Mouthing Off

Marcelle Greene
Up Stroke

Wednesday, March 21, 2012

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.

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One Wedding and a Funeral

Marcelle Greene
Up Stroke

Wednesday, November 12, 2014

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.

I can paddle a boat, canoe?

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.

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Such a Spaz

Marcelle Greene
Up Stroke

Sunday, June 19, 2011

When I was a kid, one of my favorite expressions was "Don't have a spaz," which I would say to someone who had lost emotional control. I didn't know it then, but spaz is a derivative of "spasticity," which is a common result of stroke. It describes a state of continuous, uncontrollable muscle contractions.

Absent the proper signals from my brain, my fingers clench into a fist. My arm curls toward my chest. My foot turns inward, pulled by tight muscles along my inner leg. My chest constricts like a steel band around my lung. Sometimes it's hard to breathe.

I am on two types of medication to counteract this problem – daily oral baclofen and quarterly Botox injections. They both ease but do not eliminate the symptoms.

My therapists tell me that I can learn to control the spasticity. For each movement, I concentrate on extending one set of muscles then contracting the opposing muscles. To straighten my arm, I focus on relaxing my bicep then recruiting my tricep. It's exhausting mental and physical work. I sometimes break a sweat just moving a can of tomato paste.

My no-longer neurologist told me that I'd be fighting spasticity the rest of my life. I'm not sure how that statement is supposed to help me. As someone who cultivated flexibility during 10 years of yoga, the idea of spending the next 30-plus years with half my body contracted totally makes me have a spaz.

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Reflections

Marcelle Greene
Up Stroke

Friday, December 11, 2015

"Pay no attention to that man behind
the curtain." -Wizard of Oz

I concealed my affected hand behind a mirror while I watched the reflections of my healthy hand open and close. This tricked my brain: As I watched the reflection of my healthy hand, I had the sensation that my affected hand mimicked the movement! But I couldn’t resist peaking behind the mirror, where I saw the reality of my curled limp hand. For me, that shattered any benefit of mirror therapy.

What I find more useful is to study my healthy side for clues on how to use my challenged side. When working with SaeboFlex to grasp balls, I sometimes notice my movement feels unnatural. I am approaching the ball in a way that makes it easier to grasp given my disability. I stop and study how my healthy side would do it.  I observe the angle I reach from, the position of my hand, then try to mimic that with my affected side – because my objective isn’t to pick up a therapy ball – but to move my affected side as normally as possible.

I learned from Eric that symmetry is important. He sees a heavy crease in the skin on my affected side, while the healthy side has a fine line. He sees the ridge of a curving tendon on my affected shin, while its mate runs straight. He shows me a mound and hollow in my affected calf compared with the smooth curve of the healthy muscle on the other side. He tells me to imagine my skin like a sausage casing and to spread the meat evenly inside it.

My body is a roadmap showing me where it needs work: level the shoulders, flatten the torso, balance the hips. Today my mirror therapy encourages me to look at both sides.

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A Bedtime Story

Marcelle Greene
Up Stroke

Wednesday, November 19, 2014

I always have loved to read in bed. I was the kid who hid under the covers with a flashlight reading long after “lights out.” In marriage, my tired husband complained: “How much longer are you going to have that light on?”

After the stroke I tried to read in bed but, with one hand, I couldn’t position the pillows comfortably behind my back; I got tired holding the book open single-handed, and frustrated trying to turn the pages. I gave up on physical books and started listening to audio books. After a year of buying audio books through Audible.com, I discovered I can borrow them free over the Internet from my local library. When I’m uncomfortable and can’t sleep, listening to an audio book is a good distraction. The major drawback is that many books I want to read aren’t available in audio format.

Recently, my husband and I went shopping for a new mattress. I was lolling on one when the salesman pushed a button that raised my head and knees. “Hey,” I thought. “This is comfortable. I could read an actual book in this position!”

We bought the adjustable frame in addition to a new mattress. The first night at home with it, my husband came into the bedroom and said, “It’s good to see you reading again.” It’s a piece of our old life rediscovered. He hasn’t even complained about the light being on when he goes to sleep.

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Oh, What a Feeling!

Marcelle Greene
Up Stroke

Tuesday, August 2, 2011

My loss of sensation was as concerning as my loss of movement. In the hospital, family members would touch my fingers or toes and ask, "Can you feel this?"

"No."

Not only did I lose sensation in my lower limbs, I could not place them in space. With my eyes closed, I could not tell if my arm rested by my side or in your hands. My perimeter had become fuzzy.

As feeling began to return in those early weeks, I qualified it: There was vibration and pressure, but not touch – no sense of skin against skin or the texture of bed sheets.

Temperature returned during a rehab shower – strange signals from my left leg. My right leg felt hot water. So, this is what hot feels like, I told myself. To this day my left side feels heat more keenly than my right. Hot is insistent.

A different sensation emerged one day as my occupational therapist worked with my arm. Her hands were cold. And so this is what cold feels like, I instructed myself. Cold is subtle – it reveals itself from a distance.

Without looking, I still cannot tell if my fingers are open or curled – grasping an object or empty. To test my sense of touch, I ask my husband to brush a cotton swab beneath my fingertips. With eyes closed, I try to tell which finger he's touching. For the first time last week, (15 months post-stroke), I was finally able to identify each finger correctly.

Who knew that having my husband tickle me with a Q-Tip could be so exciting?

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The Value of Acceptance

Marcelle Greene
Up Stroke

Wednesday, July 20, 2011

This time last summer I was in a dark place, exercising four hours every day and still not seeing the results I wanted. My imagined life as a disabled person stretched before me unwanted. Two years, I told myself. If, in two years, I can't stand this anymore, I will jump off a bridge. In tears once again when my husband arrived home from work, I followed him into our sunny garden to talk.

"What I've been trying to figure out," I told him, "is why I was willing to work hard at a job for 11 years to make things better, but I am so quick to give up on myself."

"Why do you think that is?"

"Because at my job, there was the promise of something better – a raise, a promotion. But now, I'm working so hard just to get back to where I was."

"It sounds like you haven't accepted what's happened," he said. "You're not trying to get back to where you were. You're trying to move forward from the day you had the stroke."

Oh.

So long as I focused on what I used to be or what I wanted to be, I could not be happy now. I had to realize that exercising like a maniac was not going to get me "there" any faster. I had to find ways to enjoy my life now and balance that with rehabilitation.

I used to equate acceptance with giving up. Now I see it as a gateway to happiness.

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Putting It All Together

Marcelle Greene
Up Stroke

Friday, December 18, 2015

Last summer I “tried my hand” at rowing a boat. My husband Ian and I were staying with family at the Hood Canal in Washington State. I picked my way carefully over the pebbled beach and climbed into the rowboat while Ian held it steady. He rowed away from shore and handed me the oars – one at a time, of course, because I had to position my affected hand on the left oar.

First uncoordinated attempt: note different oar positions.

I tried to row the boat. The left oar flailed.

I needed to help my affected side through a few strokes so it could get the feel of the circular motion. I gave the right oar to Ian and placed my right hand over my left, guiding myself through the motions -- dipping and pulling, pushing and leaning.

When that felt comfortable, I traded oars with Ian. Now I observed my right side doing the same motions. I felt how the oar pushed on my thumb as I reached forward, and pulled on my index joint as I leaned backward. When I had that sensation locked in my mind, I took both oars.

Reflections

Marcelle Greene
Up Stroke

Friday, December 11, 2015

I concealed my affected hand behind a mirror while I watched the reflections of my healthy hand open and close. This tricked my brain: As I watched the reflection of my healthy hand, I had the sensation that my affected hand mimicked the movement! But I couldn’t resist peaking behind the mirror, where I saw the reality of my curled limp hand. For me, that shattered any benefit of mirror therapy.

"Pay no attention to that man behind
the curtain." -Wizard of Oz

What I find more useful is to study my healthy side for clues on how to use my challenged side. When working with SaeboFlex to grasp balls, I sometimes notice my movement feels unnatural. I am approaching the ball in a way that makes it easier to grasp given my disability. I stop and study how my healthy side would do it.  I observe the angle I reach from, the position of my hand, then try to mimic that with my affected side – because my objective isn’t to pick up a therapy ball – but to move my affected side as normally as possible.

Mind Over Muscle

Marcelle Greene
Up Stroke

Friday, December 4, 2015

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.

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Coming From the Core

Marcelle Greene
Up Stroke

Friday, November 27, 2015

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.

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Incremental Improvement

Marcelle Greene
Up Stroke

Friday, November 20, 2015

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.

As Above, So Below

Marcelle Greene
Up Stroke

Friday, November 13, 2015

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.

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As Above, So Below

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On the Table: Re-coordination

Marcelle Greene
Up Stroke

Friday, November 6, 2015

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.

That Is the Question

Marcelle Greene
Up Stroke

Saturday, May 28, 2011

[Q]: How does a non-smoking, non-drinking, exercising, healthy-eating, low-stress mid-lifer have a stroke? 

Doctors [A]: Dissection. The carotid artery that carries blood to my brain developed a split in its interior wall. A clot formed and a piece of that broke off and blocked a vessel in my motor strip.

Me [A]: In short, a corroded carotid.

[Q]: Why did I have a dissection? 

Doctors [A]: Twisted arteries. Neck stress from yoga and chiropractic. Fluctuating blood pressure.

Friends and Strangers [A]: To learn a life lesson. To find my path.

Me [A]: I have gone over and over things I did that may have led to the stroke. In yoga class the night before, I turned my head while in shoulder stand. A few days before that, I self-administered a neck adjustment that emitted a loud crack. Just months before that I was showing off for my three-year-old nephew by doing a headstand, and he toppled me like a tower of blocks. I’ve also pondered what I needed to learn that took something this drastic to get my attention: Patience. Compassion. Balance.

No matter what I think, or what I'm told, I always come back to one truth: None of the answers can change what happened. And so there is only one question that really matters.

How do I go forward from here?

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Recovery Beyond Two Years

Marcelle Greene
Up Stroke

Friday, October 23, 2015

I am five years post-stroke. Two-and-a-half years ago I started working with a new therapist. I hinted about the work we’re doing in Rehab From Rehab, but I’ve avoided specifics for two reasons:

1. I could not imagine how to write about his techniques.
2. I didn’t want to report on techniques that did not deliver results.

I’m heartened to state now that I have improved and there is good reason to believe I will continue to improve. How much? Will I ever be able to use my hand? No one knows.

I have recently been in touch with a stroke survivor and new reader to my blog who seemed to want assurance that a second round of Botox injections on a spastic forearm would yield a worthwhile result. While I wrote back with encouraging details of my Botox experience, I think my most important point was this: I would have lost heart and gone insane years ago if I’d been focusing on the result.

The information we stroke survivors want to hear is that we’re going to get better and how long it’s going to take. The past few years have taught me to shift my attention to the process and to focus on enjoying my life today.

I understand that it can be demoralizing to invest the time, money, and emotional energy in therapy when there is no immediate evidence of a result. In Stolen Identity, I wrote about the types of motivation that keep us going in an exercise regimen – the most helpful being the “identity motivator.”

Yes, I’ve continued therapy past the two-year mark and it has yielded incremental results. But I’m going to keep doing therapy because I’ve made the decision that’s who I am.

Next post: About my new therapist

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Recovery Beyond Two Years

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Now I Lay Me Down To Sleep

Marcelle Greene
Up Stroke

Friday, August 12, 2011

When my husband and I were dating, he took me on a hike. After a couple hours of climbing, I needed a nap. I stepped off the dirt trail onto the rocky slope and lay down. I slept for an hour, amusing passing hikers and giving my husband a foretaste of our traveling life together. I have missed great swathes of Africa and Asia curled in the womb of the passenger seat while my husband serves as both driver and navigator.

Like everything else, the stroke has changed my ability to snooze easily. I put on the foot brace, the arm brace, and position the pillows just so – then get an itch under my left shoulder blade. Or I struggle to pull the covers over my icy left side and, in the process, break a sweat that requires everything to be thrown off again.

Thankfully, I am now able to sleep on my sides for brief periods. But this requires rearranging everything, so rolling over is a major commitment. And getting up in the night? To ambulate, the boot has to come off. Sometimes those devious Velcro straps conspire to stick to each other while I'm in the bathroom so that I have to pry them apart one-handed in the dark when I get back.

I spend plenty of time lying awake, my husband snoring happily beside me. My solution: audio books on iPod. Now if only I can figure out how to stop the earphones tangling.

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Rehab From Rehab

Marcelle Greene
Up Stroke

Saturday, October 26, 2013

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.

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Rehab From Rehab

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Assembling the "A Team"

Marcelle Greene
Up Stroke

Monday, September 19, 2011

I had several bad experiences with healthcare professionals assigned to my case: An occupational therapist, a neurologist, and a physical therapist who, though he specialized in neurological conditions, should be rehabilitating buff guys with sports injuries. My progress was simply too slow for him, and I left every session heavy with his disappointment.

Fortunately, previous medical problems taught me I don't have to work with the first provider assigned to my case, that I need to trust my instincts, and that I need to act as my own advocate no matter how much I want to lie down and play the sick patient.

The professionals I choose to work with have several things in common: They listen, they respect my instincts, and they are able to clearly communicate their knowledge to me.

My medical team consists of:

1. Occupational therapist (covered by insurance)
2. Exercise physiologist/chiropractor (not covered)
3. Massage therapist (not covered)
4. Acupuncturist (covered)
5. Doctor of Physical Medicine (covered)
6. Neurologist (covered)

I call the first three my "A Team." Each of them has done as much for my emotional rehabilitation as my physical. In the 21st century, doctors who don't understand the importance of attitude – and their influence over it – should consider an alternative career … pouring cement, perhaps.

I've talked to people who have trouble finding the right health care provider. My advice: Keep looking. A good one makes all the difference.

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Problems with Goals

Marcelle Greene
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Sunday, June 2, 2013

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.

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Problems with Goals

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