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 will have another stroke.  Yet the pain and fatigue I feel at night 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 take small steps with the help of a quad cane.  Now 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 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.  

January 3, 2017

STILL Being Undressed Like a Baby

Babies are not asked if they want to be undressed - they are expected to submit when people start pulling off their clothing.  I cannot believe doctors have been undressing me like a baby since I had a stroke 12 years ago.  I recently saw a doctor who reached down and undid the top strap of my leg brace so he could look at my lower leg.  To hide my anger, I told him I have taken off my brace and shoe 10,000 times and can do it faster than he can.  Yelling at a surgeon who is going to cut me open to repair a torn meniscus in my knee is not wise.  

Here is the script I will try the next time a doctor starts undressing me.  "If you were a gynecologist you would not undress a female patient.  But I understand your dilemma.  I specialized in stroke rehab and cannot tell what stroke survivors can do while they are sitting.  I would ask "Do you need help with.........."  (Dean, Mark -  have doctors tried to undress since you had a stroke?)

If the doctor asks me if I need help I will say "I can do it but thank you for offering."

December 23, 2016

Walking in the Dark

My love of being outside at night began when my mother decided I was old enough to sit on the front porch on cool summer evenings.  I loved watching the street lights sparkling through leaves on the trees and being a part of quiet conversations.  So when my brother suggested we see the Christmas lights at the Brookfield Zoo I was eager to go.
 
I did well while it was still dusk (photo on left).  When the sun went down (photo below) I had trouble seeing where vertical was.  My stroke hit the pons which is the bridge to the cerebellum where balance is controlled.  My cerebellum gets so little information from my inner ears that I need visual input to tell if I am vertical.  
As it got darker I started guessing by watching the dark outlines of people walking in front of me.  This made me lurch from side to side to correct the poor guesses I made.  This rocking motion wore me out and brought my walking to a halt.  Walking for years down well lit streets did not prepare me for the balance challenge that real darkness creates.



I am going to restrict myself to night time activities that require sitting --- like watching people skate.  I got to see children smile when their parents kept them from falling.  I got to watch funny interactions among dating couples who had unequal skating skills.  I got to look at Chicago's beautiful Michigan Avenue.  I got to breathe the crisp night air and appreciate my warm coat, mittens, and scarf.  I got to enjoy a fun evening with my brother.  I learned the hard way that walking requires problem solving as well as mobility.

December 16, 2016

Organizing My Purse is a Vital Shopping Strategy

Jupiter, Mars, Venus, and Mercury line up every 50 to 100 years.  This rare celestial event will happen before I go digging through my purse one-handed.  Organizing my purse eliminates frustration when I go shopping.  Every woman organizes her purse differently so this is not a
how-to post.  The examples are intended to help stroke survivors realize that a purse does not have to be a buzz kill.  Holiday shopping is supposed to be FUN.

My car key has its own compartment.  The green wrist coil makes it easy to retrieve quickly.  My house key is attached to a straight flexible coil that hooks on my purse.  I pull on this coil to make my house key slip out of its pocket.  I do not want to be an easy target because I am digging through my purse looking for a key.  

I can handle credit cards quickly because I keep them in a zippered compartment that holds ONLY a credit card, driver's license, ATM card, and library card.  While sitting in my car I get out the card I need and place it vertically so it stands out from the other cards that are horizontal.  Cards go back in this zippered compartment in a flash.  Less frequently used cards like my health insurance card are in another compartment.  I do not want to hear the people behind me in line moan because I am struggling with my credit cards.

December 4, 2016

Keeping My Christmas Spirit

This is a photo of the artificial Christmas tree I have put up every year since my stroke.  After I fell on my patio last October I looked for ways to reduce my risk for falling.  Denial finally faded so I could allow myself to picture what would have happened if I had broken my hip. 

I had already made myself safer by keeping furniture sliders under the lounge chair next to this window so I can move it out of my way.  This allowed me to place a folding chair next to the tree so I could sit down when decorating the bottom of the tree.  However, decorating this six foot tree is tiring.  I know fatigue is one of my triggers for falling so I ordered a small table top tree.




I am happy  the figures of the magi and shepherd visiting the Christ child create a Christmas tableau in front of the tree.  I made these figures years ago when my hobby was needlecraft.  I also love the tiny Christmas tree balls.  I am always amazed by how happy small things make me.

I have held onto the decorations for my big tree so I still have options if I change my mind - probably denial still at work.

November 29, 2016

Why Should People Care What I Do?

People need to know why they should care about what I do.  So I do not start by talking about how to put on a bra with one hand.  First I write about clothes that do not fit because at my age my breasts are closer to my waist than I ever thought possible.  I write about how I would feel about saying "I'd love to come to dinner if you hook my bra when I get there."  I live alone so donning a bra enhances my social life.  Describing how a problem affects my life reveals what motivates me.

Having a stroke taught me why therapists and clients have a different point of view.  Therapists must write goals for Activities of Daily Living (ADLs) because this is how they get insurance companies to pay for our care.  They must also think about deficits because how they treat one deficit, like muscle weakness, is different from how they treat another deficit, like visual neglect.  As a stroke survivor, improving dressing skills and grip strength are methods not goals.  

Therapists need to link functional goals to personal anchors.  An anchor is anything people want so much that they are willing to work hard to get it and keep it.  For example, "don pants so you can sit on the patio and feel the sun on your face" links a mundane ADL to a valued activity for a client who has been kept inside for three months.  Clients should tell OTs what they really want and stop worrying it may sound trivial to an able-bodied person who can take things for granted.  For me OT's motto of Living Life to Its Fullest means turning "I should" into "I want to."