I thought “Not again” two nights ago. My new 950 vent started giving me extra breath, not accelerated like the Trilogy had been doing, but enough to keep me awake, only when I was on my right side. Most likely because of the way the tubing hung at the bed’s side. Two skinny tube sensors, which helps the vent adjust to the air leak around my trach. My respiratory therapist said if these sensors are upside-down it would cause the machine to think I needed a breath. There are issues being…
ContinueAdded by Jason Hubal on January 31, 2011 at 6:58pm — No Comments
Another unwanted episode of ... "As the Vent Breathes"
I started having a problem last week with my Trilogy 100 vent. My doc (pulmologist) wanted to get to the bottom of it gave me 5mg of Ambien.
My options 1) get used to the Trilogy 2) try an LTV 950– already tried the LTV 800 and was used to it 3) put in cuffed trach (requires minor surgery – this I surely want to avoid). It’s been quite a challenge finding a new vent. The LP10 had been such a reliable machine for years.…
Added by Jason Hubal on January 29, 2011 at 6:18pm — No Comments
A win on the track for one UCF student could help gain in the search for a muscular dystrophy cure.
Shea Holbrook, a junior communications major, combines her professional racing career with fundraising for Duchenne muscular dystrophy, the only fatal form of muscular dystrophy.
"My goal is to be like Danica Patrick," Holbrook said. "If I could ever get to some type of celebrity status in my racing career, I could help raise money for Duchenne muscular…
ContinueAdded by Shea Holbrook on January 27, 2011 at 11:21am — 2 Comments
Added by Tammy Angel on January 26, 2011 at 7:56pm — 6 Comments
In the State of the Union speech last night, Obama said “We do big things”. It made me smile. Some days ago in an interview with Diane Sawyer, Mike Kelly, the astronaut husband representative Gifford (D, AZ). He spoke about his sorrow, sitting by the side of his wife, praying that she will fully recover after the gruesome shooting in Arizona. Ms. Sawyer asked if his perspective has changed after viewing the earth from the Space station. Mike Kelly smiled a very gentle smile at the…
ContinueAdded by Pat Furlong on January 26, 2011 at 3:15pm — 5 Comments
What better way to celebrate a new year than with one of the largest awareness campaigns in the history of Duchenne muscular dystrophy! If you haven’t heard by now, Clay Matthews (the MVP of this community!) and the Green Bay Packers are going to the Super Bowl! Clay is the NFL star that recorded a public service announcement (PSA) sponsored in part by our friends at Cure Duchenne and Cadillac. Because of Cadillac’s generosity and devotion to raising awareness on behalf of our sons, this PSA…
ContinueAdded by Pat Furlong on January 24, 2011 at 1:27pm — 8 Comments
Added by farrah buenaobra on January 21, 2011 at 10:34pm — 13 Comments
Added by Karen flor on January 21, 2011 at 7:40pm — No Comments
Added by Shannon Thomas on January 20, 2011 at 2:59pm — 8 Comments
Added by Rita Felling on January 19, 2011 at 12:24am — No Comments
Added by Rita Felling on January 18, 2011 at 10:56pm — 1 Comment
Added by Pat Furlong on January 14, 2011 at 11:30am — 3 Comments
My advocacy efforts started very early on. It all started at the PPMD Annual Conference, when Dr. Lee Sweeney said “To improve lives of patients with Duchenne and Becker Muscular Dystrophy the real change would have to come from the government through the National Institute of Health. Awareness about Duchenne and Becker needs to be increased within the NIH community”. I did not know any one at the NIH so I decided to contact my Congressional representative. In 2000 it was…
ContinueAdded by Christine Piacentino on January 13, 2011 at 2:30pm — No Comments
We just found out recently our sweet little angel who is 2 yrs old has duchennes .We were and still are scared all we can think is we cannot lose our sweet angel but i have hope and believe they will find a cure all i can think now is to keep my angel as healthy as possible in the mean time .My son is a happy, energetic ,loving soul he is the light in my life and he gives me strength i never knew i had .when im feeling sad and feel im…
ContinueAdded by farrah buenaobra on January 11, 2011 at 6:01pm — 7 Comments
Added by Wyatt's Mommy, Melissa on January 10, 2011 at 3:44pm — No Comments
"Faith is the very first thing you should pack in a hope chest." ---- Sarah Ban Breathnach…
ContinueAdded by Christine Piacentino on January 8, 2011 at 11:40am — 3 Comments
Added by Lisa Jones on January 7, 2011 at 2:00pm — 12 Comments
My name is Shea Holbrook, 20 of Groveland, FL and on March 26-27, 2011 I take the grid for my second season professional racing with the Sports Car Club of America (SCCA) Pro Racing World Challenge Series for the Grand Prix of St. Petersburg, FL. Join me in the fight against Duchenne Muscular Dystrophy leading up to the Grand Prix of St. Petersburg which races alongside the IZOD IndyCar Series and is televised…
ContinueAdded by Shea Holbrook on January 7, 2011 at 11:06am — No Comments
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