I have written extensively about tone and spasticity. Most people who suffer from spinal cord injuries or other medical conditions experience both conditions. I have had the displeasure of having extreme muscle tone. This condition is hypertonia. Mine has been in overdrive and is extremely debilitating.
I recall the onset vividly. It started gradually in my left arm at Mary Free Bed January 2019. When lying in bed with my arms split over the mattress, my left elbow bent. Christian, my second shift lead nurse at the rehabilitation hospital, tried propping a folded pillow between my extended arm and body. My elbow would still slowly bend.
By February, I graduated from the sip and puff and head array systems to steer with a joystick on my wheelchair. My left arm strained but I was able to manage it. I graduated from MFB inpatient (my first of five graduations there) five months after my injury. I transferred to the Inn connected to Mary Free Bed, which was in an adjoining building through a long corridor. The effort to steer that far put a big strain on my left arm. It ached like hell.
My elbow clamped out the next morning. The arm was bending at a 90° angle, and I could not straighten it without help.
My home health caregivers needed to steer my wheelchair everywhere for me. This was extremely frustrating and baffling. Why was I regressing?
Then the high muscle tone spread to my other limbs. It became progressively worse despite daily range of motion stretching my muscles, along with outpatient occupational and physical therapy at MFB.
Then I became introduced to the term hypertonia.
This is a condition where there is an increase in resting muscle tension, resulting in muscle tightness and resistance to movement.
My hypertonia became debilitating and painful. My right leg could hardly bend without tremendous effort from strong caregivers. My left arm would not straighten even with range of motion.
This condition coincided after the installation of an intrathecal pump in my stomach. The pump drew baclofen to my spine through a catheter. But the baclofen was not effective for me despite several different interventions.
I was utterly miserable for the first few years. Displaying any type of emotion triggered episodes of muscle contraction and spasms. I avoided watching TV because movement on the screen was too stimulating. It was difficult for me to experience joy, sadness, anger, or any emotion without inflicting pain on myself.
It was unbearable to be in my wheelchair more than a few hours at a time. My muscles would ache and tense up.
I just wanted to die.
I became a medical marvel with my doctors. My doctor presented my case at a national conference. I was an anomaly.
There are variety of theories of this extreme hypertonic state. The one that makes more sense is that I have scar tissues along my spine due to a Harrington rod from scoliosis surgery back in 1978 and 1980. This could interfere with the flow of baclofen to my arms and legs.
With hypertonia, it is my biceps quad muscles that are the tightest. My muscles fight movement to reach for anything. Quite often, clonus kick in and my arm starts to shake. Sometimes, this triggers a full body quake where my whole body violently shakes. This requires one or two caretakers to lay across me to stem the shaking. Not exactly fun when one is in the shower chair!
Things have been better for the past couple of years. Although I have some bad days, I’m able to tolerate the wheelchair more for several hours. Partially because I have so much tone, I’m able to walk with a platform walker a few hundred feet.
The combination of medications in my pump has decreased the tone. I am currently on a combination of Prialt, Clonidine, and Baclofen. My legs improved more than my arms. I can walk about 250 feet in a half an hour with a platform walker. My legs will bend more freely.
But my arms and hands are still stiff. My right hand is balled up in a fist. I call it my five fingered death grip. When trying to reach for anything, my left arm fights me and begins the spasm.
I feel envy of other quadriplegics with better arm usage. Many can feed themselves, work their phones, and dress. But I make do with what I have and resources available to me. This includes guiding caretakers, along with use of technology and the dreaded AI.
And I still have my brain.
I’m fortunate in that regard. I’m around people with traumatic brain injuries every day. And for that I am grateful and humble.
There have been significant advances for this past month. I had a meeting and greet session with someone who runs a private practice in town. She offered me a job on the spot as an outpatient therapist. I will be doing individual therapy once again. I plan to start off with a handful of clients and slowly build from there. There will be a mixture of doing telehealth from my room and face-to-face contact in the office.
There are two locations. The one in town is in a building called Mind, Body, Baby. She told me not to freak out as there are a few other businesses in the building. I will not be doing therapy with babies or bouncing them off my knee during sessions!
This building is not easily accessible with the power wheelchair. The building has multi levels, and it is a tight squeeze into a lift to make the garden level. I will meet her at the second office next week, which is only one level.
I’m excited and nervous. It has been a few years of being on the sideline for employment. But I feel ready and have kept up to date my social work license. In fact, I have all my 45 credits completed a year early!
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