Music Fest!

I didn’t exactly suffer from a stroke. I had severe hypoxia in my right lobe. The effects are fairly similar though. I have memory, problem solving, attention, and directional finding issues.

Anyway this weekend I will finally get to go to a music fest again. I missed it for the past two years , due to Covid, and other family medical issues. I love live music, because listening to it is a fairly passive activity, and doesn’t require an awful lot of speech.

There will be three stages. Luckily planning out who I want to see won’t be super taxing. Sometimes I can get lost in the field of people, and forget where I was sitting, but I am getting better.

I think it’s time I planned the weekend in my phone. I use different colors for the different stages.

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5 Practical Ways to Handle Loneliness When You Live With Depression

Last Saturday, I found myself in a rare situation: I was home alone (minus my cat). At first, I was excited to have some time to myself and planned to focus on some work I needed to do. However, as the hours ticked by, I started feeling more and more lonely. I missed my partner and my children, and the tasks I planned to accomplish started to feel like too much to handle. My thoughts began to spiral and I started settling into the all-too-familiar funk of loneliness.

Thankfully, I have spent enough time on this very issue in therapy to not only recognize what was happening, but reach for my coping skills to pull myself out of the funk before I fell too far into it. However, I also realize that handling loneliness is a common issue for people who live with depression, myself included. So, here are some suggestions on how you can handle loneliness when you live with depression.

1. Reach out to close friends.

When you live with depression, it’s easy to slip into a mindset that reaching out to friends makes you a burden. However, that’s rarely the case. If you feel lonely, sometimes the best thing you can do is reach out to a friend and see if they’re available to meet in person or virtually for a bit.

Personally, I have a group of friends with an unofficial “loneliness agreement.” Essentially, if one of us is feeling lonely, we text the group. The other people respond so we can try to make plans to do something together. Sometimes we go out for dinner at one of our favorite local restaurants, and other times we meet at one person’s house and we each bring games and food. It’s pretty great.

2. Take advantage of interactive online communities.

Although I firmly believe in-person contact is the best remedy for loneliness, we do live in a world where it’s very easy to connect with people who share similar interests or deal with similar health conditions online. In fact, there are dozens of forums and social platforms people can use to build strong connections with interactive online communities.

The Mighty offers a lot of great groups, but you can just as easily post a thought or question to interact with others as well. There are also a fair amount of Subreddits specifically made for people who live with depression and other mental health conditions, or there are also support groups that meet online. If one of these types of virtual supports helps you combat loneliness, then it’s definitely worth it.

3. Focus on the present moment.

Unfortunately, FOMO has become such a huge part of our lives since we’re constantly bombarded with pictures and check-ins on social media. Sometimes this can make you feel even more isolated and alone when you live with depression, and it’s easy to spiral deeper into a depressive episode the more you scroll through Instagram.

If FOMO is contributing to your lonely feelings, I highly recommend trying some mindfulness exercises to refocus on the present moment. Meditation or paced breathing are ways to do this, but I personally love performing everyday tasks one-mindfully (focusing and being present to one thing with complete awareness) when I’m in a funk. I’ll ditch my phone on the couch, then walk to the kitchen and do the dishes or mop the floor. I also love eating ice cream one-mindfully because it combines my favorite food with my favorite dialectical behavior therapy skills for distress tolerance and mindfulness.

4. Find low-effort ways to connect.

Sometimes going out with friends or washing the dishes requires too much energy, and I get that. However, there are still ways you can connect with the people you love and stay curled up in bed.
If you’re craving connection but don’t want to leave your bedroom, you can:

  • Use apps like Rave or Teleparty to watch television shows or movies with friends or family.
  • Host a virtual happy hour or similar hangout through Zoom, Teams, FaceTime, or Facebook Messenger.
  • Play multiplayer video games online.

5. Distract with activities you enjoy.

I’m guilty of assuming the cure to loneliness is surrounding myself with other people. However, that’s really not always the case. In fact, there are lots ways you can combat loneliness by hanging out with yourself.

Personally, I enjoy making or listening to music. Sometimes I even dance along. My oldest child enjoys drawing or reading books. I have friends who distract with puzzles, and others who paint. The activity itself isn’t important. What matters is that it’s something you genuinely enjoy doing. If it brings you joy, it will (hopefully) help those lonely feelings fade away.

Living with depression is no walk in the park, especially when you feel lonely. Although it sometimes feels like you’re on an island by yourself, I hope you can find ways to connect with the people who love you. At the end of the day, the lies depression brain feeds us are usually utter crap, and talking to people who love us can help tear apart those lies.

Toilet Training is a Disaster

OTs evaluate how clients get on and off the toilet.  However, aides are the ones who deal with dressing and undressing during toileting.  Aides have large caseloads so they speed up toilet time by doing everything for their clients.  This assistance masks safety issues.

Small weight shifts while pulling my pants up threw me off balance.  I had to repeatedly twist my trunk so my sound could reach across the front of my body to get my underpants over the paralyzed hip and reach behind me to get my underpants over the affected hip in back.  Continue to twist when I pull my pants up over my affected hip.  It took 2 weeks for my standing balance to improve enough for me to feel safe when I pulled my pants up without an aide in the bathroom.
Toileting also requires repeated turning.  After I walk into the bathroom I have to turn 180 degrees to close the door at home or a doctor’s office.  I am facing the door I just closed so I have to turn 180 degrees to walk to the toilet.  When I get to the toilet I have to turn 180 degrees so I can sit down.  I have to turn 180 degrees after I stand up so I can flush the toilet.
OTs do not evaluate gait in the bathroom because ambulation is PT’s domain.  PTs do not evaluate standing balance while twisting the trunk and repeatedly turning 180 degrees because toileting is OT’s domain.  Yet needing 24 hour assistance for toileting can lead to a nursing home.  This is a severe consequence so OTs and PTs need to stop worrying about stepping on each others toes.  homeafterstroke.blogspot.com

Yes, You Should Use Global Warming and Stroke in the Same Sentence

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!

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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

Aphasia: 10 Insensitive Reactions to Someone Who Has It

Aphasia is not having a senior moment every once in awhile. Rather, aphasia is the loss of ability to comprehend or express speech caused by brain damage, one of negatives for winding up with a malfunctioned brain from stroke and other Traumatic Brain Injuries (TBI). Sometimes you get better with aphasia from stroke or other TBIs, but few get better completely. I know because all ten happened to me.

 
I make a self-deprecating joke with aphasia when I often say, stumbling to find the exact word, “This here is aphasia in action,” naming it before people think I’m slow. But naming it or not, aphasia really sucks. I’ve had it April, 2009, because I had a stroke.
 
I’ve come up with a list the insensitives among us say when, after a few seconds, they lose my thread and start talking about something else. I want to say, “C’mon, guys, can’t you wait while I think of the word,” but I never say it. Why bother? I see that now. But early on, I wanted to change the world’s thinking about aphasia. What a dud I was.
 
Here’s the list of the top ten reactions people have for those with aphasia:
 
1. I have trouble understanding you
This statement cuts right into my soul. You’re speaking English. I’m speaking English. “So what’s the problem?” I say silently. To my ear, it sounds good enough, but to the person’s ear, it sounds incomplete, which it probably is. But still….
 
2. Supplying the right word
Oh, no! I want to be part of the conversation, and if you’d just hang on for a sec or three, the word will come to me. They won’t. But my aphasia is different from some, because the word that I’ll come up with, though in the ballpark of correctness, a word I’ve rarely used before. Example, we took a ride to the coast and when we arrived, I described the houses as “ramshackle.” I never know what’s going to come out of my mouth because I lost the filters when I had a stroke in 2009. 
 
3. People finishing your thought
I can honestly say, “What the F is wrong with them?” Sheesh. Give a gal a chance. They think they’re doing me a favor, but the exact opposite happens. I resent them, and fairly soon, I want to leave the room. 
 
4. Speaking sentences that NO ONE understands
I’ve improved, but early on in the first three years I spoke sentences that even after I was finished, I  couldn’t understand. People just stopped listening soon after. 
 
5. Making up words
I used words, back in the beginning, that weren’t really words at all, like “clockfer,” “greenac,” and “withand.” I know that I said them because early on (wanting to escape the aphasia which I still have not done completely), I used to tape conversations on my phone and recognize the errors. I was embarrassed but given the condition I was in, a little empathy please?
 
6. Inability to understand someone else’s conversation
In the first year after my stroke, I went to an art lecture on Picasso, and with the visuals right there in front of me, I had severe trouble following that talk. But people were annoyed that I “didn’t get it.” 
 
7. Pronunciation suffers
On the first round, even after thirteen years, I still, like a little child, say “bisquetti” for spaghetti when I don’t remember to slow down my speech. It is also useful to say every part of the word in isolation and put it all together, slowly at first. Thus, I had the inability to pronounce words correctly, and some words not due to muscle weakness or paralysis because I could pronounce them if I slowed the heck down. Some people laughed. It wasn’t funny though.
 
8. Loss of reading and/or writing skills
In some patients with aphasia, reading and/or writing skills (usually both at first) are lost. This means that the patient is no longer able to comprehend written language or even express themselves through writing, all of which are necessary to communicate to emotion, language, and information using symbols, and even emojis. You can imagine what that loss does for self esteem. They have to start over. I’m extremely fortunate, as a writer, I didn’t have that affliction. 
 
9. Spontaneous speech is rare for aphasiacs
I gave a speech to a stroke support group a year after the stroke in the Hershey Medical Canter in Pennsylvania, and though it appeared spontaneous, I simply read off the bullet points so fast, it seemed that the neural pathways were on fire for somebody in the back row who was simply listening and not watching the presentation. Spontaneous speech, also called off-the-cuff, is speech that happens without any planning having taken place, and the majority of aphasics, though they want to do it, simply are unable. 
 
10. The facial expressions
I saw the frowns, and sneers, when I talked to people, even now, if the minds are already made up that this is a person (me) whom they won’t understand. I detest it though I can’t have any control over so I don’t worry about it like in the early years. I can try and talk slower and who cares what they think? If they call me slow and dimwitted, who cares? 
 
Alexander Hamilton said it best: “We must make the best of those ills which cannot be avoided.” Hamilton may have been talking economics, but I’m talking stroke and other TBIs. 
 
Different causes; same result. You have to learn to live with it! Now I say it, but in the early years, I was totally unforgiving. Here’s another famous quote: “It’s so hard being a person,” said by yours truly, Joyce Hoffman, in my thoughts, for I couldn’t talk for five weeks, April, 2009.

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Why Do Stroke Survivors Lose Friends?

Through my involvement with stroke survivors at all levels, I heard from a lady who had to move 2000 miles away to get out of an already horrid relationship. Reason being, she was under so much stress that once she had the stroke, the situation was unbearable. The distance was worth it for two reasons, I imagine: the distance put, well, distance between her and him AND she is happily situated now, 10 minutes away, near her daughter. I’m a sucker for stories with happy endings.

My online stroke support group works on giving me distance, too–to stay away from people who can’t tolerate that I’m different than when they knew me before! First, some research on why the intolerance.

Studies say it is predicted that by 2030, there will be 12 million stroke deaths and 70 million stroke survivors. It stands to reason that many stroke survivors feel unsupported. So the questions remains, can the complex needs of survivors and families and friends cope with the aftermath of stroke? Or any type of brain injury, for that matter.

It is estimated that up to one-third of survivors will have communication difficulties including aphasia, dysarthria, or apraxia of speech (language comprehension, producing speech, and/or difficulties with reading and writing). Research says stroke survivors with communication problems aforementioned may have difficulties living in a community with those that don’t have such problems, resulting in a poorer quality of life and not joining activities of daily living. Furthermore, evidence of the survivors are also more likely to suffer depression and have reduced social interactions.

The National Institutes of Health published an article about why people lose friends after a stroke and why this phenomenon occurs across the board . 

Under the helm of the English study, Northcott and Hilari explored why people lose contact with their friends, and how friendship loss and change is perceived by the survivors.

Between 8 and 15 months post stroke, 29 participants were recruited, 10 having aphasia. The researchers deduced the main reasons given for losing friends were: 

1. loss of shared activities 

2. reduced energy levels
3. physical disability
4. aphasia
5. unhelpful responses of others
6. environmental barriers
7. changing social desires 

“Those with aphasia experienced the most hurtful negative responses from others and found it more difficult to retain their friends unless they had strong supportive friendship patterns prior to the stroke,” says the study. 


“The factors which helped to protect friendships included: having a shared history, friends who showed concern, who lived locally, where the friendship was not activity-based, and where the participant had a ‘friends-based’ social network prior to the stroke.”

Another study by Martinsen et al in a nursing journal examined psychosocial consequences following a stroke and the survivors’ ability to participate in and carry out the ordinary and expected roles and activities of family life. 

Twenty-two stroke survivors aged 20–61 years were interviewed extensively six months to nine years after stroke onset. The struggles are summarized in two main categories: struggling to reenter the family and screaming for acceptance.


“Being provided with opportunities to narrate their experiences to interested and qualified persons outside the home context might be helpful to prevent psychosocial problems,” the study says.

Normality includes feeling sad over the problems caused by stroke. However, a portion of the survivors experience a major depressive disorder which should be diagnosed and treated as soon as possible. The people we should focus on are the people with a major depressive disorders which includes a number of symptoms nearly every day, all day, for at least 2 weeks. 

 

 

These always include at least one or more of the following, and all the time beyond 2 weeks:
  1.  Feeling sad, anxious, pessimistic, and/or hopeless 
  2.  Loss of interest in things that the person used to
       enjoy
  3.  Feeling restless, loss of energy, and/or feeling
       fatigued constantly
  4.  Feeling worthless and/or guilty
  5.  Increase or decrease in appetite or weight
  6.  Problems concentrating, remembering, and/or 
       making decisions
  7.  Trouble sleeping or sleeping too much
  8.  Headaches and/or stomach problems
  9.  Sexual problems 
10.  Thoughts of death or suicide

What are the takeaway thoughts? There are two. 

First, it is normal for a stroke survivor to experience most or all of these feelings or emotions. Second, family and friends should take heed and be more supportive of the survivor regardless of the healthy one’s sometimes biased, small-minded, and me-centered thinking. 

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My Dreams Have Changed

My dreams have changed over the years.  As a young woman my 1st dream was to get married and have a family.  But I was not able to have children and my husband did not want to adopt.  Thank God I got a scholarship to a master’s program in occupational therapy. That degree allowed me to support myself without needing to work two jobs after I got divorced.  This helped me achieve my 2nd dream of financial security as a single woman.

My 2nd husband liked to travel so my 3rd dream was to see the world.  I have precious memories of Paris, London, New Orleans, Prince Edward Island, the Grand Canyon, Yellowstone National Park, and Alaska.  An actor in a commercial asked “When we are on our deathbed will we regret what we didn’t buy or the experiences we missed?”  I have thrown away many of the items I bought but my memories of traveling still make me happy.

Moving into an independent living community has given me a 4th dream.  Except for short visits with family and friends, I have not been around people every day since a stroke forced me to retire 18 years ago.  I had social contacts at my breakfast club, church, and dinners and day trips with friends.  However, after spending 2 years in isolation because of covid I crave human contact.  I do not expect to form deep friendships, but covid taught me how comforting it is to have someone say “hello.”  I might even learn what I am thinking when I hear what I say to other people.  homeafterastroke.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.

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Knock, knock! I Was At Death’s Door. And Then I Wasn’t, aka The Issue of Turning Off the Life Support Machine Too Early

When I had my hemorrhagic stroke in 2009, my boys knew I had a zest for life from the way I lived it up to that point. I didn’t have it written anywhere, but they just knew that I wouldn’t want to die then at 60. Having put me in a medically-induced coma with a feeding tube and more wires that seemed to me, at the time, of going nowhere and everywhere, the doctors held little hope that I’d survive at all, and they thought surgery would finish me off completely, and only blood thinners would sustain me, if at all, in the life I now have.

Reported by The Daily Telegraph, a London newspaper, in 2013, an American study suggested that one third of patients who suffer a specific form of stroke are having their life support machines switched off when they might recover.

The study from the University of Washington Stroke Centre in Seattle looked at two groups of patients who had suffered brain bleeds. They matched 78 patients whose life support was turned off to 78 patients that still had the machines on.

The researchers found that 38% of those who life support machines were utilized after some reasonable time period made a reasonable recovery, and kept progressing. (About 10% of strokes annually are intracerebral hemorrhages (ICH), that is, brain bleeds). But only 4% of those whose life support machines were turned off made this comparable and early level of recovery, despite the fact that the two groups were compared evenly on stroke severity.

Dr. David Tirschwell, the main author of the study and co-director of the Stroke Centre, said, “Greater patience and less pessimism may be called for in making these life-and-death decisions. These results are yet another piece of evidence suggesting healthcare providers may be overly pessimistic in their assessments of these patients’ prognoses, leading families to choose withdrawal of life support before the patient has had a chance to recover from their stroke.”

Professor Steven Greenberg, chairman of the International Stroke Conference, and professor of neurology at Harvard Medical School, said, “The finding that fully a third of ICH patients in whom life support is withdrawn might otherwise survive is staggering.”

A more recent study in 2019 entitled A Fate Worse Than Death: Prognostication of Devastating Brain Injury, by Pratt et al says,
“[Doctors] should consider the modern literature describing prognosis for devastating brain injury and provide appropriate time for patient recovery and for discussions with the patient’s surrogates. Surrogates wish to have a prognosis enumerated even when uncertainty exists. Respect for patient autonomy remains paramount.”

Also in 2019, reported by Dr. Robert Truog, is when someone encounters a traumatic brain injury [and stroke is one of them] and is unresponsive, how soon can doctors say if the person has a reasonable chance of recovery? New and stricter guidelines from the American Academy of Neurology prompts making the choice more difficult.

Truog writes that the practice now in most ICUs is to help families make a decision about whether to stop life support within the first 3 to 5 days after the injury. After 72 hours of observation, the physicians are likely confident in predicting a poor outcome as “extensively supported in the literature.” But is that enough time?

Take me, for example. On life support, my medically-induced coma lasted over a week. And the doctor still wasn’t confident of any projected outcomes close to a month later in the ICU. My sons would have been devastated if the doctor recommended stopping life support. I owe my thanks to my sons to counter any thoughts of stopping the machine. And to the doctor, of course, for listening to them.

Brain injury survivors or not, do it now! If you have any future brain injury, write down that you want to live, to enjoy all life has to offer you, for as long as you can. Write it down now to not rush the termination process, and put it on the refrigerator with a magnet. Or place it somewhere else that even a terrible searcher can find it.

Three to five days is nowhere enough to predict outcomes. I am living proof.

As Marcus Tullius Cicero, a contemporary of Caesar, said, “While there’s life, there’s hope.”

Amen to that, brother. 

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