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…

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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.…

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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…

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'I am not really sure why I joined this page, other than to possibly be of assistance to those of you who have children with Duchenne. I did have 2 sons with it, and they lived very active lifestyles. They didn't concentrate on the things they couldn't do, they really didn't think it mattered. They did, however leave a huge impact on everyone they came in to contact with. The legacy they left behind from 20 years of life each is more than I will ever be able to accomplish, no matter how long I… Continue

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…

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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…

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My lil guy is going back to dr soon and will be starting steroids. I believe its a good move but hes only two im worried if he starts them now how long will he be on it ,and the side affects im worried about weakining of bones and weight gain..... we should be  worried about sledding riding bikes playing and doing all the fun things kids are supposed to do its hard worrying about drs and medicenes and so forth but this is the hand we were dealt and we are trying to stay positive and keep faith… Continue

Calling all facebookers....Apparently a disaster relief company called GOT MOLD? is donating $1 toward DMD research for every LIKE they receive untill Jan 31st....Just go to facebook..look up GOT MOLD and click on their LIKE....every click you and your friends do brings us one step closer to saving our boys!!!!!!!!!!!!!!

I have an 8 year old who is still mobile.  He seems to be getting tired easier and falling more frequently.  We are at a point where we need to figure out what our next step should be.  I've been told it takes a while to get things in motion so I figured I'd start asking around. What is recommended a scooter or a chair?  Where do I begin?  Any suggestions or advice?

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I like the idea of New Year’s Resolutions.  It makes perfect sense to look backwards for a moment, magnify the events in an effort to scrutinize what was done, learn from it, identify what might have been done better, with more finesse, more commitment, more strategic investment, more collaboration.    And I always think about starting early, in December for instance.   But in December, we put up the tree and think about the holidays.  We keep the tree lights twinkling day and night and no… Continue

 

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…

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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…

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Wyatt has completely changed my life.  I'm sure most of you would agree, how different our lives are with DMD apart of them.  But you know what?  Wyatt has made me a better person.  Made my children more understanding.  I'm not sure how to explain it, but I know you understand.  When we get busy in our lives, days pass quickly.  With our first babies we take 15 pictures of them a day, doing the same thing, with siblings we're lucky to get 15 pictures in 6 months.  But Wyatt has made me "stop… Continue

"Faith is the very first thing you should pack in a hope chest." ---- Sarah Ban Breathnach…

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Bradley is doing very well with muscle strength for an almost 14 year-old with Duchenne Muscular Dystrophy. The doctors are still very pleased with his ability to walk. They were also happy to see that he had lost a significant amount of weight which has contributed to his being able to maintain muscle strength.



He was diagnosed 6 months ago with steroid induced diabetes. Because of this, Bradley was started on a medication for diabetes which also helps with weight loss. He has also… Continue

  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…

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