Duchenne: An Intergenerational Issue

Guest post by Gail D. McVicker, Grandmother of Jake (10) and Ryan (6) - Pennsylvania

Duchenne: An Intergenerational Issue

Five years ago, I did not know the world of Duchenne muscular dystrophy existed. Before my young grandsons were officially diagnosed in 2008, my daughter told me that some genetic disease named "Duchenne" was suspected. Genetic? We had no history of muscle problems in our family --  this was something that maybe happened to other people but not likely us. That seemed like such a long shot I barely gave it a second thought.  I had no way of knowing then that a large percentage of Duchenne cases (and the number seems to be growing) are spontaneous (no family history).

Well -- it was likely us.

No words can describe the emotional turmoil experienced when told that first one cherished grandson -- and then his little brother had Duchenne. I know no one who had ever heard of Duchenne -- not even my friends in the medical field. When I asked our country librarian for information about Duchenne, she gave me a blank stare and there was nothing in the card catalogue. Our local doctors weren't aware and it became my daughter's responsibility to educate them. How could something as severe as this not be more publicized with all of the Jerry Lewis Telethons?

I scoured the Internet and was able to find specific information and learned the harsh reality of what we were up against.

I had the great joy of seeing some of my grandchildren come into the world - these two included. They both were husky baby boys exceeding nine pounds with all of the promise of physically athletic futures. Until I became a grandmother, I never knew love of such perception and intensity existed -- it is like none other. That love multiplies as the calendar pages turn --  however, the grandmother role I anticipated did not include an unwelcome intruder called Duchenne.

I am fortunate to have much interaction as a grandparent because I live close by --  but how would I dance this dance with Duchenne? I "Googled" key words like Duchenne, grandparent-role, helpfulness  hoping for practical guidance on how a grandparent in such a situation could be effective, but nothing pertinent came up. I needed a road map -- a precedent to follow -- a mentor, a model, or a manual. They say wisdom comes with age -- any I had acquired seemed to have flown out the window and I felt clueless.

I read anything I could find about Duchenne. I found the books written by parents or by young men with Duchenne themselves to be the most insightful. Their words are such a gift to the Duchenne community for they share, first hand, a realistic picture of what Duchenne entails. Disconcerting as it could be, I wanted real because if you are going to stand up to something you have to know what you are dealing with.

I believe the pain is most intense for the parents, however, the pain I felt was acute. How could I best channel this? What steps would be most effective and supportive now that this unwelcome guest was here to stay? What should I avoid? My wheels were spinning and everywhere I turned the compass needle pointed to powerlessness.

At one point, I emailed Pat Furlong asking if she could suggest anything for such emotional derailment. She responded with these words:

" . . . get involved in the ways you feel most comfortable, whether that is by helping the parents, entertaining the boys, contacting your congressman/senators about Duchenne, fundraising . . . You will learn things you never thought you would learn. You will not feel helpless or alone."

I followed this advice and got involved in meaningful activities. The words in the ways you feel most comfortable are critical because we all have our different styles. Yet, even though more involved, I still felt (more than I wanted to) like the Lone Ranger. I longed for connection with other grandparents going through the same thing. Maybe others out there had this need. Seemed the best way to find information for effective grandparenting would be from the real deal --  to seek out other grandmothers and grandfathers living this.

Grandparents and Duchenne

To facilitate this, I approached PPMD about moderating a grandparents' breakout session at the 2011 Annual Connect Conference in Baltimore, MD. I did not view myself as an expert - but so wanted to hear and share the ideas of others in this situation. PPMD paired me up with a vivacious and resourceful grandmother, Anita Bullers, from Texas and suggested we jointly put this together. It was an excellent combo because (Anita and I laughingly admit) we are not two peas in a pod. Anita is a football fanatic and I don't even know what a helmet is. However, we bring different strengths to the table which result in a more balanced approach. What we do have totally in common is the fierce love for our grandson(s), the passion to fight Duchenne, and a big time conviction that grandparents have a lot to offer.

Anita and I co-moderated the first Grandparents and Duchenne breakout session in 2011. It included a PowerPoint presentation simply titled "Grandparents and Duchenne" (PDF download). Here you'll find a basic overview, throwing out ideas and options on how grandparents can contribute effectively and maintain a healthy balance for  themselves. It was divided into three sections: Helping in the Home, Helping Outside of the Home, and Fortitude and Self Care.

OK, so what CAN we do here?

Last year, 2012, we were invited to do a follow-up session at PPMD's Annual Connect Conference in Ft. Lauderdale, FL.

A second PowerPoint presentation was compiled entitled "OK, so what CAN we do here?" (PDF download) To understand that title, imagine the stereotype grandparent, steeped with wisdom, hands on hips, accessing a difficult situation, and delivering tried-and-true advice and bingo! - problem solved. Like in the movies. Not so simple -- this time the one needing the advice was the grandparent.

The idea was to round up some testimonies from several grandparents - initially, I thought, maybe 10. Emails were sent out in hopes of getting volunteers to share their stories. Responders were invited to comment on the following regarding their grandparenting experience with Duchenne: Challenges, Concerns, What Has Been Effective, Best Advice for a Grandparent New to Duchenne, and Ideas on How a Grandparent Group Could Be Effective.

Much credit goes to PPMD's FACES coordinators and contact people from other Duchenne organizations who provided excellent leads suggesting grandparents willing to share. Others were also found on PPMD's website and on Facebook. Pretty soon wonderful responses came rolling in.

The end result was a slide presentation with not 10 but 20 testimonies from Duchenne grandparents whose firsthand sharing went beyond expectation. The ages of grandsons ranged from toddlers to adults. Some lived in close proximity and some were continents apart. Some were outgoing and comfortable with publicity and large-scale community events -- others were reserved, preferring the privacy of the home front and behind-the-scene activity. Some stories had similarities and there were some very unique situations -- such as one set of retired grandparents who are thankful to be the fulltime primary caregivers. Every single contributor - 100% - gave permission to share their message on PPMD's website as a source of support for others -- especially those new to Duchenne. All of this underlines that Duchenne is an intergenerational issue.

Last year's breakout session was well-attended. Some of the grandparents who contributed stories were able to meet and address the audience in person. Those absent shared their stories, larger-than- life, on the big screen. The audience was diverse regarding situations and locations but uniform in their appreciation and interest in the subject matter.

When it comes to Grandparents and Duchenne -- no one recipe fits all-- we are not stamped from the same cookie cutter. Much involves doing what a grandparent would naturally do. In time, Duchenne-specific activities can be ventured. I try to choose activities that are within my comfort zone and on occasion go beyond. Any uneasiness on my part is a small price to pay compared to the havoc Duchenne dishes out. Any inconvenience lessens when I view it as an opportunity to help give my grandsons and boys like them with a chance for a lifetime. I am grateful for the options that exist.

It is encouraging that we have Duchenne organizations like PPMD who have laid out the groundwork for action, support, and camaraderie. We are also amazingly lucky that the Internet offers immediate information and communication. Can you imagine the isolation just a short decade ago? We are on a roll with awareness, advocacy and hopeful research activity and there's no turning back.

You'll see more grandparents putting aside the heartbreak and pitching in. Last February, even a set of GREAT-grandparents came eager to pound the pavement at Capitol Hill (PPMD’s Annual Advocacy Conference in Washington, DC). These golden-agers bring in resources, energy, and determination that comes from the heart. They are fueled by an endless supply of love for a cherished grandchild and for that of their own child. Duchenne is an intergenerational issue.

As more and more Duchenne grandmothers and grandfathers join forces - say, something like a Grandparent Squad - watch out Duchenne. We weren't born yesterday and there's no putting us out to pasture. We are a tenacious and formidable force when it comes to Duchenne.

Even if you are not a grandparent, I hope you'll flip through these slide presentations. Some of the points shared could be of interest regarding other relationships such as that of siblings, aunts, uncles, cousins, friends -- even the parents. You'll likely find something that relates to your own situation.

Note:  Some have expressed interest in having a closer-knit grandparent group year round -- like having a periodic newsletter or a blog where input from the grandparent population can be shared with continuity. Let us know if you would like to be added to our list of contacts. Your questions, ideas or comments are encouraged. For more information, please contact Gail McVicker at gmcvicker@comcast.net or Anita Bullers at anitabullers@sbcglobal.net


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Comment by Trinh Nguyen on May 7, 2013 at 2:36am

Dear Gail,

Thank you for your story. Yes, our community needs more and more grandmom and grandpa like you.

We are so lucky that my mom is living with us (my father died at very young age during the war.) When our son was diagnosed Duchenne two & a half years ago, we all shocked ; you know well all the feelings. My mom did stood quietly and unyeildingly. She brushed the tears and went to kitchen starting to cook suitable food for my son (He started steroid right after the diagnose and as a pharmacist my mom knows well weight gaining is un-avoidable.) She has been always with us and for us.

I am so much grateful to my mom. She is somehow my hero.


Comment by Brian Denger on April 17, 2013 at 9:06pm

Thank you Gail and Anita for your tireless efforts on behalf of your family...this family.  Like most, the invitation to join must have been lost in the mail, so it was assumed you'd want to enter the world of DMD.  Yet, unlike many and despite the rude introduction, you picked yourselves up and went to work knowing someone could use you talents and sitting around wasn't working.  The collective efforts of a few motivated people can drive the masses to more positive results.

I wish more families would rally together and support one another.  All too often I read parents complain members of their family can't or won't help or they are avoided completely.  When my sons were young and their grandparents asked us what they needed for a birthday or Christmas, I urged them to consider taking the boys to dinner or a movie and build a memory rather than buy another toy or book.  Memories could be shared and last forever.  I also suggested they spend an evening at our home allowing my wife and I to get away for dinner.  No, these suggestions were too trivial and didn't have the appeal as a new plastic electronic something.  Yet, this is what families need.  Another pair of hands, a shared moment with family, some recognition that their children are valued and that a break from the the duties of caring for them is worth changing plans for.  

There are a handful of grandparents who advocate for their children and grandchildren at PPMD's annual advocacy conference.  There are others who host golf tournaments or wine tastings to raise money to fight this terrible disorder.  Others take the kids for a night or afternoon allowing mom and dad time together.  God bless them.  Damn it, we need more like them.  Writing a check to buy wrapping paper or a candle doesn't get you off the hook, nor does it make you grandparent of the year.  Family support is more intimate and in the world of Duchenne, more necessary.  

I'm glad to read your crusade continues and I hope you gain more participants.  This disorder is far too complicated to fight individually.  Families need all the support they can get.  Getting grandparents to share examples of how to help is a vital form of that support.  Please continue to share that energy and rope in a few more 'converts'.

Brian Denger

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