Rehearsal Saves Me Again

My moving company will keep my belongings in storage containers for 2 to 3 weeks until there is a truck heading to west to Michigan.  The facility I am moving into will put a few pieces of furniture in my apartment so I will have a place to stay while I am waiting.  However, my car must be filled to the max because I need supplies to take a shower, do laundry, and make breakfast until the moving truck arrives.  I turned to rehearsal to make sure I can pack what I need in my car.  

The purpose of rehearsal is to make me feel awesome when I tackle a new task.  My 1st attempt shows me what I have to change.  My 2nd attempt lets me test new ideas to fix problems I discovered in step 1.  My 3rd attempt gives me an opportunity to combine and test the steps from attempts 1 and 2.  My 4th attempt gives me an opportunity to get faster.  Here are two examples of learning how to pack stuff in my car so I can stay calm on the day I leave for Michigan.

I need a rolling cart to take my clothes to the laundry room.  I need to know: 1) if I can lift the rolling cart into my car with one hand and 2) if it will fit in my back seat. I could not lift it straight upwards to put it in the car because it is too heavy.  However, when I leaned down and moved my hand close to the wheels, the weight of the long handle swung the cart horizonal. That made it easy to place the wheels on the floor of the car and then tilt the cart upright.  I was surprised to learn the small front wheels nested nicely under the driver’s seat.

I also need to know if 2 clothes baskets packed with bed linens and nested waste baskets will fit on my back seat.  I slid the 2 empty clothes baskets down my front steps and transported them to my cart using a small cart I keep on my patio.  I put them on my back seat and learned I could close the car door with room to spare.  The height of the basket raised the handle of the cart, but not enough to obstruct my vision in the rear view mirror.

There were so many constraints to take into consideration!                I would be a nervous wreck if I had not rehearsed these tasks. homeafterstroke.blogspot.com

Warfarin: A Blood Thinner and Rat Poison

I got a brain bleed 13 years ago and I wasn’t supposed to live. I had Protein S Deficiency that gave me blood clots and didn’t know it for over half my lifetime until I was diagnosed with a hemorrhagic stroke. The neurosurgeon didn’t operate because the chance that I would have survived the operation was zero, having thick and plentiful clots in every extremity. Instead, I was put on Warfarin, another name for Coumadin, and here I am, a decade later.

A little background first. The only restrictions with Warfarin are too much Vitamin K intake, like lots of cranberries, broccoli, or leafy green vegetables. The most important thing with Warfarin is to stay consistent. By staying consistent, the doctor knows how much Warfarin to give me through a prothrombin time (PT), a test used to detect a bleeding or clotting disorder and the international normalized ratio (INR) used to monitor how well the blood-thinning medication called anticoagulant is working. I take blood tests frequently and I am stable.

So how could Warfarin, the wonder drug, and Warfarin, the rodent poison, be related? 

A long time ago, in the late 1920s, the cattle and sheep in North America and Canada were dying from fatal bleeding, blamed on mouldy silage, (a method used to maintain the pasture for cows and sheep to eat later and stored in the silos when natural pasture isn’t beneficial, like in the dry season).

The cattle and sheep had grazed on sweet clover, a kind of hay. Hemorrhaging occurred usually when the climate was damp and the hay had become moldy. Tough times in the 1920s meant that farmers could not afford a replacement, so the hemorrhagic disease became known as “sweet clover disease.”

There were only 2 solutions, according to veterinary surgeons: destroying the moldy hay and having a replacement or transfusing fresh blood into the bleeding animals which was called “plasma prothrombin defect.”

But everything comes down to money, and even though the farmers were told not to feed the moldy hay, they did not follow the recommendation, and sweet clover disease remained, even a decade later.

By 1940, Karl Link, a biochemist, and his colleagues came upon a natural substance called coumarin, better known as dicoumarol from the sweet clover and was used as an anticoagulant, albeit an iffy one. The work was fully financed by the Wisconsin Alumni Research Foundation (WARF), who were given the patent for dicoumarol in 1941.

But in 1945, knowing that dicoumarol was a lengthy process in thinning the blood, Link considered using the coumarin derivative Warfarin as a rodenticide which had the reverse effect–slow bleeding until the little suckers bit the dust. Bleeding in who-cares-about-rodents fit the bill, and the compound was named Warfarin after the funding agency. It was marketed in 1948 as a rodenticide, and warfarin still exists today as both a rodent killer and a blood thinner.

 

In 1954, Warfarin became known as the go-to anticoagulant under the trade name Coumadin, and was approved for use in humans and, of course, rodents. But in humans, when there was still too much bleeding, Vitamin K foods reversed the effect. And too much Vitamin K led to clots. That is why I have to stay in the INR range of 2 to 3 when I get tested–above 3 could lead to bleeding and I have to take more Vitamin K; under 2 could lead to blood clots so I have to decrease my Vitamin  K. Thus, I get tested every other week.

The mechanism of Warfarin was not discovered until 1978, when John W. Suttie and colleagues, in an “Aha moment,” proved that Warfarin alters Vitamin K by slowing down the enzyme epoxide reductase, known as VKOR, which is highly sensitive to Warfarin, the most commonly prescribed anticoagulant. 
There it is, folks, as easily as I could say it. My trademark is, Know a little bit about a lot of stuff and you’ll get by fine.

The post Warfarin: A Blood Thinner and Rat Poison appeared first on The Tales of A Stroke Survivor.

Getting Hand Use Earlier than Stroke Survivors Think is Possible

Hand tests begin by asking clients to pick up objects from a table.  Stroke survivors would discover their affected hand can be useful earlier than they think is possible if hand-to-hand transfers were added to adult hand tests.  A small amount of finger movement done close to the body can make an affected hand functional.  If you pick up an object with your sound hand and open your affected hand 2 inches to receive the object from your sound hand, you may be able to do the tasks shown below.   A hand-to-hand transfer allows me to do 21 bimanual ADL tasks.
Example #1- Using a shower hose to spray water at the crotch does not take care of the nooks and crannies.  After a hand-to-hand transfer, my affected hand holds the shower hose close to my body which frees my sound hand to do its job.  This little bit of hand function means my mother, a nurse’s aide in the hospital, and I are the only people who have washed my crotch.  If my husband were still alive I would be mortified to have him do this intimate task.    
Example # 2 – When my affected hand was flaccid, I used to squeeze a deodorant bottle between my thighs so my sound hand could remove the cap.  Now my affected hand opens to receive a deodorant bottle from my sound hand and then holds the bottle still while it is resting on my thigh.  The two black lines show how little shoulder movement is needed when ADLs are done close to the body.
Example # 3 –  There used to be teeth marks on the cap of my toothpaste tube.  Now my affected hand can open to receive a tube of toothpaste from my sound hand which then removes the cap.  The end of the tube is propped against my stomach because this new tube is heavy.  I do not want to drop the tube and splatter sticky toothpaste on the floor.  I live alone so I would have to clean up the mess.
homeafterstroke.blogspot.com

Trauma Doesn’t Make a Person Strong, Recovery Does.

When I tell people that I am in the process of recovering from physical and mental trauma that I got while in a domestic violence situation, they usually have some variation of the same response: “I’m so sorry. You are so much stronger for having gone through that.” While I appreciate the sentiment, the trauma I experienced did not give me strength.

My trauma made me isolated. I stopped talking to people in my support system. When they would call I would either ignore them, or exchange pleasantries quickly, to prevent them from feeling the need to call me again. I would lash out at people who suggested that something was wrong, and ultimately pushed everyone away.

My trauma made me feel like I had to lie. I hid the truth of what was happening from everyone who loved me. Even when they asked what was wrong, or how I was getting so many injuries, I said I was clumsy and laughed it off. I lied to myself, convincing myself that I was the problem, and that it wasn’t a big deal. I compulsively started lying about every little thing: where I was, who I was with, what I was doing.

My trauma made me scared. I still jump at the littlest noises and any sign of conflict makes me shake. I have panic attacks with no apparent cause. I’m scared of people, of noises, of big objects. I have a hypervigilance that never seems to turn off.

My trauma made my self-esteem and confidence plummet. I don’t trust myself to make decisions, and everything I do I instantly judge myself for. I apologize for existing to my friends, and I don’t believe I belong anywhere. I can’t look people in the eye.

My trauma left me with long-term mental and physical issues. I’m still having neurological complications that doctors are having trouble figuring out. I still struggle with depression and anxiety. I became numb to everything around me, and was filled with dark thoughts that never seemed to end. I would struggle to get out of bed to even shower, and I would sleep for days on end. I didn’t find enjoyment in anything, and felt hopeless. While that has luckily ended, I still can’t make eye contact with people that make me even the slightest bit nervous. I have intense nightmares, and I still shake if there are loud noises.

Strength is defined as “the capacity to withstand great force or pressure,” with “withstand” meaning “remaining undamaged or unaffected by.” So you see, I was not strong for simply surviving my trauma. And when I am told some variation of “you are so strong,” when I feel anything but, it serves as a reminder that I was not able to “withstand” my trauma.

Strength comes in recovery. From withstanding the pressure to not heal yourself. From learning how to break bad behavior patterns that developed so that you could survive. From sticking up for yourself when you normally would have stayed silent. From choosing to prioritize yourself over other people. Recovery is where that ability to withstand force or pressure is tested.

I will heal, and I will find my strength again. But for now, I am shaken and sensitive, and that is OK. Strength does not come from surviving trauma, it comes from rebuilding one’s self. From withstanding all of the things that make it difficult to get back up again. From getting out of learned behavior patterns that were needed to simply survive. I am not “so strong” right now. But I will be.

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)