Brian Denger's Blog (59)

Turning over the reins





I’m not much of a winter person which must cause people to wonder why I still live in Maine.  Some days I don’t really know why I stay, especially in the dead of winter when the nights are so long and cold, but this is where I was raised and I like the independent nature of the people and the rugged coast. It isn’t an easy place to live due to the harsh winters, but for someone looking for a sparsely populated state with plenty of all year outdoor…

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Added by Brian Denger on April 12, 2011 at 7:24pm — No Comments

The Hokey Pokey





Had I heeded the advice of my parents there are many classes I might have been better served paying more attention to in school. Academics aside, I never realized a song from a fourth grade gym class was important, but it does hold a bit of wisdom for me today. That song is the “Hokey Pokey” and I won’t subject you to a recital, but the repetitive nature of putting your foot and arm in and out and shaking things about led to the line “that’s what it’s all…

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Added by Brian Denger on March 22, 2011 at 8:08pm — 7 Comments

Final Update from PPMD's One Voice Advocacy Summit

The third panel for the One Voice Summit, moderated by Debra Lapin, focused specifically on the accomplishments and possible gaps in the MDCC Action Plan.  Members of industry and researchers made up the panel.  Jasbir Seehra and Chris Garabedian represented industry while Se-Jin Lee, and Eric Hoffman represented research.  Bob McDonald is a parent PPMD Board member who also was on this panel.  

 

The discussion began with Eric Hoffman’s review…

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Added by Brian Denger on February 14, 2011 at 4:36pm — 1 Comment

Update from PPMD's One Voice Advocacy Summit - 2nd Panel

The second panel for the One Voice Summit, moderated by David Zook, focused on Quality of Care and Quality of Life issues.  Kathryn Wagner, Mark Swanson, Katie Bushby, and Craig McDonald were panelist joined by a committee with Jerry Mendel, Katherine Mathews and Jen Garofalo.  

 

The panel took turns addressing aspects of the MDCC Action Plan addressing programs such as the MD STARnet, comparing and contrasting the Plan to efforts undertaken…

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Added by Brian Denger on February 14, 2011 at 2:22pm — 1 Comment

Update from PPMD's One Voice Advocacy Summit - 1st Panel

Pat Furlong opened the One Voice Summit for Duchenne Muscular Dystrophy welcoming attendees.  She provided background of the MD CARE Act and the accomplishments over the past ten years including the Muscular Dystrophy Coordinating Committee’s Action Plan for muscular dystrophy.  Pat spoke about those who helped initiate Parent Project Muscular Dystrophy’s entry into the advocacy including meetings and advice provided related to Senators Arlen Spector and Roger Wicker, Joel Wood…

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Added by Brian Denger on February 14, 2011 at 11:30am — 5 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

My heroes

How we choose a person as a hero is often related to individual interpretation or current societal trends. Many people today claim athletes or entertainers as heroes, while others choose political figures. In general, I don't agree that exploiting a talent for the entertainment of others or seeking public office and financial gain meets that standard. The days when we looked up to people who overcame great challenges or adversity seems to be gone, with a few rare exceptions.



A lot of… Continue

Added by Brian Denger on November 9, 2010 at 7:34pm — 10 Comments

Internal Conflict

As a young boy I traveled each summer with my family from our home in Maine to Ohio to stay with my grandparents on their farm for a few weeks of vacation. The drive was long and boring for my siblings and me. This was long before handheld computer games and portable music and video players. Radio stations were infrequent and my parents’ car only received an AM signal. My siblings and I played cards and tried to identify license plates on cars from as many states as…

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Added by Brian Denger on November 1, 2010 at 9:06pm — 3 Comments

Independence



The rites of passage may mean different things to us all and probably change with each generation. In elementary school being able to ride your bike to school was "the" thing to do. Not only did you have to convince your parents that you could physically ride the mile or two to school safely, there were other rules at school such as walking your bike on school property. As we get older obtaining a drivers license, being able to legally consume adult beverages and getting a "real job" are… Continue

Added by Brian Denger on September 28, 2010 at 7:20pm — No Comments

The Changing Levels of Hope

When my children were little I would tell them the world had been black and white before they were born and things were only seen in color when they arrived. For a short time they believed me, especially when I showed them black and white family photos or when we watched old movies, but they soon figured out it was another one of my crazy tales used to make a point. As our world grows, whether having children or the result of other major life changes, our perspective changes. Life was much more… Continue

Added by Brian Denger on August 9, 2010 at 11:19am — 7 Comments

Connect

Sitting still is difficult for me. To say I prefer to stay busy is a bit of an understatement. Ask my wife Alice if she thinks I'm doing too many things. Between work, family, my involvement in DMD programs and running there isn't much free time left. When I do get a minute or two I'm thinking of my next task as rewording an e-mail or working out details for a project, otherwise if I sit too long idly I begin to doze off. Some Sundays as I sit in church with my family I catch myself dropping… Continue

Added by Brian Denger on May 12, 2010 at 4:44pm — 4 Comments

Here There and Everywhere, Part II

Some time ago I wrote a blog concerning people in my life who intuitively understand how to be friends to families like yours and mine dealing with Duchenne. We can all find someone who knows the right thing to say or do among

the many who do not. I describe them as people who "get

it". I've also written how we have raised our sons to be their own

Advocate. Recently we had a situation where none of the stars had aligned

and this situation is particularly…

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Added by Brian Denger on March 26, 2010 at 8:35pm — 1 Comment

Family noise

I recently returned from a conference flying home on a "red eye" flight arriving home early in the morning. These flights are well named. You never know how much sleep you'll get as you

are jetted across the country forced into an unnatural position that prevents

real sleep with God knows how many other interruptions that steal those

precious minutes of rest you so desperately want. For the main flight on

this particular journey…

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Added by Brian Denger on March 11, 2010 at 8:54pm — No Comments

Fitting it all in.



Parents are busy people. It's no wonder. Once we have children they become more than

our "little darlings", they literally become the center of our

universe. When we're younger we think we have a lot to do and convince

ourselves that we are busy, yet I'd like to have some of that time today. As

our children become older we juggle their activities and doctor's…
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Added by Brian Denger on February 27, 2010 at 9:13pm — 2 Comments

Talkin' 'bout my generation

In the early 1970’s the rock band The Who wrote a song called “My Generation”. The song was a tongue in cheek jab at the communication gap between the younger generation and their parents. It became an anthem for many dissatisfied with the lack of understanding between generations.



This communication gap remains today despite every new form of communication that exists today. How many times when telling a friend or family member that our son or grandson has Duchenne Muscular… Continue

Added by Brian Denger on February 11, 2010 at 2:07pm — 13 Comments

Participation

I have a picture of Matthew and Patrick at my desk at work taken about three years ago when Patrick was still able to walk. Patrick is standing and leaning against Matthew who is sitting in his power chair. Patrick's arm is around Matthew's shoulder and they are both smiling. The look on Patrick's face is self assured, almost protective, and Matthew looks relaxed and happy next to his brother. The photo reminds me of how much my sons help each other and depend on each other for… Continue

Added by Brian Denger on November 8, 2009 at 5:55am — 1 Comment

Changing the rules

Patrick plays piano. He took lessons from a classically trained instructor after he decided voice lessons were just too boring. Patrick enjoyed Mrs. Wingfield's lessons and worked hard to please her. When she passed away he decided he didn't want a replacement and took time off from playing. Slowly he started playing again and now plays almost daily.



He truly has a gift and I enjoy listening to him. I'll be working on the computer banging away at the keys when he wheels up to the… Continue

Added by Brian Denger on October 12, 2009 at 8:57pm — 2 Comments

Be prepared

I was a Boy Scout for a short time. I enjoyed the crafts, earning badges

and being with friends. I even liked camping, that is until a January

weekend in Maine where I nearly froze because of inadequate gear and

below zero temperatures led me to "reconsider my participation". The one

thing Scouting emphasized and is still part of the motto is "be

prepared".



In parenting and bringing up our sons, Alice and I have taken this same

approach. This philosophy… Continue

Added by Brian Denger on June 12, 2009 at 8:13pm — 2 Comments

Across the Universe

Our second house in Maine was an old Victorian parsonage. Built in 1865 the place suffered from neglect, yet had many redeeming qualities. Alice loved the main staircase, this house had two. From the front entry the stairs curved around one wall to the second floor landing and framed with a handsome banister and railings. The back stairs were in the kitchen and were so steep they more resembled a bookshelf. Alice loved both, so we bought the house.



At the time my hobby was house…

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Added by Brian Denger on April 6, 2009 at 8:30am — No Comments

It's getting better all the time.

A ten year anniversary is quickly approaching for my family. This is not the kind where we will have cake and celebrate as much as it will be time to think, reflect and wonder how this type of thing happens. In 2000, two and one half years after Matthew was diagnosed with DMD he was kicked out of school. Let me tell you why.



Alice and I wanted our children to attend a local parochial school we thought would provide an excellent education in a close knit faith community. Matthew's… Continue

Added by Brian Denger on March 20, 2009 at 8:42pm — 5 Comments

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