March 22, 2017

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

March 13, 2017

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.

March 3, 2017

Thanks to a Small Army of Volunteers

Surviving arthroscopic knee surgery required the help of a small army of volunteers.  Listed in chronological order, here is what each person did to propel me towards independence.  There were so many problems I did not anticipate that I am glad no one had to help with every problem after he or she volunteered to help with one issue.  Spreading the workload is my 8th strategy for preventing volunteer burnout.

Jean - A stroke impaired my balance so I asked for Codeine instead of a stronger opiate.  While the nerve block was still in my body the Codeine worked great.  When I woke the morning after surgery I was in agony.  For me, a 10 on a pain scale is having my diaphragm go into spasms so I cannot take a breath to scream.  That morning my knee pain was a 9.  I called my surgeon who sent an electronic prescription to my pharmacy, but I was not able to pick it up.  I texted Jean who picked up the Vicodin and brought it to my house.

Barabara S - The Vicodin made me horribly nauseous.  If you have ever been seriously seasick or had bad morning sickness while you were pregnant you know that relentless nausea steals your will to live.  "I want to die" is not a metaphor when you are this sick to your stomach.  I texted Barbara who brought me gingerale.  She also brought me Band Aid brand Tough Strips because the cheap bandaids I was using to cover the surgical holes would not stick to my skin.  She took two letters to the post office so I could pay two bills that arrived after my surgery.  Before Barbara left she set up my garbage can.

Lauren - I was afraid to push my garbage can to the curb because garbage day came before I had walked outside.  With the garbage can placed next to my front porch I was able to throw bags of garbage over the railing.  When my garbage was ready I texted Lauren to let her know to cross the street to my house.  Stinking garbage on my patio would attract animals that live in the woods next to my house - not good.  

Janet - She called me to see how I was doing and made me laugh so hard that I felt much better. 

Mark - My brother lives 850 miles away so it was wonderful to receive phone calls and texts that told me he was thinking about me.

Peggy and John - They brought cooked meals, groceries, and more bandaids.  Blood thinner makes my skin heal very slowly so I know I will need LOTS of bandaids to keep my leg brace from ripping open the holes the surgeon made.  Peggy told me how to order groceries on line until my walking endurance comes back.  

Barbara M -  She had a PT session on the afternoon of my post-op doctor visit, but it is a relief to know I have another person I can call if I need help getting to an appointment. 

Suzanne - She agreed to take me to the post-op meeting with my surgeon.   Knowing that it did not matter if I failed, I got the courage to walk a short distance down my street and drive my car around the block.  My car is modified so I drive with my sound left foot rather than the hemiplegic right leg which had surgery.  Stopping Vicodin after 2 days meant I was no longer worried about the warning "do not operate machinery while taking this drug."  I drove myself to the doctor visit, but really appreciate Suzanne's offer to drive me.  Reducing fear was a crucial part of my recovery.

Chatting and texting with these people was also an important part of my recovery.  It distracted me and helped me remember I am not alone.  Research has repeatedly shown that social connection is good medicine. 

February 24, 2017

It Isn't Failure - It's Rehearsal

Quotes like "If you're not prepared to be wrong, you'll never come up with something original"
(Ken Robinson) are not really helpful.  A more practical way to see failure as positive is to call it rehearsal.  When struggling with a new challenge it does not help to feel bad about the mistakes I make.  The purpose of my 1st attempt is to give me ideas about how to make my 2nd attempt awesome.  To be honest, I feel frustrated the 1st time I try something new and may even quit.  When I was able-bodied I was totally unaware of how often I used both hands or needed good balance so I am often unprepared for the challenges a stroke creates. Trying the task again the next day accomplishes two things.  My frustration has receded so I am calmer and the mistakes I made the 1st time give me ideas about what to do differently.

I still get frustrated when I try something new BUT I quickly hear myself say "it's a rehearsal."
This calms me down and reminds me that rehearsal has the potential to propel me to success
if I change the way I think about what is happening to me.

February 14, 2017

Counting Down to Knee Surgery

I alternated between sheer terror and wanting arthroscopic knee surgery.  At three in the morning I would wake up with a feeling of dread that I would have another stroke.  Yet the pain and fatigue I feel and the slow walking I have to do all day tells me surgery is necessary.  I used to be able to walk five steps from my bed to my en suite bathroom in my bare feet with no cane.  Now I have to take small steps with the help of a quad cane.  I have to be vigilant when I take the first two steps every time I stand up because this is when I feel a sharp pain that can make my knee collapse. 

A recent visit to a new neurologist made me feel better.  My vertebral artery which reaches the brain by snaking through neck bones is narrowed by stenosis.  This means my brain will not receive enough blood IF my blood pressure drops too low to push blood through this narrow blood vessel.  While doctors are typically alarmed by high blood pressure, this neurologist wants my blood pressure to remain normal.  For me normal is 130/75.  He also increased my aspirin from 81 to 325 mg to discourage blood clot formation.  I can take this aspirin right up to the day before my surgery.

February 7, 2017

Opening Cans With One Hand

I do not use lots of canned food because most are heavily salted.  However, I love to make homemade spaghetti sauce and chili which require some canned food.  I make a big batch and freeze it in individual food containers that can be heated in the microwave.  Since I cannot make food taste better with butter or cream sauces I add lots of veggies to these one pot recipes.

I use an electric can opener made by Krups that uncrimps the metal rather than cutting it.  This leaves a smooth edge so the top can be put back on if you want to use the contents later.  The photo on the right shows how a right-handed person holds it while the photo below shows how my left hand holds it so I can see what I am doing.

Short cans do not have the clearance I need so I put them on a food storage container.  Since I do not open cans that often I have trouble finding the exact angle the opener requires.  I have to try two to three times before my wrist remembers the correct angle.          I know when I get it right because the noise changes from a high pitched whine to a low pitched growl.  The only time this can opener has let me down is when a hurricane has cut my electricity.

February 2, 2017

Research on Therapy Can Be Misleading

Researchers found stroke survivors regained hand function after Wii therapy (1).  They targeted clients who already had some finger movement before treatment began.  I know this for two reasons.  First, subjects must have small finger movements to be eligible for the modified constraint therapy given to the control group.  Second, the outcome measure was the Wolf Motor Function Test which is loaded with high level test items (e.g. turn key in lock, pick up a paper clip).  Only stroke survivors with significant hand recovery can perform test items on the Wolf Test.

An efficacy study of the Smart Glove also used subjects who were high functioning enough to pass items on the Purdue Pegboard Test, the Jebsen-Taylor Test (e.g. write, scoop up beans with a spoon), and the Fugle-Meyer Test, distal items (e.g. pick up Coke can and piece of paper) (2). 

Treatment may be appropriate only for a particular sub-set of clients so you should always read the description of the sample and outcome measures used in the study.  Researchers of therapy approaches may have used a sample of high functioning subjects for their proof of concept study.  This makes the treatment look good, but can create false hope.

1) Trinh T, Scheuer S, Thompson-Butel A, Shiner C, McNulty P. Cardiovascular fitness is     
    improved post-stroke with upper-limb Wii-based movement therapy but not dose-matched  
    constraint therapy. Top Stroke Rehabil. 2016; June 23(3):206-16.
2) Shin J, Kim M, Lee J, et al. Effects of virtual reality-based rehabilitation on distal upper    
    extremity function and health-related quality of life: a single-blinded, randomized controlled     
    trial. jrneuroengrehab.biomedcentral.com/articles/10.1186/s12984-016-0125-x. Accessed   
    January 31, 2017.

January 31, 2017

Community Ambulation Falls Thru the Cracks

Stroke survivors have to figure out how to walk safely in the community.  Walking in PT gyms and on deserted sidewalks did not prepare me for walking in community settings.  I had to teach myself how to maneuver around carts and people in a grocery store, squeeze past closely placed chairs and tables in a restaurant, and deal with children in a shopping mall who do not look where they are going.  PTs do not know that walking requires divided attention because they walk clients in wide empty spaces that provide no cognitive challenges.  Equally unfortunate, OTs who are trained to assess and treat cognitive issues do not assess community ambulation because walking is PTs domain.  So community ambulation falls through the cracks. 

A recent study simulated the unpredictability of walking in the community.  Inness learned what stroke survivors did when they experienced an unexpected balance challenge (1).  Subjects were asked to stand with their feet on two force plates.  At an unexpected time the force plates were tipped forward and subjects had to recover their balance by stepping forward onto a third force plate.  Traditional clinical tests like the Berg Balance Test did not have a significant correlation with the unexpected stepping test.  The Berg Test does not measure real world balance because it allows clients to concentrate fiercely on their own body and decide when they want to initiate movement.

Bottom Line: Being afraid to walk in crowded environments is a major barrier to participating in valued community activities.  Limiting gait training to walking in the home contributes to social isolation and depression. 

1.  Inness E, Mansfield A, Lakhani B, Bayley M, McIlroy W. Impaired reactive stepping among
     patients ready for discharge from inpatient stroke rehabilitation.
     http://ptjournal.apta.org/content/early/2014/08/06/ptj.20130603.abstract.

January 26, 2017

We All Can Help Emergency Responders

A presentation by an emergency responder taught me they need our help.  He recommended we keep a list of medications and contact numbers stuck to the refrigerator door with a magnet. 
I did this and added a copy of my living will.  I hope the gaudy turtle magnet catches their eye.




When I am out I have a special compartment in my purse that holds emergency information.

# 1 (green paper) is a list of phone numbers I need.
# 2 is a copy of my living will that includes contact
information for my brother who has the power of attorney for my health care.
# 3 is a list of  my medications.  My mother was wrong.  Contact information, a living will, and a list of medications are more important than having clean underwear when visiting an emergency room.
# 4 is a gel pen that is one of the writing aids I cannot live without.  I use this pen to sign credit card slips and write notes on a small index card I keep in this compartment. 

January 14, 2017

Snow At My Door

Sometimes I can wait 1 or 2 days for the snow to melt when my area gets a warm spell after it snows.  This snow storm was followed by a 5 day cold spell.  Adding 2 more days for the snow to melt means I could have been home bound for a week.  Fortunately, this snow storm dropped only 3 inches of light, fluffy snow.



I handle this much snow with a broom and child-sized shovel (red handle) that I keep outside my front door.  With my sound hand and armpit, I sweep snow off my steps, push the snow off my walkway, and make a path to the door of my car.  I get rid of the accumulating pile of snow by using the shovel to flick the snow onto my lawn or make a pile in the street.  My neighbor does not drive so I do not feel guilty about making a low pile of snow in her empty parking space.

To clean snow off my car, I wear an apron so I can lean against the car without getting my coat dirty.  I hang the apron around my neck but do not tie the strings behind me.  I shove the snow off my car with the tool designed to clean wind shields.  It is easy for me to control because it is light and the handle is short.  It has a soft side that will not scratch the paint on my car and a blade side to clean the windshield.  Pushing snow off my car dumps snow on my feet so I wear snow boots (see previous post) that I can don one-handed.  When I get snow on my hand I am grateful for the super warm mittens I used when I was skiing.

I keep a container of ice melting crystals next to my front door.  This large container has a spout designed for sprinkling, but the container is too heavy for me to control.  I use a funnel to pour a manageable amount in a small container.  I place the small container and funnel in my bathroom sink to make the transfer.  Compensation does not make me sad - it keeps me in my home.