Snow and Strokes Do Not Mix Well Together

I grew up in Chicago where the schools were closed only two times in twenty years for snow. In the twenty-five years I have lived in New Jersey I have been telling the wimps who complain about bad weather that in Chicago they throw a first grader out a first story window when it snows.  If you can see the top of the child's head school is open.  But I have never seen snow like this winter in New Jersey.  We have had a major snowstorm every week for six weeks.  When I saw big pile of snow blocking my car I panicked.  The photo does not do the pile justice -- it is eight feet long and four feet high.  The shadow you see on the far left is my car.

When I lived in the city, going to work involved digging my car out of the snow cave the snow plow created by pushing snow up against the side of my car.  Coming home from work meant finding or creating a snow cave big enough for my car.  Fortunately my trailer park has its own maintenance staff.  Our maintenance man uses a backhoe to move snow that has piled up.  See the snow piled on my lawn that Joe did not cart away.  Moving a big pile of heavy, wet,     ice-encrusted snow is too much even for an able-bodied caregiver.

Fall Hazards Are Subtle

Babies learning to walk do not get hurt when they fall because they are 18 inches (45 cm) tall.  When I fall I go crashing to the ground like a tree that has just been cut down.  Stroke survivors with impaired balance need procedures and equipment that prevent falls.  It's the small things we do not pay attention to that trip us up.  I do not fall because I crash into my sofa.  I fall when I do not lift my hemiplegic (paralyzed) leg high enough to stop my toe from catching the edge of a rug which lifts the rug up. The rugs in the photo keep the floor dry when people at church track in rain and snow.  I have fallen when my toes caught the edge of this type of rug.  I learned the hard way to look down to see where the edge of the rug is before I step onto it. 

Another procedure keeps me safe at bedtime.  I rely on my vision to tell me if I am vertical.  If I turn around after I darken a room by turning the lamp off I stumble badly.  I quickly learned to make sure I am turned to face the lighted room I am heading towards before I look down to find the light switch.  It's a relief to find the lit room as soon as I look up. 

If these procedures sound trivial, let me tell you about a stroke survivor who could have ended up in a long-term care facility because of a bad fall.  He has impaired balance so the hospital staff gave him a long-handled reacher so he would not lean over to pick up objects on the floor.  But using a reacher at home was frustrating.  If he was downstairs the reacher was upstairs.  If he was at one end of the house the reacher was at the other end of the house.  This repeated aggravation tempted him to reach down to pick up something even though he knew it was not safe.  He fell and broke his sound wrist.  When he finally got back home he bought three more reachers.  A reacher is always close because he has two reachers per floor with one at each end of the house.

I learned not to let subtle fall hazards lull me into a false sense of security because they do not make me fall every time I encounter them.  Are there hazards in your home you are not paying attention to, like a poorly lit front porch or extension cords snaking across a room?

Hand Function Comes From My Gut

I learned hand function comes from my gut when a PT had me do abdominal exercises after back spasms returned  (Back Pain + Stroke = Disaster).  I was surprised to feel abdominal muscles on my paralyzed side burning from effort while I felt only a gentle contraction on my sound side. 
I was amazed to discover the arms need strong stomach muscles.  When I lift an arm, abdominal and back muscles must work to keep my trunk still so I will not fall over as the weight of my arm moves far from my body.  After doing the exercise below for awhile it got easier to lift my hemiplegic arm to get my hand to an object.

My PT taught me to do leg lifts with knees bent.  I decided to intensify the workout.  I clasp my hands together, lift both arms over head, and do a partial sit-up by lifting my head and twisting to the left until my right shoulder blade lifts off the bed.  I do 10 reps to the left and 10 to the right.  Before I move I press my low back against the mattress and take a deep breath.  As I move I slowly let my breath out through pursed lips.  Holding my breath would increase my blood pressure. 

But there is a catch - I had to do the exercise correctly to feel abdominal muscles on my paralyzed side burn for months.  Dean cites a study that found stroke survivors who received real-time video feedback about how they did abdominal exercises improved their walking significantly more than clients who did not get feedback.  My PT had superb clinical observation skills and the ability to teach.  Instead of telling me how many reps to do and walking away she stayed and gave me verbal feedback on what I was doing wrong. 

A 2nd catch is consistently doing a new exercise.  After getting up to go to the bathroom I get back in bed to do back and hand exercises while my muscles are still toasty warm.  So I added this abdominal exercise to my morning routine.  You would not be able to see what I am doing because I do it under the covers.

I Would Go Stark Raving Mad

My hemiplegic hand helps my sound hand do over 100 different tasks.  However, I am often slow or do a modified version of the task.  Despite my self-confidence, dozens of people have offered to do a manual task for me.  A few have even taken an object out of my hand.  Able-bodied people know it is easy for them to quickly manipulate an object -- so why should I do it if they are there?  My response when people offer to help when I do not need it is "I can do it myself, but thank you for offering."   When I say this I always make sure to smile and look them in the eye.  This is a nice way to acknowledge their good heart without embarrassing them when I reject their help.

Yet nine years after my stroke I see that this small group of insistent people will always be there. 
After I use the "thank you " response I am going to try a second-tier response to more forcefully rebuff these people.  I am going to say "If I lived in a facility that took me to Wal-Mart once a week
I would go stark raving mad.  Do not take away the independence that keeps me in my home."  

I honestly do not know how handicapped children ever become independent adults. 

Getting Early Recovery

PTs do not start gait training by asking clients to lift their hemiplegic (paralyzed) leg in the air and then move their ankle and toes.  Yet classic hand evaluations like the Fugl-Meyer Assessment tell OTs to ask stroke survivors to sit and lift their hemiplegic arm up to table top height to pick up an object resting on the table. There is a problem with evaluating early hand function this way.  When a stroke survivor struggles to lift a paralyzed arm, high muscle tone can cascade down the arm and make the hand too tight to open to grasp an object.  



Hand-to-hand transfers can promote early hand use because the hemiplegic hand is held close to the body as it opens to accept an object from the sound hand.  Notice how small the shoulder angle is when objects are close to the body.  This angle is similar to the angle PTs expect from the hip when clients walk.  Finally letting the thigh take some of the weight of the bottle promotes early success.  The hemiplegic hand only has to keep the bottle still as the sound hand takes the cap off and puts it back on.  Modifying tasks so clients can succeed is a good way to change everyone's expectation of what is possible.  On the first day in rehab I walked the full length of the PT gym with the help of three people.  I did not dismiss this early attempt because it was a modified version of my end goal.  See Small Motions Make My Hand Useful for more ways to use hand-to-hand transfers.

Small Motions Make My Hand Useful

After an electrical stimulation device called NeuroMove helped me regain movement in my hemiplegic (paralyzed) hand, I learned very small movements can make a hand functional.  If you can open your hemi hand 1-2 inches, you can pick up an object with your sound hand and transfer it to your hemi hand.  While the hemi hand holds objects close to the body the sound hand can do its job.  For example, when washing the crotch, the sound hand needs to be free to wash the nooks and crannies.  So my hemiplegic hand holds the shower hose close to my body.  A little bit of hand movement means my mother and I are the only people who have washed my bottom.  Preserving my dignity and feeling clean means a lot to me.  

Retraining the brain requires repetition so it's good hand-to-hand transfers allow me to do 18 ADL tasks.  Another example -  my hemi hand receives a tube of toothpaste from my sound hand which then removes the cap.  The end of the tube is propped against my stomach because this new tube is heavy.  I don't want to drop it and splatter toothpaste all over.  Using my hemiplegic hand during ADLs gives me the repetitions I need to retrain my brain.

Current hand tests begin by asking clients to pick up small objects from a table.  Adding hand-to-hand transfers to hand tests would help stroke survivors see that opening and closing their hemi hand can be useful earlier than they ever thought possible.

Cracks on the Ends of My Fingers

Winter is finally here and I have a crack in the skin at the end of the fourth finger on my sound hand.  Every time the end of my finger contacts an object the crack opens painfully.  I wash my hand so often I have no natural oil in my skin.  In previous winters I have worn a rubber glove to bed after slathering my hand with many types of lotion. This only slows down the drying process. 
I felt desperate when the end of my fourth finger cracked open because I knew my thumb was next.  It develops an even bigger crack which is even more painful. 

I Googled paraffin bath because warm wax softens the skin.  On-line users said it takes 6 hours for the wax to melt.  To prevent burns, the heating element is too weak to melt the wax quickly.  This means leaving the unit on 24 hours a day to keep the wax liquid.  I already run up my winter electric bill by turning on Christmas lights and using a warm air vaporizer 6 hours a night.  Then there were users who said wax leaked out of the bottom of their unit.  Since I live alone there is no "Honey do" at my house.  Fortunately, one of my on-line searches for paraffin baths captured a hand cream that contains paraffin so I bought it.

Bath and Body Works makes a product called True Blue Super Softening Hand Lotion with paraffin.  The sandpaper rough skin on the end of my thumb disappeared after one application. 
It took 5 days for the crack on my fourth finger to close up after using one small dab the size of a pea each day.  This is good because the lotion costs $12 for a 2.5 fluid ounce tube.

I let the lotion sink in after I go to bed at night.  I put a dab of lotion on the back of my hemiplegic hand and get into bed with a small towel and the remote that turns off my ceiling light.  I put the remote next to my sound thigh and cover it with the towel.  After I transfer the lotion to my sound hand, I press on the remote through the towel to turn off the lights and lay my hand on the towel. This is so much easier than using my teeth to wrestle a rubber glove on and off my sound hand.  My hemiplegic hand is an assistive hand, but I need all five fingers working on my sound hand.

Happiness is Biochemical

"Your brain is like Velcro for negative experiences and like Teflon for positive ones," says Rick Hanson (1, p. 41).  When we briefly notice positive experiences they slip away the way a fried egg slides out of a Teflon-coated pan.  On the other hand, the stone age brain we inherited is wired to quickly detect and store negative experiences that may be threats. 

To protect us, our brains developed superfast pathways that fire without our conscious awareness, like the reflex that yanks our hand away from something hot.  A brain scan study found that an area of the brain called the amygdala lit up faster when people saw fearful faces than when they saw neutral or happy faces (2).  Subjects remembered more fearful faces than neutral or happy faces when shown the photos a second time 24 hours later.  When information is tagged as negative the amygdala tells the brain to immediately send that information to long-term memory (1).  It is good to remember that a fearful face could mean danger.  However, playing negative experiences over and in our heads is not always helpful.

My goal for being happier is not to turn into a bubbly person who does not feel angry or sad. 
My goal is to balance the good and bad.  Surprisingly being happy does not require a positive attitude.  It requires concrete action.  Meditation has a positive affect on mood (3,4), but meditation requires disciple and time.  Simpler actions can change the brain.

Take 10 seconds to enjoy a happy moment (1).  I am talking about noticing a happy event I did not plan, like the parking spot I got that was close to the entrance of a crowded grocery store the day before Christmas.  Lately I have been enjoying a shower.  Sub-freezing temperatures have finally arrived so a warm shower rehydrates my dry skin and relaxes my cold muscles.  I have been standing still for 10 seconds after I get out of the shower to enjoy this luxurious feeing.  When you are happy the brain releases dopamine which helps us focus on the happy experience and build a more richly detailed positive memory.  Multiple brief episodes of happiness add up. 

Get more sleep.  Sleep depravation produced only a 19% loss of negative information, but it produced a 59% loss of positive information (5).  Sleep deprived subjects recalled more negative words (e.g. cancer) than positive words 24 hours after they saw the list.  This difference occurs because of the different way these two types of information are stored.  Negative information goes immediately into long-term memory.  Positive information stays in short-term memory until the hippocampus sends it to long-term memory as we sleep.  Less sleep = fewer positive memories.  

Cheating Safely Saves My Christmas

Last December I talked about volunteers who saved my Christmas.       Even with their help, I found that Christmas was stressful because a     stroke took away my ability to push through my fatigue.  Unfortunately I've accumulated two large boxes of Christmas decorations over the years.  I was exhausted after putting up all my decorations.  What OTs call "participation" requires problem solving.  Instead of packing and repacking to get every item back in my crowded boxes,  I set aside nice items I no longer feel an attachment to for my church's spring sale.  I raised money for charity and send nice decorations to families that I hope will love them. 

 

I kept items: 1) that are handmade like Santa made from a mop (photo on left), 2) that remind me of a happy memory like sledding with my brothers (photo on right), or 3) can be arranged in a tableau like the reindeer (photo below). 

Stroke survivors and caregivers aren't the only people who need to let go.  A December workshop at my church is called "Simplify the Holidays."  The flyer says " Do you find the holidays are filled with shoulds and to-do lists?  Are you struggling with maintaining old traditions that no longer have meaning in your family life?"  The choices I made last Christmas made the current holiday more enjoyable.    

Orthopedic Rehab Run Amok

Rehabilitation may include regaining flexibility, strength, endurance, and coordination.  When therapists treat orthopedic cases (e.g. broken hip) they focus on flexibility and strength.  One hour treatment sessions provide some work on endurance, but therapists assume endurance will increase as clients move more when they get home.  Coordination can be ignored because people with orthopedic injuries have intact brains.  

To reduce pain and increase flexibility in the shoulder de Jong et al. treated 46 stroke survivors (1). Subjects in the experimental group were placed in one of two positions (photo on left) and shoulder muscles were given electrical stimulation for 45 minutes twice a day every day for eight weeks.  Subjects in the control group were placed in a sham position (photo on right) and forearm muscles were electrically stimulated for the same amount of time.  "In the experimental group some participants reported that they considered the intervention to be very arduous, pain and spasticity medication were prescribed more frequently, and protocol compliance was lower (p. 250)."  If you have a tight shoulder can you imagine being trapped in the positions on the left for 90 minutes a day while your muscles were forced to contract for 45 minutes without a rest?

Shoulder flexibility and pain did not improve and neither did ADLs.  Using electrical stimulation to force muscles to contract does nothing to retrain the brain.  Assuming muscles can work in a coordinated fashion is OK for orthopedic cases, but stroke survivors must learn to recruit and coordinate numerous muscles that have been paralyzed.  PTs like de Jong ignore complex coordination because they treat in unchanging settings (see Walking in a Barren Environment)
that require only a few repetitive motions.  Walking clients on flat floors in wide open spaces does not prepare PTs to think about the wide range of coordinated movements the upper extremities must perform.  Working on one isometric contraction had very little chance of improving ADLs in stroke survivors.

 1. de Jong LD, Dijkstra PU, Gerritsen J, Geurts A, Postema K. Combined arm stretch positioning and neuromuscular electrical stimulation during rehabilitation does not improve range of motion, shoulder pain or function in patients after stroke: a randomized trial.  Journal of Physiotherapy. 2013;59:245-254.