I’ve joined Facebook and Twitter, watched videos on YouTube and clicked onto Flickr to see photos from friends. Is that multi-tasking or just craziness? I have become so savy that I now have Facebook on my mobile phone. OK, I was not the one to add the technology, as I am more of the ‘push the button’ kind of a person. I have driven my car, trying to talk or text. I carry my blackberry when running, though admit I have insufficient breath to run and text at the same time. In the middle of dinner, I find myself checking the blackberry and following Facebook friends. I have not yet taken my blackberry into the bathroom, though it has crossed my mind. Honestly, there is a comfort in learning about everyday activities and thoughts. It brings all of us close, a sort of backyard fence. But there is a flip side and I’m trying my best to sort it all out. While some refer to this continuous connectedness as liberating, it is also a bit distracting.

Have you ever walked in a room and forgot what you were supposed to do? I am finding this happens with technology as well. There is so much to absorb, emails flying, Facebook messages, YouTube videos, Twitter (trying to figure out how to express a thought in 150 or less characters), that it feels like everyone is in such a rush and serves as a constant reminder that time flies… all too fast.

When Duchenne enters your home, Time stands still for only one moment as the diagnosis sinks into your brain. From that moment on, Time flies. Birthdays…Holidays, school days, week days, work, weekends...bittersweet as you see time passes much too quickly.

I’m all for technology and I’m happy to see Facebook friends. I’m doing my regular stuff and trying my best to keep up. But at the end of the day, I wish we had more time to spend, to talk, to laugh, to touch and instead of always multi-tasking, promise ourselves to find a bit of Zen in our lives or to sit down with a friend.

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Staff
Comment by Pat Furlong on October 21, 2009 at 1:04pm
working on it!
Comment by Jeffrey Kopp on October 21, 2009 at 1:01pm
What's next... How about a PPMD podcast?!

Staff
Comment by Pat Furlong on September 18, 2009 at 1:41pm
Friends, First off, Prosensa IS moving forward on the systemic trial, skipping exon 51. They are now working on US sites, with the expectation that there will be as many as 20 in the US. Keep in mind, they will not open on the same day, you will see one primary site and the rest will come on-line over time. This is expected 4th quarter. AVI skipping exon 51 will follow about 6 mo. later. During the world muscle society, there was some concern about the ability to recruit enough patients for the trial(s), so I think all of you who have boys would will potentially benefit from skipping exon 51 should have no worries. They will be interested in screening all eligible boys.
Gretchen, I do love the blackberry and facebook, but I don't think I will ever be a tweeter because I cannot say anything in 150 characters. I'm trying my best to be techno savy and I admit to the fact that I am compulsive about my blackberry.
The Intel voting has been amazing!! Keep voting!
Pat
Comment by Gretchen on September 17, 2009 at 11:29pm
Pat, I must say, I've had a Blackberry for about 3 months now and am still pretty clueless about all it can do--I do know it will wipe out the memory of my hotel cards in Cincy & Gainesville, though, so they must be separated at all times!

For me, the biggest "A-ha!" with technology is just how close and powerful as a group we are. The Intel Vote for a Cause has shown me the power of the cascading internet---friends of mine who've never donated to my marathon efforts are voting for a cause!--friends who've heard me talk about Nick are seeking up to date pictures and realizing Duchenne is changing our lives and family dynamic. Most of all---we are connecting as a family in a way that our PPMD site hasn't found yet. The everyday, the ordinary, brought to light and brought together.

I don't and can't Tweet---and my Blackberry remains a mystery for the most part (how can I "like" something on fb from my Blackberry?)--but we connect more than we ever did before. And whenever I hear the word CONNECT--ever--I think of PPMD. :)
Comment by Ana Vaish on September 14, 2009 at 3:44pm
Hi Pat,

I am eager to know what Prosensa said about their systemic trial and for their upcoming pivotal trial for 051at the muscle conference. Please let me know as Ryan needs skipping of 51 and I would like to put him through the next trial.

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