Hope for Paralyzed Arm?

Dear Joyce,

What are the chances of my arm, that hasn’t move at all after a hemorrhagic stroke, getting better? I’ve been doing exercises on and off for 5 years and I occasionally fell. 

I was told that I have a three-month window from the date I had the stroke for improvement to happen. Is that the standard now?

Concerned in Dallas


Dear Concerned,

Most occupational therapists who were recently trained starting about five years ago and later don’t say that phrase anymore about windows for improvement. The reason? It’s not necessarily true. 

Some people improve constantly whereas others, no matter what they do, improve slowly or, at some future point, stop improving. Putting a very narrow timeline for improvement is just harsh and takes away the motivation to improve. That’s why a common saying is, Don’t give up!

Falling in the biggest barrier for improvement. Aside from getting the initial shock, falling takes people back a step or two. Then people try again with a few days rest but, for example, they aren’t where they were a month ago.

The most important thing you said: “I’ve been doing exercises on and off for 5 years.” Keep doing the exercises that have been given to you constantly as long as you have zero chance of falling. Consistency will sometimes pay off! Or maybe you’re at that point where improvement has stopped. 

If you have insurance, or can afford to pay out-of-pocket, see an Occupational Therapist (OT) another time. Maybe there are exercises you haven’t tried yet. If it’s possible, I found that a variety of OTs can have a different spin on the same function.

Time will tell.

An Effective and Free Way to Improve Hand Function

The most commonly asked question I get from stroke survivors is what equipment or strategies most improve hand function. This week I decided to make a video in addition to this article.

Hand Function

This won’t be news to you, but losing hand function is a big deal. We don’t realize how much we rely on our hands until we can’t use them anymore.

And there’s a spectrum of hand functioning in survivors. It depends on several different things; where the stroke occurred in your brain, what your specific recovery journey looks like, and the amount of rehab you received after your stroke.

It’s also necessary to understand that hand function relies on the strength of your trunk, pelvis, shoulder, and shoulder blade (scapula). You’ve likely heard the saying, “Proximal stability for distal mobility,” at least once in your rehab. The stability of muscles closest to your body allows for freer movement of the muscles further away from the body.

For example, if your trunk muscles are weak, you may find it difficult to maintain sitting balance. If you’re having to concentrate on sitting balance, it will be much more difficult to focus on small finger movements.

A Combination Approach

All that said, combining exercises with activities using a task-specific training approach is an effective way to improve hand function post-stroke. This is based on both scientific and real-life evidence. I’ve linked some studies in the resources section if you’re a research nerd, like me 😊

In addition to being effective, they can also be done without any added cost or special equipment.

It’s no surprise that exercise would be a part of stroke recovery. But what the heck is task-specific training?

Task-Specific Training

It’s a technique used in neurorehabilitation. Task-specific training is based on motor-learning principles and the neuropsychology of learning and experience. It aids in cortical reorganization, which is a principle of neuroplasticity. This means that the more you do a specific activity after a stroke, the brain pathways will attempt to reorganize and rewire to get the desired outcome.

Let’s take a more in-depth look at task-specific training principles applied to activities.

The 5 Rs of Task-Specific Training:

  • Relevant: Whatever activity you decide to practice, it should be purposeful and meaningful to you! Research shows that neuroplastic changes happen more often when an activity is relevant.
  • Random: Switch between different activities. This helps you develop generalization. When you perform similar movements and activate the same movements, it’s easier to translate those movements across tasks. For example, reaching for milk in the refrigerator can help you reach up into a cabinet to get down plates, bowls, etc
  • Repetitive: Practice, practice, practice! By practicing aspects of an activity over and over, the better you’ll get. This is something called massed practice and can help your brain rewire more quickly. No surprises there!
  • Reconstruction: Once you’ve got the pieces of an activity down, put them all together and practice the whole activity.
  • Reinforce: If you’re in therapy or have someone helping you with this, ask them for feedback on how it’s going. Regardless if you have help, give yourself feedback when you know a task went well or didn’t quite hit the mark!

Don’t get me wrong, e-stim and robotics have their place in stroke recovery. But man, they can be expensive! And you need special training plus a doctor’s approval to use them.

Why not try something that science has proven to be effective and is free?

Try alternating exercise and activity days to reduce burnout or boredom with your home recovery program. Keep practicing both exercises and activities even if you don’t see changes quickly. It takes time and a lot of repetition for the brain to rewire!

Mother Has Problems Helping Difficult Father

One of our members from South Africa submitted the following:

 

Dear Joyce,

 

My dad who is now 71 years old had a stroke and heart bypass last year. He is fully mobile and in good health. He is just extremely difficult and makes life very difficult for my mom who is taking care of him. Any guidance is greatly appreciated. 

 

On Behalf of Mother

 

Dear On Behalf,

 

Was your father always this way, or did he get difficult after his stroke and heart bypass? If it was before those health complications, you or your mother might suggest he go see someone he respects like a psychologist or clergy or someone in social work as guidance. Or have your mother go and see someone, too, if that helps her.

 

If the problem started after his health complications, give him time to get accustomed to the activities he has trouble doing or can’t do anymore. 

 

It took me several years to realize my limitations. For example, I have trouble walking a distance with the cane so I can’t zip in and out like I used to. It was stressful, though it took time to adjust. Give your father time to adjust, too. If he doesn’t adjust soon and still makes taking care of him difficult for your mother, use the psychologist, clergy, or social worker as your guides. 

 

Again, your mother can go to see those people, too, to discover if she’s doing something that is annoying your father, like lack of patience or screaming at him.

 

Best wishes to both of them.

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 my feet 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

NATIONAL STROKE HELPLINE GHANA

National Stroke Helpline (NSH)

The National Stroke Helpline(NSH) is aim to provide information and support on treatment & care (Rehabilitation and Integration) on stroke for persons living in Ghana. If you know someone who  has been affected by a stroke or their carer, or you want to know more information on how to reduce your risk of a stroke, please get in touch with the National Stroke Helpline Ghana (NSH)

There are a few ways to access the National Stroke Helpline
  1. Call 0594989495
  2. Or visit the Stroke Helpline ( https://care.sasnetghana.org/helpline-2)
  3. Or email helpline@sasnetghana.org
We’re open:
Monday-Sunday: 8:30 am-6pm
The National Stroke Helpline (NSH) provides information about stroke and its effects, what happens after a stroke, or what help and support is available. You may have many questions, be looking for some information and  guidance, or simply want someone to talk to. That’s where we can help.
Contact our team
If your email requires follow-up, our Helpline team will respond within 24 hours.
You can contact us by:
Phone: 0594989495
Email: helpline@sasnetghana.org
Stroke Association Supportnetwork-Ghana (SASNET-GHANA)
www.care.sasnetghana.org
WhatsApp: 0262463986
Social Media: Facebook (FightStroke SasnetGhana) and Twitter (@ghbeatstroke /@adadams10)

Healthy Recipe: Black Bean Soup

This simple meal is vegetarian, filling and nutritious with a star ingredient: black beans! Black beans are some of the most nutritious foods in the legume family. They are packed with protein & fiber (15 […]

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.  My brain often interprets this high heat as pain so I walk barefoot with my quad cane which has four feet.  The quad cane forces me to walk slowly which is irritating!  A stroke taught me things I did not learn from an advanced certification course or experience 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.

Visual Deficit of Any Kind or Just Fatigue from Stroke or Other Brain Injury? OrCam Read to the Rescue!


I was tired after 9 hours from multiple projects when, pre-coronavirus pandemic, I went to a famous vegetarian restaurant with a person I was going to interview, which also served vegans (of which I am one). I was told they had excellent food (first-rate grub is not at all uncommon for Portland) and we were seated when the server handed us the menus. 

My anxiety kicked in when I saw the printed menu. Though the lighting wasn’t dim, the items were too small to read and my double vision went off from fatigue, both of which made for impossible reading. 


It was a small place, and I could have asked him to read the menu to me, but it was embarrassing and awkward. I closed the menu as if I read it, and so did my interviewee, motioned the waiter that we were ready to order, and asked the server instead, “I’ll have that dish with tofu,” upon which, being confused about which dish I meant, he rattled off several dishes with tofu, and I chose one.


Almost the actual size 

Enter OrCam Read (albeit six months later), the magnificent marvel which is five inched long, less than an inch wide, who reads anything to you from the printed page. It is totally portable, and you could zero in to only part of the document, like for a newspaper or read the whole page of a book. I got one on a loan to write this blog post because my heart is with stroke and other brain injury survivors whose after-effects, except for the lucky ones, include visual deficits. 

The two founders are: Prof. Amnon Shashua holds the Sachs chair in computer science at the Hebrew University of Jerusalem, and his field of expertise is computer vision and machine learning, and Ziv Aviram who holds a B.Sc. in Industrial Engineering and Management from Ben-Gurion University. They both have a healthy history in safer ways to observe the environment, and that led to OrCam Read


Impressive indeed. But I wanted more. I sometimes, to this day, have double vision. 


The instructions say, “OrCam Read is a personal AI [Artificial Intelligence] -driven device for people who have mild or low vision, reading difficulties, including dyslexia and reading fatigue, and anyone who is consistently exposed to large amounts of text – at work or school, or for leisure.”


Aside from the restaurant where I would have used OrCam Read, it doesn’t need WiFi so no disruptions for pilots on airplanes or captains on ships. One could even use it to read books for enjoyment or serious stuff like final exams. The battery in constant use lasts about four hours.


Not only does OrCam Read have screen selection, but there’s a laser pointer, too, if you want people to read a chart or bullet points during a presentation. 


OrCam Read features:
• 13-megapixel camera in front
• Built-in speaker
• Only 4 buttons
Power
Trigger
Plus – increases volume or rate of speech
Minus – decreases volume or rate of speech
• Bluetooth connectivity

Functionality:
2 reading options
Capture a block of text with a box-shaped laser beam
Choose where to start reading with an arrow-shaped laser beam
• No need to scan text or follow a line, all you have to do is hold the device in front of the text, push a button, and the text is read aloud instantly
• No internet connectivity is required and there is no connectivity to the cloud

Warranty:
1 year warranty

Oded Tsin, the Business Development Manager for OrCam, said, “Once you press the trigger button, the first button next to the +, the laser guidance will appear. You can keep holding the trigger button and aim toward the script. Once you will release it, the device will capture the image and read to you. 


“If you want to switch between the two laser options, you will double click the trigger button same way you double click a computer mouse.” 

So OrCam Read couldn’t be easier. I tried it a bunch of times with the loaner. I used it to read a book for an hour and it took the stress of double vision out of the mix. I used OrCam Read to read a printed newsletter from Stroke Awareness Oregon and it did a perfect job. I even used OrCam Read to read an invitation to a baby shower! It’s a sure bet that it will work every time. 

Now for the cost for which you can pay it out according to your needs: $1990 and it’s not covered by any type of insurance (though it ought to be). Perhaps your organization can buy OrCam Read to share among those with visual deficits.

I want to thank Oded Tsin and also Chris Braswell, Area Sales Manager with OrCam, for letting me try the OrCam Read device.

For more information about OrCam Read, please click here and enter your contact information:  https://orcam.co/30bEOvV  

Post-note: In case you were wondering, I received no compensation for promoting OrCam Read. So why OrCam Read? I’ve dedicated the rest of my life to helping stroke and other brain injury survivors and, with many having visual deficits, they’re among the ones that will benefit the most from this extraordinary device. Now you have the answer…in case you were wondering.  

COMMON PROBLEMS AFTER A STROKE AND WHERE TO SEEK HELP FROM.

COMMON PROBLEMS AFTER A STROKE AND WHERE TO SEEK HELP FROM

PROBLEMS

  1. Shoulder pain/shoulder and hand pain.
  2. Urinary tract (bladder) infection.
  3. Constipation/diarrhea.
  4. Sliding or falling out of wheelchair.
  5. Behaviors problems.
  6. Aspiration (Choking/coughing after swallowing).
  7. Bedsores.
  8. Depression.
  9. Double vision or – Only seeing on one side.
  10. Reactions from a prescribed medication.
  11. Stroke centers/units/support /Treatment.

 

WHERE TO SEEK HELP FROM

  1. Physiotherapist/ Occupational therapist.
  2. Clinic/doctor/nurse.
  3. Clinic/doctor/nurse.
  4. Physiotherapist /occupational therapist.
  5. Occupational therapist/Clinical psychologist /social worker.
  6. Speech and language therapist /nurse.
  7. Doctor/nurse/physiotherapist/ Occupational therapist.
  8. Clinic/doctor/occupational therapist /social worker.
  9. Clinic/optometrist/occupational therapist.
  10. Doctor/pharmacist/Hospital/clinic.
  11. SASNET-GHANA Team/Help line.

IMPORTANT : Person living with stroke and their carers could also receive  answers to the above stated problems by signing up to the Post Discharge Stroke Support(PDSS) Program by the Stroke Association Supportnetwork-Ghana (SASNET-GHANA).

http://:caresasnetghana.org  online or

by signing up to  Ask Dr Charway –Felli Platform for support .

Register for free support online here  care.sasnetghana.org/ask-charway/

 

 

 

 

 

 

 

 

 

 

 

The Coronavirus Ain’t Leaving So Fast

In a recent Time article entitled Nearly Half of Coronavirus Spread May Be Traced to People Without Any Symptoms by Alice Park, The Annals of Internal Medicine concluded “at
minimum, 30%, and more likely 40% TO 45%,” were spreading the virus to others without realizing they were also infected at all. There is a name for those people without symptoms (fever, fatigue, shortness of breath, coughing) to the COVID-19: asymptomatic.

Eric Topol and his co-author, Daniel Oran hunted for studies that included asymptomatic people and focused on different groups of people tested for COVID-19 worldwide. Among others, included were:

  • More than 13,000 people in Iceland who volunteered to be tested for COVID-19
  • Residents of Vo, Italy
  • Passengers on the Diamond Princess cruise ship where an outbreak was witnessed
  • Visitors to homeless shelters in Boston and Los Angeles
  • Prison inmates
  • College students
  • Nursing home residents in King County, WA.

 

Follow-up testing of those participants showed that only a small fraction who were asymptomatic when they tested positive on the first go-round went on to develop symptoms, permitting the researchers to choose between people who were pre-symptomatic (who went on later to develop symptoms) and those who are accurately asymptomatic and test positive for COVID-19 but never develop obvious symptoms. For example, among the more than 2300 people tested in the Vo population, 41% who had no symptoms when they tested positive and never developed symptoms over a 14 day period.

Topol and Oran concluded that while they may not be showing any signs of illness on the outside, asymptomatic people are still transporting a dangerous and infectious virus that they can spread to others.

“The virus may be damaging the bodies of asymptomatic in other ways,” says Topol. Among the 331 passengers aboard the Diamond Princess ship who tested positive but did not have symptoms, it was revealed that 76 CT scans of their lungs showed signs of lung tissue damage typical of coronavirus infection.

In another study, this one in South Korea, that studied 10 asymptomatic people from a group of 139 COVID-19 patients and warranted similar findings. The lung was affected in all asymptomatic patients, and researchers decided it was necessary to extend the evidence of COVID-19 testing.

“Given that public health officials aren’t testing the entire population, there are still huge gaps in understanding what asymptomatic disease,” Topol says.

Then there is the question of how long asymptomatic people are infectious. No one for sure, but wearing masks in public settings means less infection from those who are asymptomatic. So does social distancing and washing hands frequently given the numbers of asymptomatic people.

“If even a portion of the 100 million Americans who have a smartwatch or fitness band are involved, then we could go in and do studies for information we are missing now—antigen testing, antibody testing and we can look for transmissibility,” says Topol. “The priorities during a pandemic are absolutely to look after the sick. But we also shouldn’t miss how important this area of asymptomatic spread is to understand. For every one person who is sick, there are a whole lot of people who have the virus and don’t know it.”

So what does all this mean for the public? Remember the numbers: “at minimum, 30%, and more likely 40% to 45%.” Scary though it is, I, for one, won’t be going to the beach where people sit willy-nilly next to each other. No public settings at all for me like concerts or sports events that may open to the public, until much more is known about asymptomatic people. You can’t spot one because they’re like the rest of us, except they’re harboring a death-defying  disease silently.