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.

On the Table: Re-coordination

Sometimes Eric and I spend our sessions in the massage room. I lie on my back and he circles the table, moving each of my body parts into its correct position.  He does this over and over again – jostling, rotating and pressing me into proper alignment.

The sessions are relaxing, but I don’t just lie there: I’m an active participant, paying close attention to where he shifts my body. He’s constantly correcting the rise of my shoulder, the tuck of my chin, the tilt of my hips. My job is to learn to assume these positions myself.

I focus on the position he leaves me in as he moves onto another part of my body. When he reaches my spastic arm or leg, my torso often contorts: on the healthy side, my ribs bulge, my back arches. This compensation for my affected limbs is particularly noticeable on the table where I feel the absence of the supportive pressure beneath my back.

These same types of contortions occur when I’m upright and trying to use my affected leg. But they are more controllable on the table where maintaining balance is not a factor. If I can gently reassert the proper spine position while Eric works, my spastic muscles respond favorably, elongating as he pulls and shifts them to release the trapped energy that makes them stiff.

This illuminates two of the important principles that Eric has taught me:

1) The connectedness of the body – how the parts affect each other.

2) The necessity of re-coordination in stroke survivors to remind all of the muscles how they are supposed to work together.

More on these as we continue to examine Eric’s techniques.

Mother's Little Helper

My mother has been my greatest cheerleader since my stroke, driving me to therapy, holding my hand during Botox injections, and encouraging me when I feel hopeless. Sometimes I feel she’s naively optimistic.

This same “can-do” attitude prompted her at age 71 to embark on writing a non-fiction book about a program she participated in during college. My mother admits that when she volunteered at an alumni meeting to document the program’s history, she had no idea what she was getting into.

She researched for a couple years, produced a 600-page draft, and showed it to fellow alumni who changed some commas. But she needed more help and nobody was better positioned than me – a professional editor – to provide it.

I hesitated: Would editing the book take too much time away from rehab? Could I sit at the computer for long hours given my physical restrictions?

My husband encouraged me to volunteer. As well as “paying back” all the support Mom gave me post-stroke, working on the book would give me something to focus on besides rehab, and would show me whether I had the stamina to pursue my own dream of writing books.

After more than a year of intense editing, the book has been published; program alumni are happy; and Mom and I have bonded at a whole new level. Just as important, I’ve discovered one more thing I’m capable of doing despite my disability. 

Of course, my mother never had any doubts.

Project India: How College Students Won Friends for America, 1952-1969 by Judith Kerr Graven, available through Amazon.com and Barnes & Noble in print and ebook formats.

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.

On My Nerves

As a stroke survivor I have heard that to regain muscle control, I have to forge neural pathways between an undamaged part of my brain and the nerves that network through my muscles.

One tool I've used to facilitate innervation (nerve growth) is Neuromuscular Electrical Stimulation. In addition to receiving electrical stimulation as a regular part of physical therapy three times per week, I purchased a small NMES unit to use at home while doing hand exercises. Initially my arm and fingers moved only when triggered by the unit, which works by sticking electrodes to the skin and sending electrical pulses through the muscles. Basically, the stimulator does the job of nerves until they can do it for themselves — sort of like jumpstarting a car.

Additional methods of stimulation include massage, heat and exercise.  I use them all.

Stimulation triggers blood flow into the targeted area, causing oxygenation of the nerves. Nerves require oxygen in order to transmit impulses. Nerves transmitting impulses is how we move our muscles. Moving our muscles causes more blood to flood into them, starting the cycle again.

STIMULATION + OXYGENATION = INNERVATION

When we don't use our muscles, blood passes by on the circulation super highway without being detoured to nerves in nooks and crannies. No oxygen = no impulses = no movement; unused muscle tissue can atrophy and develop adhesions (tissue fibers that stick together because they're not lubricated).

When I follow the formula and innervation begins, I feel tingling, pain and/or twitching. Once I perceive these feelings, I know I have a connection to my brain, that my nerves are awake and ready for instruction. Then comes the hard work of strengthening and coordinating my muscles.

Thanks to Dr. Arbi Derian for explaining this to me and helping me to achieve it.

Problems with Goals

In January I set three goals to be finished by the end of June. I'm not going to achieve any of them. 

The first goal was something I thought I should do but realized I didn't want to do. I crossed it off my list. The stroke has taught me not to waste time on things I don't want to do.

I put the second goal on hold because another project came along that is equally important, but more time sensitive. Pre-stroke my solution to having multiple projects was to try harder and work longer. Post-stroke I don't have the stamina. Deadlines are now guidelines; stuff comes up, priorities shift.

My third goal was to re-learn how to ride a bicycle in preparation for an upcoming trip. I added training wheels to my bike and practiced pedaling at the gym. I improved, but I'm not ready. I now realize there is nothing I could have done to get the result I wanted in the timeframe allotted.

Expecting to regain a particular function within a particular period of time goes against my experience of stroke recovery. Muscles heal only so fast. Nerves grow only so fast. It's important to have goals. They get me out of bed and into action. But I need to be smart about the goals I set. When my goal is specific, I need to avoid deadlines. When there is a deadline, I need to frame the goal broadly, allowing for a variety of solutions.

The better goal for me is: By the end of June, figure out how to join my fellow travelers as they cycle through the French countryside.

Oh yeah — and, some day, learn to ride a bike … if I really want to.

Assembly Required

Shortly after I married I found myself standing in my new living room with a hammer in hand about to bellow for my husband to come help me hang a picture. Then I thought: Just because you now have a ring on your finger does not make you incapable of pounding a nail into the wall. So I hung the picture myself.

It's easy to fall into traditional roles and to make a habit of being helpless. As a disabled stroke survivor, I have to remind myself to try  before I call for help; sometimes I surprise myself with what I can do.

Last week I assembled a new nightstand for our guest room. The last two steps were hard. I thought of asking my husband for help, but I wanted to be able to blog that I had done it ALL BY MYSELF.

To attach the wooden knob, I worked with the screwdriver in my good right hand while holding the knob steady in my affected left. I had to take breaks after every few turns of the screw because my left hand would slip and grow tired. But that knob is on tight now; I dare it to come off!

Hammering in the 12 little nails to attach the nightstand’s back required some creativity. I could not hold those tiny nails in my left hand. I tried holding them with my right and hammering with my left, but my left hand had neither the required aim nor power to wield a hammer. Finally I used one of my wax earplugs to hold the nail steady. Once the nail was started, the wax peeled away without a trace, and I pounded those puppies home.

That’s right, people, I  built it!

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.

Breaking Barriers

In "Getting Better vs. Getting It Done," I wrote about the struggle to use my affected hand in performing daily activities. A comment on the post prompted me to ask "Why don't I use my left hand?"

1. I’m afraid of breaking something. With my unreliable grip, I once dropped a glass bottle of sparkling juice. Which leads me to…

2. I don't want to cleanup a mess. I tried holding the cap of the laundry detergent in my left hand while pouring the liquid with my right; the cap tipped, spilling detergent between the washer and dryer. Which leads me to…

3. I’m tired. Using my affected hand requires more concentration. If I'm tired, I'm less likely to push myself. And I'm more likely to be tired if I’ve had incidences like #2.

4. I'm in a hurry. Using my left hand slows me down, especially if it results in incidences like #2, which can follow #1 and are more likely to happen if #3.

5. I don’t want to hurt myself. My finger sensitivity is still minimal, so I don't reach into dishwater to grab a knife, or try to pick up the lid of a pot on the stove. I’ve been doing simple ironing, but I practice first with a cool iron. This only works because I'm not #4. I might have all my Christmas napkins put away by Labor Day.

6. Inability. There are things I can't do yet – like open my fingers when my arm is stretched above my head.

7. Habit. After 23 months, I'm on autopilot with my right hand and assume #6.

Now that I know why I don't use my left hand, I can develop strategies to break these barriers to progress. Awareness of a problem is the first step toward its solution.

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.

Stolen Identity

Years ago when I worked as editor of a fitness magazine, I published an article about staying motivated on an exercise routine. It delineated the types of motivation:

Negative Consequence Motivators: If I don't exercise I'll get fat, my husband will leave me, I’ll die of a heart attack, etc.

Positive Consequence Motivators: If I exercise I'll feel better, I can buy myself new clothes, etc.

Identity motivators: I exercise because that's part of who I am.

They can all work. But the most effective is the last one because, psychologically, it's hard to give up a piece of our identity.

Coming to terms with changes in my identity as a result of the stroke has been the most challenging part of my recovery so far. After I began to realize the impact of my physical limitations, I cried a lot. I thought I was depressed, but a psychotherapist told me I was grieving. I grieved the auntie who got down on the floor and played with the kids. I grieved the domestic superwoman who took care of house, husband and garden. I grieved the yoga student with an almost-perfect triangle pose.

Now, stroke survivor is part of my story. I'm looking forward to a time when it is no longer my headline … when I can look back at the experience and see how it led me someplace amazing I wouldn't otherwise have gone. And then I can say, "No, I wouldn’t give up this piece of who I am."

Battling the Dragon

I am learning to adapt my writing process from typing to dictating through Dragon Naturally Speaking software. Dragon is very helpful but ...

I say "My sister mothered me," and it types "My sister bothered me." I say "enunciation" and it types "NCAA sin." I say "air kisses with super loud" and it types "Eric kisses with sick birds allowed."

I am not make you dish it out. Correction: I’m not making this shit up.

I check the settings on my microphone and wonder if people are lying to me when they say my NCAA sin sounds normal again.

I found the mistakes so distracting at first, I had to go back and correct them right away. But then I lost my flow. So I tried writing with my eyes closed. By the time I opened them again, I had no way of reconstructing what I'd said.

Eyes open, I have learned not to swear out loud at these errors. Or I get something that looks like this: Eric kisses with sick birds allowed God dammit!

I have learned to pause and turn off the microphone before responding to my husband’s knock on my office door, or I get bizarre renditions of one-sided conversations.

The soft hiss of my breathing against the microphone often appears as "him him him him … ."

I have learned to speak punctuation and capital letters as a natural part of my dictation: open quote I close quote often becomes open quote cap A close quote period. Translation: "I" often becomes "A".

Forget playing the PNO, forget breeding my niece’s hair! A just want to type!

Qwerty Envy

On my first day of occupational therapy, I was asked to state a goal. My answer: To type.

I can't expect that I'll ever type as well as I used to. At university, I acquired speed and accuracy by entering classified ads on deadline for the school paper. Over the years, I became so fast that co-workers would comment. One asked, "Are you doing that for real? Or are you typing gibberish to make us think you're working?"

Typing was an integral part of my writing process. The words flowed out of my head and through my fingertips. When I stopped being able to type, I stopped being able to write. Several people recommended Dragon Naturally Speaking dictation software. Learning to adapt my writing process to this tool is one of the main reasons I started the blog.

My goal to type is an ambitious one. To reach it will take lots of patience and practice. I might as well start now.

The quick brown fox jumped over the lazy dogs.

(Typed with two hands – my right guiding all fingers on the left except the middle one, which can punch a key all on its own. 7 WPM, Errors: 0)