Coming From the Core

One of the first observations Eric made when analyzing my walk was that my stomach muscles were not engaging. I've heard  "Let your fingers do the walking," but "Let your belly do the walking?"

Many muscles, not just leg muscles, play a role in walking. I was engaging only the powerful quadriceps on top of my thigh to swing my leg forward from the hip. Eric wanted me instead to tighten my abdominal muscles and use them to help lift my leg forward.

At first the abdominals on my affected side would not engage. To "turn them on," Eric sat me in a chair and told me to exhale as if I were blowing up a balloon. Once I could force no more air out, I froze my belly muscles in that tight position and held it as long as I could. No sit-ups, no crunches, but I broke a sweat.

My abdominals now remembered what it felt like to work and had been given permission to do so. I practiced walking, using my abs to help lift my leg, which no longer felt as heavy as when I had been swinging it. Over time, my abdominal muscles began to flatten instead of bulging uselessly on the affected side.

Now we're working on my back muscles, which need to help stabilize me when walking.  This has proven especially challenging because of a lower back problem that preexists my stroke. Apparently, I have been misusing my abs and back muscles for years.  Now that I'm addressing the core issues, my back pain has changed; it's no longer a spike in the hip joint, but a soreness in the hip muscle – like after a good work-out.

I think I'm learning to walk properly for the first time in my life.

As Above, So Below

I marvel at the connectedness of my arm and leg – how working on my arm causes a reaction in my leg and vice versa. I’m told the body is wired for efficiency – that the nervous system’s control mechanism for the arm and leg, which perform essentially similar motions, is the same. Brain damage makes you wish nature had built in system redundancy, but alas.

What this means is that I can’t work on one area in isolation. More than any other function, I would like to recover my leg – so I can walk quickly and distances, ride a bicycle, kick in the water. But sometimes my foot hits a wall in its progress and the solution has been to work on my arm.  When the tension in my wrist releases, my ankle relaxes and the foot straightens out.

Eric tells me “as above, so below,” meaning that you can roughly approximate the shoulder to the hip, the elbow to the knee, the wrist to the ankle and the fingers to the toes. It’s no coincidence that the finger and toe I have trouble extending are the same – the second. 

Recently, as Eric and I practiced walking, I was having trouble straightening my foot and my ankle threatened to roll outward.  I pointed to tightness under my upper arm. As he worked through it, the triceps engaged to roll my arm and shoulder back. Simultaneously and without thought, the peroneus muscle on my outer calf adjusted to pull my heel straight beneath my leg.  Eric worked the kink through my hand and there was a snap as the tendon in my second finger released.

I set off across the gym floor on a straight ankle and a flat foot with a gloriously elongated second toe.  

Rehab From Rehab

I'm learning to walk all over again — again. This time, my privately hired therapist and I have the same goal: to get me walking normally.

My therapist at the insurance-provided rehab hospital where I spent 21 days in the weeks after my stroke had a different goal: to get me functional. That meant walking however I could manage it. It didn't matter that I was locking my knee; didn't matter that I contorted my torso; didn't matter that I balanced all my weight on one strong hip. Didn't matter. What mattered was getting me functional enough to send home.

Today it matters. I don't want to erode the cartilage in my knee, or develop spinal and hip problems. As I work to undo the bad habits formed over the past three years, I think about the whole post-stroke rehab industry and wonder what could be done to improve it? Why didn't someone take the time to help me recover my muscle function correctly from the beginning? Was I incapable? Would that have taken too long and cost too much? Isn't cutting corners going to cost my insurance company more later — when improper function leads to knee surgery? When drugs used to control spasticity cause complicating side effects?

One way to improve stroke recovery is to avoid permanent brain damage in the first place … climb on the Dean bandwagon and demand a stop to the neuronal cascade of death. But how do we help those for whom that’s too late? How do we align the goals of rehabilitation providers with rehabilitation patients? Because yes, after 21 days of insurance-covered room and board at rehab, I wanted nothing more than to go home — except to someday again be normal.

Three Steps Back

In my recovery each advance has been hard-fought and has brought new freedoms. Walking without a cane meant being able to carry items from point A to point B. Stronger muscles meant more stamina — to run an errand or do a chore. These abilities gave me a sense of usefulness, which helped my mood.

In the last months of 2012, I surrendered these luxuries by agreeing to an experimental treatment designed to improve my lopsided gait. Arbi had the unusual idea of injecting Botox into my peroneous longus and peroneous brevis muscles, essentially immobilizing them. Without them my foot inverts (rotates inward). To walk I was therefore forced to engage my weak extensor muscles, which assist with foot "eversion." This was the objective: to strengthen the minor muscles around my ankle.

By the end of each day, my ankle was so tired and painful, I couldn't stand up even to microwave dinner. I became more dependent on my husband again. I started using a cane again. Friends who had celebrated my progress watched me regress.
It was really hard.

But three months later my ankle is stronger, my foot straighter and my gait more even. I now sometimes take a half-dozen steps that feel almost normal. I can envision a time when I will walk without a limp and what that might feel like.

But it won't be within the next few months. Arbi just told me that the experiment has been such a success, he wants to repeat it —
to force those tiny ankle muscles to work even harder.
Sigh. Six steps forward, three steps back.

When in Rome

Physical therapists in rehab made predictions I would be "walking" within six months. I took that to mean "normally." But at 21 months I still limp and tire easily. I've started walking regularly around the block to improve my form and stamina. This half-mile took 38 minutes my first attempt and I had to lie down for 40 afterward.

My husband and I share a passion for world travel. More than any other recovery goal, I want to walk with my husband when we're on our adventures. Together we have trailed rhinos through the African bush and explored the ruins of Cambodia's Angkor Wat. We have braved the crowded streets of Old Delhi during Ramadan and hefted packs along muddy trails in a Peruvian rain forest.

I try not to think about whether I'll be able to carry weight over rough terrain again. My husband says my condition won't stop us from doing what we want. "We may have to do it differently than before," he says. "We may have to hire Sherpas."

I'm trying to focus on a more achievable goal. I remember a glorious day we had wandering Rome, encountering ruins so common they weren't even marked on the map. We probably walked 10 miles that day. I'd like to be able to walk like that again – with my eyes taking in the world around me rather than focusing on my feet. Three miles … just three miles like that.

I've cut my time around the block to 26 minutes and I don't have to lie down afterward. Both my pace and rate of improvement are agonizingly slow. But Rome wasn't built in a day … probably not even in 21 months.

Unbrace Yourself

I left rehab with an Ankle-Foot Orthosis (left) to support my ankle and keep my foot from dragging. I hated it. I hated having to wear long socks in hot weather. I hated having to put on a brace and shoes in the morning just to walk to the kitchen for a cup of coffee. I hated wearing shoes that were two sizes too big so they could fit the brace.

I googled alternatives and found the Freedom Soft Footdrop Brace (center). I discussed it with my since-dismissed physical therapist who said it wouldn’t give me enough support. I ordered it anyway (July 2010, $120). By allowing more ankle flexibility, my muscles strengthened.

When I started with Arbi (Feb. 2011), he said, "Marcelle, why are you wearing shoes that are too big for you? No wonder you walk funny." He directed me to a sports brace (right). It was only $20 and I could wear it with my regular shoe size!

The first few days wearing that brace my foot felt like it was going to roll over and break off at the ankle. I questioned Arbi – but he was firm and so was the brace. Within weeks, my ankle strengthened and, in July 2011, I stopped using a brace. Period.

I read in a fellow survivor’s blog that she had become dependent on her AFO because it had prevented her muscles from developing. I don't know if what I did would work for everybody. But I am glad I ignored the skepticism of my first PT and trusted Arbi enough to follow his advice. Half the battle is knowing who to listen to and when to listen to yourself.