Laughter

I am old enough to remember enjoying “Reader’s Digest” as a young person. A monthly periodical published ten times a year, the popular magazine contained an eclectic mix of stories and anecdotes that covered a wide spectrum of life in the U.S.A.

One of my favorite series was “Laughter is the Best Medicine”. Some quotations, some jokes, some short stories … sometimes corny but oftentimes thought evocative … all good stuff.

Laughter lifts one’s spirits and soothes emotional pain. This last weekend, my grandson Hayes, with Duchenne, visited with our gorgeous baby granddaughter Olivia in Tuscaloosa. Their respective pet rescue dogs enjoyed each other and proved to be very protective of baby Olivia as she would waddle around the fenced perimeter of the home backyard.

Inside, Hayes played with baby toys in the playroom and showed an interest in the things that Olivia enjoyed the most … obviously for the purpose of entertaining her.

Hayes would act entirely goofy in front of Olivia to make her laugh, which she did often and hilariously. Hayes did to Olivia what I used to do to Hayes when he was a baby … anything to make the baby joyously laugh.

The art of being goofy, all for a laugh, is being passed down, from Papa to Hayes to Olivia. Not a bad pass-me-down gift, it seems.

As we pray and work to end Duchenne, let’s our community of affected families find humor in the simple things of everyday living, such as young cousins comically entertaining each other. There may be no better medicine at the current time.

Kindly,

Papa in Tennessee

Reflecting on Halloween

Halloween was last night. What a blast with my grandson. Hayes dressed up as a mad scientist in garb custom-made by his very talented mother (yes, I am prejudiced).

Hayes’ lab coat contained a variety of patches, all denoting some risky or fearful aspect of science and chemistry. But, it was the blinking goggles that stole the show in the neighborhood, along with his playful attitude.

I could not seem to get my mind off grandson Hayes’ Duchenne as he bounced door-to-door treating residents and collecting candies. I wondered how many future Halloween’s he will be capable of thoroughly enjoying along with the rituals and activities of the spirited observation.

Hayes is participating in a clinical trial involving a hopeful treatment that may make him more comfortable over the years if it pans out. As with any trial, there are risks but those risks are easily outweighed by any foreseeable modest side effect or, worse, inaction. We are hoping the scientific method and medical/pharmaceutical science behind this trial and other currently promising trials are not the stuff that “mad scientist” lore stems from in literature and the movies unless, of course, the mad scientist ends up with the right result.

We sure did see a lot of animated pumpkins or, should I say, jack-o’-lanterns. Some actually spoke and sang. The impossibility of reality of such special effects just makes those effects more fun to enjoy.

There is no cure, yet, to Duchenne. Truly scary. Is a cure impossible? Of course, not!  

Read about the years leading up to a cure for polio or, as we have learned in the last several days, a worthwhile treatment for cystic fibrosis. Those affected families and medical providers experienced despair just like we Duchenne stakeholders do today ... until that special Ah-Hah moment when cures or worthwhile treatments have been discovered.

As I continue to pray for a cure of Duchenne, I will think back to those delightful costumes of hope which I enjoyed so much during last Halloween evening. Whether Cinderella, a North American frontier explorer, a baseball player, or, yes, a mad scientist, hope for a bright future for those youngsters’ lives is alive and well.

May it also be so for an end to Duchenne, sooner rather than later.  

Kindly,

Papa in Tennessee

Six Months is a Long Time

My personal progression this first year of learning of my grandson’s diagnosis of Duchenne has resembled an extreme rollercoaster ride. It started with shock, anger and fear upon learning of the diagnosis in late April. Woeful sorrow and a fight against constant anxiety followed. Then, I embarked on a learning curve and joined the Duchenne community. Recently, I have re-dedicated myself to making each day count without worrying too much about the future and have delved into an advocacy to end Duchenne. All within just the initial six months since we learned of this tragedy on April 25th.

Meanwhile, the Duchenne monster has steadfastly progressed through the body of our very much loved grandson Hayes. Weakness progresses at glacial speed. Thank goodness his keen mind and spontaneous laughter are not affected. 

A lot can happen in six months. Only six months after Pearl Harbor was attacked, the temporarily crippled U.S. Navy significantly neutered Japanese naval forces in the Pacific. The first six months of 2009 saw the U.S. economy extricate itself from a Great Recession that had cost over 18 million Americans their jobs, devalued home values, and closed long-standing financial brokerages. On a lighter note, sports teams that many folks follow can go from also ran programs from the prior season to a champion during the next season based on what happens during the six month off-season.  

What can we do over the next six months to improve and grow our efforts to end Duchenne, recognizing that the Duchenne monster is not going to rest during that timeframe? 

To begin, let’s keep up with research and clinical trials, not just in the U.S but worldwide. Not only labs in Los Angeles and elsewhere in the U.S. but also in the U.K. and Canada are coming up with some intriguing new data. Support recently growing efforts for a database platform to be developed whereby essentially ALL new data and test results, wherever derived, become real time centralized into one library or repository accessible by anyone who may benefit from the additional findings. Push aside egos, territorialism, and funding concerns as all of us in the Duchenne community on the globe learn to benefit from the synergies that centralized knowledge relative to Duchenne can bring.  

Keep talking and writing. Teach the public. Raise awareness of Duchenne wherever our personal acquaintances and daily activities thrive. In the last six months, I have yet to find one single person who did not show interest in the subject of Duchenne IF I brought it up. Bring it up whenever and wherever possible, however it may be possible!  

Make every day count with the Duchenne child in our families. Every day. My grandson’s infectious laughter when I do the simplest or silliest things has become as important to me as food and water for my human and emotional nurturement.  

Let’s make the next six months count in a real way towards ending Duchenne.  

Kindly,

Papa in Tennessee

My Sidekick

Just finished watching a couple of television episodes of “The Andy Griffith Show”. Old school simple but wise humor, indeed.

 Andy is such a serious minded small town (Mayberry) sheriff. His goofy sidekick is deputy Barney Fife.

 Seriousness balanced with simplicity and humor makes the relationship work. Same was true with sheriff Matt Dillon and Chester, Johnny Carson and Ed McMahon, Seinfeld and George, and the list goes on.

 That emotional balance takes the edge off the underlying conflicts encountered by the relationship.

 What about Duchenne? My grandson Hayes has it … so terrible. If I allow myself, Duchenne can drive me to a deep and emotional abyss, a dark place I do not wish to occupy.

 So, I need a sidekick for balance, but who?  Grandson Hayes, without a doubt. He is smart, inquisitive, social, adorable … and, truly a very funny little guy.

 As an example, I recently was at his house on a Sunday when his father came home from a road trip gig. Hayes jumped into his father’s arms and exclaimed, “Papa, meet my Dad!” Of course, we all have been together for years.

 A comedian popular in the ‘80’s once said, “Through humor, you can soften some of the worst blows that life delivers, and, once you find laughter, no matter how painful your situation might be, you can survive it.”

 Grandson Hayes, you make Papa laugh, often. We have had a lot of laughs, together, and my hope is that we have thousands of more laughs together for years to come.

 Together, let’s continue to include laughter as one of the arrows in our quiver with which we fight to end Duchenne.

 Kindly,

Papa in Tennessee

Am I Handsome?

My Duchenne grandson does not take lightly to being photographed, especially when the family is together and really wants to get a fam pic. He is very contrarian (like his maternal grandmother whom I have known well for over 42 years).

I learned that, this morning, grandson Hayes actually cooperated getting dressed and “spruced up” for school. Why? It was picture day! He is a bit (O.K., a lot) of a ham and likes attention among his group of peers.

As grandson got out of the car in the carpool line and approached his special teacher, Hayes asked, “AM I HANDSOME?” The teacher beamed, acknowledged his good looks, and even offered to comb his hair … a taboo for Hayes but for school picture day.

Hayes is very well liked by his classmates, teachers, friends, neighbors and, oh, did I add, his family. He is irrepressible, just like his maternal great grandfather Jesse in Birmingham who was my best friend for 20 years prior to this death.

Jesse was full of life, just like Hayes. Jesse could strut like a peacock one moment, and be mischievous the next, just like my grandson. They both were/are sharp as a tack.

Are you handsome, Hayes? You bet you are! And, no matter what toll Duchenne takes on you and your body, you will always be a beautiful soul for your loving family.

We are absolutely nuts about you and want you to know that, regardless of what happens to the exterior, we will always love, adore and be very grateful for your interior warmth, joy, and beauty.

We love you, handsome fellow. Keep making us menfolk quite jealous!  

Kindly,

Papa in Tennessee

Change of Season

My personal progression this first year of learning my grandson has Duchenne resembles an extreme roller coaster ride. It started with shock, anger and fear upon learning of the diagnosis in late April. Woeful sorrow and a fight against constant anxiety followed. Then, I embarked on a learning curve and joined the Duchenne community. Recently, I have re-dedicated myself to making each day count without worrying too much about the future and have delved into an advocacy to end Duchenne. All within just the initial six months since my family’s personal 9-11 on April 25th.

 Meanwhile, the Duchenne monster has steadfastly progressed through the body of our very much loved grandson Hayes. Weakness progresses at glacial speed. Thank goodness his keen mind and spontaneous laughter are not affected.

 A lot can happen in six months. Only six months after Pearl Harbor was attacked, the temporarily crippled U.S. Navy significantly neutered Japanese naval forces in the Pacific. The first six months of 2009 saw the U.S. economy extricate itself from a Great Recession that had cost over 18 million Americans their jobs, devalued home values, and closed long-standing financial brokerages. On a lighter note, sports teams that many folks follow can go from also ran programs from the prior season to a champion during the next season based on what happens during the six month off-season.  

What can we do over the next six months to improve and grow our efforts to end Duchenne, recognizing that the Duchenne monster is not going to rest during that timeframe? 

To begin, let’s keep up with research and clinical trials, not just in the U.S but worldwide. Not only labs in Los Angeles and elsewhere in the U.S. but also in the U.K. and Canada are coming up with some intriguing new data. Support recently growing efforts for a database platform to be developed whereby essentially ALL new data and test results, wherever derived, become real time centralized into one library or repository accessible by anyone who may benefit from the additional findings. Push aside egos, territorialism, and funding concerns as all of us in the Duchenne community on the globe learn to benefit from the synergies that centralized knowledge relative to Duchenne can bring.  

Keep talking and writing. Teach the public. Raise awareness of Duchenne wherever our personal acquaintances and daily activities thrive. In the last six months, I have yet to find one single person who did not show interest in the subject of Duchenne IF I brought it up. Bring it up whenever and wherever possible, however it may be possible!  

Make every day count with the Duchenne child in our families. Every day. My grandson’s infectious laughter when I do the simplest or silliest things has become as important to me as food and water for my human and emotional nurturement.  

Let’s make the next six months count in a real way towards ending Duchenne.  

Kindly,

Papa in Tennessee

Dream Fulfillment

Yesterday, former President Jimmy Carter visited Nashville to participate for the week in a multiple home Habitat for Humanity build. He asked fellow workers in prayer to examine what they each needed in life to feel happy and fulfilled.

Prior to April 25th earlier this year, I personally would have answered, “Service to family and community to make a positive difference with my life.”

Then, we learned from doctors that my loving grandson Hayes has Duchenne Muscular Dystrophy. Life abruptly changed for us. I and members of my family have had to re-calibrate life goals and day-to-day expectations. It has been very tough.

Months later, my family and I continue searching for ways to make some small contribution towards raising awareness and pushing for more advanced research and testing to end Duchenne. We have taken baby steps forward.

So, what do I need now to feel happy and fulfilled? I will skip the happy part, at least for now, other than during those precious moments when Hayes’ joy and laughter brighten our days.

As for fulfillment: To work even harder and smarter to raise awareness of Duchenne and take additional baby steps to promote caring treatment for afflicted children and advanced research for finding a cure to Duchenne.

At this moment in my life, that is my most important service to family and community in hopes of making a positive difference for a population of loving children and their supportive families who so desperately want and need Duchenne simply to disappear from humanity, forever.

Kindly,

Papa in Tennessee

Communion

Today is World Communion Day. Christians across the globe are receiving the holy sacrament.

At the Last Supper, Christ intimately took care of some spiritual housekeeping. First, He and his disciples ate dinner together. There is something about breaking bread together to forge and maintain human relationships. That is one reason it remains important for families to eat together.

My favorite scenes in the popular police drama “Blue Bloods” involve the chatter around the dinner table as the Regan family dines together. I have been watching that family argue, laugh, probe, and love together for a number of years now and feel more enlightened each time.

What does that have to do with Muscular Dystrophy? Well, Duchenne brings the family closer together, and barriers against expressing true feelings fall. Emotional and spiritual intimacy becomes a catalyst for balance and thoughtfulness.

Jesus Christ had perfect health. My grandson does not … far from it. I see Duchenne as a devil living inside the little body of my precious grandson. I pray that love and caring within the Duchenne community will ultimately defeat that devil. Unfortunately, there will be a terrible human cost until the victory of good health arrives.

Therefore, we must recognize and take our other victories when and where they avail themselves. The kindness of others, making each day count, meeting folks whose various talents would be unknown but for this common ground, and redefining our purpose in Life are victories I personally am experiencing which I shall savor for the remainder of my life.

Duchenne families and stakeholders … what victories are you experiencing?

Kindly,

Papa in Tennessee

Wings of Hope

Caring parents and engaged family members have an awesome responsibility. We cultivate the lives of the children of our families with roots and wings.

My grandson has Duchenne Muscular Dystrophy. He has a terrible disease but fortunately very good roots. Our challenge now is to help him with wings, knowing his life’s flight is expected to be limited and tragically shortened.

Yesterday is gone. We should learn from its lessons. Tomorrow is yet to be but depends on today.

Hoping to help end Duchenne, I plan to quit focusing so much on personal disappointment and failed or underachieving treatments that could lead to a cure anytime soon; but, rather, to live today with greater vigor praying and working to optimize Duchenne awareness so that tomorrow may be a better day.  

The harder and smarter I and Duchenne stakeholders work to raise awareness and share helpful information,  the more freely my grandson and similarly afflicted children may be able to fly tomorrow and the next day. At least, that is my fervent hope.

 Kindly,

Papa in Tennessee

Fire and Ice

American writer Robert Frost is well known for his powerful poem, “Fire and Ice”. With his literary magic, Frost addressed how strong emotions, left unchecked, can lead to human destruction while an icy attitude can cause apathy and a lack of caring for others.

Duchenne – what a terrible muscle degenerative disease for young boys (and some girls). A real dream killer. How do we fight it?

September is Duchenne Activity Month. Members of the Duchenne community have been sponsoring walkathons, runs, cook-offs, and other fun activities to facilitate financial collections by some of the most ingenious means (such as firemen asking folks to “fill the boot”). Personally, I have been writing blog posts which can be found at www.rallyforhayes.com and www.duchenneawareness.org. My adorable and smart four year old grandson has Duchenne.

Whatever we do to raise awareness about Duchenne, it is important that we maintain steadfast efforts ALL YEAR LONG, well beyond the month of September. Stoke the fire, and let’s re-direct our fears, anger and, yes, even hate, towards the Duchenne monster into a positive and worthwhile energy that palpably supports Duchenne stakeholders in a way that finally tips the scale from merely symptomatic treatments and no cure to very efficacious treatments and a cure on the short horizon. 

As for ice, let’s not become apathetic or deferential to others believing someone else will work this horrific problem. You and I have a role to play.  

For the remainder of this month of September, I challenge each of us in the Duchenne community to carefully re-evaluate our respective roles in connection with the fight against Duchenne, lay out an action plan, then stick with that plan until next September. At that point, we can regroup depending on whatever developments may arise in the interim.

Duchenne destroys dreams. Let’s destroy Duchenne.  

Papa in Tennessee

Kindness Takes On Duchenne

Acts of kindness can change the quality of lives.

Open a door for someone; more than likely they will open a door for another. Smile at people and see them smile back. Let a driver change lanes in front of you and see them do likewise for another.

Kindness is free; it costs nothing. But, wow, does it pay dividends!

Duchenne is the most lethal form of the various strains of Muscular Dystrophy. A genetic train wreck, for one out of every 3,500 boys (and a few girls) born in the world each year. Duchenne causes progressive muscle deterioration. Physical limitations to braces to wheelchairs to breathing machine to heart failure. Duchenne is a death sentence and torture for those who have it.

There is no cure, yet. Treatments are basically symptomatic and simply buy time.

This makes kindness all the more important. Positive attitude, patient support, loving gestures, having fun times, prayers together. The list is essentially limitless.

Kindness is the one human power that the Duchenne monster cannot and will not destroy.

And that means spreading awareness about the effects and promises of treatment of Duchenne.

Please, let’s work together to end Duchenne.

Papa in Tennessee

https://www.parentprojectmd.org

https://www.cureduchenne.org/

https://www.duchennexchange.org/

https://www.mda.org

In Kindness,

Papa in Tennessee

September, 2019

September is Duchenne Action Month

In years past, the month of September has always marked for me the beginning of football season and the end of long hot summer nights. Now, unfortunately, this September month has been consumed with helping raise awareness for a terrible disease that afflicts my adorable four year old grandson Hayes and similarly situated youngsters.

September 7th was Worldwide Duchenne Awareness Day. This month of September is Duchenne Action Month.

Duchenne is the most lethal form of the various strains of Muscular Dystrophy. A genetic train wreck for one out of every 3,500 boys (and a few girls) born in the world each year. Duchenne causes severe muscular deterioration that, over a few years’ time, progressively weakens the patient to physical limitations to braces to wheelchairs to breathing problems to heart failure. Not only is Duchenne a death sentence but also a torture sentence for young people who absolutely do not deserve such tragedy.

There is no cure on the horizon, yet. Treatments are limited basically to pain and swelling symptomology.

What can we invested onlookers do about such a monster? First, become more aware of the disease itself and the human and financial toll, pharmaceutical and biomedical efforts, and family support groups involved with Duchenne.  

Does increased awareness truly help? You bet it does! For example, Tennessee Governor Bill Lee issued an official proclamation decreeing September 7, 2019 as Duchenne Awareness Day for the Volunteer State. All it took for that public announcement to happen was simply for ordinary folks without political connections like me to educate the Governor’s Office on the horrible reality of Duchenne and the need for greater awareness in hopes that individuals and organizations may pick up or at least participate in the cause to end Duchenne. 

In the initial days following the Governor’s proclamation, I had a number of people ask questions about this nightmare and, in each case, those individuals at a minimum said they would pray for our efforts to be successful, sooner rather than later. From the reach-out of one ordinary person to the Governor to group attentiveness to invoking God’s grace and mercy, all in a matter of just a few weeks, demonstrates how exponentially impactful efforts of one person can become because such efforts simply are the right thing to do.

We want to make Duchenne awareness even more powerful by emphasizing how acts of kindness turn knowledge into action. Kindness can take the form of merely listening empathetically to a Duchenne parent/family member explain her/his anxiety over the child’s wellbeing without offering advice (since even well-intentioned advice can be misplaced if not downright hurtful).

Do not assume that teachers and school counselors have a clue as to how best to interface with a Duchenne child; that normally is not the case. Quickly come down on bullies; educate their parents. Invite the Duchenne family to participate in neighborhood and group activities with non-afflicted family members to maintain normal relationships with child and adult alike. Participate in the walkathons, runs, cook-offs, and other fun events that are ever-occurring to raise awareness and funds to combat Duchenne.

Let’s rally together to help spread awareness and end Duchenne.

In Kindness,

Papa in Tennessee

September, 2019

Duchenne Cannot Become a New Normal

Just going about an ordinary day at the office and I get a call from my wife of over forty years.

“Our grandson has Muscular Dystrophy. It is the worst kind, Duchenne, always fatal.”

 I normally do not hang up on people; I hung up on my wife. I normally do not scream, especially in an office environment; I hollered out in severe pain. I am a pretty steady individual; nonetheless, I emotionally fell into a deep, black abyss. Almost vomited. Throat tightened. Stomach churned. Hands shook.

 Weeping is not normal behavior for me … regardless of the bad news. Here, I balled for what seemed to be an hour, in my office, behind a closed and locked door.  Leaving the office early is not normal for me; on this day, I left early.

My wife and I embraced, cried and cried some more. She tried to fill in details learned from our daughter but could only talk in sentence fragments. Our hearts were in fragments.

I immediately drove to my grandson’s home and what, thankfully, was normal about this terrible day was when our grandson enthusiastically entered the home after school and jumped into my arms and joyously exclaimed, “Papa!”. I finally felt a moment of much welcomed normalcy in the form of a child’s love.   

Grandson Hayes had no clue that something was wrong with him… just like us, before that day. My daughter remained steadfast, at least in the face of her son, during the early weeks after revelation and maintained as much normalcy for our grandson as she could muster under those inexplicable circumstances.

My son-in-law and I immediately immersed ourselves into due diligence: We studied the excruciatingly slow pace of testing and test approvals of treatments for Duchenne (with no cure in sight) over the last few years, met with Duchenne parents near where we live and, very importantly, attended a four day annual conference of the Parent Project Muscular Dystrophy foundation in Orlando where we were schooled by foundation leaders, Duchenne parents, doctors, clinical test staff members, statisticians, pharmaceutical reps, and other stakeholders, and prayed … a lot.  

I dug in. The only way I could return my emotional state and home life to some reasonable semblance of normalcy was to immerse myself into research and the objective assessment of the lifestyle progression of the dreadful disease, trying at the same time to ignore the pharmaceutical companies’ frustrated run towards finding safe and worthwhile treatments for Duchenne in hopes of reaping large financial gains during the quest. I focused on initial practical steps which we as a family could take to ease our grandson’s introduction to the fact that he is different in an ill-fated manner. Thank goodness he also is different in terms of being so bright and scientifically curious.

Normalcy is relative. Am I still dark … No. Worried, sick … Yes. Do I still weep … certainly on the days when I am reminded of how loving, bright and spirited my grandson is juxtaposed against the degree of body deterioration and level of discomfort that lie before him.

Hope lives. There presently is an emerging serious development of a clinical test trial platform that, when implemented, could bring together all real time data and resources helpful among the searchers of truth to mitigate Duchenne and affected parents which just might pave the way for the discovery, approval, and ultimately affordability of treatments that may buy us some time for a cure or cures to be discovered (hopefully while there is still time for grandson Hayes and his similarly affected peers).  

I once heard it said that, “Normal is an illusion. What is normal for the spider is chaos for the fly.”

 What now should be my role with respect to helping mitigate and eventually ending Duchenne? As normal, be a loving and supportive father, a fun and teaching grandfather, a patient and empathetic husband, an effective professional person, a dutiful citizen, and a faithful believer. We must stop this abnormally dreadful killer of young boys (and girls) and the dreams families carry with each newborn child.  

We pray for the kindness of others to share in our cause and God’s grace during this unwanted journey that we are taking on for our grandson and for all families dealing with Duchenne and its currently inevitable death sentence. We need a cure, sooner rather than later.   

Living with Duchenne should not become our new normal. Dedicating my remaining life to ending Duchenne is my new normal. Others’ talents and kindness, our family love, and God’s grace will be the arrows in my quiver as I go hunting for treatments and cures for Duchenne. The Duchenne community is rededicated to raising public awareness about this terrible disease. Hayes and similarly affected children may overcome Duchenne but only if stakeholders in this quest focus on exercising best efforts and give generously of their time, talents, resources, and positive energy to stop the suffering that the Duchenne monster so dreadfully causes. 

For Hayes and his very special peers, I pray and ask that we as a community double down on efforts to exchange information and build awareness about this most lethal form of Muscular Dystrophy to help cure and end Duchenne.

Papa in Tennessee

September 11, 2019