Surgery is Contraindicated

Since knee surgery my standing balance is worse.  I have repeatedly stumbled backwards because I cannot feel when I am leaning too far behind vertical.  Losing my balance was the first symptom of my two brainstem strokes.
My strokes were caused by narrowing of the vertebral artery that supplies blood to the pons.  The pons in the brainstem is the bridge to the cerebellum which controls balance.

There is a chance that bending my neck back to put a breathing tube down my throat during surgery put a kink in the vertebral artery in my neck.  If a 15 minute meniscal repair surgery impaired my balance, I do not want to see what happens after a longer knee replacement surgery.   

Bottom-Line: I am serious about the exercises I got from my latest PT.

Rolling Discharge While I am Still in Therapy

When I am in therapy I do a rolling discharge.  I never wait until I am discharged to start doing exercises at home because there are often problems transferring exercises to a new environment.

The 1st challenge is modifying how I exercise at home because I do not have the right equipment.  For example, my PT had me lie on my stomach on an 8 foot wide mat table and bend my knee.    I need strong knee flexors to stop the joint-damaging SNAP my knee makes when I straighten it to swing my leg forward to take a step.  However, my single bed at home is narrow.  I tried lying on my back close to one edge, rolling onto my stomach which moves me to the other edge, and carefully inching my way back to the center by pushing with my elbows.  This was scary and stressful for my hemiplegic arm.

My soft bed also does not provide a firm surface to push off of.  I tried folding a yoga mat to create a firmer surface under my belly, but it was a nightmare to position with one hand.

The 2nd challenge is establishing a consistent routine that saves me from muscle atrophy after I  worked so hard in therapy.  A reliable memory aid helps me follow through on my good intentions.  I reach under the bed covers to remove the ball that keeps the covers off my hyper-sensitive big toe.  Instead of rolling the ball into its corner, now I roll it towards my leg brace.  After I don my brace the ball reminds me to go to the bathroom, stand while I hold onto the grab bar next to my bathtub, and bend my knee.  I can do 8 repetitions before my weak hamstrings poop out.

Bottom-Line:  Figuring out how to do exercises at home can take creativity and persistence.  Starting this process before therapy ends means I can ask my therapist for suggestions.

Mini Exercise

Pain did not end after knee surgery so I asked for PT.  My PT discovered my knee problem was caused by weak muscles that do not keep my joints in good alignment.  However, I cannot be trusted to do boring, time-consuming exercises that never end because my weakness will never fully go away.  In the 13 years since my stroke I learned I will do 3 to 5 repetitions every day  IF I use an object as a memory aid.  The stranger the memory aid the better it is at catching my attention.  I call doing a few reps every day forever a mini-exercise.

When I told my PT about mini-exercises she looked skeptical.  She is in her thirties so she can recover strength and flexibility if she stops and then starts exercising.  She does not know how
mind-numbing exercise is when it must be done every day until she dies.  Here is one of the
mini-exercises I added to my daily routine because I do not want knee replacement surgery.

My PT had me do lunges to strengthen my knee.  My knee wobbled left or right (red arrow) as it bent because my hip muscles are weak.  After 1 or 2 reps my knee stays lined up with my foot (green arrow) because hip muscles work together to keep my knee in the midline.  I chose the toilet to prompt me to do a few lunges.  On his TV show Dr. Oz showed how much water sprays out of a toilet when it is flushed so I got in the habit of lowering the lid before I flush.  I have to wait for 10 seconds so I thought I may as well do lunges.

Two Sets of Ten Do Not Undo 12 Hours of Disuse

I had back spasms after my stroke.  It was terrifying to be frozen in standing hoping I would not drop my cane or fall down.  I was highly motivated when a PT gave me exercises to strengthen the weak abdominals that let my back arch every time I lift my hemiplegic leg.  I do these exercises before I get out of bed in the morning.  However, a few repetitions do not undo the effects of
12 hours of disuse.  

If exercise was enough, coaches would stop after they make football players run laps around the field and throw and catch footballs.  Exercise conditions the body, but the mind has to learn to use new skills when we are distracted.  Exercise strengthens muscles, but it does not retrain the brain to use muscles when we have a cognitive challenge.  

Transferring gains from exercise to my daily routine has had mixed results.  Success: I consistently lift my hemiplegic leg higher than is necessary to walk up the steps to my front door.  I am pleased I do not see scuff marks on the top on my new shoe.  I am no longer dragging the toe of my shoe over the edge of the step. 

 

Failure: I want to stop arching my back when I lean my stomach against a counter for support. I am failing two-thirds of the time.  To remind myself to reach forward and lean on my right hemiplegic hand, I put a beige piece of non-slip shelf liner on the front edge of the kitchen sink.  I kept forgetting to do this so I added a 2nd memory aid.  A blue piece of non-slip shelf liner reminds me to 1st rest my sound hand on the counter when my hemiplegic hand reaches for the counter.  I am improving so I know I can stop this bad habit.

Two Ways Therapists Earn Their Pay

Therapists help clients in many ways but here are two ways therapists earn their pay.

1.  Contraindications.  When I taught OT students I used case studies to help them to think about the needs of each client.  I had students work in small groups to treatment plan for one case and then had them individually treatment plan for another case on an exam.  This allowed me to identify students who knew which solutions from the 1st case could be used with the 2nd case.  For example, the 1st stroke survivor had a tight arm that did not want to straighten to allow him to don a shirt.  This client should be taught to use gravity to relax the arm by hanging it between his legs before dressing.  However, on the exam I gave them a stroke survivor who had flaccid shoulder muscles that could not hold the arm in its socket.  Hanging the arm between the legs was contraindicated because it can damage nerves by stretching them.  A client should not have a brachial plexus injury added to the paralysis created by a stroke.  Students lost double points when they blindly used protocols that endangered a client.  The phrase "all strokes are different" can irritate stroke survivors, but a therapist who thinks all strokes are the same is dangerous.

2.  Nothing Works 100% of the Time.  When science finds a new cure it never saves 100% of the people.  A treatment protocol is considered successful when it cures a majority of the people.  It is a therapist's job to figure out what to do when a client does not respond to a protocol that has succeeded with many other clients.  For example, the PT who is treating me after my knee surgery taped my knee.  I never dreamed the tape would aggravate the constant burning I feel in my foot.  When the burning sensation crept up my calf to my knee I took the tape off.  She will have to find another way to increase my knee stability.  Apple would lose business if updates they send to iphones work on only 80% of phones.  Humans have to live with the fact that we are not identical clones that respond identically to protocols.

Saved by Dumb Luck AGAIN

Pain is a great motivator.  A painful crack (black line in photo) that starts in the quick of my sound thumb returned this winter.  Every time I picked up an object the pressure opened this crack which was very painful.  So I was happy that dumb luck saved me again.  I bought a garden glove to wear when washing dishes because this glove is bigger and looser than a regular kitchen glove.  The roomier fit makes it easier to slip on my hand. 

The dumb luck came when I stapled the top of the glove
(see circle in 3rd photo) to shorten it.  As soon as I saw the cuff I created my hemiplegic (affected) hand reached out and pulled the glove on without my thinking about it. 





After I am done using the glove I remove it by resting the glove on a towel.  My slightly fisted hemiplegic hand traps the end of the glove while I pull my sound hand out.

Luck struck again when I realized the cuff could be used to hang the glove on a hook on the inside of the sink cabinet door.

I love avoiding medical catalogues that sell expensive equipment.

Time to Spend $32,500 on Stem Cell Therapy?

TeleHealth Medical Group is offering stem cell therapy to stroke survivors for $32,500.  So it is time to ask myself if I would do it.  A recent clinical study (1) raises four common sense concerns.

1.  Six of the 18 subjects experienced "serious treatment emergent adverse events."  While all events were resolved, it is disturbing that one-third of the people had problems after the surgery. Adverse treatment effects are real to me because I took hormone replacement therapy when it
was an exciting new way to handle menopause.  Unfortunately, hormone replacement therapy raises triclyceride levels which are fats in the blood that clog blood vessels.  My triclyceride levels went sky high which probably contributed to my stroke.  I have made my contribution to science so I will let others take the risk associated with stem cell therapy.

2.  The thrill of lifting an arm or leg one day after surgery is evident on the face of two subjects, but do isolated movements translate into functional gains?  The woman who beamed while lifting her arm over her head was pregnant at the time of the video above, but can she safely carry her child in her affected arm?  I have lost track of how many objects I have dropped while holding them next to my body as I walk, like dirty clothes, a book, and a pillow.  The problem with tests that evaluate movement outside of a meaningful context is that stroke survivors do not know what they can do when they have a cognitive challenge.  Manipulating an object while holding a squirmy, fussy baby is not the same as holding your arm in the air.  As an OT I was happy when clients made gains on motor tests.  A stroke showed me that passing items on a non-functional test is not good enough.

3.  After surgery there were significant gains in movement on the Fugl-Meyer Motor total score, but the majority of those gains happened in the first two months (mean increase for the group = 11.4 points).  Very small gains were made over the next ten months (mean additional increase = 1.4 points).  Are researchers telling subjects that stem cell therapy creates a small window where they have to do intensive rehab to retrain the brain?  Is Dr. Steinberg telling his clients that surgery is only the first step in recovery?

4.  $32,500 is a lot of money that I need to stay in my home.  I am willing to bet that TeleHealth Medical Group does not offer a guarantee that stroke survivors will see meaningful results.

1.  Steinberg G, Kondziolka D, Weschler L, et al.  Clinical outcomes of transplanted modified  
     bone marrow-derived mesenchymal stem cells in stroke: A phase 1/2a study. Stroke. 2016;47
     (7):1817-1824.

Safety Precautions Rocket Me to Independence

Precautions that facilities use to keep people safe propelled me to independence.  In the rehab hospital I made the mistake of wheeling myself out to the patio when I was done with therapy for the day. The aide who was sent to find me said I could not sit outside alone.  When I pointed to people who were sitting alone she whirled my wheelchair around and took me back to my room.  The last time I was dragged inside I was probably three years old.  A psychologist brokered a compromise.  I could sit outside if I came back upstairs and wrote down where I was going on a clipboard. The psychologist said the staff were afraid I would wander off if they let me go outside. Did the aides tell anyone I had been reliably transporting myself to and from therapy for days? 

Safety precautions are good.  The problem is staff who rigidly apply precautions to everyone. 
Did anyone read my chart to learn I had a stroke in the brainstem instead of the brain?  I was treated like my roommate who was so confused she tried to use the TV remote as a telephone.  The staff attached a sensor to me at night to keep me from getting out of bed.  Every time I rolled onto my side I triggered a very loud alarm and had to wait for an aide to come shut it off.  When I finally complained a nurse said they would stop using the sensor if I signed a release form saying they were not liable if I fell out of bed.  How long they would have used it if I had not objected? 

When I toured an assisted living facility I was upset again by procedures designed to keep people safe.   While the director gave me a tour she said 3 or 4 times that "elderly people prefer to have a nurse give them their medication."   If the assisted living staff decided it would be safer if the nurse dispensed my pills, my day would revolve around visits to the nurse because I take pills four times a day.  I saw the nurse handing out pills in a snack area where people who did not want to go to breakfast where waiting.   I am not really living in an apartment if the nurse can open my door with a master key to give me my pills when I decide to sleep in.

Being treated like a senile 95 year old turned out to be a blessing in disguise.  I am not sad that I use a cane and leg brace and print checks with my non-dominant sound hand.  I am grateful that compensatory strategies make me independent enough to live in my own home.

Saved by Sheer Dumb Luck

One problem I worried about repeatedly before my knee surgery was stress incontinence.  Coughing or sneezing sometimes produces a small urinary leak that turns into a flood after about 60 seconds.  While waiting for my surgery date I learned sudden knee pain also triggered stress incontinence.  This set off alarm bells in my head.  I regularly get up in the middle of the night to
go to the bathroom and was worried about losing bladder control if I felt sharp knee pain.  I was freaked out about trying to clean urine from my wall-to-wall carpet.

A bedside commode would solve this problem, but I live alone so who is going to empty it??

I cannot carry the bucket in my sound hand because I need that hand to hold a walking aid.  I was saved by serendipity. Before surgery I had placed a laundry basket so I could put dirty clothes in it as I came and went from the bathroom (see door on right side of photo).  During a practice session my friend Hanneke put some water in the bucket.  Feeling the liquid slosh around made the problem real and something made me look at the laundry basket. I knew the bottom of the laundry basket is so smooth that it slides over carpeting like it is on ice.  So I put the commode bucket inside the laundry basket and slid it to the toilet in my bathroom.

While carrying the empty bucket from the toilet to the shower, my sound hand held the bucket and I slid the heel** of my hemiplegic hand along the bathroom counter to keep my balance.  Hanneke suggested I put the bucket on my shower chair and use the shower hose to rinse it rather than risking a fall by leaning over to put the bucket under the water spout.  After letting the bucket drain while sitting upside down on the shower chair I took it back to the commode by putting the bucket in the laundry basket and sliding it.

Ironically I never needed the bedside commode.  Yet I felt triumphant because so many health professionals have told me to use a bedside commode.  I also felt humbled because I arrived at the solution through sheer dumb luck instead of my OT degree and clinical experience.

** heel of hand = palm on the little finger side of hand near the wrist

I Cannot Die Happy

I cannot die happy until doctors stop using the 29 year old Modified Rankin Scale to evaluate the effectiveness of treatment (1).  Research findings are highly suspect when researchers use a scale that is so general it captures only broad, sweeping changes after treatment (2).  Not giving credit for dozens of functional gains between Level 5 (bedridden and needing constant nursing care) and Level 3 (requiring some help but able to walk without assistance) ignores significant gains that affect the quality of life of stroke survivors.  I do not know if doctors keep using the outdated Rankin because they have not kept up with current research or they do not want to use a more sensitive outcome measure that requires training to administer and score.

0  No symptoms
1  No significant disability despite symptoms; able to carry out all usual duties and activities
2  Slight disability; unable to carry out all previous activities but able to look after own affairs   
    without assistance
3  Moderate disability; requiring some help but able to walk without assistance
4  Moderately severe disability; unable to walk without assistance and unable to attend to own
    bodily needs without assistance
5  Severe disability; bedridden, incontinent and requiring constant nursing care and attention
6  Dead

1.  Bonita R, Beaglehole R. Modification of the Rankin Scale: Recovery of motor function after    
     stroke. Stroke. 1988; 19(12):1497-1500.
2. Kuntz A, Ebinger M, Geisler F. et al. Functional outcomes of pre-hospital thrombolysis in a    
    mobile stroke treatment unit compared with conventional care.  Lancet. 2016;15(10):1035-1043.