PPMD Community

October 2010 Blog Posts (9)

To Work or Not to Work

I have been putting faith in knowing I will be shown exactly what I

should do next in my career. Do I continue to work full-time in a field

that keeps me from having enough time with my boys? Or Do I make my

time with the boys top priority which would put my current career in

jeopardy? Is there even a possibility that these are not mutually

exclusive ideas?

It's important to me to make a difference with the work I do, but I feel so distracted wanting to be… Continue

Added by Liisa Underwood on October 27, 2010 at 10:45am — 1 Comment

My autobiography ready for sale!!!

Hi everyone,

Over the past year I wrote my autobiography called DMD Life art & me and it's now ready for sale!.

Heres my write up of the book;

"IAN has Duchenne Muscular Dystrophy the doctor tells my parents, a severe, fatal muscle-wasting disease that will lead to an early death. This is a chronicle of the first twenty five years of my

life living with DMD read through as my ability to walk…

Continue

Added by Ian Anthony Griffiths on October 26, 2010 at 3:30pm — 1 Comment

Lets do some self counsel......

I posted this with a British stance but I think it's relevant over in the states.

Firstly this is for the older guys with DMD a very overlooked group within the health service.

Now I'm not saying lay yourselves to far open as this is a public forum but we can give some outsiders a touch of our own introspection.

I know that a lot of us are in a state of detirmined on the whole positivity, but I want us to peel away the bravado we all set up and… Continue

Added by Ian Anthony Griffiths on October 23, 2010 at 5:29pm — 1 Comment

Staff Moon landing for Duchenne?

On any given day, all of us can site ‘things coming together’ to achieve a certain goal.

Landing on the moon
NASA International Space Station
Haiti
Trapped miners in Chile
Air Traffic Control around the world
UN (ok we could have a long discussion about efficiency, effectiveness, and benefit but nevertheless, an extensive collaboration)
Identifying the Dystrophin Gene
MD-CARE Act 2001
MD-CARE Act…

Continue

Added by Pat Furlong on October 21, 2010 at 10:00am — 10 Comments

seasons

I listened as a friend told me about how much he was enjoying the

football season and his son playing. He shared with me the joy he felt

watching his son play quarterback. Giving me highlights of the most

recent football game, proudly he spoke of how well his son played his

position. The force, skill and strength his son was developing left

him with immense joy. I listened happy for him, as he talked to me

about fitting the boys in their equipment and the… Continue

Added by Rita Felling on October 12, 2010 at 11:34pm — 4 Comments

Cincinnati 2010, doctors visits that went great and some fun too, zoo, chilren's museum and reds game

Added by Wyatt's Mommy, Melissa on October 10, 2010 at 6:30pm — 2 Comments

Busy Busy Busy

We have been so busy around our house. I'm so glad that Fall is in full swing, maybe things will slow down a bit, I doubt it. We just made a trip to Cincinnati Children's. Great visit (more on that later). Wyatt is doing amazing. Walking, jumping, running, talking a mile a minute. He's a pure joy! He's a mama's boy, which is so nice. (The others forget I exist once they eat solid food, hahaha)

More to come..............

Added by Wyatt's Mommy, Melissa on October 9, 2010 at 10:27pm — No Comments

Staff Pittsburgh, 2000.

Donna Saccomanno and I sat at the registration table. Over 100 parents attended the conference. It was the first conference for David and Mary Mesick. Their 5 year old son, Bryan had recently been diagnosed with Duchenne. Their heart was breaking. They came to the conference to learn how to navigate – care, research, hope. David and Mary jumped right in and soon David was on the PPMD Board and Mary involved in a broad range of education and fundraising efforts. Bryan and brother Allan’s smiles… Continue

Added by Pat Furlong on October 6, 2010 at 1:22pm — 3 Comments

There was a time when I packed my dreams away. I felt fear surround me. Afraid of the unknown and tormented by what I knew would be the future. Unable to look past the pain that had become so much ap…

There was a time when I packed my

dreams away. I felt fear surround me. Afraid of the unknown and

tormented by what I knew would be the future. Unable to look past the

pain that had become so much apart of our complicated lives. I was

consumed by desperation and destined to keep hope alive. I had seen

death. I knew the horrific pain Duchenne brought to the lives of its

victims and their families. I knew its grasp only tightened as it

progressed to complete its… Continue

Added by Rita Felling on October 5, 2010 at 8:20pm — 1 Comment