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.

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.

Get a Grip

One thing that continues to blow my mind is how the stroke affected every part of my left-hand side — my toes, my intestines, my ear canal, even my eyeball.

My left eyeball now gets irritated easily. When I first tried to soothe it with eye drops, the drop plopped in one side of my eye and rolled out the other. I had no blink reflex because I couldn't feel the drop hitting my eye. It kept happening, so I started calling my Visine, "Eye Drop Outs." I had to learn to blink right away to "catch" the drop in my eye. Once I could feel dampness on my lids, I knew the drop had reached its target.

I remembered this lesson during my first efforts to pick up exercise balls with my fingers. The balls kept popping out of my hand. I was applying more pressure than necessary because I couldn't feel the ball against my fingertips. I had to learn to moderate my grip pressure.

I was explaining this to a friend who suffers from neuropathy. She said, "I know exactly what you mean! I was trying to pick up a bobby pin and I couldn't do it, because I couldn't feel it!" 

Wow. That was awesome not only to have my realization affirmed — that a sense of touch is important to grip — but to be reminded that if this stroke hadn't gotten me, some other thing probably would have. There is just a whole smorgasbord of difficulties out there to suffer from.

Over time, as I've practiced moving the exercise balls, I've begun to feel them. I had the clear sensation last week of the rough texture of the balls brushing my fingertips as I released them.

Next post: a formula for reawakening nerves.

Travel Tips for Survivors

I went to Europe for a month and have bounced back into my normal routine at home within a couple of weeks. My therapists say the break from rehab did my body good: My spine looks straighter and, mentally, I'm recharged. 

I had anticipated that frequent changes of accommodation would be exhausting. The time we spent in England changing location every couple nights was tough. By the end of that week my affected hand had reached its limit and was no longer able to help stabilize bags that needed stuffing and zipping.

Tip #1: Minimize change of accommodations.

Left: Climbing to the sundeck. Right: Walking the gangplank.

Having anticipated Tip #1, I thought traveling in France by houseboat would be a great idea. Unpack once, and your bedroom goes with you. I was able to maneuver better than I expected around the boat. But it was a confined space and if we moored for the night along a steep bank, I was trapped on the boat. This meant I didn't get much exercise, and by the time we came home, I was very stiff.

Tip #2: Allow space in your environment and schedule to keep up a minimum exercise routine.

Left: Carrying groceries. Right: With my nieces in Lutzelbourg.

 
Using a disability scooter meant less exercise as well, but having it allowed me to participate on bike rides and walks, and to carry my share of luggage and groceries. Ramps and lifts were available everywhere I needed them; European accommodations for the disabled seem to be on par with American standards. The best thing about traveling disabled is the way I zipped through customs and security lines — to the front of the line every time! It's the one thing in my life post-stroke that goes faster than it did before.

Tip #3: Explore tools that help you participate.

Carpe Diem

When I realized I wouldn't be able to ride a bicycle during our upcoming vacation in France, my husband searched the Internet and found the TravelScoot, a collapsible electric tricycle. Problem solved, I thought. When my fellow travelers take their bikes off the canal boat to cycle into the nearest village, I'll be able to join them. But further research revealed that the TravelScoot relies on hand brakes — one for each rear tire — and I can't operate a hand brake with my affected hand.

How about a tandem bike? An adult tricycle? Neither is available for rent. I reconciled myself to quiet hours alone on the boat.

Then my husband found the EV Rider Transport — a mobility scooter like you see old men riding along the sidewalk … except this one collapses into a compact unit that can be wheeled like a piece of luggage. It's exactly the kind of disability-related purchase I've been resisting for three years.

I tell my husband: "I don't want to spend a couple grand on something I won't use when I get better." 

"We need to do what works for you now," he counters.

"But it's not even fast enough to keep up with a bike," I argue.

"I'll walk with you," he says.

Good point. I hadn't even considered the fact that I can't keep up on walks — much less bike rides.  

We bought a Transport, and I've discovered other uses for it besides taking it to France. I now take my dog for walks. I race through obstacle courses with my niece and nephew, who ditch their own scooters and take mine because it's "more fun."

My Transport is fun. I call her "Francine." She reminds me not to put my life on hold while I recover. 

Nate and Abby take Francine for a test drive.

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.

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.

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.