Faithful unto Death: My Dad's Dystonia Story
My father, Ralph LeMarr, battled dystonia for about 50 years. He was nearly always in pain, initially received poor or no treatment, was told it was “in his head,” etc. Even some church folks offered crazy theories about demons and lack of faith, but he didn’t let it stop him from working hard at his job, serving in his church, and providing for our family. He passed away in October, 2021, and I share his story in hopes of encouraging others.
Sometime around 1970, when I was in junior high school, Daddy started behaving a bit strangely. Increasingly, he came home after working all day as an inspector at Beech Aircraft Company, sat down in “his” chair and leaned his head back, rubbing the muscles on one side of his neck, saying it was “bothering him.”
Daddy worked hard. A WWII Marine veteran, he returned to the Arkansas Ozarks in 1947, married my mother, and bought a small farm. When successive drought seasons put him in debt, he moved the family, which included my older sister, to Kansas, and went to work at Beech. He used GI benefits to study sheet metal and mechanical component assembly, since growing up in rural Arkansas hadn’t given him the opportunity to attend high school.
I joined the family in 1957; and in 1960, we moved back to Arkansas when my mother was diagnosed with a brain tumor and wanted to be near family. After she passed away and Daddy remarried, we returned to Kansas in 1963. He worked at Beech (later Raytheon and now Textron) for the next 25 years. As a final assembly inspector, he was the last person to sign off on every King Air landing gear before the test pilot got in, and he took pride in doing his job well.
The neck problem got worse. Over-the-counter painkillers gave only minimal relief, and spine adjustments by our osteopathic family doctor didn’t help. Daddy’s neck began pulling to one side, and sometimes the muscle gave a sudden, violent jerk. The concentration required to look forward and focus was exhausting by the end of an 8-hour workday.
Daddy kept working, though; he received Zero-Defect citations and bonuses for suggestions for streamlining the landing gear assembly process. In his entire career at Beech, he only received one corrective write-up for overlooking an issue; disgusted with himself, he vowed it would never happen again, and it didn’t, in spite of the pain. Every night, he led our family in scripture reading and prayer, and he always thanked God for his job. When the union voted to strike, he didn’t participate, saying he was earning more than he ever had at farming. When the union boss threatened those who tried to keep working, Daddy found temporary work digging, by hand, a basement under an existing building, carefully inserting proper support as he went. The work made his neck hurt worse, but those support joists are still there.
As the pain and lack of muscle control got worse, Daddy cut a chunk of foam to fit the driver’s headrest of our car and fashioned a stiff collar to help hold his neck straight. He continued to do our car and home maintenance, kept the lawn nicely mowed, helped my stepmother raise a garden, and never missed church.
He finally applied to the Veterans Administration hospital in Wichita for a check-up. They could see he had a problem—“Your neck muscles are malfunctioning”—but did not offer solutions or verify any connection to his WWII service, even though he was exposed to radiation during the Occupation of Japan.
VA doctors prescribed stronger painkillers and muscle relaxants. These made it even harder for Daddy to do his job; he was exhausted after work, but somehow during that time, he felt led to do ministry in the county jail. He took correspondence courses with the Assemblies of God for basic ministerial credentials—back when correspondence meant just that, mailing laboriously handwritten answers to essay questions. Despite his limited formal education, he wrote Bible studies and outlined difficult Bible passages to earn A’s and B’s in every course. And the neck pain and muscle jerking got worse.
Friends were praying for him, although a few people offered less-than-helpful suggestions about demons and not having enough faith. Daddy continued to read his Bible and trust God. When guys at the jail inquired about his neck, Daddy preached about Daniel chapter 3, saying he would serve God whether or not his condition improved. Several inmates came to faith and turned their lives around.
In case the problem was a psychological one, the VA made a psychiatrist referral, but that doctor just prescribed stronger medicine. That caused Daddy to see and hear things that weren’t there, so he backed off the meds a bit so he could continue to work. He also went, at his own expense, to Mayo Clinic; he had heard they were very thorough at finding underlying issues, so he put aside his aversion to flying and went to Rochester. The clinic doctors did not have solutions, but they did give a diagnosis: spastic torticollis, a form of dystonia attacking the muscles around the cervical collar of the neck. And for the first time, Daddy met someone else with dystonia, a woman at a church conference who recognized his symptoms and wrote him an encouraging letter.
Mayo doctors prescribed use of a pulley that hooked over a door frame, with increasing amounts of weight to pull Daddy’s neck straight as he sat in a chair. Ever see the episode of The Andy Griffith Show where Barney Fife is trying to get taller? That’s what it was. He did it about 30 minutes daily, and it helped—for that 30 minutes and about 10 more.
The strong medications were almost too much; Daddy struggled to focus on his studies and responsibilities. One night, he collapsed in the bathroom, and my stepmother and I couldn’t get the door open because he had fallen against it. I finally climbed in the window and washed his face with cold water until he regained consciousness. He didn’t remember exactly what happened, but he promptly went to the storage shed, got his tools, and reversed the door hinges so it couldn’t happen again. He also voluntarily cut back on the medications, gutting it up to continue working through the pain.
I attended college in Wichita, got a job, and married, with Daddy’s head slightly to one side while walking me down the aisle and in wedding photographs. A few years later, my husband and I presented Daddy with a granddaughter to go along with my sister’s two much-older boys. When my husband’s job circumstances changed, we moved to Arkansas, figuring my parents would eventually move back to the Ozarks, which they did when they retired in 1988.
Daddy missed the camaraderie of his Beech department, but kept busy with woodworking projects and a large garden. They found a church, and he transferred his credentials to Arkansas to do pulpit supply and jail ministry, along with leading the prayer team.
All this time, family and friends kept praying, and people at the new church prayed for him. Shortly after the move, a breakthrough finally came—not the miracle he had hoped for, but a breakthrough nonetheless. The VA hospital in Columbia, Missouri, started an experimental program of botulism toxin injections for dystonia, and someone in Wichita found Daddy’s old records and made a referral.
I drove, since he didn’t know how the shots would affect him and my stepmother wasn’t confident driving the 3+ hours each way. Although the stress and the shot itself caused pain for a couple of days, there was a noticeable difference. He cut back on his other medications and enjoyed visiting family around the area. By this time, I had a second child, Brian, and Daddy took him fishing and built a swing for him and Ashley in the backyard.
Daddy continued the BoTox shots; fortunately, CoxHealth Neurology in Springfield added a doctor trained in the procedure, cutting down on the drive. When my family moved farther from Harrison for a job, church friends stepped in to help. After a few years, the shots seemed slightly less effective and the muscle relaxant Baclofen was added. My stepmother passed away in 2010, and we were concerned about Daddy living alone at 85, but he insisted he’d be fine. My sister, retired and living closer, tried to visit often. He was diagnosed with an aortic aneurysm in 2014 and had a scary infection after a stent placement, but recovered.
In 2016, my sister passed away; she also had an aortic aneurysm and her stent failed. Daddy took it pretty hard, and I had to step up my visits to handle responsibilities she previously covered. It was hard, working full time and living over an hour away, but I checked on him weekly and accompanied him to doctor appointments. He continued to do fairly well after each quarterly shot, but I was concerned about the Baclofen; I had read about side effects including muscle weakness, and Daddy was starting to struggle to get out of his chair, but he resisted household help.
I had a lot on my plate with a full-time job, a diabetic husband, a small acreage with garden; then my husband’s dad moved in with us. I managed to make the drive every Saturday and sometimes a weekday evening as well. I did some laundry or cleaning, made sure medication was disappearing at the correct rate, and picked up groceries. It wasn’t ideal; I feared he wasn’t drinking enough water, he often breathed heavily, and I realized he wasn’t getting any exercise other than the short trek to the mailbox. But with church friends stopping by and a couple of neighbors who called if they noticed anything out of the ordinary, we were managing.
Until we weren’t. One Saturday in late summer 2018, I had a work conference and decided to attend church with him on Sunday instead. He didn’t answer when I tried to call, but I assumed he was in the bathroom or had laid his phone down, so I left a message.
Big mistake. When I arrived at his church on Sunday, he wasn’t there. I sped to his house and found him in the kitchen floor, where he had obviously fallen on the way to take his medicine the evening before. That started a nightmare of hospitalizations and medical decisions. He was diagnosed with general muscle weakness, dehydration, and age-related COPD, which created frequent respiratory issues including pneumonia, and after a few months, I made the tough decision to put him in long-term care. He recovered enough to enjoy socializing with other veterans at the facility, and I was able to stop worrying about falls or inadequate nutrition.
During one particularly scary hospitalization with pneumonia, I thought he was a goner and switched him to “comfort care only,” meaning routine meds including were stopped. Amazingly, he recovered, and the nurses discovered he was doing better without the Baclofen than with it, confirming my suspicions that he had been on it far too long.
Facility staff transported him for his quarterly BoTox shot. When staff members mentioned his neck issue, he responded it had been a long time, but God was faithful and he was thankful for “those shots” helping him cope for the last 20 years. He enjoyed visits from church friends, a few cousins—he had outlived all of his own generation and many of mine—and especially my kids and my young grandchildren.
Eventually, age caught up with Daddy; he became weaker and “comfort” breathing treatments more frequent. Covid-19 restrictions were awful; with less socialization, and unable to supplement his failing hearing with lip-reading because of masks, his cognitive abilities declined; he never really got used to a hearing aid. Restrictions finally eased enough that I could join him for meals, though, and on October 8, 2021, I visited for lunch. Daddy was chipper, ate his dessert first as he often did, and enjoyed old gospel songs I sang and played on my guitar.
Three days later, October 11, the nurse called to say his COPD had escalated drastically. I hurried to be with him and spent the day singing old hymns about heaven and holding his hand. Sometime in the early hours of October 12, Daddy received ultimate healing from the condition that plagued him for at least half of his 95 years.
My dad’s story inspires me to keep fighting, doing my best, and trusting God, no matter what. I’m also inspired by his thankfulness—for his job, for family and friends, and for the technology of the injections that enabled him to enjoy his retirement years more than would have been possible otherwise. I hope his story inspires others to keep fighting the good fight.