Cheap Equipment That Prevents Spills

Stroke survivors can prevent messes when they cook by using cheap objects instead of buying expensive adaptive devices from a medical catalogue.  For example, my hemiplegic (paralyzed) hand cannot reach up and hold the handle of a pot to keep the pot still when I stir food or flip food with a spatula.  So I slide pots off the burner onto a heat-resistant fabric hot pad before I stir or flip food.  Friction has always kept the pot still.  Now I use a cheap silicon hot pod to hold things still (see below).

An even more delicious way to save money is to use the plastic lid from a peanut butter jar.  This lid catches spills when I measure spices or messy food like olive oil.  It is frustrating to stop to clean up a mess I just made on my counter top.  Using spices is a matter of life-and-death because I am on a low salt diet to help control my high blood pressure.  Low salt food tastes awful without lots of spices.  homeafterstroke.blogspot.com

I Am Really Angry

Strokes that affect blood vessels at the back of the brain are associated with significant diagnostic error (1).  This finding mirrors my stroke experience.  Sixteen years ago my brainstem stroke started when I repeated fell back on my bed while putting on eye make-up.  In the emergency room I was able to talk and sign my name so I was left alone and fell asleep.  When I woke up I called to find out if I could have something to eat because I did not have breakfast.  A staff member did a neuro check and looked concerned when I could not squeeze her hand with my right hand.            A neurologist was not on duty so it took a while before someone ordered brain scans.

Abedi's suggestion that hospitals should use artificial intelligence to improve diagnosis of these strokes (1) really makes me angry.  Facilities do not need to buy expensive computer programs to diagnose a stroke in posterior blood vessels.  Health care professionals need to forget the old F.A.S.T. warning signs and learn the new B.E.F.A.S.T.  The B. and E. are signs of a posterior stroke like a brainstem stroke caused by damage to the vertebral artery. 

B = Balance.  SUDDEN loss of balance/dizziness/coordination is not caused by an ear infection.  

E = Eyes.  SUDDEN difficulty seeing out of one or both eyes (e.g. blurred or double vision). 

F = Face.  Weakness of one side of the face that produces an uneven smile; facial numbness.

A = Arm.  Weakness of one arm (e.g. unable to raise both arms evenly).

S = Speech.  Slurred speech; trouble understanding speech, difficulty repeating simple phrases

T = Time lost = brain lost.  Call 911 immediately.  

homeafterastroke.blogspot.com

1.  Abedi A, et al. Using artificial intelligence for improving diagnosis in emergency departments: a practical framework. sagepub.com.  August 25, 2020. doi.org/10.1177/1756286420938962. 

Cheap Equipment That Reduces Frustration

A cheap seam ripper I bought at a sewing goods store got rid of a ton of frustration.  I open seals around the top of bottles by slipping the point of the seam ripper under the edge and ripping upwards or downwards.  I pull off the seal by grabbing the cut edge with my sound hand while I squeeze the bottle between my thighs.  Sometimes I grab the cut edge with my teeth as my sound hand holds the bottle.  No more trying to slice with the tip of a knife which shreds rather that cuts.  

I use the tip of the seam ripper to rip open the foil at the top of a pill bottle and dig out the cotton ball that fill half of the bottle.  Preventing decades of frustration is not a small thing - so much energy saved for better things. homeafterstroke.blogspot.com

Lasting Gains I Care About

Researchers found that clients do not use the skills they gain in rehab to engage in meaningful activities (1).  Therapists address basic Activities of Daily Living (ADLS), but getting dressed, walking to the couch, and watching TV is NOT my reward for the hard work I did in rehab.

Clients and therapists need to think about deeper needs that make the hard work worth it.  The Engagement in Meaningful Activities Survey asks clients what they care about without requiring therapists to explain what meaningful means.  The survey asks clients to rate how much a specific activity gives them pleasure, gives them a feeling of control, helps other people, expresses their values, etc.  This survey was used to improve participation in meaningful activities as part of a behavioral activation approach (1).

However, thinking about meaningful activities would have been difficult for me during in-patient rehab.  After my stroke I was distraught and depressed about what had happened to me.  I focused on concrete skills that would keep me out of a nursing home, like toileting independently.  Home health therapy also had to focus on concrete challenges, like how to get in my house and in my shower.  When I began out-patient therapy I was calmer and the thrill of relearning basic ADLs had faded.  I was ready to think about why I was still trying so hard to use my rehab gains.    homeafterstroke.blogspot.com

1.  Brick R , et al. A need to activate lasting engagement. American Journal of Occupational                   Therapy. 2020;74:7405347010.    

Lowering My Standards After Stroke

My stroke occured in the brainstem which is below the brain.  This means I do not have multiple cognitive and language deficits.  However, I do have some cognitive deficits.  For example, my impaired spelling affects three tasks I care about - writing this blog, writing Power Point presentations for OT conferences, and writing checks.  Sometimes it helps to say the word outloud.  If this does not work I check the spelling by saying the word to Siri on my iphone.              I appreciate Siri because she allows me to hide this deficit.   

Before my stroke I had superb spelling skills.  If I was not sure how to spell a word, I would write it.  When I looked at what I had written, I knew immediately if it was wrong and what I needed to do to fix it.  I did not know how proud I was of my ability to spell until I lost it.  homeafterstroke.blogspot.com

I Finally Got Young Adults to Listen

For years I struggled to get young adults who work as cashiers at grocery stores to listen to me.  They always try to fill each grocery bag as full as they can which creates a fall hazard for me.  Initially I asked them to not fill the bags full because I had a stroke.  After I saw a look of disgust on a few faces and still had to ask young cashiers to take some groceries out of a bag, I tried another approach.  Next I told cashiers not to fill my bags too full because I am old.  Middle-aged cashiers understand this concern and change they way they fill my bags.  Young cashiers never give any sign that they heard me say "I am old."  They comply with my request, but several looked irritated.  I got the impression that some of these young people think I am just trying to boss them around.

Recently I said "I have to get these bags up my front steps without falling."  Each time I have said this to young cashiers I have heard them say "Oh" and they begin to keep my bags light.  I did not know learning to get able-bodied people to help appropriately would be an important part of maintaining my rehab gains.  homeafterstroke.blogspot.com 

26 times 66 feet

By 7 a.m. it is 75+ degrees F with 90% humidity so now it is too hot to exercise by walking around my neighborhood.  This is a problem because I have not been walking much inside since covid-19 curtailed my trips in the community.  Now I walk laps from one end of my 66 foot long trailer to the other.  It takes 26 laps x 66 feet to walk .32 of a mile (1,716 / 5,280 feet). 

Fatigue ruins everything so I have to be serious about not letting disuse atrophy creep up on me.
Every time I do 2 laps I make 2 hash marks on a sticky note on my kitchen counter.  Then I record the total for each day on a monthly calendar I keep on my kitchen table.  Then I enter the daily totals in a Excel file on my computer.  Finally I compute my monthly totals. 

To stop looking down at the floor as I walk I look for sunlight in each room.

I could not afford to buy a ranch style house after my stroke.  However, I love my 2 bedroom/2 bath trailer that has a full-sized laundry room all one floor.  The central air conditioning and dishwasher are a bonus.  homeafterstroke.blogspot.com

Not Making Exercise Personal = Non-compliance

Even though I am an OT I do not continue to exercise if I do not see what I get for it.  Linking a specific valued activity to a specific exercise motivates clients.  Leg lifts = boardwalk.  Before I start walking on the boardwalk at Point Pleasant Beach I hold onto the railing and do a few leg lifts to warm up hip flexors and abdominals on my hemiplegic side.  Leg lifts help with MANY TASKS, but what I care about is that they keep me from stubbing my toe on the edge of boards that stick up.

Here is another example.  My neighbor complained to me about OT.  Her OT had her put clothespins on a clothesline.  My neighbor said "I told that young girl I had a clothes dryer, but she made me use the clothespins anyway."  As an OT I knew her therapist was working on tip pinch.  However, I did not know my neighbor well enough to know why she would want a strong tip pinch in her non-dominant hand.  If one OT cannot tell what another OT's end game is how can clients see the value of exercise after the therapist is no longer there to ensure compliance?   A stroke taught me that hope and compliance fade quickly when there is no incentive.    homeafterstroke.blogspot.com

Another Thing I Did Not Know About Stroke

When I was an OT who specialized in stroke rehab I did not know the temperature of my hemiplegic foot could vary widely.  Two studies found a stroke survivor's hemiplegic leg may have atrophy of the superficial femoral artery which reduces blood flow (1, 2).  This may explain why my hemiplegic foot feels ice cold by bedtime in the winter.  However, poor leg circulation does not explain why my hemiplegic foot is hot and red by bedtime in the summer, even though I have air conditioning.  Sometimes my brain interprets this high heat as pain so then I walk barefoot after dinner with my quad cane.  The quad cane has four feet that force me to walk slowly which is irritating.  A stroke taught me things I did not learn from an advanced certification course or treating stroke survivors.  homeafterstroke.blogspot.com

1. Durant MJ, et al. Superficial femoral artery atrophy and reduced lower limb blood flow in
    subacute stroke survivors. Stroke. 2020(Feb);51:ATP484.
2. Ivey FM, et al.  Impaired leg vasodilatory function after stroke.  Stroke. 2010(Oct);41:2913-2917.

What Therapists Do Not Know About Falling

I recently heard a doctor on TV say elderly people should not look down when they walk.  He said using vision to prevent falls weakens the balance system.  Yet stroke survivors look down because even tiny obstacles can be a challenge.  Able-bodied people look down only when they encounter extreme fall hazards.  When hiking on a trail they look down so they do not trip on a tree root or rock.  Here is an example of how tiny barriers can make stroke survivors fall.

I had a terrible fall while walking on a slate walkway.  I fell after I stubbed my toe on the edge of a slate tile that was tilted up about an inch.  I hit the ground so hard that I had dirt and pieces of grass caught under my glasses after my face hit the lawn.  I did not fall forward and smack my forehead on the slate sidewalk because I instinctively dropped my cane and threw my sound arm forward to try to catch myself.  This sudden arm movement was enough to rotate my body slightly to the right.

Therapists may not know how violently stroke survivors can fall.  Human subjects committees would not allow researchers to put test subjects on a tilt plate that can cause a sudden fall without first putting test subjects in a safety harness.  PTs have to be conservative when they walk stroke survivors because they cannot have anyone fall on their watch.

However, I took the doctor's advice to heart because disuse atrophy is never good.  I am trying a hybrid strategy to reduce my use of vision to prevent falls when I walk around my neighborhood at 7 a.m.  I walk in the street because there are no sidewalks.  These streets have numerous potholes covered with lumpy patches.  Instead of looking down during the entire walk I look straight ahead until I spot uneven ground.  When I am about 10 feet from uneven ground I start glancing down with my eyes to see how far I am from the fall hazard.  When I get close I turn my head downwards so vision can tell me when to lift my hemiplegic foot over the obstacle.  I feel safe but repeatedly forget to use this new strategy.  I have been looking down when I walk for a long time but expect to change my behavior eventually.  homeafterastroke.blogspot.com