December 16, 2014

A Peaceful Christmas by Design

The holidays can be both joyful and exhausting.  I prevent the fatigue that drains my Christmas spirit by simplifying how I decorate.  Smart choices make it less tiring to put up, take down, and pack away Christmas decorations.  I put fewer ornaments on the tree and no longer add tinsel.  The sparse look took some getting used to.  However, feeling happy when I turn on the tree lights and play Christmas music is wonderful.  I no longer think "I will not decorate next year."    
To see how I prevent falls when I decorate the tree click here.  Falls also do not make a peaceful Christmas.

December 4, 2014

Constraint Therapy is Good and Bad

When a new graduate told a blogger that stroke recovery happens in the first two years I decided to write about constraint therapy.  It was designed by a psychologist named Edward Taub who did not assume recovery after a stroke is time limited.  Briefly, constraint therapy means putting a mitt on the sound hand during 2 hours of therapy for the hemiplegic hand PLUS leaving the mitt on the sound hand for 3 to 6 hours each day.  This forces the hemiplegic hand to work.  Since 1993 many constraint therapy studies have found clients can recover hand function for years after a stroke.  

Constraint therapy is good because it challenged long held beliefs about stroke recovery.
Constraint therapy is bad because it was designed by a man who grew up in a culture where men
can expect women to take care of them.  It would be nice if every husband would go grocery shopping, cook, and do laundry while their wives constrain their sound hand every day. 

Current research offers an alternative.  Hayner found guiding both hands to work while making lunch, eating, and cleaning up helped stroke survivors improve as much as subjects whose hand was constrained during the same activity (1).  Hayner concluded the duration of forced hand use is what matters.  Sterr reported a similar finding (2).  Stroke survivors who were helped to use their hemiplegic hand for 90 or 180 minutes improved as much as subjects who received constraint therapy for the same amount of time.  

How can stroke survivors force this much hand use?  I do exercises with a spring-loaded splint called SaeboFlex that helps me open my hand 100 times.  Now my hemiplegic hand can open to hold over 100 objects while my sound hand manipulates those objects.  Brief hand use adds up.  In 11 years my hemiplegic hand has opened to hold a tube of toothpaste 16,060 times so my sound hand can take the cap off and put the cap back on after I put toothpaste on my toothbrush. Bottom Line: More than one type of forced use can improve hand function years after a stroke.  Rehab professionals and stroke survivors need to let go of old myths.

P.S. The 1st time I saw a video of constraint therapy I was appalled by the sloppy movement of the hemiplegic arm and hand.  After I discovered the flexion synergy can be good I changed my mind.

1. Hayner K, Gibson G, Giles G. Comparison of constraint-induced therapy and bilateral treatment
    of equal intensity in people with chronic upper-extremity dysfunction after cardiovascular    
    accident.  American Journal of Occupational Therapy. 2010;64(4):528-539.
2.  Sterr A, Oneill D, Dean P, Herron K.  CI therapy is beneficial to patients with chronic low-
     functioning hemiparesis after stroke. Front. Neurol. 2014;5:

November 26, 2014

Reminded Again to Put Memory Aids in My Face

Lately I have been forgetting to do tasks.  These errors helped me relearn the value of putting memory aids in my face
I see my calendar with plans for the days as soon as I sit down at the table to eat breakfast (see photo).  Before my stroke this morning review was enough to help me remember things I wanted to do later in the day.

Error #1.  The To-Do list for the day goes right out of my head.
Solution # 1.  Immediately after breakfast I move my calendar and the yellow To-Do list from the kitchen table to the couch where I sit everyday. To provide an extra cue I put the TV remote on top of these memory aids.

Error # 2.  I kept forgetting to check my new shoes to see if the tongue is sewn on correctly.  The tongue needs to be long enough so the top row of laces will not slip off the leather and dig into my ankle (see arrow).  Solution #2.  I put the new shoe on my couch where I sit to read and do crossword puzzles. 

Error #3:  I keep forgetting to get up during TV commercials to do tasks like load the dish washer.  Solution #3: After I select the TV show I want I immediately place the TV remote next to a task I want to remember to do.  

Bottom Line: Using the environment as a memory aid may make stroke survivors happy.  Don't able-bodied people place objects they cannot afford to forget near the front door at night?  I have a place where I eventually sit down every day so why not exploit it?

November 17, 2014

Seven Strategies Keep Volunteers Coming Back

If I live long enough I may need to go to a nursing home.  Nursing home residents who constantly complain or who are hostile find themselves medicated so they are less "anxious."  I do not want the aggravation of seeing my favorite sweater on another resident or being told "we do not do it that way here."  Treating my volunteers with kindness makes it more likely they will continue to help so I can stay in my home longer.  I use 7 strategies to keep my volunteers from burning out (11 years and counting).

1. Prioritize.  I cut down on the number of requests by identifying need versus want.  I need someone to get on a ladder to change the batteries in my smoke detectors.  These detectors are connected to my electrical system that maintains an ear-splitting screech when the battery dies.

2. Build trust.  People do not need special rehab training to know when they are being taken advantage of.  When I ask for help I let my volunteers know I always do everything I can before I contact them.  For example, when I asked Peggy to tape a bag shut so I could return a coat, I explained I had affixed the return label but did not trust my good hand to tape the end of the bag securely.  People feel good about helping when they know they are really needed.  This strategy builds trust.

3. My husband would groan rule.  I cannot ask people to do things that would make a husband groan.  I cannot ask someone to buy a live tree, transport it, drag it into my house, use an axe to trim the base so the tree fits in the stand, and tighten and loosen the tree stand to reposition the tree until it is straight.  After having live trees for my whole life I bought an artificial one.  John takes it out of the box and snaps the 4 pieces together.  This rule helps me identify which tasks I need to pay a handyman to do (e.g. clean out my gutters). 

4. Let them choose WHAT to volunteer for.  I e-mail a request and let people choose things they want to do. This makes my request less of a burden.  Peggy who sews repaired the sleeve on my raincoat.  Barbara who is a computer technician volunteered to help me set up the Bluetooth system in my new car.  Parts of a large task a volunteer hates will not get done, but letting people choose what to do means I do not risk rejection because I have asked the wrong person.

5. Let them choose WHEN to volunteer.  After they volunteer I ask them when would be a good time for them.  Everyone has busy lives so it is less of a burden when I fit into their schedule.

6. Make a list and stick to it.  Before someone comes I make a list of the things I need done so my volunteer knows when he or she is done.  I stick to the list instead of looking around and saying "there is one more thing I need you to do."  This list also reminds me to get the materials my volunteer needs.  Before John comes to replace the batteries in my smoke detectors I buy 9-volt batteries.

7. 80% rule.  The 80% rule means some things can be mostly correct rather than perfect.  After my stroke I gave myself permission to not make everything perfect.  For example, I do not make multiple trips around my bed so the bedspread is perfectly straight.  The seam of my bedspread is supposed to be where the edge of the mattress is (see the black line).  I think it is only fair to extend the 80% rule to my volunteers. Nobody wants to hear they did not do something the way I used to do it.

November 6, 2014

Addendum - Walking in Snow with a Cane

Bottom Line: I am not ready to go to an assisted living facility were the center's van will take me to Wal-Mart once a week.

The photo on the left shows the spikey cane thing that JoAnn mentioned in her comment about my previous post on snow boots.  It is a Briggs Ice Cane/Crutch Attachment.  I bought it at a medical supply store near my home.  The advantage of buying it in a store instead of on-line is the saleswoman got out a screwdriver and fastened the device to my cane.  It stays out of my way in the up position until I snap it in place (photo below). 
I place the cane in my hemiplegic (paralyzed) hand which holds the cane still while my sound hand pushes the device down until it snaps into position.  The device makes my cane slightly heavier which slows me down.  I use another cane during warm weather rather than take this device off and try to get it back in the same place each winter.

Warning #1: I do NOT poke my cane through the snow.  I wait until after a neighbor I pay shovels my walkway and digs out my car.  I must be able to see the ground to tell if there is an icy patch that could make the spikes slip.  Checking the ground as I walk with spikes on the end of my cane slows me down, but it gets me to my car safely so I can drive. 
Warning # 2: People who plow store parking lots do not always do a good job of removing ice from handicapped parking spots.  Before I get out of my car I open the door and look at the ground to see if I want to leave the device down or push it up out of my way.

November 4, 2014

Will I Be Homebound This Winter?

Trenton, New Jersey used to have such mild winters that officials closed the schools when there was only 2 inches of snow on the ground.  The dip in the jet stream that brings cold Artic air south shows why Trenton was lucky (black dot = Trenton).  Last winter Trenton had six major snow storms in six weeks that were measured in feet instead of inches. Strong storms in the Artic now blow the jet stream farther south to include me.  So much pack ice has melted due to global warming that the air is saturated with water vapor which turns into snow on my street. 
I want people who have recently found my blog to see this post about one of my winter strategies.  Also see my next post on using a cane in the snow.
Since my stroke I am careful about venturing outside when it snows, but I am not trapped inside until spring comes either.  Warning #1: I never walk through snow covering the sidewalk or street because it is a fall hazard.  Once streets, sidewalks, and access to my car are clear I wear boots over my shoes to protect them from the slush.  Boots I tried on at a shoe store did not fit over my leg brace.  My leg brace will not let me point my toes which is a pre-requisite for donning boots.  On-line I found the Neos overshoe with a Velvro opening that goes all the way down to my toes.  The Villager model is lightweight which is perfect for me.

A video at shows how to don this boot.  Warning #2: I do not put the boots on while standing as the video shows because I do not have good standing balance.  I don my boots safely while sitting.  A trick the video does not show is to make the ankle straps as long as I can before I put on the boots.  After I snap the straps closed I pull on the ends of the straps to make them tight.  Warning #3: The first set of boots I ordered were too big so they flopped around when I walked.  Bottom Line: I get good traction from the treads and do not arrive with soggy shoes.  I walk more slowly with boots on, but that beats not being able to keep appointments like a visit to the doctor.

October 25, 2014

Being Undressed Like a Baby

Recently I snapped at a dear friend who has been very good to me.  When she saw me preparing to retie a shoelace she offered to help.  When I said I could do it she persisted in offering to help. 
I react negatively when someone offers to help with shoe tying because every physician I have seen since my stroke 11 years ago reaches down to untie my shoelace during a physical exam.  They do this quickly without giving any advance warning because they know it was not appropriate for a male doctor to undress a female patient.  This is humiliating.  I do not know how old I was when I decided my clothing is a part of my personal space, but it was a long time ago.  I stopped doctors by hiding the free end of the lace (see arrow).  Now when I see a physician staring at the floor I know he or she is trying to figure out how to untie my shoelace.

I have yet to convince strangers and friends they cannot tie my shoes for me.  Even telling my friend I can tie my shoelace faster one-handed than she can tie her lace with two hands was not a deterrent.  My friend replied "I could tie your shoe at least once so you will not have to."  My next strategy to handle this interaction more gracefully is to say "Can you tie a shoelace that has only one end free?"      See the photo on right.  If this stops the angel from trying to help me I will say "Thank you so much for offering." 
Actually I tie only a half-slipknot shown in the photo on the right.  Even though this knot will hold all day long I do not like the way it looks.
I tuck the free end in to form a mock bow shown in the top right photo.

October 15, 2014

Mobility = Physical Recovery + Problem Solving

A study found that impaired attention and visual-spatial deficits 3 months after a stroke was significantly associated with a poor quality of life 12 months after a stroke (1).  Studying what seems like an obvious connection may seem wasteful if you do not know some therapists ignore cognition.  They focus on concrete issues like passive range of motion and strength and assume clients will know what to do with their physical gains when they go home.

Without cognitive skills I would not have the luxury of getting up in the morning whenever I feel like it, fixing what I want for breakfast, and sitting at the table after breakfast reading the newspaper. I used to drive 100 miles round trip to work so lounging after breakfast while other people are doing battle in rush hour traffic never gets old.

My recent post begging someone to teach us to turn while doing a task is a perfect example of what I am talking about.  Making multiple turns while concentrating on the steps of preparing breakfast requires constant attention and visual-spatial awareness.  I had to learn to pay attention to what objects are doing instead of concentrating on what my hands and feet are doing.  Squeezing Theraputty and walking in the PT gym did not make this possible.  Therapists who have a simplistic view of recovery need to incorporate cognition into their clinical practice.  Therapists and stroke survivors need to remember that mobility = physical recovery + problem solving. 

1. Cummings TB, Brodtmann A, Darby D, Berhardt J.  The importance of cognition to quality of life
    after stroke. J Psychosom Res, 2014;15: ??

October 4, 2014

Fitting Into Cracks Can Be Painful

I learned everyone has deficits when I took a course to become certified to administer tests for Sensory Integration.  My lab partner was in graduate school, but she had to look in the answer book to grade a visual test designed for children.  This made me realize that able-bodied people have so many assets they can compensate for their weaknesses without being aware of it.

A stroke puts deficits in my face.  One example is volunteering to be the Chair of Receiving at my church's Spring Sale.  I can purchase and organize supplies such as price stickers and tape, but I cannot carry them from the office up to the 1st floor when the Spring Sale begins.  I can give my Receiving crew instructions about what to do when donations arrive, but I cannot help transport the donations.  I tried carrying donations to rooms on the 1st floor, but ended up with back spasms because walking repeatedly without a cane makes me lurch side-to-side.  Not being able to carry donations to rooms downstairs is a slap in the face.  I used to be a therapist who lifted paralyzed people out of wheelchairs and now I cannot trust my hemiplegic arm to hold onto objects when I walk up or down stairs.  Asking people to do this for me is a repeated reminder that I am disabled -- a fact I can put out of my mind when I use a cart to transport objects around my one-story house.

Volunteering to help the Citizens Climate Lobby (CCL) is equally convoluted.  I have had six letters about climate change published in my local paper.  I love the challenge of writing 200 word letters. It is close as I will ever get to writing poetry where every word counts.  But I am disappointed that I cannot participate in rallies because I cannot walk safely in crowds that do not sit down. 

Finding things I can and cannot do is a trial-and-error process after I volunteer.  Sometimes it is hard for me to remember to be grateful that there are parts of a job I can do.  I am still learning how to explain this problem to others without sounding like I am whining.  Feeling useful takes a lot more work these days..

September 25, 2014

Guest Post on Swallowing Difficulties

      Research suggests that as many as 65% of stroke victims will suffer with swallowing difficulties on their road to recovery (see here). It can be quite a serious problem that requires a great deal of effort to overcome so how do stroke victims and their carers manage the problem of not being able to swallow food or medicines? The medical name for this condition is dysphagia. 
      Because swallowing is difficult, and in many instances painful too, it can be common to see patients lose their appetite. This is especially true of those who are bedridden and therefore get very little physical activity. If the patient can’t feed themselves and doesn’t want to eat it can be quite the challenge getting them to take on food. The recovery process is going to be that much longer if they don’t take on the much needed sustenance to keep their strength up in order to try and get back to better health.
      One of the best ways in which to combat the problem of a difficulty or reluctance to eat, is to feed the patient with pureed, minced or finely ground foods. Sometimes carers may buy ready prepared pureed food, much like baby food, although it is fairly straightforward to simply prepare your own using regular ingredients and a food processor. Whilst most meals can be reduced down into a puree, care must be taken to only mix together complementary ingredients. For example, emptying a whole plate of meat and vegetables into a blender might seem a simple way to serve up a standard meal but the contrasting flavours and textures can end up with a very unappetising and odd tasting brown mush. A far better technique is to puree ingredients separately, unless they complement one another. For example, you could easily blend carrots and rutabaga together to make a healthy orange mash, then separately grind some chicken or beef in a mincer.
      Besides food, dysphagia also presents a problem when it comes to administering medicine and it can be common to see stroke victims struggle with tablets and capsules. One method to combat this is to try and administer tablets within yogurt or a thick sauce, to help it slip down the throat. Stoke victims may not have the coordination to suspend the pill in the fast moving water so the pill can be swallowed. 
      An alternative to trying to take medicines hidden in thick liquids has been developed by medical associations and pharmaceutical companies who have come up with a range of liquid medicines to take the place of various medicines which would normally be prescribed in tablet form. Where in the past sufferers of dysphagia might have crushed up pills, which is dangerous and seriously inadvisable, there is now a greater availability of traditional medicines in a safe syrup format that mean there is no need to worry about administering the medication you or your patient needs. However, the number of medicines available in this format is still limited and it can be frustrating for sufferers to learn that their particular medicine doesn’t have a liquid alternative.
      There have been cases of patients remaining on feeding tubes indefinitely after having suffered a stroke and even in the most optimistic of cases it can take years of specialist therapy in order to return to a more normal routine of being able to swallow. However, there are cases of patients overcoming dysphagia and in such instances pureed food and liquid medicines can be seen as an interim solution to aid stroke victims on their road to recovery, giving hope to the sufferers that it doesn’t have to always be this way.

Jeff Nevil is a freelance writer with an interest in the healthcare sector.  He writes for a variety of online publications on the topics that matter to him including business advice, technology and pharmaceuticals.  You can read more on his personal blog at