Reflections

"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.   

Gift Ideas for Survivors

This time last year I wrote about all the stroke-related clutter I’ve collected in my house. So I recognize the irony now of writing a post advocating the acquisition of still more stuff. But a couple purchases I made recently have really improved my quality of life.

Food Trolley

I was making multiple trips to carry all my meal items one-at-a-time from the kitchen and back. While multiple trips meant more exercise, it wasn’t quality exercise. I was focused on not spilling my coffee instead of posture and mechanics. I’d rather wheel my breakfast to the table in one fell swoop and save my energy for quality exercise at the gym.

Since buying the food trolley, I have found multiple other uses – i.e., unloading the dishwasher onto the trolley and rolling it around the kitchen to put things away – same goes for laundry once it’s folded.

Robotic Vacuum Cleaner

Vacuuming is even harder after a stroke: moving the cord and furniture out of the way, wrapping up the cord at the finish – it is frustrating and hard on my back. Sweeping can be good therapy, but it doesn’t work on carpets and it’s exhausting. Enter my Roomba 630 – a relatively inexpensive robotic vacuum.

Last weekend, we had a dinner party. After being on my feet all morning preparing food, I was able to turn on my Roomba to clean my floors while I took a nap. I awoke to a clean house – rested and ready to greet my guests.

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.

The One-Handed Cook

Part of getting back into life after my stroke was to gradually resume the household duties that had fallen onto my husband and friends during my first months home. One of the scariest tasks for me was getting back into the kitchen. The kitchen is full of sharp and hot things. Packages demand to be opened and resealed. It is a domain of the two-handed.

But I couldn't continue to ask friends and family to drop off home-cooked meals. And after my fifth tray of enchiladas, I googled "one-handed cooking utensils" and hit a jackpot of products for the disabled chef.

I was reluctant to spend money on adaptive devices in the beginning because I was sure my complete recovery was right around the corner. Two-and-a-half years post-stroke and still very limited with my left hand, I recognize that the corner is at the end of an extremely long block.

My other excuse for not wanting adaptive equipment was that forcing myself to use standard tools would be therapeutic. But my first failed attempt to use a regular can opener convinced me that I ought to buy the One-Touch Can Opener. I was very skeptical that it would work as advertised — but the thing is magic!

My second concession was to purchase a Single-Handed Cutting Board. This item is more practical than magic. I've stabbed myself carelessly on the upright nails, and the suction cups that hold it in place are so strong that when you pull up the board after slicing tomatoes, the tomato juice and seeds splash all over the place. But I do not know any other way to slice and spread bread with only one hand. Watch my demo below. Bon Appetit!

These Little Piggies

This little piggy bends sideways,
this little piggy hides its head.
This little piggy feels swollen,
this little piggy won't tread.
And this little piggy says,
"Why the heck can't you other
little piggies get your act together?!"

Nothing has driven me more crazy post-stroke than the effect of spasticity on my toes. The tightness through the muscles on the bottom of my foot causes the toes to curl under. Engaging the muscles to walk exacerbates the problem – at its worst causing me to walk on my piggies' knuckles. It hurts.

I asked my medical team for help. My ex-physical therapist gave me a blank stare, which made me think I was the only stroke patient who ever had this symptom. My ex-physical medicine doctor referred me to a podiatrist who said she’d cut the tendons under my toes in a few years if they were still troubling me.

I researched online and discovered other stroke survivors have the same problem, but no solution. I purchased every toe gizmo I could get my feet on: toe stretchers, toe protectors, toe spacers and toe cushions. (The linked products were helpful.)

The FDA has not approved Botox for the treatment of lower limb spasticity, but my new physical medicine doctor has been progressive enough to try it in my foot and to trust my perception that it helps.

With time and treatment my muscles continue to relax, allowing my tendons to release with a satisfying "Pop!” I’ve had several popping sensations recently in the arch of my foot. Now my toes want relief. They're greedy that way. Oink.

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.

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!