I knew my six months of being sentenced to strict bed rest before, during and after flap surgery, doing everything 24/7 from bed — including eating, peeing, pooping and working at my computer — would be difficult. But I wasn’t prepared for what happened at the end of my sentence when I attempted my first transfer out of bed.
As I pushed off from the mattress, both arms and shoulders instantly gave way, as if I had gained 100 pounds overnight. The pain tore at my shoulders and torso, and waves of wooziness threatened to take me down. I landed with the middle of my back on the very front of my ROHO cushion, my butt hanging way below in a half-reclining position, clutching the tubing of my chair, hanging on for dear life.
My wife and daughter frantically pulled, pushed, lifted and clawed at me, barely managing to hold me in mid-transfer, but their combined strength could only be sustained for another minute or two. I had to muster my strength to help, regardless of the pain. Giving up would mean dropping to the floor, with no one else to help, no Hoyer lift to pick me up, and possible damage to the tender transplanted flesh that covered my left buttock, which had been remolded during my flap surgery.
I grimaced and pushed up with all my might. The pain intensified and I began to feel nauseous. Gradually, with help, I managed to inch my way up, resting my lower back partially on the cushion. I took deep breaths to fight off nausea and gave it another try, but only gained a few inches. I tried again.
This time I made it to safety, with my butt partially on the cushion. But the cushion, a ROHO high profile, had rolled back, making sitting there impossible. With better handholds on my wheels, once again I pushed up while my wife and daughter struggled to un-roll the front of my cushion and lay it flat. With their help, I completed the transfer. Then I hung my head, resting and bearing the pain.
You would have thought I had just completed the most challenging American Ninja Warrior obstacle course of all time, not a simple bed-to-wheelchair transfer.
The Days of Small Gains
Six months of bed confinement may be necessary for flap surgery, but it is hell on muscle wasting, not to mention posture, which it turns out is more important than I could have imagined. I had a long ways to go to regain my strength, range of motion, coordination, technique and freedom from pain — all of which was necessary to reclaim reasonable quality of life for a 73-year-old para with 53 years of wheelchair life behind him. My first priority was to regain the range of motion I had lost in my arms and shoulders, critical for transferring and wheeling.
A decade or so earlier, I had managed to avoid shoulder surgery when I sustained a moderate rotator cuff tear. It took three months of physical therapy and another three months of stretching, home exercises and light weight lifting. Had the rotator tear been severe, surgery would have been much more likely. Drawing on that experience, I felt confident that a similar course of action would be needed to recover from bed confinement.
Since I was technically homebound, Medicare paid for a physical therapist, Melissa, to treat me at home. In our first session, after she helped me with a shaky transfer, she examined me in my chair. My right trapezius (the muscle that slopes down from neck to shoulder on both sides), where the pain was most intense, had noticeably atrophied. I looked lopsided, as if the muscle had disappeared. My left trapezius was less painful and looked OK by comparison. All of this was no doubt due to having to lie on my right side for several months. Melissa offered a temporary diagnosis of damage to the right spinal accessory nerve, which originates at the base of the skull, travels down the neck and innervates not only the trapezius but the rotator cuff muscles. On my right side I also had adhesive capsulitis, commonly known as frozen shoulder.
She suggested that I get a nerve conduction study done to validate her diagnosis as soon as I was able to leave the house. In the meantime she gave me several stretching exercises to do while in bed, where gravity was minimal and pain not as severe. Going slow, everything in moderation, was best so as not to further inflame the damaged areas. Repetition was the best course of action.
I found that day-by-day, week by week, small gains in range of motion were measurable simply by lying on my back in bed and trying to reach back as far as I could with both arms. The goal was eventually to be able to touch the back of my hands on the top of the mattress over my head. Another helpful exercise from the same position was to try to repeatedly press my shoulder blades into the mattress by expanding my chest. I had been curled up in bed on my side for so long that it was difficult just to lie flat.
While sitting in my chair, at first I worked on posture — sit straight, shoulders back, gradually lift my head and try to stare at the ceiling (not easy after six months in bed). I also did multiple reps of shoulder shrugs (I had never thought of shrugging my shoulders as exercise, but it was a non-stressful start to build back my trapezius muscles over time). Holding my arms straight out in front of me and lifting them as high as I could was much more difficult than in bed, more painful, more limited. Wall-walking helped: I positioned my chair near a doorframe and tried to walk my fingers up the wall, keeping my arm straight, as high as I could. The doorframe helped support the weight of my arm. The goal was to increase the height slightly each day but stop when I started feeling pain. Eventually, over several weeks, I gained some range of motion while sitting, first by wall walking, then by gradually lifting my hand off the doorframe. At this point I started working with bands, doing light strengthening exercises.
A Long Six Months
Once I was no longer homebound, the nerve conduction study confirmed the spinal accessory nerve damage. Next, a physiatrist examined me and wrote a prescription for specific physical therapy work at a local gym. By this time I was transferring with extreme care and wheeling better but had to have someone drive me to PT appointments since transferring into my stock minivan had become impossible.
At the gym, Kyle, my new PT, pushed the limits of my range of motion in both shoulders while I lay on my back each day, being careful not to inflame my injured and atrophied muscles. Increased range of motion was first priority, to be followed by strength training, culminating with increasing the weights, week by week, for a total of about two months.
In the gym I warmed up with stationary handcycling (cycling in reverse to strengthen previously under-used muscles) and worked on strengthening rotator cuff muscles, pectorals and more strenuous trapezius work.
It took six months to get back almost all of what I had lost, first with light stretching in bed, then stretching while sitting in my chair and doing light band work, and finally with physical therapy and working with weight machines in the gym. To this day, more than a year after that first painful transfer out of bed, I am still trying to get back the full range of motion and strength I had prior to my flap surgery ordeal, but I am mostly pain-free and independent again.
I have learned the importance of regular stretching, exercising and not spending long stretches of time in front of a computer, no matter your age. And I will do everything in my power to avoid being sentenced to another term of bed confinement.