Poor Plus, and Happy About It

Sometimes nothin' can be a real cool hand

If you’ve ever had a musculoskeletal or nerve injury, or had a joint replaced, or developed weakness due to a lengthy illness or hospitalization, or needed physical therapy or rehab for any other reason, then you have almost certainly had a doctor or therapist perform Manual Muscle Testing (MMT) on you. The MMT measures muscle strength of various upper and lower extremity muscle groups, and it gives the doctor or therapist an indication not only of muscle strength but helps them assess nerve root function as well.

I’ve had a lot of MMTs over the past five-and-a-half months.

Starting with the ER doctor on Labor Day weekend, and continuing with my PM&R doctor, my oncology PA, the neurologist I consulted with, and my physical therapist, I’ve had my lower extremity muscle groups tested repeatedly. From the beginning, it was clear that I was having a problem with my right hip (especially with adduction, but also with flexion and extension) and my right knee (with extension); I was also completely missing any knee reflex on that side and had lost sensation in the front and side of my thigh and lower leg. All of this was due to a rapidly growing tumor in one of my hip flexor muscles (the iliacus). Pressure from the tumor caused severe damage to the femoral nerve, which controls the muscles that move the hip, flex the thigh, and extend the knee.

By the time I started physical therapy in early December, three months after the initial injury, I’d recovered (thanks to radiation) some of my hip flexor function, but it was still limited and painful. I hadn’t recovered any additional function of my quad muscles, which meant my knee extension was essentially nonexistent. Knee extension enables a person to walk without a limp and to safely do all sorts of normal daily activities without being at risk of falling. It’s kind of handy to have.

When the physical therapist did my intake assessment in early December, I scored a 1 for knee extension on the MMT 5-point scale.

MMT:

• 0 = nothing - no movement and no palpable contraction

• 1 = trace - no movement, but a flicker of contraction is palpable

• 2 = poor - full range of motion is possible if gravity is eliminated

• 3 = fair - full range of motion against gravity, with no resistance

• 4 = good - full range of motion against gravity, with moderate resistance

• 5 = normal - full range of motion against gravity, with maximum resistance

• (there are pluses and minuses that can be used for some of these numbers)

Because the physical therapist could feel a flicker of contraction in my quads just above the knee, I scored a 1 rather than a 0. Functionally, however, having trace activity is the same as having nothing.

After a month of twice-a-week PT, along with doing regular exercises at home in between sessions, I was reassessed. My hip flexion and adduction had improved - hooray! My knee extension, however, was still stuck at 1. My physical therapist even tried a couple of other things, to see if there was any measurable activity at all, and to see if we could make the muscle contract with electrical muscle stimulation. But still, nothing. It was disappointing.

But when you start with nothing, or essentially nothing, then you really have nothing to lose by continuing to hope and by continuing to work towards that hope. As Cool Hand Luke put it in one of the greatest movies of all time, “Yeah, well, sometimes nothin’ can be a real cool hand.”

After my early January assessment, my physical therapist added a new activity to my regimen. She began having me use the Lokomat, a gait-training device that uses a customized suspension system and harness to provide support over a treadmill (and, for those who need it, it also offers robotic assistance with the actual walking).

The first time I used it, I almost cried watching myself in the full-length mirror, walking somewhat normally for the first time since September.

In late December, the neurologist had told me that, after four months of severe nerve damage, I’d probably never fully heal, probably never recover full function. He said it can take up to a year for a nerve to fully heal, but that any healing going forward would not be as dramatic as what I’d had from September through December, when I’d gone from using a wheelchair and dealing with a pain level of 8-9, to getting around with a single-pronged cane and living with a pain level of 3-4.

That first day on the Lokomat, I wrote this on Twitter:

My appointment with the neurologist right before Christmas was especially disappointing. I got the feeling I sometimes get when doctors know they're dealing with a stage 4 cancer patient - like there are options they won't offer me b/c they figure what's the point.

But physical therapy is constantly changing my outlook. We focus on what is possible now, with an eye towards what may yet be possible. We work on small things I can do every day - little exercises that start to add up over time. The focus is not on limitation but on possibility.

My physical therapist knows I have stage 4 cancer, but that is literally never a factor in my physical therapy. She specializes in neurological injuries, so she's used to dealing with patients with serious issues. She's not daunted by my circumstances or dismissive of my potential.

I have no idea how all of this will end up.

I know it's unlikely I'll recover full leg function.

I know no one is coming to fix me.

Even so, seeing myself in the mirror, walking with a normal gait - at first, it was like seeing my past self, the self I have not been since Labor Day weekend. I have grieved the loss of that self so much. I am still in shock over that loss, and still grieving.

But the more I walked, the more I began to see someone else in the mirror:

✨maybe I was looking at the future me, too.✨

I’ve kept that vision before me as I’ve done my home exercises and gone to my physical therapy appointments. I’ve tried to be kind and compassionate towards my limitations while not letting those limitations be the final word just yet. It’s tricky. The whole business of figuring out what should just be accepted and what might still be changed - it’s always tricky. Threading the needle of hope is a daily exercise in discernment. Having good, wise companions in this exercise helps. My physical therapist has been an amazing companion.

This past week, it was time for next assessment. It snuck up on me. We went through the various tests and then something startling happened. When I tried to extend my leg, my quad muscle contracted and my foot jerked forward. It was truly minimal movement, but it was movement, and we could see it, and it was definitely not from momentum because she made sure I was starting from dead still.

She assessed my knee extension as a 1+ (which isn’t actually an official thing as far as I can tell), and when I later asked her how a 2 is measured, she told me that it would be on my side, with no gravity. That night, I lay down on my side in bed and tried it - and managed to move my knee from full flexion to full extension and back, as many times as I wanted. That’s a 2+/5, which means I can extend my leg a little against gravity (meaning, while sitting), but without gravity (meaning, while lying on my side) I can move from fully flexed to fully extended. I was truly shocked, as I haven’t consciously done this movement until now.

So in the span of a month, I’ve gone from trace (essentially nothing) to poor-plus. When you start with nothing, anything is progress. Poor-plus is absolutely progress I will take.

When I went back to PT on Thursday, I told my therapist about what I could do on my side, so she got out the powder-board and had me replicate it, which I did multiple times. She didn’t go back and change my official assessment numbers - she said we would just wait and let next month’s assessment numbers reflect my progress.

And by then, who knows? Maybe I’ll be fair minus, or fair, or fair plus, or maybe something even better.