ALS: A Widow’s Point of View

FALLEN SOLDIERS MARCH® is a 501(C)(3) non-profit dedicated to providing biblical counseling, service dogs, and veteran advocacy. I encourage you to visit their website to learn more about what they do and how you can help.

With Jim Retzke’s permission, from time to time I will post articles from their newsletter. (Jim is president of the organization.) This one is titled “Widow’s Point of View into Operations Desert Shield-Desert Storm 100% Service-Connected ALS.

2 Timothy 4:7: I have fought the good fight, I have finished the race, I have kept the faith.

We met in early fall of 1998. It was Friday night. Keith Button watched me walk past him toward the Virginia Beach’s Septembers Club dance floor.  Keith had decided that after he finished his cocktail and potato skins, his next step was to ask me to dance.  Shortly afterwards completing his beverage, he looked to see where I was, but he could not find me.

A friend and I had left to go to Worrell Brothers on the Virginia Beach Oceanfront.  We had no plans to return to Septembers.  However, two hours passed, and we still didn’t see any of our friends. So, we decided to return to Septembers.  Shortly after we arrived, Keith began walking toward me as we made eye contact.  He saw me roll my eyes at him with disinterest.  He had long spiral curled hair down to his waist, not exactly “my” type.  Keith decided to still “proceed as planned.” If I said no, he would continue walking toward the exit door behind me.

Up close, his burly looks did not match his very polite, relaxed and soft-spoken demeanor. “Yes!” I thought to myself; this Harley riding, pot smoking, tall and handsome dude has “no lines memorized?”  I was quickly reminded of the hazards associated with judging a book by its cover.

Keith was a devoted father, libertarian, Christian and Army Veteran, having served as a Water Craft Engineer in the Gulf War (1987-1991).  He rode a bike; however, did not smoke pot!  Keith’s deep green eyes and kind smile became very attractive . . . minus the long hair!  As he walked me to my car, he offered to give me his number, thinking to himself I would not give him mine.  I told him I will not call. “I am old fashioned – I don’t call guys.”. He politely asked for my phone number, returning one of the biggest smiles when I gave it to him.  I woke up the next morning to my phone ringing. Keith and I talked for hours.  Days led to weeks, weeks to months, and we became inseparable for 18 years.

What was our marriage like?  We planned, strategized like soldiers ready for combat, argued at times and learned to agree to disagree.  No matter what challenged us, we owned it and tackled it “together.”  Keith learned to roll egg rolls like a pro and sweep with a bamboo “filipino broom.”   An Indiana native, he learned to love the beach just as much as I do.  Keith taught me to tile floors, build a flagstaff stone Koi pond and enjoy an organic garden!  Marriage was challenging at times; we both had ex-spouses and three teen age girls in the mix!  We loved to entertain, and friends visited often.  My daughter married and had a baby girl who fondly called him “Grampa.”. Keith was the apple of her eyes and vice versa—I learned to accept being the third wheel.

Our lives were blessed with the companionship of two Shih Tzus named Tobi and Lulu.  Our home was full of love and laughter.  We worked hard at being “debt-free” and managed to vacation on the beaches of the Outer Banks.  We were grateful that through the kindness and generosity of a dear friend, we always had open invitation accessibility to his beach house. Memories of beach horses, grilled rib eyes and seafood feasts abounded!

However, during our summer vacation in late August of 2011, Keith tripped going down the beach house steps, resulting in a limp.  The limp lasted several months before progressing to a “dropped foot.”  Keith saw my chiropractor and several specialists in vain.  Several more months passed, and the dropped foot exacerbated. Keith began dragging his leg while walking, occasionally losing his balance and falling.  Keith’s sprained ankle clearly was getting worse, not better!

What Is ALS? 

Life was not perfect, but life was good.  We had matured as a couple and had arisen to many challenges.  I remember co-workers celebrating my recent promotion at a luncheon.  My employer punctuated this promotion by remodeling my office, replete with new furniture.

On a winter day in 2012, I was eating lunch at my desk while looking out the window; I thanked the Lord for all the blessings in my life—my heart was full.  The phone rang, Keith calling after returning from another appointment concerning his leg.  I could hardly understand him as he was sobbing.  All I heard was “A-L-S . . . 2, max 3 years to live.”  What in the world is A-L-S???  My frantic research began on the internet.  Lou Gehrig, aka “Iron Horse,” played Major League Baseball as a New York Yankee (1923-1939).  Lou Gehrig was diagnosed with ALS, ended his career in 1939, and lost his ALS battle in 1941, just  two years after his initial diagnosis.

“ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. A-myo-trophic comes from the Greek language. . . . Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body.”

Keith’s “dropped foot” progressed to a “dropped leg,” causing Keith to lose his balance and fall.  Keith was 6’2″, 250 pounds.  I could not lift him up when he fell to the floor; often I had to call the Fire Department for help.  The local Fire Fighters were an insightful, cheerful team of guys that graciously cheered him up, joking about his beloved “Steelers” to distract Keith from being embarrassed.  Often Keith’s solemn facial expression would quickly turn into a big smile, at times, laughter.  The Firefighters would always arrive within five minutes, no matter what time of the day or night they were dispatched.  As Keith’s falls became more frequent, out of appreciation for the Fire Fighters’ rapid responses, I would pre-make home-made eggrolls, freeze them and have them ready to serve, sweet and sour sauce on the side to hand to them.  Although they were happy to help, it became clear that their service was only an interim solution. Keith’s disease progression signaled I would need additional help and equipment to take care of him.

By the fall of 2014, Keith needed full time home care or VA hospital confinement in Hampton, VA.  Hampton is a thirty-minute drive, much longer during rush hour traffic.  My career was demanding; commuting to the hospital would have only allowed me to see him on weekends.  The progression showed no sign of slowing down, but I trusted God to guide my thoughts and daily path.  The Bible says we are to place our marriage and spouse second only to God.  Consciousness toward biblical knowledge and obedience does not make an immediate decision to walk away from a thirty-year career easier, transforming into a full-time care giver for a disease I knew nothing about.  Immediately I was challenged to learn medical terminology, to accelerate medical equipment and supply deliveries and scheduling home care medical staff, my “new norm.”. The challenges did not end there—I did not have a clue what would come next.

The financial burden was astronomical.  However, because ALS is 100% service connected (predicated upon deployment location and years of service), the VA provided most equipment, supplies and a grant to modify our home.  Unfortunately, the disease progression often accelerated faster than I could obtain time-sensitive critically needed medical equipment and home modifications to adapt to Keith’s rapidly declining independence.

Suddenly, Keith was no longer able to climb stairs, and an Automatic Lift Chair was required to help him reach our second-floor bedroom.  Until installation, Keith was forced to sleep on the first-floor couch.  Keith ultimately required two Hoyer Lifts for each floor to assist me in lifting him off the floor when he fell, into a chair or onto his bed.  Walking with a cane rapidly declined to purchasing a pair of “walkers” for each floor.  Within several weeks, Keith’s impairment deteriorated, prompting the purchase of manual wheel chairs for each floor to facilitate mobility.

ALS Diagnosis Is 100% Service Connected for Gulf War Veterans

“Scientists have yet to find a cause for why America’s military veterans are approximately twice as likely to develop ALS than other segments of our population. The U.S. Department of Veterans Affairs recognizes ALS as a service-connected disease and provides financial and medical support to those with at least 90 continuous days of military service.

“Study after study continues to demonstrate this to be true: If you serve in the military, regardless of the branch of service, regardless of whether you served in the Persian Gulf War, Vietnam, Korea, or World War II, and regardless of whether you served during a time of peace or a time of war, you are at a greater risk of dying from ALS than if you had not served in the military.

“Factors that might contribute to the increased risk of ALS in veterans include exposure to lead, pesticides or other environmental contacts. Tobacco use also increases the risk of ALS, independent of military service.”

Source ALS Association

Ultimately, our home was ADA modified, replete with a ceiling lift, deck and elevator, hardwood floors and wide doors to accommodate a power wheelchair.  The challenge was finding an ADA Contractor who is knowledgeable, efficient and experienced.  Moreover, it was difficult identifying a contractor willing and able to complete the required paperwork expeditiously to transition efficiently to each new construction phase.  The Specially Adapted Housing Grant is available to veterans or service members who are entitled to compensation for permanent and total service-connected disability due to the loss, or loss of use, of both lower extremities.  Currently, the grant is limited to $81,080:

Many challenges exist when constructing an ADA compliant home addition: weather conditions, material availability and inspections.  Additionally, ADA-focused inspections and milestone payments complicate construction progress.  Our VA Grant Administrator warned us, sometimes a veteran passes away before construction is completed.  Knowing how to evaluate and select a seasoned, reliable and trustworthy contractor is a critical decision before beginning a project of this magnitude.

By early spring of 2015, Keith lost complete use of his arms, and a power wheel chair replaced all manual wheel chairs.  VA Grant was insufficient to replace our carpeted rooms. However, we identified supplemental non-profit grants to replace all first-floor carpeted rooms with power wheel chair compliant hard wood to accommodate functionality, an additional $6,000 expense.  God is good; the ADA compliant room addition was completed in June of 2015.

Three years after being diagnosed with ALS, Keith and I celebrated our 15th year Wedding Anniversary in February 2015.  Before ALS, Keith could outrun friends ten years younger than himself and move  machinery weighing in access of 450 lbs unaided while working.  Keith was a “Work Horse” in terms of natural strength, determination and energy.

However, three years after his initial ALS diagnosis, Keith was confined to a hospital bed, kept alive by an oxygen machine and nourished via a feeding tube.  This is a message I sent friends two days before the anniversary party, so they were not shocked after arriving into our home:

“For those who can come, but have not seen Keith in several months, I want to make sure you are prepared. Unfortunately, he is unable to speak or shake hands.  Recently, he began having trouble swallowing and drinking water. So, last Friday he had a PEG surgically installed in his core/abdomen area. The good news is, in just a matter of days, he gained a little hand and fingers function that he lost, improved his nutrition, hydration and even his breathing levels.

Although “he is still very sore in his core/abdomen area,” he is not as fragile as he looks! He still has his wit and will enjoy a conversation, even if all he can do is nod his head. He is able to manually spell out words on his homemade key board and his nurse or I will be delighted to help, if needed.”

My 30+ year contracts and procurement career did not prepare me for the challenges I faced.  Learning the medical terminology and how to use medical equipment was daunting.  In the beginning, we were blessed with a loving and thoughtful nurses’ aide, Suzanne.  Although the VA provided equipment and a nurses’ aide, VA polices, procedures and logistics fostered hassle factors—not necessity, efficiency or effectiveness. Case in point, nurses’ aides can only assist; they are not licensed to legally operate any of the medical equipment.  Simple acts of showering or grocery shopping subjected Keith’s life to risk if any of the equipment required immediate attention or troubleshooting.  I learned how to aggressively strategize, contest and override VA policies that led to the assignment of registered nurses, approved to troubleshoot the oxygen machines and feeding tubes essential to keeping Keith alive.

After 4.5 years, Keith and I lost our battle with ALS.  Keith returned to be with the Lord on January 22nd of 2016. I remember sitting in the Emergency Room, hearing the heart machine stop, watching the hospital staff swarm over him. I was only able to see his feet from my vantage point.  A nurse stood guard, keeping me away from Keith as they tried to resuscitate him.  I remember praying, asking the Lord that if I lost Keith that God would let me know that Keith went to heaven.  Unexpectedly, I saw an opportunity, I quickly passed by the nurse, grabbed both of Keith’s feet to caress, crying with heartache and anguish for the state of my husband.  I recall gazing up toward the heart monitor machine, and Keith’s heart began beating again. Within seconds, the nurse pulled me over, isolating me away from Keith’s  bed. The machine quickly lost its sound and displayed Keith’s heart stopped beating.  I am forever grateful for our good friends, Kathy and David, who were kind enough to come to the hospital to help me face the darkest time of my life.

On the same day, I praised God for answering my prayers.  Unbeknownst to me, Keith had generated and sent me an e-mail using his “Eyegaze” equipment two days prior to his death, a message I read the night of his passing:

“I have been praying to Jesus for direction.  I believe that He is not done with me.  He wants me to help others and save them from the misery and pain.  I believe that is why he put me through this to humble me.  To know the pain so others won’t.”

Knowing in my heart that Keith is in Heaven has provided the comfort I needed to pick up the pieces and look forward to what God had in store for me next.  Keith would not want me to feel sorry for myself, be bitter or sad.  Keith knew I am happiest caring for others; he would want me to share what I learned with all patient caregivers and veterans diagnosed with Motor Neuron Diseases: ALS, Multiple Sclerosis, Parkinson’s Disease along with a myriad of other debilitating diseases.

It’s 2019, I praise God as I write this article.  I was gifted a new life and my career has been restored.  I was even given yet another chance at love with Jim Retzke, President of Fallen Soldiers March (FSM) who like me is a devoted Christian with a passionate heart driven to assist veterans and military families challenged by the “consequences of war.”  FSM lovingly gifts Certified Biblical Counseling, Service Dogs & Veteran Advocacy to our National Heroes.

If you or your veteran suffers from motor neuron diseases, as the Fallen Soldiers March Director of Veteran Advocacy, I am passionately connected to your journey.  I will walk, stand by and fight with you to get not just what you need—I will work diligently to get it when you need it.

by Gigie Button, Fallen Soldiers March Director of Veterans Advocacy

One comment

  1. I was very moved by the post about Keith and his wife’s battle with ALS. Our God is good to allow Keith to help others by sharing his story. His wife is truly a brave, courageous warrior as well. Bless you both for helping many who are going through the same struggles and challenges you two endured for years. I am grateful Keith’s wife is still working to help veterans and their families. How wonderful his wife has teamed with Jim Retzke, President of Fallen Soldiers March (FSM). HalleluYah! May God help all those in need ‘overcome’ these challenges in their lives with victories! Bless you all for your servant hearts!


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