Mind Over Muscle

Pre-stroke I worked out listening to my iPod, thoughts meandering over yesterday, today and tomorrow.  Post-stroke my mind needs to engage as much as my muscles.  First, I relax the spastic muscles in the area I want to exercise; second, I link my brain to the muscles I want to work (harder with some than others); third, I put my core muscles in proper position. Now I exercise, holding all of the above in mind as I repeat the motions.

I liken it to golf and all I had to keep in mind simultaneously to hit the ball on the sweet spot: Keep that elbow straight, rotate those hips, keep that head down – oh yeah, and try to relax! I sucked at golf.

I’m working harder at rehabilitation than I ever did at golf.  The most mentally challenging aspect for me is correcting bad habits – not just those acquired through adaptive functioning – but those that pre-exist the stroke.

Instead of keeping my feet parallel and engaging my core muscles, I turn out one foot for stability. Eric calls it my kickstand and says a lot of people do this, which contributes to the prevalence of lower back pain. I do it when I’m standing at the kitchen counter, in line at the post office, lifting weights. 

The other bad habit many of us have is to use our joints for stability instead of our muscles. It’s easier to lock our knees than to use our leg and core muscles. I use my hip like a linchpin, taking all the weight on it and cocking it as needed to move me. No wonder it hurts. 

For healthy recovery, I need to stop relying on my joints and make better use of my muscles.

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.

Incremental Improvement

I don’t want my recent posts to give the impression that once Eric releases the trapped energy in a particular area of my body that it’s cured. It isn’t. The tension can build again and the adaptive habits of the past five years can reassert themselves. 

When Eric works on me, I’m able to move correctly for a limited number of repetitions, but my muscles fatigue quickly because they are unaccustomed to exercise and don’t store much energy yet.  Consistent with everything else you’ve read on neuroplasticity, I have to use the muscles repeatedly in the correct way for my body to reestablish healthy muscle memory.

The benefit of my sessions with Eric is that he gives my muscles space to move. An ankle locked like a block of cement must be swung and plunked on the ground. An ankle that flexes, however, lands heel-to-toe and ready to push off for the next step, which encourages the calf muscles to work. 

When my tension rebuilds, Eric releases it again and, over time, there has been sustained improvement. It’s a slow process that requires my constant mindfulness. Sometimes I think about babies learning to walk and marvel at how relatively unconscious they are. I am conscious of every step and must focus my attention on so many muscles. No wonder I fatigue so easily!

To maximize neuroplasticity, I’ve added another therapy day to my schedule so that I see Eric three times per week. We are greatly supported in our efforts by his boss, Dr. Arbi Derian, who still weight-trains me once per week and treats me three times per week with electrical stimulation, adjustments and passive stretching.

I always feel better after my treatments and believe they will help me continue to improve incrementally.

Eric the Closer

Two years ago I started working with a therapist I call Eric the Closer because he fine-tunes me. When I asked him to label his brand of therapy, he paused. How do you encapsulate his techniques?

Not really massage – energy redistribution.

Not really strength-training – recoordination.

Not really reeducation – a new level of consciousness. 

“I guess polarity therapy,” he says.

The dictionary definition sounds airy-fairy – “restoring the flow and balance of energy in the body.” I’d be a skeptic if I hadn’t experienced results: My foot has straightened out, my shoulders and hips sit even, my gait and balance have improved, and my fingers have relaxed.

Example of a typical session: Eric gives me a simple exercise. I do maybe three repetitions and my ankle seizes up and my toes curl. Eric takes hold of my foot and commences battle – untwisting the calf muscles, shifting the ankle, coaxing the toes to elongate.

“Feel that,” he exclaims.  “Feel the cold coming out?!” Now I’m aware of it: my ankle is freezing from the inside. He holds my ankle and stamps his foot, dispelling the trapped energy. A flush of warmth. The skin on my foot and lower leg glows pink as blood pours into the nutrient-starved tissues. We are both sweating.

It’s painful, exhausting, exacting work. As Eric manipulates me into shape, my groans and exclamations sound like childbirth. I keep expecting the gym manager to tell us “Get a room.”

To benefit from the therapy, I’ve had to let go of self-consciousness in a way that harkens back to the rehab hospital – nothing is private or sacred. I cry out, push back, tell Eric where I need his healing hands; in them, I have the strong sense that I will go as far as I can in my rehabilitation. 

One Wedding and a Funeral

I took two significant trips this year – one to England to attend a funeral, and the second to the East Coast to be in a wedding. Leaving town means missing my four weekly therapy sessions, which keep my physical discomfort to a minimum; so I’ve developed a strategy for dealing with muscle stiffness while traveling.

Following my own advice (Travel Tips for Survivors), I stayed in comfortable, accessible accommodations for multiple nights, and identified a local gym. Using a gym worked out the kinks from the plane ride and kept my energy level steady. I’ve learned from experience that surrendering to the notion that I need to rest for a couple days after a long plane ride simply allows my muscles to stiffen and lethargy to overcome me.

From the gym window in Kent County, England, I watched a horse frolicking in a green, green field. At the gym in Charlotte, North Carolina, my workout was interrupted by a fire drill; while we waited in the parking lot for the “all-clear,” my friend and her fiancé practiced their first dance, giving me a privileged first peek.  

After the wedding my husband and I drove to Canada for a week in a cottage by a lake. I mustered my courage and got into a paddle boat, and an inner tube being towed behind a pontoon. But the triumph was climbing into a canoe and paddling – better on the left than the right, but enough for my husband to feel the contribution.

I can paddle a boat, canoe?

Balancing Recovery & Life

I think the hardest thing about a long and determined recovery from a serious stroke is finding a balance between rehabilitation efforts and living life. In the beginning, I spent six hours a day doing prescribed exercises. I was afraid that if I didn’t do everything suggested, I would not regain my lost functions.

One day I broke down in tears. “It’s impossible,” I wailed to my husband. I was exhausted, bored, frustrated. My husband reasoned that I needed to put some effort into enjoying my life today. As months passed and I realized that my progress would be glacially slow, I recognized the wisdom of his words.

If the stroke taught me anything, it is that my life and health is not to be taken for granted. Everything could change at any moment, rendering my dreams, my wishes, my “some days” even more challenging. I have to make the most of what I have

now – even if it means doing things differently than I’d imagined.

It has been 10 months since I last posted.  Thanks to those of you who have reached out to make sure I was okay. It feels good to be missed. For my part, I did not miss focusing on stroke. I needed a break. I have continued putting significant effort into recovery – doing four or five 90-minute therapy sessions per week. But I have been putting the rest of my limited time and energy into living life.

Next post: More about what I’ve been doing.

Twelve Days of Recovery

HMMM … Everybody now, SING!

In three years post-stroke,
I've acquired for recovery:
24 balls for gripping,
18 shower strips non-slipping,
14 finger flexors,
10 toe relaxers,
7 braces a-bracing,
6 shoes no lacing,
5 p i l l  b o x  s o r t e r s . . . 
4 grab bars,
3 cooking aids,
2 walking canes,
And balance games to play with Wii!

And like the "Twelve Days of Christmas" song, the list could go on and on . . . just look at all this stuff!

"Exercise? I thought you said 'ACCESSORIZE!' "

I hate clutter. I hate being reminded of stroke everywhere I look around my house; so as soon as I think I've outgrown some piece of equipment, I put it aside for storage or throw it away.

MISTAKE. As I've progressed from one stage to the next, I've discovered how some of my old "excessories" could have been re-purposed for exercises at a higher skill level. I keep sending my poor husband into the loft to look in the "therapy bag" for some old brace it turns out I threw away months ago. 

And that's just the truth of my life: Stroke is always in season.

In 'N' Out

Sometimes I notice that I hold my breath when I'm doing something challenging. Pre-stroke I caught myself holding my breath whenever I changed lanes on the freeway. Post-stroke I notice it most often while doing hand exercises.

My occupational therapist used to command me to "BREATHE!"

My retort: "I can pick up this ball or I can breathe, but you can't have both!"

I wasn't the only rehab patient with this problem. I heard other therapists bark the same instruction at other straining patients. 

Here's my new tactic: When I become aware that I haven't exhaled, I stop whatever I'm struggling to do and take a few purposeful breaths. Then I make another attempt while focusing on my breathing. Whenever I do this, I notice my coordination and execution improve. I have become convinced that my recovery will coincide with my ability to breathe easily through my motions. Like golf or yoga, the perfect swing or the perfect pose feels effortless.

Jack Kornfield tells a story about a meditation student who complains to his teacher that focusing on his breath during meditation is boring. The teacher grabs the student by the neck and plunges his head under water. When the teacher finally releases the struggling student, he says: "Do you think your breath is boring now?"

Body Awareness

Practicing yoga pre-stroke gave me a familiarity with the mechanics of my body. I learned how to roll and tuck my shoulder blades to open my chest. I learned how to stretch my feet both wider and longer. I learned to balance my weight not only side-to-side but back-to-front. I learned to be aware of the subtleties of my body.

In recovery I am aware of my body changing. Some of the exercises given to me in the weeks immediately following the stroke were premature. I stopped doing them in favor of exercises that seemed more helpful. Now I'm realizing my body is ready to go back to some of those abandoned exercises; I need the skills they were designed to teach. 

As I do each exercise, I try to be aware of the muscles being targeted. I often ask my therapist to touch the muscle I'm working. This helps me focus my mind on it, making my efforts more effective. And by being aware of the sensations and behavior of my body, I can communicate better with my therapists. This helps them help me.

For more than two years now, I have been almost constantly and uncomfortably aware of the pains and deficits of my affected side: It burns, buzzes, tingles, cramps. Sweet sleep or an hour of television provides brief escape. But the long-term escape — recovery — comes from paying close attention. My body wants to heal itself … is trying to heal itself. If I pay attention, I can help it.

Fighting Spasticity

In my last post Definitions for Recovery, I talked about breaking spasms and fighting spasticity – the muscle tightness that keeps me from walking and using my hand normally. These are the treatments that have made a significant difference:

Electrical Stimulation: Electrodes placed strategically on my skin emit an "alternating" electrical current mimicking my body's own electrical conductivity and stimulating my weak muscles. This has helped improve my own nerve conduction and muscle responsiveness. 3x/week.

Strength Training: Strength-building exercises are key to fighting both spasms and spasticity. Muscles go into spasm as a protective measure against further injury. For example, the spasm on the inside of my calf and foot defends against my weak ankle rolling out. By building strength in my ankle over time, I can break the spasm cycle. Already, muscle I've built in my upper back has significantly reduced spasms in my chest, improving range of motion in my shoulder. 3x/week.

Pressure Point Massage: Look for a massage therapist like mine who has extensive training in sports injury rehabilitation (mine used to travel with the L.A. Lakers), as well as knowledge of kinesiology and neurology. My masseuse works through all three layers of muscle, sometimes applying pressure so deep, her hands shake. 1x/week.

Botox: (Post 1-26-12)

Baclofen: I take a low daily dose (20 mg) of this muscle relaxant – helpful especially in the beginning when exercise increased the stiffness in my muscles. I hope to soon reduce my dosage and ultimately discontinue it.

Home Program: I continue to be active; to wear my nighttime foot and hand braces; and to stretch and exercise my hand 5-6 times/week.

Next post: how you know you're on the right track – what it feels like when spasms start to break down.

Triumphs

In the last few weeks, coinciding with major improvements in my leg, I have achieved the following:

1. I have walked everywhere without my cane. That's no brace…no cane. Practically naked!
2. I walked around my block in 18 minutes (without a cane) – beating my best time by 8 whole minutes!
3. I attended an all-day seminar – only getting up to walk around at break times like everybody else. I was a bit stiff for a couple days afterward – but I was present and awake the entire time!
4. I cycled water with my legs in the pool (straddling a noodle) for 45 minutes without my leg going into spasm, though my foot did. Then I climbed out of the pool taking the largest and last step onto the deck with my weak leg! Last year I wasn't strong enough to walk out of the pool – I had to scoot out backward on my bottom.
5. I did 9/10 of a mile on the Cross Trainer in 20 minutes – almost half of what I used to do before the stroke, but a quarter-mile more than what I have been doing in the past year!
6. Yesterday for the first time, I was able to pedal the recumbent bike fast enough to turn on the electronic controls and add resistance. I can pedal only at Level 1, and I did lose my footing several times – but that leaves plenty of room for progress!
7. The progress in my leg has given me new hope for progress in my arm and hand; so I've added the highest resistance spring to my SaeboFlex!
8. After a couple months of not being inspired to post on my blog, you are reading this!

Mouthing Off

In the beginning I did mouth exercises to counter a drooping smile and slurred speech. Lying in my hospital bed that first week, I practiced my pucker with enthusiastic sucking noises. I filled my cheeks with air and pressed it out in tiny farting bursts. I pursed my lips "Oooohhhh" and stretched my lips "Eeeeeeee." I once practiced this last exercise with such vigor, a nurse checked to see if I was okay.

In rehab my speech therapist fed me crackers to see if I was "pocketing" food between my cheek and gums. I chewed the crackers and opened my mouth for inspection.

"Good," she said holding out another Saltine. "One more time."

"Bwwaack," I said. "Marcelle want a cracker."

I minimized chewing on my left side because my weakened tongue lacked the agility to scoop food out of the corners of my mouth. When chewing I often bit the inside of my lips and cheeks. I haven’t done that in awhile, I think. Then I bite my cheek again.

Swallowing poses hazards. The muscles on the left side of my neck are weak and sometimes food sticks in my throat. I never eat without a glass of water at hand.

Also food doesn't taste as good. For a long time I thought this might be my imagination, but last week the nerves along the left side of my tongue began to reawaken with an electric jolt. Then I realized that half my taste buds have been disconnected from my brain – so no wonder I'm not getting full flavor.

On the upside food doesn't taste as bad either. Guess that's why a few nights ago I was able to eat beets.

The Task at Hand

I've been told that recovering use of the hand after stroke is "tricky." When I question occupational therapists that I like and trust about my prognosis, their faces become shielded and their speech careful. Almost two years into recovery, I appreciate why predictions in a case like mine are unwise. So much depends on my willingness to perform hours and hours of boring, demoralizing exercises.

The 4 1/2-minute film below shows me performing my current hour-long exercise routine. I've edited the long pauses required to unclench my fingers after each effort to use them. The routine is a variation of grasping and releasing POOF balls, which I've done almost every day for the past 20 months. If you find the film tedious, then it's a good representation of what it feels like to rehabilitate my hand. Progress is agonizingly slow.

But I am making progress. I think back to three months post-stroke when, summoning all my concentration, I could just twitch my middle finger. Still I want more.

I've been reluctant to write about rehabilitating my hand. Writing brings clarity and I haven't wanted to look too closely at the hope and dogged determination that keeps me going. I fear not recovering my hand. I fear being foolish for continuing to try past the point of progress. That point hasn't come yet, but as I approach my two-year anniversary, I feel an urgency to push myself to the next level of achievement.

A-Team: A is for Arbi

I had been Arbi's chiropractic patient and a member of his gym for years. I always knew he had healing hands. What I didn't know was that he could do more than crack my back. After the stroke, he put my gym membership on hiatus. I called him in February to say I was ready to come back. He wanted to train with me the first time.

"You don't have to do this alone," he said. "I'm right here with you – through good times and bad. We will do this together." I dropped my blasé physical therapist and have been working with Arbi since.

Three times per week, Arbi and I do an hour of weight training in the gym. My former PTs focused solely on my leg. The problem with that approach is that the wires on my left side are crossed: I exert my arm, my leg moves. Arbi trains my whole person to teach me simultaneous control over multiple muscle groups. The video below shows us working together in July 2011 – 15 months post-stroke. (My wonderful sister-in-law behind the camera.)

After the gym, Arbi treats me with electrical stimulation, which tires my spastic muscles, allowing him to stretch them – more effective than what I do on my own because the very effort of self-stretching makes me tense. Arbi has filled me with hope that we can beat my hated spasticity. I am so grateful to him, I volunteered to help launch his new website: www.arbiderianchiropractor.com. Editing the testimonials confirmed my impression that he's a swell guy. Plus, he's a Trojan fan … and buff.