|March 2010: six days before my stroke|
Thursday, November 22, 2012
Wednesday, November 14, 2012
Thursday, October 18, 2012
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.
Sunday, September 9, 2012
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!
Wednesday, August 8, 2012
In my last couple posts, I've written about post-stroke spasms and spasticity, and about the treatments my A-team and I are using to overcome them. So much of my recovery has been filled with the anxiety of not knowing how much I'll improve, when I'm going to improve, or how I know if I’m improving. I hope this description of my healing sensations gives other survivors assurance or a target to aim for.
Monday, July 9, 2012
Tuesday, July 3, 2012
Next post: How the A-Team and I are breaking spasms and fighting spasticity.
Tuesday, June 5, 2012
- I have walked everywhere without my cane. That's no brace…no cane. Practically naked!
- I walked around my block in 18 minutes (without a cane) – beating my best time by 8 whole minutes!
- 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!
- 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.
- 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!
- 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!
- 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!
- After a couple months of not being inspired to post on my blog, you are reading this!
Sunday, May 13, 2012
Monday, April 23, 2012
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.
Friday, March 30, 2012
Graphic design uses a concept called "negative space." It's the empty space around whatever it is you want your audience to look at. Negative space helps define the subject. Properly used it's as important as what is there.
If the subject is "my life," then the stroke helped bring it into focus. What's important? As I regain energy, how do I want to use it?
Two years before the stroke, I left an all-consuming career to pursue a lifelong dream to write. I did write…some…but in the heady rush of freedom, I also let my life become busy with non-writing. I cleaned my house and tended my garden as if Sunset magazine would be doing a photo shoot. I tutored out of a compulsive need to contribute financially. I devoted myself to becoming the Best Auntie in the World.
Since the stroke I don't clean. I don't garden. I don't see my nieces and nephews as often. The stroke created negative space. In the quiet parcels of time between therapy and the few household chores I manage, I find myself drawn to my desk. It's relatively comfortable to sit here gazing at the computer. But there is only so much on-line Scrabble I can play and then I yearn for something more. I start to write.
The stroke is helping me to become "the me" I always wanted to be. As if by design.
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.
Friday, March 9, 2012
The right hemisphere of the human brain has one set of motor neurons to control all movement on the left side of the body. Because the stroke damaged that section of my brain, I now make bizarre involuntary movements – similar to a dog that shakes its leg during a belly scratch. I rub my left eye … my fingers straighten.
My hope for regaining control depends on forging new neural connections between my healthy brain tissue and nerves. I often feel electrical impulses shooting through areas of my left side. When I feel these twinges, I visualize my neural pathways branching out like a root system.
The stroke has had a similar effect on my relationships. Word of it traveled to my family and friends; it stretched into the past to people I hadn't heard from in years; it branched out to friends of friends and total strangers.
The blog has contributed to this phenomenon, connecting me with survivors across the continent and readers around the world. I used to think people who put their lives on the Internet were odd. Who would want to be so public? Now I can't imagine recovering without it. Suffering in isolation makes the suffering so much greater.
Like my motor neurons, these human connections move me. In the face of mortality, fears and pretenses melt away, making my interactions honest and intense. Even strangers have become more accessible – they initiate conversation, they offer help.
The stroke has shown me that the pathways between us exist. We just have to access them.
Wednesday, February 29, 2012
My therapist told me of a stroke patient who doesn't believe exercise will help; therefore she doesn't do it; therefore she doesn't get better. Our beliefs shape our reality.
There have been times in recovery where I've been unable to see how I'm going to get from A to B – from not being able to stand on my own to running. From not being able to open my fingers to typing. In times of doubt, faith has been the only tool that keeps me trying.
Faith is tough for an analytical, proof-based person like me. It requires a leap away from logic.
In high school I participated in an assembly featuring a hypnotist. With a dozen kids on stage, I closed my eyes and made a conscious decision to do as the hypnotist asked. I felt in complete control of my mind and choices. He asked me to stand and become stiff as a board. He told me he was laying me on a table and putting a book on my stomach. I felt the table under me, and the slight pressure of a book on my belly.
This picture from the 1981 yearbook shows what the audience saw: My tiny self propped between two chairs – one under my head and one under my feet – and a grown man standing on my unsupported stomach.
If I had opened my eyes, I would have collapsed. I think faith is like that. When I have doubts, I try to close my critical eye and find the willingness simply to follow suggestions.
Thursday, February 23, 2012
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.
Wednesday, February 15, 2012
Wednesday, February 8, 2012
My father recently survived his third stroke. My siblings and I decided he could no longer live alone amidst the cows and corn of rural Wisconsin. My sister located an assisted living near her home in Houston. My brother flew to Wisconsin in a snowstorm to pack Dad's treasured things. And I joined Dad last week in Houston to help him settle in.
After my stroke Dad stayed with me my first month home from the hospital. He chauffeured me, helped me shop, and bore the emotional upheaval as I started to adapt to this huge change in my life.
I flew to Houston on my own, drove a rental car, stayed in a hotel. I did little exercise. By the end of the week, my left side was in spasm and I could barely walk. After working so hard at recovery, I was disheartened to realize I could lose so much of what I've gained during times of stress and exhaustion. Sitting with Dad in the home's communal dining room, I sometimes felt I fit in better than he among the walkers and wheelchairs.
Dad still has physical abilities; he lost his driver's license and has trouble communicating. I chauffeured him and helped him shop. During our final excursion to Best Buy, I plonked down in the store-provided wheelchair and Dad pushed me around as we sought to locate a corded phone without too many confusing buttons. "People probably think I'm here to help you," Dad said. "But you're really here to help me."
Being able to help made my discomfort bearable. While I wasn't able to carry boxes or assemble furniture, I was well-equipped to share the emotional upheaval as Dad started to adapt to this huge change in his life.
Thursday, January 26, 2012
Every three months for the past year, I have received Botox injections – not for wrinkles – but as a treatment to relax my spastic muscles. I receive about 11 injections per session including my shoulder, bicep, forearm, calf, and the arch of my foot.
The treatment takes about 90 minutes starting with careful preparation of the poisonous and expensive substance. Botox is produced from the same bacteria that causes botulism poisoning. It's also a powerful neurotoxin (inhibits neuron communication across synapses). Essentially it blocks messages from brain to muscle, paralyzing the muscle to allow temporary relaxation.
My physical medicine doctor, "Dr. M," sticks electrodes to my skin around the targeted muscle. These sensors feed back to a computer that provides an audio representation of the erroneous signals being sent by the damaged area of my brain. Dr. M. inserts a needle into the belly of the muscle then wiggles it around until he finds the spot of highest interference – represented by a loud crackling static. Then he injects the Botox.
Yes, it hurts. My mom sat with me through one of my sessions and was distressed by my stifled cries. But about a week later the treated muscles relax enough to allow me to exercise and build the opposing weak muscles. In this way, Botox doesn't offer just temporary relief. It provides a respite during which my other treatments, such as exercise and electrical stimulation, can do their jobs more effectively to bring about long-term recovery.
Tuesday, January 17, 2012
Tuesday, January 10, 2012
A daddy-longlegs died in my kitchen last night. This morning it was belly up on the counter, its lithe legs curled inward.
My own limbs have curled inward since the stroke. I've often pondered this reaction of my body. Why, when my brain became damaged, did my muscles contract? I think about the fetal position – how it's common to assume this position when under attack. Perhaps contraction is nature's response to threat or injury.
I roll this hypothesis around in my mind. What about emotional hurts? Quite often my response to emotional injury has been to withdraw – to pull away from people. Contraction.
My stroke threatened to contract me emotionally as well as physically. I felt ashamed of whatever weakness caused me to have a stroke so young. I sometimes resisted letting people who knew me before see me after. I feared their judgment and pity. I sometimes avoided get-togethers and said "no" to new experiences that might have made me uncomfortable.
I have to fight these feelings and act against them as diligently as I exercise to rehabilitate my limbs. Facing each new person, each new experience, requires a summoning of courage. But I believe this stretching … of muscles, of boundaries, of limitations … helps me recover.
If contraction is part of death then perhaps expansion is necessary for healing.
Wednesday, January 4, 2012
About 20-30 percent of the 795,000 Americans who have strokes annually live with a long-term disability. Yet, outside medical facilities, I have encountered only two of them. Shortly after my release from rehab, I was in the passenger seat of my Dad's car waiting at a red light and watching a pedestrian limp-skipping across the street to catch a bus. His curled arm was on the same side as his lame foot.
"Look! He had a stroke!" I was fascinated as I watched the man pinch change from a coin purse with his bird-claw fingers. The sighting gave me heart. Here was someone like me getting on in the world.
Since then every time I see someone with a limp, my eyes dart to their same-side arm. No, not a stroke.
Then just before Christmas in the Home Depot parking lot, I spotted a woman coming toward me. Limp. Curled arm. Stroke. I tried to catch her eye to give her a smile, but she looked right past me. I was disappointed. I yearned to connect with her … to see the recognition in her eyes of our common burden as if that, somehow, would lighten our loads.
We survivors need some sort of handshake – like a fist bump or a high five – a way of acknowledging the deep understanding that comes from our shared experience. But with bum hands on random sides, a handshake could prove difficult.
Maybe we could salute with our good hand … being careful not to whack anyone if we're carrying a cane.
Maybe we should just stick with eye contact and a smile.
Or I could say: "Here's to you, fellow survivors. Thanks for lightening my load."