10, 2010 at 9:47pm — No Comments
Wind in My Sails…
ContinueAdded by Christine Piacentino on March 10, 2010 at 7:00pm — 6 Comments
Added by Rita Felling on March 10, 2010 at 12:00pm — No Comments
I don’t know about you but I felt last week the Duchenne community was hit with our own hurricane, similar to the 5th 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…
ContinueAdded by Pat Furlong on March 8, 2010 at 11:57am — 14 Comments
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…
ContinueAdded by Shana Creel on March 6, 2010 at 2:31pm — 3 Comments
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 possible, but I don't know how. Anyone with any ideas I would appreciate it. Thank you. Veronica Romero
ContinueAdded by Veronica Romero on March 6, 2010 at 12:30am — 1 Comment
Added by Pat Furlong on March 4, 2010 at 11:10am — 21 Comments
Added by Rita Felling on March 4, 2010 at 9:31am — 1 Comment
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,…
ContinueAdded 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
Added by marcie macek on March 2, 2010 at 8:54am — 2 Comments
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