I always had empathy for those with cerebral palsy. Born with brain damage, these poor souls spend a lifetime with much of their body in constant spasms, often requiring continual attention to keep them alive and healthy. 

I once had a young man with cerebral palsy in my production and operations management class who was heavily supported by student assistants on campus. He had probably one of the best students on campus in class with him to help him with his homework and tests. Still, he seemed rather lax in doing his homework well, along with his test answers, so I gave him a C and gave his assistant an A for his own excellent work on his scholarship and praise for helping the other lad with his.

Just before graduation, the young man whose name is lost to me like so many students from that time, wheeled himself like he always did, backward with one foot to the floor, into my office. Earlier, I learned that he had been, out of high school, the manager of a rock 'n' roll band. I do not know whether or not the band was successful. But he also was a fixture in the college bars where his assistants brought him to the party almost every night. One of the reasons why his homework for me and his test taking only earned him a C.

I guess the reason he came to me was my obviously shriveled hands and the fact that I needed my stainless steel hand splint and metal chalk holder in order to fill the board with all of those words, diagrams, and formulas every day in class. He had no such crutches except his wheelchair. His spasms prevented him from using even crutches to walk. Although he may have had some for personal use like eating that I didn't know about.

"Mr. Hull," He pleaded." I don't know if I can get a job. Do you know of any? I'm afraid I won't be able to get a job even with my degree!"

I had only been teaching on campus for two years. Although I had started a consulting firm, I had no real connection with local business and industry except for a couple of speakers that I brought in for my classes. Perhaps, I should have given him the phone numbers and names of those, and given them a call, but I didn't think of it at the time. Blame it on youthful inexperience. My jobs were often made by referral.

Instead, I shook my head and told him honestly, "I'm sorry, but I don't know of any."

He left the office and I never heard from him again, but have often wondered if his highly social nature with the other students may have landed him a management job somewhere. But I also thought about the recently appointed campus employment counselor who had thrown up his hands when I came to him five years earlier as my student advisor. Later getting an A in his class for writing product specifications better than anybody else.

He had declared, "Ron, I can't help you. There's nothing I can do!" He actually felt helpless to advise me on the year and a half remaining to my degree. Thinking I couldn't do the hands-on courses required.

Fortunately, the head of the department who later became a vice president, took me under his wing and had me do four independent studies so that I didn't have to do hands-on shop courses. I got As in all four courses and learned much more. 

Deciding to go to graduate school rather than try to get a job like my twin brother did after his bachelor of science in industrial technology got him seven great offers from which to choose. Finally choosing one that helped him with his upcoming marriage to his college sweetheart. That job and the others required timekeeping on the shop floor and design work, hands-on.

I learned later that the best jobs that came to campus were held in the Deans' offices in their desk drawers. They would call the very best students to their offices and hand them those offers. Although I was a top student of "high distinction," in the upper 5%. Our university did not use the "cum laude" designations that other universities used. 

Additionally, I was a recipient of the Medallion Award for my presidency of the local ecumenical Methodist student church group given to a few graduating students for their extracurricular activities in their senior year. Enabling me to travel to a conference where I saw Martin Luther King speak and participate as a supporter of the civil rights movement and help me declare my opposition to the war in Vietnam.

I hand typed with one finger on my electric typewriter rental from rehabilitation 60 letters to graduate schools looking for a program in human engineering, often called ergonomics or human factors in those days. With no success from the answers that schools returned from my inquiries, the head of the department and my mentor, got me an assistantship at the University of Wisconsin in industrial engineering.

I entered the doctoral program under a distinguished professor who was a well-known consultant and the former student of Lillian Moller Gilbreth, the subject of the book, Cheaper by the Dozen, and the founder of ergonomics with her husband, Frank.

I started at the University of Wisconsin shortly after my January 1966 graduation. In April, I received a surprise letter from Stanford, offering me a fellowship, and I left my doctoral degree program to go to sunny California. But that's another story… I am writing about spasms and must remember that.

In my youth, people who had spasms, like those who had strokes, dementia, cerebral palsy or Parkinson's disease, were often relegated to County farms in Wisconsin if they were children or if their families would no longer care for them. I remember a relative of mine who was a simple farmer, Robert E. Lee (no relationship to the southern general), who suffered greatly with Parkinson's disease according to my mother's description. I don't recall ever seeing him although he lived nearby.

The ignorant liked to call anyone with muscle spasms derogatory names like spas or spastic and make fun of them. Bullying that I never liked. And jokes that were totally unfair.

Almost everyone has experienced spasms. When I had my early physical exams, mostly for athletics, the doctors would always use a rubber hammer on my knees and elbows to check my reflexes. Hitting those "crazy bone" spots my childhood friends called them, would cause pain and muscle spasms with the nerve close to the surface, when those spots were struck by the hammer, activating the muscle.

During sports, most notably, track and cross-country, my fellow athletes would often complain of "cramps" caused by straining muscles and tendons. I prevented those by making sure I did thorough stretching exercises before strenuous activity. Thereby warming up my muscles and stretching the tendons so they weren't injured with rapid movement. Cramps were simply spasms that were contained within one muscle⏤often leg or arm muscles. Easily avoided by warming up properly.

One day after my after-school practice from either cross-country or track, I remember getting into a friend's car to ride home and having my left thigh have a "Charley horse!" It was the only one I ever experienced during my athletic years and it was very painful.

In May 1963, eight months before my paralysis during surgery in December just before my 21st birthday, I met the challenge of President Kennedy's call for physical fitness with a 50 mile walk during my junior year in college. Of the 17 that started that morning at 6 am, I arrived at the end an hour before any of the others at 5 pm. While asked to stop and rest with two others who were with me 10 miles out, after a couple of minutes without walking, I could feel my legs cramping and continued on without them.

That night, for the first time in my life, my legs cramped badly and kicked all night so that I couldn't sleep very well. But the next day, after walking stiffly to church six blocks, then later that afternoon, I walked further, about a mile, to a local pizza place for a free pizza. Joined by my slacker twin brother and roommate who didn't walk their talk with me to help me eat the giant pizza with all the trimmings. Something I would never buy and hadn't experienced before⏤yummy. No other walkers of the eight that finished appeared to get theirs when we were there⏤shame.

After my surgery, eight months later, I felt nothing and couldn't move a muscle below my neck. But that was soon replaced by rapid atrophy of my arms and hands, the trademark of my spinal paralysis for the next 60 years. While the atrophying process was underway, and the nerve endings were reestablishing, I felt like both arms were encased in barrels filled with biting ants.

Of course, a morphine drip kept me from the really serious pain. There was some pain as my legs gradually returned to near normal except for some loss of feeling that was varied all over my body below my chest. At that time there were no spasms that I recall, just the burning nasty pinpricks of many insect bites or, more accurately, the thawing out of extremities after they have become numb from cold. Something I was very familiar with. While thawing out numb ears, hands or feet lasted about a half-hour, this pain persisted over several days. And attempting to go to sleep resulted in falling backward into a spin with large red circles running over my body in total blackness. Frightening me out of sleeping for twenty days.

After five weeks, I gladly and happily walked out of the hospital, worried what I would do with my arms and hands that felt normal, but were greatly impaired and looked it. With a simple metal hand splint allowing me to grasp a pen in my right hand again made for me in August 1964 and finding that I could drive most cars that had power steering, power brakes, and automatic transmission without any further modification, I left the care of my home and returned to college to regain my independence and succeeded beyond my dreams.

But eight years later, my mother noted that I was limping, largely because my left leg was not fully responding to my mental command to walk normal, and causing me, occasionally, to trip and fall. A thorough workup by the neurosurgeon who did the original surgery suggested that I have surgery again to correct what was not corrected earlier. I balked at that idea, and went to the Mayo Clinic for a second opinion. No one else was suggesting further surgery, so I didn't do it.

Over the next 20 years, I often lived alone and maintained my entire household, buying land in Wisconsin to build, but not building. Buying a cottage in West Virginia, and then selling my land in Wisconsin and my cottage to build my dream home just west of Atlanta 8 miles from downtown in 1980. But by 1981, I got married and was working here in Houston, where we bought this tract home that we bought together and I still remain in because it has been modified appropriately for my needs.

During all that time, I don't recall any spasms. But by 1990, I was having great difficulty walking. A rehabilitation doctor that I went to described my increasing paralysis as similar to post-polio syndrome that she was studying. She elected to run me through tests that proved that additional surgery was of no use. She weaned me off the steroids a neurologist tried to "cure me" with for two years with no positive results. 

Instead, she gave me a 20 mg tablet of baclofen four times a day. A dosage that is standard for those of us with spinal cord injury and the maximum dose allowed. My prescription has not changed since then, 30 years ago. Apparently, the maximum legal dose.

At some point, I was told that the next steps if spasms became a problem would be to go to a baclofen "pump" that would directly inject baclofen into my spinal column fluid. But in my case that was never discussed. I heard that, in the worst cases, other drugs like barbiturates and opiates have been used. And, a certain segment of the spinal injured are advocating for marijuana as a way of ending spasms. I do not know because I've never done anything else other than take my required prescription.

In spite of being offered a toke a few times in college, I always refused, not wanting to smoke. But I did get a case of strange feeling from some brownies made with Alice B. Toklas's recipe one time at an April fools costume party I threw where I drank wine and ate the brownies brought by a known druggie student.

Recently, I've heard that they are experimenting with electrical stimulation along the spinal column to ease spasms. Stem cells have not worked for restoring spinal neurons and many other attempts at improving muscle function by either freeing cramped muscles with surgery or implanting stimulating electrical wires have all proven to be failures in the long run like steroids.

That same rehabilitation doctor saw that I was struggling and told me where I could get six months of funding from the state and some assistance in hiring personal attendants. I waited two years until I was getting up at 5 am just to get to work at 9 am, and after finding that everything became monumentally harder for me to do. The decline was very obvious. I was tripping and falling. I was unsteady. Muscles in my hands that had worked before, no longer did. I was desperate.

I hired my first attendant, a plastic surgeon from Ecuador, in May 1992, to help get me to work on time and then come back in the evening and help me with dinner and getting into bed. She turned out to be able to do almost anything, a Renaissance woman, like sorting through my papers and pruning the tree out front. I hired a second, a brilliant young premed student from Rice University who built accessible ramps for me, installed a pool Hoyer lift for my bathroom, moved my office from upstairs to downstairs into my large bedroom and finished sorting all of my papers to my great relief, freeing my upstairs bedroom for tenancy.

Both of these able people left for other venues with my appreciation at the end of the summer. I hired Beh in October 1992. She has stayed with me through thick and thin all these 30 years since. She wanted to get her citizenship the honest way, so we never married. It took her 17 years, but she made it. As I got worse, there came a time when I could no longer turn myself in bed or keep the covers on and she started to stay overnight. Always changing many routines to meet my needs.

In 1995, on my way home from work for the Christmas holiday, I found that I could no longer drive my 1973 Chevy Monte Carlo safely and stopped driving. Fortunately, by that time MetroLift service had reached to where my home was and I was able to pick up a subscription ride. While the service was ridiculously inexpensive, it was somewhat unreliable for pickup and delivery while taking it the 20 miles to work and the 20 miles back every day. Depending on how many other people had to be picked up and dropped off, changing the route and sometimes taking over two hours or more to get to work or to get home.

I taught her to drive, and Beh drove me everywhere else. But there came a time when I couldn't even transfer from a portable wheelchair into the front seat of the Monte Carlo and she tired of pushing me in that portable chair. 

For those who have tried out a wheelchair for a day, you can't imagine how frustrating it is to sit in a wheelchair that you can't move or maneuver, unable to see anything behind you or turn, having to wait for someone to push you in the direction you need to go. That is, if they are willing to turn you in that direction. The loss of independence is immense. 

Day trippers pretending paralysis in borrowed wheelchairs have no idea just skirting obstacles and recommending improvements in physical access with no idea of the mental trauma⏤social stigma. Access to work, good pay and to hang on to those jobs under political pressure.

Beh came to work for me on work-study at my university for a year, but her heart was on opening her own business rather than college, so she left to work for others and learn the business. First, for a bridal shop, and then, an enterprising dry cleaning and alterations guy who also had a shirt making business where her brothers worked to save money before going to college.

Working for me and also working for others became too much, so I started hiring help at night to ease her load. The first person that I hired had her own a house cleaning business, but she had cared for her husband who had lupus before he died, and found working for me part-time, two nights a week, agreeable.

But even with additional help, my legs began to bother me when I was putting them up after being down and immobile all day. Causing them to retain fluid and swell. Compression stockings helped, but only having my legs raised at night brought the daytime swelling down. So, for the first two hours after going to bed, the nerve endings on my legs were giving me all kinds of signals that were quite irritating and I couldn't sleep. Sometimes, getting only five or six hours before getting up at 6 am to head for work by 7:30 am.

I went back to my rehabilitation doctor who had changed and was turned over to their physical therapy department where Beh and my other attendant were given stretching exercises similar to what I did to warm up for sports to stretch the muscles and tendons that had been sitting without moving all day and needed to be stretched a bit. The movement always felt good even where I had little feeling on my skin where I could easily be burned without knowing it.

A small miracle happened. The occupational therapist who could do little for helping me since I was doing a high-level job well without assistance, suggested that I try out for a driving program that was funded from a drunk driver fine fund the state had. I had earlier, in 1993, tried out a car they had with hand controls. Chad, the therapist, put me in the driver's seat and I drove across the parking lot all the way to the other side without being able to steer. Told him, "Let me drive my Monte Carlo. I can drive it a lot better on these dangerous freeways every day." He agreed.

But it was 1998, and I had already quit driving for three years. Chad had an older, Ford Econoline van with dual wire cable controls he installed that he could adjust, and even change out if he had to, to meet the needs of different drivers with different abilities. This time, while driving this very sensitive and almost no back pressure system that was very tricky while turning, I quickly got the hang of it in the parking lot and we took a short drive in the neighborhood on back streets with light traffic.

Chad told me I could start driving again. I went to Texas rehab for the funds. The first counselor told me that I needed to buy a van first, and then they would decide whether I would get the funds to modify or not. I took the risk, and bought a 1998 Ford Windstar in Arizona where a plant modified it with a lowered floor, side door ramp and air suspension that lowered it even more for easier access. The front two seats were raised and removable. The middle seat was removed for maneuvering in and out and onto the ramp.

My first counselor was disabled, too. When I returned to him with the news, his office was closed and he was in the hospital. I called the state office and they directed me to another counselor. He was Pakistani and looked at me sternly and said, "Are you sure that you want to drive?" As if he disapproved if the agency's policy.

I told him. "I just paid cash for a van. I'll be stuck with it even if I don't drive it. I had no choice." He completed the paperwork. I was worried he wouldn't.

A shop that specialized in modifications to vehicles with an owner who had MS but had died before I arrived, got the job. My van was their first and most complex. Troy, their best technician, took on the job. And I spent four weeks taking days off to train how to drive that way with my hands in tri-pins. My left hand moving the throttle forward and the brake backward, cable operated. Near my right hip was a six-inch horizontal "pie plate" with a swivel for the tri-pin on the outer edge for steering where I would turn the plate counterclockwise and the van's steering would turn counterclockwise. Likewise, turning the plate clockwise, turned the steering clockwise. Very fast and with virtually no effort and very little feel for the wheels naturally coming back to straight like normal power steering does. One has to maintain constant minute control. Speeds above 70 can be nerve-racking keeping the car going straight. But that was normal freeway speed in Houston. I learned to handle speeds up to 85 mph down long downgrades in the mountains⏤very scary!

After nine months, MetroLift dropped me off at the shop, and I drove home alone after a long wait for Texas A&M experts to go over the system for safety reasons. By the time I got home in late afternoon I was exhausted, but happy to be driving again.

Why am I telling you this? By both being able to drive, bouncing along on Houston's rough streets, and maneuvering my heavy-duty electric wheelchair I received with the car, almost everywhere where there weren't blocking chairs and tables, I not only saved time, I got lots of exercise and slept better at night. I began planning trips. Long trips. Getting Beh and other attendants to go with me was always a problem. But I managed. I could drive for 10 hours and feel relaxed and exhilarated. They would feel tired from the long boring ride.

It was all about my abdominal muscles. In the van, I was tied down to my wheelchair with the driving belt across my chest that kept me up right and steady with all the movement of the vehicle and the springs and cushion on my chair. Necessary for me to maintain smooth control of the controls. And, in the office, my abdominal instability greatly affected my ability to letter or to cursive write by 1998. The chest belt would have allowed me to be stable enough, but also inhibit my reach trying to put pen to paper on my desk. I had to been down often to do many things, even to type. I had to give up writing.

Fortunately, by that time, I was doing nearly all of my work on my computer, including email, and had a voice system for dictation. So, I just stopped writing and scanned my signature for the rare use I have of it. Missed greatly at book signings where I attempt to, but rarely can, write a legible signature.

Spasms, most often in those days came by the way of pain like everyone has felt when sitting in the same place too long. An aggravating tingling that won't go away until you move. But I found that I could divert my mind away from the pain, particularly while working mentally hard on something so that I didn't even think of it.

However, when first going to bed, there was always some muscle that needed to release itself by cramps from the day's inactivity. Some that I felt greatly, and some I didn't because of lack of feeling. My use of support hose, socks and steel toed dress shoes that I bought to protect my feet and toes from hitting doors hard with my powerful wheelchair electric motors became a problem.

My toenails began to curve downward and grow in. They had to be tended to at least once a week or they would cause severe tingling and some knee spasms with pain to the ligaments. Just the weight of a sheet or blanket on my toes would force my foot down and cause ankle pain.

Something as simple as a yawn would cause my arm biceps to pull my arms by reflex from my side to up above my shoulders, bent in a position that would start to ache. Since I have no triceps, I have to call my attendant to put my arms back down, while attempting to sleep again.

At a prosthetic appliance show around 1997, I came upon a machine called the Flexaciser. From my wheelchair, a pedal arrangement pumped my legs like riding a bicycle⏤wonderful. In addition, with my arms attached to long arms connected to the pedals with my hands tied enabled my arms to move backward and forward in sync with my legs. Unfortunately, the device cost about $8000 and they never got Medicare approval required for state support. I had to pass on buying a new one.

Fortunately, about 2010, I went online and found a used Flexaciser for $2000. I immediately started using it before going to bed and in the morning when I get up for 15 minutes. Recently, I increased the time to 20 minutes each time. I set the speed at about 15 mph. I get much-needed movement and blood flow. It isn't painful at all and quite relaxing while I watch news on a small flatscreen TV and critters in my backyard. I'm certain that this device has helped me to remain healthy, avoid blood clots and reduce spasms.

As I grow older, my spasms continue to grow more frequent and more violent. Eventually, I had to tie down my feet in my wheelchair to keep them from jumping off the footrests. My stability and range of motion for my arms continued to decline.

After overreacting to a squirrel running under my left front wheel and driving up on a lawn, I destroyed a front tire on an unusually sharp curb. The squirrel survived. Not the first time that my sensitive steering system and my quick reaction came into conflict.

I followed that with overreacting to a large rock smashing into my windshield directly in front of my face causing me to pull my left hand out of my gas-brake tri-pin and my steering sharply to the right into a swamp while on my way home about 70 mph on Interstate 10 just after leaving Louisiana. I thought about quitting driving.

The good news was that the three of us were unhurt and the van, including the high-tech equipment, was still mechanically an electronically sound. However, the body required an expensive six-month long insurance renovation. Sensing that it was getting too dangerous again, I stopped driving in 2017.

I've read that older people like I'm getting, especially if they become diabetic and their legs swell like my mother's did, have a condition described as "restless legs." Even though I've never been close to being diabetic by my exercise and diet routine, inactivity in the wheelchair brought restless legs on early for me.

Sometimes, it feels like an animal is chewing on my right little toe. That could be an ingrown toenail, or it could be pressure on some portion of my nerve system that needs to be relieved by my moving. I've had to sleep on my side since about 2005 to avoid acid reflux caused primarily by paralysis weakened stomach valves⏤muscles, too. Pillows to hold me up on my side can be the cause of pressure points that activate spasms as well.

Other times, or when my legs are moved, my feet adjusted or anything being done to adjust or clean me below the waist, my calves and thighs, wound tight, tend to spasm rather violently. Sometimes, painfully. It is when those calve spasms, or worse, thigh spasms, start to begin either randomly or every 30 seconds or so, I have to be moved because that kind of aggravation keeps me awake for hours if I don't.

Worst of all, are my back spasms. These are full-body. When they happen during the day, infrequently, they almost throw me out of my wheelchair where I am without a seatbelt for comfort.

Those grand seizures can sometimes be accompanied by nausea. When they happen in bed sometimes I feel like I have moved. In dreams, off the bed onto the floor. But when I awake, I am usually in the same position with the same pressure point causing the spasms. I am so grateful for being turned. Sometimes, in as little as five minutes until the spasms stop or my exhaustion overcomes them with sleep.

I have to stop writing now. The tip of my left thumb is having a Charley horse…

Copyright 2022 © Ronald W. Hull

5/11/22