November 26, 2016

Thanksgivng is My Favorite Holiday

My balance was so poor after my stroke that it took me three weeks to stop wobbling while I pulled my pants up after toileting.  Stroke survivors who need 24 hour standby assistance for toileting end up in nursing homes.  To me, this was not a life worth living.  I am grateful my vision of what would happen to me was wrong.  Thanksgiving is still my favorite holiday.

I was invited to spend a wonderful afternoon with good friends and good food on Thanksgiving day.
Thanksgiving is my favorite holiday because children do not become hyperactive balls of energy because there will be presents (Christmas) or lots of candy (Easter, Halloween).  Thanksgiving is about sharing a huge meal with family and friends, being grateful for our blessings, and enjoying family traditions like watching a football game, taking a nap with a full stomach, or going for a walk when the weather is pleasant in November.

November 18, 2016

Caregivers Readiness

Forty caregivers of stroke survivors reported they often felt abandoned and wished they had someone they could call with questions (1).  This may sound surprising unless you understand that staff at different agencies do not communicate with each other.  This means each round of therapists has to do initial evaluations of the client.  This does not leave much time for talking to the caregiver.  This lack of communication is a problem.  Lutz found that "during rehabilitation many
of these caregivers still hoped and expected that the stroke survivor would return to pre-stroke function (p. 8)."  When caregivers realize what they have to do, the primary focus on the client is already entrenched.  

Reading this article on caregiver readiness reminded me that I was clueless when I was an OT.
It took having a stroke to teach me that caregivers are pummeled by a quadruple whammy.  They have to: 1) do the chores they have always done, 2) take on their partner's role, 3) be a therapist, and 4) be a case manager. A wife may take out the garbage, take the car to have the oil changed, and change the batteries in the smoke detectors.  A husband may go grocery shopping, cook and do laundry.  When they are therapists, caregivers may help with self-care like bathing, set up and supervise home exercises, and deal with a stroke survivor's bad moods.  As a case manager, caregivers may have to schedule multiple doctor appointments, deal with insurance companies, and make multiple trips to the drug store to pick-up multiple drugs.  Many caregivers do this without professional psychological support or respite care.  Now I see caregivers as angels.  

(1).  Lutz B et al. Improving stroke caregiver readiness for transition from inpatient rehabilitation
        to home. The Gerontologist. 2016; Vol 00:No.00,1-10. doi10.1093/geront/gnw135.

November 8, 2016

I Cannot Use Salt to Make Food Tasty

I had a 2nd stroke two years after my 1st stroke so I got serious about lowering my blood pressure with a low salt diet.  Low salt food tastes terrible so I learned to jack up the flavor of food with aromatics like onions and garlic.  Peeling garlic is a challenge even for able-bodied people.  I use the smooth side of meat pounder to smash the garlic open so I can remove the peel with
my sound hand.  This means my days of creating beautiful, thinly sliced garlic are over.  

I chop garlic with a large kitchen knife.  Rocking the knife over the garlic creates a mix of small and medium size pieces.  I place a food scraper in my hemiplegic hand so my sound hand can scoop up and slide chopped food into a mixing bowl or pot.  But sometimes I want small uniform pieces of garlic that are evenly distributed in a dish.  I spice up turkey burgers by stirring crushed garlic into an egg before adding it to the raw meat so I will not bite into a big hunk of garlic.  However, a garlic crusher takes lots of hand strength to squeeze the two arms of the crusher together.

I rest the bottom arm of the garlic crusher on my kitchen cart and put the palm of my sound hand on the top arm.  Leaning on the top arm lets me press down with the strength of my whole arm.  I catch pieces of falling garlic by putting a piece of saran wrap** under the garlic crusher.  To get the garlic that is clinging to the crusher into a bowl or pan, I place the crusher in my hemiplegic hand so my sound hand can use a knife to scrape off the garlic. 

Cleaning a garlic crusher is easy if it has a plastic grid that pushes the remnants out of the holes. I hold one arm of the garlic crusher in my hemiplegic hand and stabilize the 2nd arm against my stomach. Then my sound hand can use the tip of the knife to dig out remnants so they fall on the saran wrap.  I fold the saran wrap and put it in the garbage.

** To see how I tear off a sheet of saran wrap with one hand
click on this post.

October 25, 2016

Horrified by No PT Untill 4 Months After a Stroke

I was horrified by a study that found 20% of people in England have health insurance that forces them to wait for 13 weeks before they can receive PT after a stroke (1).  I started thinking about what would have happened to me if I went home from the Intensive Care Unit (ICU) of the hospital.

Problem #1.  On my 1st day in the rehab hospital it took three people to help me walk.  One PT held onto the walking belt around my waist while a 2nd PT scooted along on a rolling stool so she could move my paralyzed leg.  A secretary walked behind me pushing a wheelchair so I could sit down if I started to fall.  This routine was done twice in the morning and twice in the afternoon.  What family has this kind of man-power, training, time, equipment, and space to provide this at home?  This intensive program prevented me from acquiring disuse atrophy - a condition where muscles become weak because they are not being used.  I left rehab walking with a cane.

Problem #2.  My home had only one bathroom on the 2nd floor.  If I had gone straight home from the ICU I would have had to stay on the 2nd floor until I could walk up and downstairs to get to the bathroom.  Many old homes do not have doors wide enough for a wheelchair which forces clients to go to the toilet on a bedside commode.  Being confined to the 2nd floor or having to use a bedside commode would have felt like being in jail.  Can you spell depression

Problem #3.  Four months of needing constant assistance can lead to learned helplessness.  Once the social contract between caregiver and stroke survivor is cemented, it can be difficult to change.  When PTs begin treatment 4 months later they may be challenged by "a new normal" where help is given even though progress in PT means help is no longer needed. 

Bottom Line.  Paralysis + disuse atrophy + depression + learned helplessness can sabotage what could have been a good outcome for a stroke survivor and his or her family. 


October 14, 2016

8 - no 9 - no 10 - Now 11 Things I Must Do to Drive Independently

This post illustrates that recovery after a stroke is a series of challenges that go on and on.

Regaining independence in driving took more than having an OT teach me how to drive with
one hand and foot.  If you cannot do tasks 1-8, you need stand-by assistance every time you drive.

Keys.  (1) Click on Getting out keys for my house and car to see why this is harder than it sounds.

Exiting.  (2) It takes multiple strategies to get out of my house without falling.  I begin by opening the door and placing my cane on the porch so my sound hand is free to close and lock the door.  I come back inside and check my balance before I take a step backwards over a one inch high strip (see arrows on right).  This fall hazard is weather stripping that keeps air from getting under the door.
Finally, I have to hold the screen door open while I close the front door.  The photo on the right shows a shallow ledge at the bottom of the screen door.  I have to keep the heel of my hemiplegic foot from getting stuck on that ledge as I step down onto my porch.  Initially I used my butt to hold the screen door open because it is a heavy wheelchair-width door.  But I dented the screen so now I push against the storm window which I keep down all year.  People who hold the front door open are not preparing stroke survivors for the day we need to walk out the door by ourselves.

Safety. (3) The seatbelt was always twisted when I used my left hand to push it across my chest.  I learned I have to make sure the seat belt is completely straight when I pull it out.  Right handed drivers have the unfair advantage of being able to pull the strap across their chest.

Starting the car.  (4) My left arm is my sound arm so I have to lean over to see the slot for the key to the right of the steering wheel.  I pull the key out through the steering wheel (see pink wrist band) because this does not require the precise placement that inserting the key demands.

Parking.  (5) Stores may have pull-in parking, but I have to parallel park on the street where I live.
I am glad my OT set up traffic cones and let me repeatedly practice parallel parking.
(6) The spinner knob I use to control the steering wheel is made of a plastic that gets hotter than a regular steering wheel.  I cannot drive if I burn my sound hand so I am glad I found sunshades that I can put up in 10 seconds with one hand to cover the windshield.

Winter Issues.  Before I leave my house in the winter I have to (7) zip my coat and (8) don boots.

- # 9-11 are intermittent tasks that are easier for people who want to help to fit into their schedule  -

Getting Gas.  (9) It is illegal for drivers in New Jersey and Washington state to pump their own gas.  In the other 48 states, drivers must be able to handle the gas pump.  This task begins with getting out a credit card (see photo #2) and opening the gas cap on your car.  I have driven in
15 states since my stroke so I know the procedures for using the gas pump vary considerably.
I make sure I get a pump that is in the shade so sun glare will not obscure the instructions that light up.  This task requires good balance while turning repeatedly

Car Maintenance.  (10) A dirty windshield obscures my vision, especially at night.  Cleaning the gunk that accumulates on the inside of the windshield is difficult one-handed.  A reacher called the Invisible Glass Cleaner allows me to clean all the way down to the dashboard.  It costs $15 but cleans much better than the Handy EZ Windshield Wiper. 

(11) Before a mechanic works on my car he shoves the car seat back because I have short legs.  Before I drive away I grab the steering wheel with my hemiplegic hand to pull the seat forward while my sound hand presses down on the release bar.  The photo shows a gross grasp, but it is a skill I need to be independent in car maintenance.

October 3, 2016

OT Reduces Hospital Re-admissions

The IMPACT Act was designed to improve healthcare by linking Medicare reimbursement to valuable outcomes.  Currently, value is crudely defined by outcomes that can be measured across multiple settings with many different medical conditions.  A basic outcome is the number of clients readmitted to the hospital within 30 days of discharge.  Medicare has begun to financially penalize hospitals with higher-than-average readmissions rates.  Hospital CEOs are very interested in finding out how to prevent these penalties.

Rogers and associates looked at what reduced hospital readmission in 7,174 people over 65 with pneumonia, heart failure, or a heart attack (1).  PT did not reduce readmissions for the three conditions.  An acute illness does not warrant a long hospital stay, but elderly people are often at greater risk because they more likely to have poor strength and endurance.  A short course of PT may not be enough to reverse physical deconditioning.  In addition, PTs are not trained to address the cognitive issues that some elderly clients have which makes it harder for them to follow medical instructions after they are discharged.

However, the study found that OT was associated with fewer readmissions in all three conditions.
OTs evaluate both physical and cognitive skills and can assess the match between a client's abilities, social resources, and physical environment at home.  OTs can recommend solutions when there is a mismatch between abilities and resources BEFORE the client goes home.  For example, there may be a need to train the caregiver or reduce fall hazards by installing grab rails.  The easiest way to quickly grasp an OT's ability to positively affect hospital readmission rates is to read a case study (2).

My Conclusions.
1.  These findings apply only to clients with pneumonia, heart failure, or a heart attack.
2.  Lowering costs is of value to hospitals but what about valued outcomes for the clients?
3.  This is a good start towards using value as a guideline for giving the healthcare system
     financial incentives to produce better results.

1. Rogers A, Bai G, Lavin R, Anderson G.  Higher hospital spending on occupational therapy is
    associated with lower readmission rates. Medical Care Research and Review. 2016;1-19.
2. Renda M, Lee S, Keglovits M, Somerville E. The role of occupational therapy in reducing
    hospital admissions. OT Practice. 2016:August: CE5-CE6.

September 27, 2016

Bathing Does Not Have to Be Exhausting

As an OT I had my clients practice a single ADL skill in isolation, but I never watched a client do a whole morning routine.  I did not know how tiring bathing, grooming, and dressing can be until I did all of them one after the other as a stroke survivor.  Self-care is not supposed to be so exhausting that all I can do is watch TV and become a zombie who cannot stop clicking the TV remote. 

Before my stroke I did not know I took daily access to copious amounts of warm water for granted. 
I want to be independent so I can close the shower curtain and take as much time as I want to enjoy the feeling of warm water cascading over my body while I sit on my shower chair.  I want to leave the shower feeling refreshed - not exhausted and frustrated.

Washing.  Using shower gel and a nylon poof means I do not have to struggle one-handed to soap up a washcloth or chase a bar of soap after I drop it.  I pour shower gel on the nylon poof and knead it a few times to get it soapy.  To wash my sound arm I need only a gross grasp to hold the nylon poof.  Instead of struggling to wring out a washcloth one-handed I hang the nylon poof on a suction hook and hose it down the way you rinse a car and then let it air dry.  I use shampoo suds to wash my face
OT helped me regain the ability to open my hemiplegic hand and use a gross grasp to hold the head of the shower hose close to my crotch.  This leaves my sound hand free to deal with the nooks and crannies that running water does not reach.  Even if my husband were still alive I would want to bathe this private part of my body myself.  It may look like a pathetic amount of hand function to an able-bodied person, but it keeps me from feeling embarrassed which is priceless.

Drying.  My towel rack is close enough to the shower that I can reach it while sitting on my shower chair.  I drape the towel over one shoulder to dry my arms and trunk.  After I get out of the shower I don a terrycloth bathrobe which dries my buttocks and thighs.  This means I do not have to twist around to dry these hard-to-reach places.  While standing I dry my crotch with the towel draped over my shoulder.  It is easier for my sound hand to manipulate the free end when it does not have to deal with the full weight of the towel.  Keeping the towel draped over my shoulder makes it easy to put the towel on the towel rack.  Letting my calves air dry while I brush my teeth means I do not have to huff and puff while holding up my leg to dry it.  In the summer when evaporation is not as effective, I air dry my calves while lying on the bed and listening to music.  I put a towel under my calves to keep my bedspread from getting wet.
P.S.  Also read about showering when I travel.

September 14, 2016

Some High Tech Designers Don't Get It

There is lots of news about how technology can help disabled people recover the use of their affected hand.  Here is what drives me crazy.  Watch this video of a high tech rehab device and DO MORE than look at the flashy movement on the screen and the client's happy face. 
Look at what the woman's hand is doing.

1.  Do media reports and journal articles explain that using technology to manipulate objects on a computer screen is only the beginning?  The goal is to have people use their hands to manipulate objects - not just touch objects so the computer will make objects blow up or move.  To be fair, the technology in the video helped a woman move her arm so she could bring her hand to the exact location the task required.  HOWEVER, photos show that using an expensive $$ robotic arm is not the only way to show clients they have some hand function even when they have weak shoulder and elbow muscles.  Instead of grasping objects resting on a table, clients can rest objects in their lap or stand to reduce how far weak shoulder and elbow muscles have to move the arm, which is remarkably heavy.

2.  Cherry picking high level clients to demonstrate technology is misleading.  I am suspicious when I see stroke survivors begin by using a gross grasp to hold a cylinder-shaped Wii controller and end up grasping a small object between the tips of their thumb and index finger.  Where are the videos of stroke survivors who have trouble opening their hand after they make a fist?  A meta-analysis of 44 studies done on 1362 subjects found that robot-assisted therapy improved only arm movement (1). High functioning clients benefit from the fun aspects of computer games, but I think clients who have less recovery need technology the most.

3.  Proof-of-concept videos are misleading when they have able-bodied people demonstrate the product.  Able-bodied people move at a lightening speed that many stroke survivors never regain.  Speed requires effortless control of every joint.  I can tell my hand to open or close, but I cannot simultaneously tell all the joints in my arm what to do.

The Bottom Line:   Promotional material for technology is not always honest about the ton of work that many clients must do to close the gap between what the computer is doing to objects and what clients want their hand to do.  Technology has to be a good match for what people need.

1. Veerbeck J, Langbroek-Amersfoort A, Wegen E, Meskers C, Kwakkei G. Effects of robot-
    assisted therapy for the upper limb after stroke.  Neurorehabilitation and Neural Repair. Sept
    5, 2016, doi,10.1177/545068316666957.

September 2, 2016

Health Care Organizations Are Not Being Fully Truthful About Zika

A stroke killed part of my brain so I find the Zika virus very disturbing.

Babies who have Zika do not just have small heads.  Their heads are wide at the jaw and narrow at the top because they do not have a normal cortex to push the skull into its familiar oval shape.  The cortex is the wrinkly outer layer of the brain that controls functions like reasoning, language, and movement.  Research published in Cell Stem Cell found that zika attacks stem cells that are responsible for building the cortex.  The PBS show Spillover showed X-rays of a baby's skull with empty spaces where brain matter should be.  So babies with Zika have skulls that are unusually small AND half hollow.  Research also found that these babies have unusually large sacks of fluid in the brain called ventricles.  Everyone has ventricles, but normal people do not have lots of fluid where brain matter should be.  No amount of therapy can fix a massive loss of brain matter.  Caring for babies who have minimal cognitive and motor function will be devastating for years to come.

Mosquitoes that carry the Zika virus have been found in Florida and other southern U.S states.  This makes travel bans and delaying pregnancy for a few months useless.  Even worse, the majority of people infected with Zika do not feel ill so they do not know they should be tested before trying to have a child.  Before Congress went home for summer break, a Zika funding bill was not passed because other political agendas were attached to the bill.  Our Senators need to stop playing politics.  Developing a vaccine is the only thing that can save us from a plague that will last for as long as mosquitos exist.

P.S. A recent study published in Cell Stem Cell found that Zika attacks the brain cells of adult mice.  Maybe the ideologs in Washington will do the right thing if they find out they could end up with brain damage.

August 25, 2016

How I Learned to Turn My Head While Walking

I was able to look straight forward while I was in rehab because my PT had me walk in wide uncluttered spaces.  When I went home I learned that if I turned my head while walking outdoors, I stumbled or drifted in the direction my head was turned.  But I want to turn my head to look at a store window or talk to the person walking next to me.

Being afraid to look around while walking made me hold my head still.  This made my neck stiff.
I conquered each problem with its own strategy.  1) Every morning I slowly and gently move my head in circles while sitting.  This loosens my neck muscles while eliminating the possibility that I will fall.  2) I forced myself to look in store windows when I walk.  I began by turning my head for one second.  As I repeatedly turned my head to look at window displays my brain began to process this movement without losing the ability to monitor if I was drifting to the side.  These two strategies have eliminated the icky feeling I used to get when I turned my head while walking.  I will use them until I die because they allow me to participate in fun activities - window shopping and socializing while walking without slamming into friends and family.

Mirelman and associates confirmed the relationship between mobility and cognition (1).  Older adults with a history of falls had significantly fewer falls six months after walking with virtual reality feedback that added a cognitive component.  While walking on a treadmill, experimental subjects could see their foot movements projected on a screen as they responded to simulated obstacles, distractors, and multiple pathways.  Control subjects who just walked on a treadmill for an equal amount of time did not experience a decrease in falls.  The awareness of and ability to respond to environmental challenges is an important part of being able to walk safely.

1.  Mirelman A, Rochester L, Maidan I, et al. Addition of a non-invasive virtual reality component to
     treadmill training to reduce fall risk in older adults (V-TIME): a randomized controlled trial.