After The Headline is Forgotten

The fired radio hosts of Mayhem In The Morning on 790 AM The Zone, Nick Cellini, Steak Shapiro and Chris Diminop apologized to retired New Orleans Saints football player Steve Gleason and the class act this gentleman is accepted the mandatory apologies. Why do I feel their attempts at forgiveness were insincere, because after the terminations the cruel unemployed hosts continued the sickening comments on Twitter.

Reading through the headlines on Google last night regarding the vicious mocking of a man fighting for his life I came across, Dr. Craig Open Letter to Steve Gleason, former NFL Player and ALS Survivor in minutes my heart was breaking. There have been stories of ALS/Lou Gehrig’s disease reversals almost as long as this tragic disease has had a name, but the outrageously priced “cures” are always located in third world countries by healers or physicians with backgrounds one would never trust unless extraordinarily desperate. I have heard of Craig Oster, PhD, I believe he is a facebook friend of mine. I opened the link and began reading with a bias and skepticism. Craig isn’t selling snake oil from a third world nation and our experiences with ALS have many similarities. His holistic approach to his body and life would benefit all of us. There were two Youtube videos documenting his progression and reversal. I watched the first video of his progression and efforts to reverse the disease process. He definitely has this damn disease. I must admit my heart was racing before clicking on part 2, am I going to see the miracle I have longed for since my diagnosis?

In the early nineties I qualified to participate in a double blind drug trial testing the effectiveness of a drug called CNTF to slow the progression of ALS. A double blind drug trial is a tough pill to swallow for an individual diagnosed with a terminal illness some go as far to claim unethical, because a percentage of participants in the trial receive a placebo. This was back when I wasted a lot of precious time with the mindset nothing short of a cure was acceptable. I began the trial of subcutaneous injections twice a week with a hyper optimistic outlook. I was certain this drug was the cure. I was monitored monthly with a series of diagnostic tests. I was tested before starting the injections to establish a baseline. During the tests I could see my results be it a graph on a monitor or the number of repetitions achieved. I reveled in the personal challenge. When I began having a consistent reaction to the injections I was absolutely certain I was receiving the drug and not a placebo. I could not wait to feel the stick of the needle followed by my cure being injected, healing and reversing all progression. Two months into phase one of the trial my left wrist, which had been paralyzed for over a year began to slightly flex on command. I could not wait to hug my children, walk then run! I went to Emory for my monthly testing and received devastating news. The drug trial had been halted because patients were reacting adversely to the drug. That made perfect sense because of my flu like symptoms twice a week, but my cure was being ripped from me then I learned I received the placebo. Mind over matter is a post for another day.

Clicking on part 2 my heart was in my throat. Dr. Craig still had symptoms of advanced progression, slurred weak speech, reed thin limbs, shortness of breath, emotional liability. The play bar indicated the video was concluding. I was rooting for Craig, come on buddy recover! The video ended as well as my high hopes. I admire Craig’s endless determination and perseverance, but the guy has not discovered a reversal to the disease. My desperate hope for a cure has been tempered by a quarter century of failed drug trials and the deaths of countless friends, but the newly diagnosed progressing typically without hope of longevity are exponentially more desperate.

New York Giants v New Orleans SaintsBeing a professional athlete, Steve Gleason possesses competitive standards and optimism us mere mortals cannot comprehend. He knows he is going to be healed so you can imagine the devastation to his psyche hearing “Knock knock. Who’s there? Smother. Smother who? Smother me.”   AUDIO mocking Steve Gleason

The public is rightfully outraged, but they truly have no idea how horrific this disease is. Steve Gleason uses an augmentative communication device to communicate, because his utterances are no longer intelligible. ThisThe devastation indicates bulbar involvement, which means Steve’s ability to swallow is compromised choking easily. This deterioration is accompanied by the weakening of muscles that facilitate breathing. ALS sufferers experience chronic fatigue and a dull headache, because of the diaphragm’s inability to expel all of the carbon dioxide from the lungs. A simple head cold can quickly turn into a lethal double pneumonia due to aspiration.

We swallow an enormous amount of mucus daily draining from our sinuses and pushed up from our lungs. ALS sufferers choke easiest attempting to drink water prior to the placement of feeding tube thus most are dehydrated causing secretions to thicken. A dime size mucus plug can cause death. Remember the weakened breathing muscles? The atrophied muscles can no longer generate a cough powerful enough to simply clear the airway, an exercise healthy people do several times a day, but this husband, wife, father, mother, brother, sister or friend cannot and suffocates to death. They smother! If you have ever experienced an obstructed airway for a minute or two unable to move any air, if you’re coughing you are breathing, you know our hell.

This is Steve Gleason’s reality after the headline is forgotten and 30,000 of us diagnosed annually. I’m pulling for you buddy!

I believe soon I will do a photo journal of a typical day for me. I know it won’t change the hearts of those three clowns, but you will see what a saint Carey is and all spouses that must take on dual roles of spouse/caregiver and might give one pause the next time they hear ALS or Lou Gehrig’s disease. Thanks for reading. Have a great day! dj  

Posted in Blog
2 comments on “After The Headline is Forgotten
  1. Tony Podboy says:

    Thanks for your perspective on this David.
    I didn’t give those ratings monger fools the time of day…I can’t believe the insensitivity & down right cruelty of some people & what they will do…
    I do know, they will never be employed in “journalism” again. They have the very worst kind of disability… stupidity.
    I really appreciate your perspective. You are a mentor & roll model to us all.
    Carry on, my friend…

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