Are You Disabled?

A physical deficit may be permanent but whether we are disabled changes depending on the expectations and resources in a specific environment (1).  Let me give you an example.  I heard people in the hospital say they cannot wait to eat a home-cooked meal.  But there is a catch.  At home, people may be dismayed if “pop-pop” shows up for a meal when he needs a shower and a shave, is dressed in his pajamas, and has bed head.  I do not think dietary staff who deliver our meals care how we look because they do not have eat sitting across from someone who looks like a train wreck.  Resources can also change in different situations.  In the hospital, aides help people with A.M. care and the dietary department cooks.

At home, the person who cooks and assists someone with an impairment may be the same person.  You may not be disabled in the hospital but be disabled at home because your family has different expectations and resources.

Whether you are disabled also depends an whether you think independence should always be the goal.  Phalen says no one is truly independent (1).  Many people do not cut their hair, change the oil in their car, or prepare their tax returns.  However, able-bodied people help each other by dividing up a list of tasks.  Stroke survivors who have only one good hand may not be able to finish what they started unless they get help for specific steps during a task.  Repeatedly waiting for help during a task can get on your nerves.  My thumb leans on the independence side of the scale.  homeafterstroke.blogspot.com

1. Phalen SK. Constructions of disability: A call for critical reflexivity in occupational therapy. Canadian Journal of Occupational Therapy. 2011;78, 164-172. doi:10.2182/cjot.2011.1.78.3.4.

Practical Guide to Giving Assistance

Activities of daily living (ADLs) evaluations divide assistance into mimimal, moderate, and maximal.  The Functional Independence Measure defines these levels by the percentage of a task a client can do independently like 25 – 49%.  OTs can guesstimate these percentages because they see hundreds of clients which helps them judge a client’s performance.  Caregivers need a more practical way to know how much to help.

Minimal assistance = you can multitask because your loved one can do a lot, but stay near by.      Moderate assistance = sit or stand in front of loved one because they will need repeated help.  Maximum assistance = look for ways for your loved one to help you ( e.g. have them put their arm around you to help you scoot them to the front edge of the wheelchair before you stand them up).

OTs have an incentive to keep their hands in their lap – every time they help it lowers a client’s ADL score.  Caregivers have different incentives for waiting to see how much their loved one can do.  Caregivers need energy to do chores their loved one usually does, like cleaning toilets and mowing the lawn.  Caregivers also need energy to make doctor and therapy appointments, arrange transportation, deal with health insurance bills, pick up medications, set up home exercises, and deal with a loved one’s difficult emotions. 

When therapists say a client needs assistance, caregivers need to think about asking for help before they get into trouble.  Nurses gave caregivers a preparedness questionnaire before discharge from rehab and asked them what they were thinking as they answered each question (1).  A dialogue is much better than a handout.  homeafterstroke.blogspot.com

1. Carmicia M, Lutz B, Harvath T, Joseph J.  Using the Preparedness Assessment for the Transition Home After Stroke Instrument to identify stroke caregiver concerns predischarge: Uncertainty, anticipation, and cues to action.  Rehabilil Nurs.  2021;Jan-Feb 46(1);33-42.  

I Am Angry

An article in Stroke magazine made me angry.  The authors found they could predict independent walking three months after a stroke based on early status after the stroke (1).  These predictors included younger age, good leg strength, good sitting, continence, no cognitive impairment, no neglect, and independence in activities of daily living.

What made me angry is that the authors recommended these data be used to decide who should get rehab and who should go straight to residential care (1).  Data that describe groups of people cannot accurately predict which group a specific individual will end up in.  For example, data that says a chemotherapy treatment is 80% effective does not give you the power to tell a client if he or she will be in the 80% that will be cured or in the 20% that will die.

Many variables can change a client’s outcome.  For example, years ago I went to the nursing floor and found two nurses transferring my client from a wheelchair to the bed.  When I asked why I could transfer him with minimum assistance but he needed two nurses to do it he said                “therapists make you do things for yourself and nurses do things for you”.  He did not show the least bit of embarassment when he said this.  I wondered which rationale he applied to his wife.

To withhold care because of early status is *****!   It it fairer and more accurate to make decisions based on the amount, speed, and consistency of improvement.  homeafterstroke.blogspot.com

1. Preston E, Ada L, Stanton R, Mahendran N, Dean C.  Prediction of independent walking in people who are nonambulatory early after stroke: A systematic review.  Stroke. 2021 July. doi: 10.1161/STROKEAHA.120.03245.

Global Warming for Dummies (There Really Is a Book Called That) and the Subsequent Stroke

 

If you haven’t been under the proverbial rock, you have some idea of what global warming is. First, some background dummied down for  the population–of which I was one.

The combustion of fossil fuels is the reason temperatures are higher now, that is, hydrocarbons heat up the planet to produce the greenhouse effect. As a result, it causes interactions between the Earth’s atmosphere and incoming radiation from the sun. Thus, too many gases trap the radiation from going skyward again and heating up not only the earth but the seas and melting ice caps.

Burning fossil fuels like coal and oil puts more and more carbon dioxide into the air. Too much of these greenhouse gases can cause Earth’s atmosphere to trap more heat because the abundance of gases can’t dissipate anymore and go back to the atmosphere.

Here’s an example. Carbon dioxide up to the second Industrial Revolution in the mid 1800s was about 280 parts per million. As of 2018, the  CO2 in the atmosphere was 407.4 ppm. And that’s how bad the global warming is, and it will go up if we don’t change our daily routine.

There was talk in the 1990s about car-pooling so there wouldn’t be so many cars on the road, but Americans (of which I am one) need the freedom to go wherever they want and when they want as I did, too, before the stroke so most of them drive their own damn cars.  There was also talk of solar and wind power. But much of that talk has died down.

So we only have to blame ourselves because humans have been rapidly changing the balance of gases in the atmosphere. So where does stroke come into the picture?

1. In one study from 2016, which used data from the United States and China because those two countries emit the most greenhouse gases, is one of the first to examine the interaction between air quality and the number of stroke cases.

Led by Longjian Liu, M.D., Ph.D., lead study author and an associate professor of epidemiology and biostatistics at Drexel University, across the two countries, researchers found that the total number of stroke cases rose 1.19 percent for each 10 micrograms per cubic meter of air increase of PM2.5 and also found that temperature had an impact on air quality and risk of stroke.

Thus, people living in the South of the United States had the highest prevalence of stroke at 4.2 percent compared with those in the West who had the lowest at 3 percent, Liu said.

Researchers also found that temperature had an impact on air quality and risk of stroke.

“Seasonal variations in air quality can be partly attributable to the climate changes,” Liu said. “In the summer, there are lots of rainy and windy days, which can help disperse air pollution. High temperatures create a critical thermal stress that may lead to an increased risk for stroke and other heat- and air quality-related illnesses and deaths.”

2. In a more recent study by Dr. Guoxing Li et al focused on YLL (years of life lost) and found that models used indicated projections to estimate temperature-related YLL in the 2050s and 2070s the monthly analysis to be a significant increase occurred in the summer months, particularly in August, with percent changes >150% in the 2050s and up to 300% in the 2070s.

So future changes, beginning right now, in climate are likely to lead to an increase in heat-related YLL.

3. And from 2021 comes this: Dawn O. Kleindorfer et al, in a study which focused on lifestyle factors, such as a healthy diet and physical activity, are key for preventing a second stroke. [A second stroke. I can’t even imagine.]

Low-salt and Mediterranean diets are suggested for reducing stroke risk. Patients with stroke also are at risk for prolonged sitting, and they should be motivated to perform physical activity in a safe way.
If THAT doesn’t convince you…. So check air quality, stay cool, eat healthy, and get up once in a damned while. Have a good day, everybody!

5 Tools to Make Eating Easier

As an occupational therapist, my goal is to help people be more independent and functional in everyday activities. One-sided weakness, decreased grip strength, dexterity issues, or manipulation issues can cause someone to have difficulty getting food from plate to mouth. Using adaptive equipment can make the process easier and less frustrating.
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A Horrific, Honest Email From Sara Riggs: A Heartfelt Story I Had to Place on My Blog in Its Entirety

 


I usually get similar emails all the time, slightly different in location, length, and effects. But this one from Sara Riggs is different, so different that I felt I should share it with my readers. If it was on Facebook, I would feel strange giving it a “like.” And trust me. You won’t like it. 

But yes, Sara, in the blink of an eye, it’s all gone: confidence, empowerment, self-love. And now you have another job. You, like me, will probably never accept it, the final stage of grieving, and no, it’s no reason to celebrate with those inane stroke-versaries, but what’s the alternative! You should make it the best life you possibly can and join support groups, as many as you can find.

Here are two of the best support groups out there on Zoom:

Daniel’s group meets at 1pm every Tuesday: The Zoom link is 

https://zoom.us/j/3249406839

The other one run by Keith at 3pm every 2nd and 4th Tuesday is
I, too, was opposed to joining a stroke support group for many years, but once I joined, I go every Tuesday and I never regret it. There is joy and laughter, not at first because you’re new, but eventually.
Maybe write a book? As an editor, perhaps I can advise you.
So here it is, Sara Riggs’ experience:
 

 

Today

May 24, 2021

 

This morning when I woke, my first thought was the same as every other day:  What day is it and what needs to be done: calls to make, appointments, is it trash day?  Today is Monday and I have two calls to make to doctors.  Then I realized the date and began to cry.  3 years ago on May 24, 2018, my world changed forever.  I wonder who besides me will remember.  I wonder if I want anyone to.  If no one does, will it hurt me?  If someone does, what is there for them to say anyway?  Last year, in the same internal conflict, I wrote 2 short sentences of what I wanted to say, if it was mentioned.  Nobody remembered, and the words were not needed.  I am most fearful of those who want to celebrate today.  They will say I should be happy; what I should think about today.  While I understand why others would think that, I also know it will not be understood why I do not feel that way.  Why I dread today.  For this reason, I will not, cannot, remind anyone.  This is not a happy day for me.  I do not celebrate.  It is not an anniversary.  Anniversaries are happy times to celebrate joyous events.  When the annual observance of the day a loved one died, it is a reminder of a loss. Sometimes a sad day, reflecting on the events or days prior to the passing. Perhaps reliving memories.  Today is the annual reminder of such an unimaginable and unexpected loss.  A reminder of the death of a loved one, the loss of a life loved – mine.

 

I am drawn into memories of May 24, 2018. I remember how the day was spent and with whom.  The activities of the day before.  My mind walks through the timeline.  I remember a life of meaning.  A happy, full life of excitement and joy for an anticipated future.  Following a nice dinner with a good friend, with wonderful conversation and good wine, I was glowing.  I remember a terrible pain in my head and an ambulance ride.  I remember every article of clothing and piece of jewelry I wore (none of which was returned to me).  The memories are painful, knowing that this life was erased only a few hours later.  I remember waking in a hospital bed, an empty, nonfunctioning shell.  The ability to move, gone.  Sensation on half of my body, gone.  My vision, gone.  Half of my skull, gone.  The joy of a life loved, gone.  From glowing to the anguish of profound permanent loss in the blink of an eye.

 

For me, this day is an annual painful remembrance of the loss of a loved one.  A day of mourning.  Not an anniversary.

————————–
Need I say more? I don’t think so.

 

Out of Jail But Still on Parole

After I was vaccinated I started having meals with friends for the 1st time in over a year.  I was stunned by the benefits of face-to-face contact.  1st there is the joy of hugging someone.  2nd conversations are so much easier.  I know to be silent when I see another person take a breath before they start to speak.  I can see micro-expressions, like a tightening of the mouth, that are hidden by a mask and hard to see in the tiny faces of a group Zoom call.  It is also easier to hear what people are saying when they are not wearing a mask.  Increased visual and auditory input means I no longer have to concentrate to understand what friends and family are saying.          Less work = more fun.

I am still on parole because stores and medical offices in my area still require masks.  homeafterstroke.blogspot.com

6 Common Sleep Myths

Sleep disruption is one of those symptoms that often gets pushed aside in stroke recovery. It’s understandable. You’re likely dealing with a lot of changes and getting better sleep is the last thing on your mind. But getting better quality sleep can help you recover.

Continue reading “6 Common Sleep Myths”