PPMD Community

December 2010 Blog Posts (20)

Absent from the Body

We lost our son Quay Orozco Jan.29,2010 from the long fight of DMD. He was 17 years old and his spirit lives on away from this horrible disease - Thank you Jesus!

 

 

Added by Cherie Orozco on December 31, 2010 at 8:45am — 4 Comments

Hope for Gus Blog

Hello PPMD Community, 

 

I moved a number of blog posts to PPMD from a blog I have maintained at Word Press and Blogspot for the past year.  It looks as if I wrote them all today, but they reflect the past year, which was the first year since Gus' diagnosis.

 

I wanted to share my thoughts with this community because you are the people who truly understand the roller-coaster emotional life of having a child with DMD.

 

I wish you all a wonderful New…

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Added by Steve Dreher on December 30, 2010 at 7:37am — No Comments

DMD and the Economics of Our Sons' Lives

It's been almost a year since Gus was diagnosed with DMD. On the drive into work this morning, I was thinking about what I've learned about DMD since that November…

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Added by Steve Dreher on December 30, 2010 at 7:29am — 2 Comments

Cousin Jake

I wanted to share a poem written by Jake, Gus' oldest cousin. Jake is in 8th grade, and he has shown us his maturity, compassion and love for his cousin by…

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Added by Steve Dreher on December 30, 2010 at 7:28am — 3 Comments

A Lot of Hope

On August 7, 2010 we had our most successful fundraiser yet at the Alexandria, MN Country Club. Tonya's dear friends from high school had spent six months…

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Added by Steve Dreher on December 30, 2010 at 7:27am — No Comments

$11,000 to Spend

In the few months since we began The Hope for Gus Foundation, due primarily to the generosity of our friends, family and…

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Added by Steve Dreher on December 30, 2010 at 7:26am — No Comments

The Kindness of Strangers

Our first big fundraiser was put on by our dear friends Steve and Marcey in Greenwich Village, NYC. We were at …

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Added by Steve Dreher on December 30, 2010 at 7:25am — No Comments

New Yorker article

Dear Pat,

As soon as we heard about this article Ben and I had to find the magazine.  We have a small store, old , here in Kalamazoo called Michigan News.  Sure enough they had it and I bought it.

What a wonderful article!  Thank you so much for sharing with us.  I never heard your whole story about Christopher and Patrick.  I loved the part best where you went to see the neurologist who said you should have aborted your second son's pregnancy.  I applauded and cheered you when…

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Added by Joyce Carpenter on December 27, 2010 at 5:40pm — No Comments

Waiting to exhale

Since my sons were diagnosed with Duchenne muscular dystrophy it seems as though I am always waiting for the next “something” to happen.  Being a fairly positive person I

don’t dwell on negatives, but it is unsettling knowing a child with a

progressive degenerative disorder will lose specific abilities, even more so, not

knowing exactly when those changes will occur. 

Alfred Hitchcock was a master movie producer who knew how to…

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Added by Brian Denger on December 24, 2010 at 10:05pm — 5 Comments


Staff
Duchenne Gene-gle Bells

Twas the night before Christmas, when all through the house

Not a creature was stirring, not even one mdx mouse.

250,000 stockings were hung around the world with care,

Each holding one wish about muscle repair.



The children were nestled, all snuggled in bed,

While dreams about moving danced round in their heads.

And mamma in her ‘kerchief, and I in my cap,

Could not settle our brains, worried, as we tried to nap.



When out on the lawn there arose…

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Added by Pat Furlong on December 23, 2010 at 9:38am — 4 Comments


Staff
Conversation with Dr. Kole - Duchenne a stem cell disease?

Dr. Ryszard Kole from AVI Biopharma and PPMD President Pat Furlong further reflect on recent findings that Duchenne is a stem cell disease. Read the discussion below, as well as, Pat’s previous blog.



I read with interest your blog yesterday regarding the Cell paper on Duchenne that came out on Monday. I can very well understand the excitement, as well as some possible confusion, that the paper generated among PPMD…

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Added by PPMD on December 20, 2010 at 12:30pm — 23 Comments


Staff
It all depends

The Google Alerts were flying last week with Helen Blau’s recent paper about the new mouse model for Duchenne muscular dystrophy that implicates stem cells. The Facebook messages suggested this was something new, some new news. Actually, this is not new. The only thing new is this new mouse model.



The loss of satellite cells in Duchenne is well documented. In early discussions…

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Added by Pat Furlong on December 15, 2010 at 10:29am — 6 Comments

Vent Part VI

Norco was the respiratory care supplier my nursing agency recommended. A call was made to an RT at Norco by the name of Rebecca and she called back. An appointment was made but being canceled due to inclement weather it was rescheduled a week on 12/1/10. Rebecca came with a Trilogy 100, a compact, blue box for me to try. First she went through some paperwork which involved my medical supplies. Then tubing was hooked up and Rebecca dialed in similar vent settings as my LP10. The sensitivity…

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Added by Jason Hubal on December 13, 2010 at 1:00pm — No Comments

Vent Part V

Come to find out it wasn’t the insurance dictating what vent I’d get, but my vent equipment supplier, Lincare. Laura had informed us in October that Lincare getting out of the vent business and so they were not taken on new vent patients, nor were they not purchasing new vents. Thus whatever vents they have around were the only ones to choose from. So they had only the LTV 800 available. Since I wasn’t comfortable with the LTV and mom saw my frustration, along with Laura, it was decided to…

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Added by Jason Hubal on December 12, 2010 at 6:56pm — No Comments

Vent Part IV

12/7/10 It had been a frustrating experience using the LTV 800 ventilator for me, my mom and nurses. The sensitivity setting being #1 on my list—it just didn’t have the range to my comfort. At zero, I couldn’t trigger an extra breath. Turning it down to -1 was okay while I was upright, but when reclined the vent starts to cycle breaths fast, thus we turn it back to zero. The other con required 3 power cords: 1 A/C adapter and 2 external battery charger adapters (which are suggested to be…

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Added by Jason Hubal on December 10, 2010 at 6:01pm — No Comments


Staff
ONE VOICE Advocacy Summit: February 2011

Washington, DC.



The news from Washington, DC is constant with multiple agendas and many moving parts. Following the November elections of 2010, we have many new faces in both the House and Senate. The ripple effect of the elections is that committees will change, priorities will change, and many, many may not be familiar with Duchenne muscular dystrophy.



This year marks 10 years of advocating for Duchenne muscular dystrophy and…

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Added by Pat Furlong on December 10, 2010 at 8:29am — No Comments

Vent Part III

Later that afternoon, Laura held an in-service at my house for all my regular agency nurses to learn the vent. Done. Now it is my turn to feel comfortable on the new vent. A couple days later, I decided to go on it for a few minutes. With some vents there’s a breathing sensitivity setting (called “Patient Effort” on LP10’s) in which I can trigger the vent to initiate a breath. This helps if I need an extra breath. Especially it helps me to talk without too much of a delay in speech. Instead…

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Added by Jason Hubal on December 9, 2010 at 6:54pm — No Comments

Vent Part II

The next step was to visit my pulmonologist who was required to sign off on the new vent settings. I was scheduled to see my pulmonologist anyway. So on 10/21 we went to my appointment, where we met Laura my RT. Inside an examining room Laura started to setup the LTV 800. One problem, she needed to use the tubing from my LP10, which I was…

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Added by Jason Hubal on December 8, 2010 at 6:53pm — No Comments

Vent Part I

Intro: We’ve been in the works of getting me new ventilators for over a year. The insurance company no longer wanted to pay for service on the two LP10 vents that we own (this wasn’t totally the case as you shall soon see). I’ve been using, Lincare’s, my supplier of respiratory care, rented LP10’s, which they can still get serviced. This is only…

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Added by Jason Hubal on December 8, 2010 at 5:07pm — No Comments


Staff
Endocrine Meeting: Day One

Experts in the field of endocrinology, neurology, pediatrics, and rehabilitative medicine met at Kennedy Kreiger to discuss endocrine issues in Duchenne. Alan Rogol, M.D., Ph.D. chaired the first session. In the endocrine community, Alan is considered one of the world’s best. The meeting included 40 individuals representing endocrinology, neurology, cardiology, rheumatology, rehabilitation, and orthopedics. Craig McDonald discussed the effect of steroid on the natural history of Duchenne.… Continue

Added by Pat Furlong on December 2, 2010 at 4:40pm — 5 Comments

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