PPMD Community

Older men with Duchenne's (18 +)

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For older men affected with DMD, and people living with older guys, its not just the parents living with DMD. This is a place for us older guys who seem to have little voice, its not just children with DMD. Not sure how many of us are out there tho.

Members: 10
Latest Activity: Aug 20, 2013

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Comment by Ian Anthony Griffiths on August 20, 2013 at 9:00pm: How is everyone? What kind of things you do throughout the day? I'm a digital artist at the moment and I really like designing jewellery.

Comment by Jason Hubal on October 1, 2012 at 8:14pm: Welcome Josh and Marcus! I look forward to get to know you.

Comment by Ian Anthony Griffiths on May 27, 2012 at 9:31pm: Hi Marcus, this group is still up :), but I don't get much time to check over it. You got a facebook account? Loads of guys your age :).

Take care

Ian

Comment by Marcus King on May 27, 2012 at 9:08pm: Hi- is anyone still participating in this group? I am 23 years old in WA State and would like to connect with others who have DMD.

Comment by Jason Hubal on December 8, 2010 at 3:14pm: I'm a 35 year old duchenne guy.

Comment by Ian Anthony Griffiths on January 9, 2010 at 11:58am: I wouldn't say i was a spokesperson just trying to help out in any way :) I like to keep upbeat better than overly negative but i do get my grumpy days lol All the best to Ben

Comment by Joyce Carpenter on January 8, 2010 at 9:22pm: Ian,
Thanks for your quick response! You have an upbeat attitude and I bet you are astrong advocate for both yourself and other men with DMD. Keep it up! Wish Ben were more of a spokesperson.
Joyce

Comment by Ian Anthony Griffiths on January 8, 2010 at 7:56am: Wow, im so glad he was unhurt after that truck ordeal! Its great he doesnt need a back op, trach and vent. I myself was never offered steriods, i needed the spinal fusion but was not given it. I have a mini trach for chest secretions, and use a vent 18hours a day.
Be great if he joins and takes a look at my website. :)

Take care both of you!

Comment by Joyce Carpenter on January 7, 2010 at 9:04pm: Ian,
My son Ben is almost 24 and so far has not needed a spinal fusion, trach or vent. He uses a bipap machine at night for sleep apnea and is on steroids and we live in Michigan in the US. He lives at home with us and is the young man who 2 years ago got stuck on the front of the semi truck on a road near us and he survived and was unhurt so i tell people he is my celebrity son. I hope he will join your group and use your website. He has a friend who writes him from N. Ireland and she had a son die from DMD at almost age 22.

thanks,
Joyce, Ben's Mom