Deconditioning, Rehabilitation, and Independence

On the afternoon of April 4, I was discharged from the hospital. Due to ongoing disabilities, I wouldn't be headed home but rather to an Acute Rehabilitation Unit (ARU). The doctor working on the transfer added the following note to my medical record:

… Once medically cleared, recommend pt [patient, me] to be discharged to an ARU [Acute Rehabilitation Unit] setting (if available) for continued rehabilitation needs. Pt is an excellent ARU candidate as he has good family support, a high PLOF [Prior Level of Function], motivated to participate with therapy and demonstrates ability to engage in 3 hours of combined therapy/day.

I was still walking unsteadily, so I was transported by ambulance. Laying on a stretcher, belts holding me in place, I told the paramedic, "This is my first time in an ambulance." Whatever the opposite of a bucket list was (things you never want to do before dying), I was crossing items off from mine left and right.

My time at the ARU would be organized around three kinds of therapy:

• Physical Therapy (PT). (Re)building strength and coordination.
• Speech Therapy (ST). As I noted before, this was essentially a euphemism for ongoing cognitive assessment.
• Occupational Therapy (OT). Training in a range of mundane but essential skills that I could no longer perform, including: showering; dressing; doing dishes; using stairs; and so on.

My high hopes for PT but would soon collide with reality. My left-right coordination was bad, which meant that building strength would have to wait. Worse, my right side, which had not been affected prior to surgery seemed weak. I asked my therapist what was going on, and was introduced to a new word: "deconditioning." One source describes deconditioning in this way:

Deconditioning is defined as the reversible changes in the body caused by physical inactivity and disuse. You’re likely to have heard it used by ESPN pundits discussing the condition of football players on the injured list. However, it is not a condition reserved just for professional athletes. Deconditioning can occur to you or me after just a short period of inactivity. We all know the feeling of trying to return to exercise after a period of inactivity. Your muscles complain, you find yourself short of breath, and you’re easily fatigued. This is deconditioning in a nutshell: a loss of muscle strength, energy, and fitness.

Extended hospital stays and the lack of activity they impose wreak havoc on the human body through deconditioning. Just one week was enough to cause new weakness on my unaffected (right) side. Before I could even think of returning to normal physical shape, I'd have to undo the right-side deconditioning, then re-learn how to coordinate left and right sides.

What I really wanted from PT was to start walking again. As long as I could stand, walk, and sit, there was hope of hanging on to some degree of physical independence. More than this, major declines in the overall health of glioblastoma patients seemed to be preceded by loss of the ability to get out of bed every day.

The ARU I was staying at didn't seem to share my concern. I was told that walking practice was part of PT, and was to take place at that time. As the days went by, I grew less surprised that patients rarely walked the halls. Some of the nursing staff seemed to take things a bit further still. It was not unusual to wait 30 minutes or more between my call for help walking and the arrival of a nurse. I avoided doing so before or after meal times. It didn't help.

I wasn't happy with this situation, but I could understand it. The ARU was filled with disabled people like me, and was trying to prevent them from falling like I did. The chair in my room was equipped with an alarm that sounded whenever I stood up. My bed had a similar alarm that sounded whenever I shifted my weight, day or night. I was not allowed to enter or exit a restroom without a nurse's escort. I only showered under the watchful eye of a nurse. I was not allowed in the halls except in the presence of a nurse, who walked by my side, gripping the gait belt locked around my waist. All the while, my yellow bracelet, awarded during my hospital acrobatic failure, signaled to all that I was worse off than most.

The upshot was that I ended up spending a lot more time in my room lying down or sitting than I would have liked. This wasn't a complete waste because it gave me time to think about how my remaining time at the ARU would go. I came to two conclusions: (1) I would devise my own in-bed and in-chair strengthening and coordination workouts if I had to; and (2) I would focus self-training on being stable on my feet to avoid falls.

On the afternoon of April 7, I was discharged from the ARU. It had been just over two weeks since my arrival at the ER, and nine days since my brain surgery. As I pushed my walker through the sliding glass doors, warm inland air blew through my hair and across my face. I studied the open door of the car that would take me home.