January 2011 Blog Posts (18)

Vent Part VIII

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…


Added by Jason Hubal on January 31, 2011 at 6:58pm — No Comments

Vent Part VII

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

UCF student races professionally for muscular dystrophy cure funds By Camille Thomas

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…


Added by Shea Holbrook on January 27, 2011 at 11:21am — 2 Comments

'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…

'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

Added by Tammy Angel on January 26, 2011 at 7:56pm — 6 Comments

State of the Union

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…


Added by Pat Furlong on January 26, 2011 at 3:15pm — 5 Comments

Duchenne in the Super Bowl!

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…


Added by Pat Furlong on January 24, 2011 at 1:27pm — 8 Comments

wondering what to do next.......

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

Added by farrah buenaobra on January 21, 2011 at 10:34pm — 13 Comments


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!!!!!!!!!!!!!!

Added by Karen flor on January 21, 2011 at 7:40pm — No Comments

Scooter or wheelchair

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?

Added by Shannon Thomas on January 20, 2011 at 2:59pm — 8 Comments


Share my beautiful dog followed me with her black round eyes as I moved around my room, clearing a space close to my bed for her to rest. She laid her head down on the side of her cushioned flowered bed as I approached her. It had been a very rough day for both of us and it did not seem to be improving. I wanted to hang onto the words the vet had said earlier that day. Keep her comfortable and try to get her drink, she would be fine tonight. He wanted to see…

Added by Rita Felling on January 19, 2011 at 12:24am — No Comments


Josiah bent over to pick up a Lego piece that had slipped from his fingers to the floor. I watched silently as his shoulders slumped forward in an awkward tilt. It was becoming increasingly harder for him lately to force himself upright again. He managed and I felt some relief. He was still finding away to continue this ability. It was however, more apparent, the rapid loss of strength he was experiencing. I could feel some anger once again growing with in…

Added by Rita Felling on January 18, 2011 at 10:56pm — 1 Comment

First Quarter Wishes

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

Added by Pat Furlong on January 14, 2011 at 11:30am — 3 Comments

Advocacy Really Does Matter!


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…


Added by Christine Piacentino on January 13, 2011 at 2:30pm — No Comments

my little angel my gift from above

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…


Added by farrah buenaobra on January 11, 2011 at 6:01pm — 7 Comments

I love Wyatt

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

Added by Wyatt's Mommy, Melissa on January 10, 2011 at 3:44pm — No Comments

Faith and Hope

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


Added by Christine Piacentino on January 8, 2011 at 11:40am — 3 Comments

January 2011 Update

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

Added by Lisa Jones on January 7, 2011 at 2:00pm — 12 Comments

We're back! Shea Racing fighting Duchenne leading up to the Grand Prix of St. Petersburg

  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…


Added by Shea Holbrook on January 7, 2011 at 11:06am — No Comments

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