10 Things Not To Do or Say When You’re With a Stroke Patient

People are funny, and I don’t mean in a ha-ha sort of way. They could be neurotic, bi-polar, obsessive-compulsive, anxious, or agoraphobic, just to name a few types. Some of the ones who came to visit me had their own type: dysfunctional-when-meeting-a-stroke-patient.

Even though they had good intentions, in all fairness to me, some of them said and did things that were downright insulting, if I took the comments and body language personally. But I didn’t ever, for those people who took the time and came to visit me.


In all fairness to them, how could they know the right responses from the wrong? What it really comes down to is this: How do you speak to a stroke patient whose had her life turned around in a 180-degree spin?


I made a list of the top ten things you should never say or do to a stroke patient, and I, too, have been guilty of most of them before having my stroke when I visited stroke patients. So having set the record straight, here goes.


Saying good girl, good boy, good job


Those are phrases you should say to your pets when they are being rewarded with a “Pup-Peroni” or Doritos’ chips. If you say them to me, I am not really being a good “anything.” I’m just sayin’. IT’S SORT OF CONDESCENDING.


Talking loudly


People have a habit of speaking loudly to foreigners and the sick. Just because they are from somewhere else, speaking loudly to a foreigner will not help get your point across. There is no hearing problem involved. The same thing applies to me. HOW DOES SHOUTING HELP?


Talking slowly


Talking slowly to a foreigner might be an asset. But talking slowly to me makes me feel mentally disabled. How would YOU like it if someone said, “How — are — you — feeling — today?” If I could, (and I wasn’t able to then), I would have talked quickly in response, possibly making them change their way of speaking. I REPEAT–HOW WOULD YOU LIKE IT?


Making faces at me


Stroke patients are difficult to understand at times, but please don’t squint, or turn your mouth to one side, or wrinkle your nose at me. Just ask me to repeat my statement, and if you still can’t understand, ask the question in a different way. After all, you’re the one with a full brain! SO USE IT!


Talking over me


I mostly listen, but when I get up the courage to speak, let me do it. Don’t interrupt me in the middle. In other words, LET ME FINISH!


Completing your sentence


Some people find the right word choice instantly, but it takes me a few seconds more. So please stop trying to fill in the blank. WAIT! I’LL GET IT!


Giving me lists of things to do


If you give me a list five or more things to do, I’ll may miss one. My brain is going, but the parts that are dead…well, simple died and there’s no hope of getting them back. Did you ever hear that heavy drinkers lose brain cells and the cells won’t be replaced? Same thing. YOU HEAR THAT, HEAVY DRINKERS?


Ignoring me as if I’m invisible


Once in a while, at Rehab Y, I would see doctors on the outside. If I’m waiting at a new doctor’s office, for example, staring right at some person who’s in charge, the person invariably stares at my friend to find out what my friend wants, forcing me to shout and look like an idiot–which I am not. I shouted several times in person but even more on the phone. Some of the people just don’t listen and say their “shpiel” regardless if I object. FOR CRYIN’ OUT LOUD, I HAD A F***ING STROKE. GIMME A BREAK!    


Saying I’m not moving fast enough


Once in a while, people will say something to the effect, “Could I get by you?” and start moving before they even hear the answer. Their rhetorical question, because that’s what it really is, a few times cost me my balance. WHY ARE PEOPLE IN SUCH A HURRY IN THE NURSING HOME?


Hanging up on me


A lot of operators hang up on me. They are nameless and they take advantage of that fact. But it doesn’t help me. WHY WON’T THEY WAIT?


———-


Remember–I said or did the same things myself to stroke patients because I never “walked in their shoes.” So now, do you feel better? 

The post 10 Things Not To Do or Say When You’re With a Stroke Patient appeared first on The Tales of A Stroke Survivor.

What It Was Like Taking Dance Lessons With Cerebral Palsy

When my boyfriend suggested signing us up for a dance lesson at the local dance studio, I felt hesitant. Aside from just under two years of ballet lessons as a child, I’ve never danced — and for good reason. I’m not a good dancer, and I worried my disability could easily prevent me from being able to learn the steps at all.

I told him that dancing sounded awesome and that I was excited to try it out — but I felt full of anxiety. Despite my boyfriend’s insistence that he’s a “bad dancer” and his life philosophy that trying new things is usually either a whole lot of fun or a funny story, I was reluctant to believe that taking a dance lesson together would end up OK. Visions of being rejected from my junior high school’s play on account of my dubious dancing abilities played in my head for days on end, and I envisioned our dance lesson culminating in a dramatic movie-style breakup.

Boyfriend: “I love you, Kelly — I really do — but I can’t do this anymore.”

Me: “You don’t even need to explain it — it was the dancing, wasn’t it?”

Boyfriend, carefully skirting the question: “I’m sorry, I just… think I need to go.”

Me: “Babe, no, don’t walk away. I can change! I promise! The dance instructor said I’ll get better!”

(Ex)Boyfriend: “This just… doesn’t feel right anymore. Bye, babe.”

Me: Incomprehensible sobbing.

When I wasn’t imagining the demise of my relationship, I was recalling every episode of “Dancing With the Stars” I’d ever seen. The celebrities always looked like they were doing amazingly, and then Len Goodman would kill the mood by giving them a “five” or a “six” for their performance. Then, the celebs and their partners — still with sweat beading from their foreheads — would dejectedly walk offstage so that another (un)lucky couple could take their place on the dance floor.

(I think it’s fair to say that my rejection from the seventh grade play did a number on my self-esteem.)

Our dance lesson crept closer, and I tried to appear excited about it — all the while secretly hoping it would get canceled. The week of the lesson, I took extra care to notice how my body was feeling. Was my throat scratchy? Was my nose runnier than usual? The answer was “no,” so I mentally scanned my body for signs of pain, fatigue, and muscle tightness. I wasn’t in pain, I was no less fatigued than usual, and my muscles were as tight as they always had been — but not unbearably so. We were going to dance.

That night, my boyfriend and I shared our hopes for our dance lesson over dinner. His excitement was rubbing off on me, but I was still anxious that my cerebral palsy would prevent me from successfully learning to dance. I tried to keep an open mind, though. This could be fun. 

We rushed into the dance studio — past a group of intimidating, skilled-looking dancers — into the reception room. A few minutes later, we met our dance instructor, who seemed bubbly and sweet. When we were talking with her, my boyfriend made it clear that neither of us had any dance experience — and we were both self-proclaimed “bad dancers.” I began to feel relieved.

Shockingly, my anxiety dissipated as we began dancing. As we learned the merengue — which basically involves marching to the beat of a song — I realized that I was dancing, and it even felt easy for me. Somehow, our instructor was able to cram three or four dance styles into our 30-minute lesson and still teach us the basic steps — all the while praising us and making us feel successful. We were both impressed.

After the lesson, my boyfriend and I were bubbling over with excitement as we recounted our dance experience. 

“I loved dancing with you,” he said.

“You’re a great dance partner,” I responded. “Tonight was really fun!”

As the words escaped my lips, I couldn’t believe what I was saying. I genuinely enjoyed dancing, and my boyfriend did too. Instead of dance lessons breaking us apart, they bonded us further — and we both felt a new sense of passion blossom.

We loved our first dance lesson so much that we signed up for more — and just over two months after our first lesson, “dance night” remains one of our favorite days of the week. Our instructors have encouraged us every step of the way, and every week, we see ourselves improve. The steps have gotten a bit more challenging for me as we progress, but they’re far from unmanageable, and I’ve felt my body become stronger over time. I love dancing hand-in-hand with my boyfriend, and I also love that I’ve found a way to move that feels comfortable to me after years of internalized ableism and a struggle with compulsive exercise.

When I dance, I don’t feel “confined” like I feared I would — I feel free. I’m forever thankful that I decided to toss away my self-doubt and dance with my disability instead of fighting against it.

The ‘Paper Plane’ Journeys That Help Me Cope With Multiple Sclerosis

What do you do when you don’t fit in the box? When you are not like everyone else? How do you find solace?

Everything and nothing in my life is normal. Filling prescriptions, doctor appointments, and physical therapy are a part of my daily schedule.

I can be in a store and not remember what I need to purchase. Out of nowhere, my left hand can stop working. I can be at my own home and for a moment, a very scary moment, forget where I am.

Those kinds of fears follow me into my dreams. When I go to bed, I have no control. I run all around in my nightmares trying to escape those realities. Causing me to lose sleep. To wake up crying. To feel there is no escape. Afraid I’m going to get used to the pain. Make my misfortunes an acceptable way to live.

As a result, sometimes I use my mind to elude my circumstance. My imagination always shows me a better existence.

When I feel out of place. And maybe I shouldn’t be here. When I want to move to the other side of the earth. Possibly the other side of the moon.

When it just gets to be too much. I’m ready. Ready to get away. Suspending all disbelief. I close my eyes and board my paper plane. Meditating about the joy of living free from symptoms. Sitting in silence. Waiting for nirvana. Wishing my troubles away. Relax, fantasize, and dream.

A retreat. Spending some time not in this place. Taking an airlift in my thoughts to a vacation spot. Where there is no gravity.

Living high. First class. Flying 30,000 feet above the ground. No turbulence. No crying babies. No fasten seat belt signs. Just calm skies.

Staring out the window. Observing passing landscapes. Seeing familiar images in the distance. Watching my life form in the clouds. Viewing myself as young and energetic. Driving my car around town. Going on shopping sprees at stores. Putting bags of clothes in my trunk. Bicycling down the street. And jogging in the park. All things I can no longer do.

Those were happier times. And I’m reliving them again. Images so vivid. Clear as day. Playing like a movie right in front of me.

I try to stay as long as I can. Because when I live in my head, I do everything right. I feel safe. Escaping reality. Sleepwalking in my fantasies like I’m healthy even though I have trouble controlling my body when I’m conscious.

In my mind, I’m a nomad roaming the world like a lone drifter searching for answers to my problems. I’ve done it so much, sometimes I get lost in my dreams for a better existence.

And somehow after every getaway, when I land back on earth, my life becomes stable. Making me a much happier person.

And in the back of my mind, I’m always wanting to take another trip. Board another flight. Climb on my paper plane and float away.

How to Be a Good Pet Parent (Even When Your Depression Makes It Hard)

Having an emotional support animal is very helpful for a lot of people’s mental health. It’s a source of unconditional love, goofy antics, and cuddles that doesn’t care about how much money you make, where you’re from, or what you look like. A lot of people rely on emotional support animals, or just pets in general, to help keep them mentally afloat, but let’s not forget the reason a lot of people have emotional support animals is because they are in fact mentally struggling. 

Having an emotional support animal means that there is a certain amount of energy you’re going to have to devote to your animal every day so they can live healthy and happy lives, and in a lot of ways that’s good because it gives people a certain amount of accountability that they need to show up for every single day. While that can be helpful, what happens when you don’t have the energy to get out of bed even with an animal that you love and care for a lot.

Before I continue, I want to stress that I do believe that animal neglect can happen. If you realize that having a pet is too much for you and you cannot give it the care that it needs, find someone who can.

That being said, I’ve had numerous dogs over the past 16 years through varying different stages of mental illness. I’ve had pets when I’m stable, when I wanted to die, and when I was somewhere in the middle of it all. I can’t just stop taking care of my pets just because I’m depressed, so I’ve had to find workarounds for the really hard days. 

These tips worked for me. They may not work for you, and I highly suggest taking into consideration your animals’ behavior and training as that can heavily impact what clicks and what doesn’t.

Walking

If I can barely get out of bed, walking a dog becomes a whole separate task. Here are some alternatives for both pottying and exercising that I found.

1. Give your dog an indoor option.

Something that’s helped a lot is that both of my small dogs have been pee pad trained. I know some people don’t love them, but I have small dogs and I think it’s good to give them an indoor option any day because of their bladder. They create wee wee pads that are absorbent and save your floors (unlike newspapers), grass pads so the dogs still get the feel and pheromones that come with outdoor pottying, and some pet owners have even trained their dogs to use the toilet. That’s not me, but a wee wee pad works wonders. I’m fortunate in that my dog still prefers to go outside, so it’s only for emergency depression days, but I’m thankful nonetheless.

2. Ask a friend, neighbor, or family member to walk your dog.

This is a simple alternative, and I like to think asking for help is always a great hack. Asking a trusted individual who is good with your dog to walk them for a few days or a week or so could help give you the reprieve that you need.

3. If you have the money, invest in some new stimulating toys.

One of the largest reasons I have to walk my dog isn’t just because of pottying, but because I have a mini Australian Shepherd who will destroy everything I love if she gets bored and has too much energy. Making sure she still gets exercise and brain stimulation is crucial. I invested in a lot of toys for her so she has different options – squeaky toys, rip and crinkle toys, pheromone toys, you name it. That helps with her brain stimulation if I’m busy (read: depression napping). That, or I’ll make sure I’m playing with her from the comfort of my bed or couch. A ball or rope toy (be careful with which ones you buy because they can be dangerous if ingested) allows her to still play while I don’t have to leave my seat. If you have the money and outdoor space, I know some pet parents get machines that throw the ball for the pet so they can play fetch on their own. Some dogs (like mine) do need more exercise and stimulation, while others don’t! It all comes down to the pet.

Feeding

1. Once again, ask for help.

There’s nothing wrong with asking someone who lives close by if they can come over during a period of time that you know you won’t be able to get up (early mornings for me) and feed the dog. This means that you can sleep in, and make sure you catch the next feeding time.

2. Invest in an automatic feeder.

Some people use automatic feeders for this reason. It works primarily with dry foods, so this may not work if you feed wet or semi-wet food, but this could be a good solution if you do feed your pet kibble. 

Playing

1. Make sure your toys are available to your dog.

Some dogs are more self-sufficient than others. My dog is very good at picking up a toy when she wants to and going to town. It’s for that reason I try to make her toys readily available. I did hear from a trainer that you never want to have your toys always available, because they may lose interest, so make sure you switch out the ones available to them every now and then.

2. Puppy play dates.

Beyond this being great material for Tik Tok, ask a friend who has a dog (that you trust) if they can pet sit for a day or two, or if your dog can hang out with theirs. This way your dog gets some good playtime and stimulation, meanwhile you can take care of yourself.

3. Get toys that you can play with without leaving the comfort of your bed or couch.

I already spoke on this, but it also applies in this section too. 

Other options are available too. Having a friend pet sit if you need a week or so to yourself, or pet daycares and boarding as well. As long as your dog is getting what they need, temporary solutions like that shouldn’t be frowned upon.

Now as I said, these are living, breathing, caring creatures who love with every fiber of their being. If having a pet is too much responsibility when paired with your mental health conditions, it’s OK to do what’s right for them and find a suitable pet parent who can give them the attention and care they need. However, if all you need are minor breaks or slight adjustments, then I hope these tricks work for you. 

Love yourself the way you love your dog, that way you can be the best dog parent you can be.

A Cell Phone Which Became a Lifeline to the Outside World

I’m taking a break from talking directly about strokes and other TBIs to discussing something related. We take for granted credit cards and Kleenex if we’re going out–but what about the extraordinary cell phone, especially for stroke and other TBI survivors.

The cell phone, that little piece of plastic wonder, has become my lifeline for things like: 

  • Has my aide been delayed because it’s 12 noon and I expected her by 11?
  • Where is my needed medical stuff because it’s Wednesday and it was supposed to arrive Monday? 
  • When is the PCP appointment again?

We have become a nation of “right now immediacy.” The words “text” and “PM” and the sophisticated emojis weren’t in our vernacular around 20 years ago. Now they are, the words and symbols have come to mean so much to most people. All the young, yes! Middle age? It depends. All the elders, not so much.

Before we go any further, let me give you a quick rundown in order on cell phones. In the beginning, there were these around : 

Around the 70s
and then
Still, though some with a shorter antenna
Slightly improved
More improved
Now we’re talkin’
Flip phone now
Flip phone–larger screen
Smug Jobs, rightfully so
Now, we’re back to the flip phones again. What goes around, comes around, I guess.
——–
All I want  the cell phone to do is give me messages, write messages, make and receive calls (and take a picture once in a while of my bruised and battered face to remind me not to do THAT again), and look up things that few people know.
——–
Do you have the order yet? Cell phone first, then credit cards, Kleenex and whatever else you need. So is a cell phone a lifeline? You’re darn right it is, at least to me!

The post A Cell Phone Which Became a Lifeline to the Outside World appeared first on The Tales of A Stroke Survivor.

Stroke and Gut: There’s a Connection

I have a sensitive stomach, and ever since my stroke, more sensitive, which I didn’t think was possible. I wanted to know WHY! In other words, is there a connection between stroke and gut?

Harvard researchers found stomach problems could be linked to after-stroke stress. In fact, the gastrointestinal (GI) tract is sensitive to anxiety, anger, depression, and sadness, too (all of which I’ve had post-stroke), and it can trigger symptoms in the gut. Therefore, the brain reflects what the GI system feels. Stress is the worst, the researchers concluded. (Fun fact: I used to consider giving a stressful TED talk about stroke; I’m not anymore). 


In an article called “A Hidden Factor in Stroke Severity: The Microbes in Your Gut” by Jordana Cepelewicz, she talks about a new study in mice which demonstrates that manipulating the microbiome [the genetic material of all the microbes – bacteria, fungi, protozoa and viruses – that live on and inside the human body] can influence the extent of brain damage caused by a stroke. 
 

A study involving mice, published this week in Nature Medicine, argues that striking the correct microbial balance could prompt changes in the immune system that would be likely to reduce brain damage after a stroke.

Researchers at Weill Cornell Medical College and Memorial Sloan Kettering Cancer Center wanted to find out whether they could shift the balance of these cells to favor beneficial cells by meddling with the mouse bacteria. 

So one group’s intestinal makeup was resistant to antibiotics and the other group bacteria was susceptible to treatment. When the latter group was given a combination of antibiotics over the course of two weeks, the microbes underwent change. Then the researchers obstructed the cerebral arteries, inducing an ischemic stroke [the most common type of stroke]. They discovered that the resultant brain damage was 60 percent smaller in the drug-susceptible mice.

Finally and painstakingly, the researchers took the colons of mice that had ischemic stroke and transplanted to new mice with no antibiotics, thus establishing a group with finagled gut bacteria but no drug exposure, and discovering that these mice had also acquired protection against stroke. 


“These cells determine what kind of inflammatory immune response the brain is going to experience after stroke,” says neurologist Constantino Iadecola, director of the Brain and Mind Research Institute at Weill Cornell and one of the study’s authors. “Immune cells end up helping out instead of contributing to the damage that occurs.”


A mouse’s genetic material is quite different from that of a human, and researchers will need clinical data, but at least they’re trying.


“This is just the beginning,” says Ulrich Dirnagl, a neurologist at the Center for Stroke Research Berlin who read the results. “The study links the microbiota and the immune system and the brain in stroke—an acute brain disorder—in one story. That’s really novel.” 


That it is, Dr. Dirnagl. That it is.

 
From the Journal of Digestive Diseases Foundation, a study was done to emphasize the GI problems that happen with stroke survivors which is directly associated with their quality of life.  


Stroke patients were evaluated for common gastrointestinal symptoms including type and site of stroke admitted over an 18-month period with symptoms of vomiting, dysphagia (difficulty swallowing), constipation, masticatory difficulties (including the muscles of the lips and tongue and the vascular and nervous systems supplying these tissues), and sialorrhea (drooling or excessive salivation), among others. 


There was no significant difference in GI symptoms in either sex, site or type of stroke, except that constipation and incomplete evacuation were commoner in ischemic stroke. 


The American Academy of Neurology says that people who have GI bleeding after stroke are more likely to die or become severely disabled than stroke survivors with no GI bleeding.


“This is an important finding since there are effective medications to reduce gastric acid that can lead to upper gastrointestinal bleeding,” said study author Martin O’Donnell, MB, of McMaster University in Hamilton, Ontario. “More research will be needed to determine whether this is a viable strategy to improve outcomes after stroke in high-risk patients.”


The study focused on 6,853 people who had ischemic strokes, and of those, 829 people died during their hospital stay and 1,374 died within six months after the stroke.


A total of 100 people had gastrointestinal bleeding while they were in the hospital. In more than half of the cases, the GI bleeding occurred in people who had less severe strokes. Of those with GI bleeding, 46 percent had died within six months, compared to 20 percent of those without GI bleeding.


The study was supported by the Canadian Stroke Network, the Ontario Ministry of Health and Long-term Care, the Canadian Institutes of Health Research, the Institute for Clinical Evaluative Sciences, and the University Health Network Women’s Health Program in Toronto.


Patients with ischemic or hemorrhagic stroke are at risk for systemic complications, says the National Institutes of Health. No study to date has addressed causes of gastrointestinal hemorrhage in stroke, but the researchers intuitively assign the bleeding to stress ulcers. The study focused on 17 patients with gastrointestinal bleeding after stroke which is rarely severe and may not contribute significantly to mortality. 
 
Hmm. So the two latter studies contradict each other on mortality, but studies are like that: if you want to prove a point, do a study. But one thing is for sure: GI bleeding, or any other bleeding, for that matter, is not good. And when you have a stroke, it’s really not good. 
 
In my mind, I wonder whether for the ones that died abused their bodies through excessive alcohol use or they ate cholesterol-rich fast food pre-stroke or it was a case of hospital errors. Who knows. Neither of the studies addressed that issue. Whatever the case, if you’re a sufferer of GI bleeding, depending on the origin of the bleed, and if there’s no other option, surgical intervention may be appropriate.
 
I’m reminded of the famous quote:
Into each life some rain must fall. 
Henry Wadsworth Longfellow
 
And this is my quote:
Sometimes, life is a torrential downpour. With a stroke, life becomes a never-ending tsunami. 

The post Stroke and Gut: There’s a Connection appeared first on The Tales of A Stroke Survivor.

Staying Out of a Nursing Home

Today I got a splinter in my sound hand as I walked down my front steps while holding onto a wooden railing.  Thank God I know how to remove a splinter one-handed so I do not need live in a nursing home to get nursing care.  My mother removed splinters by picking at the skin over the splinter with the end of a sewing needle.  This was painful and required delicate fingertip pinch.  A stroke took away my ability to grasp a needle between my thumb and index finger.

My solution is to use a rasp which removes callouses on the bottom of the feet.  I trap the rasp on a counter with my affected hand.  Then I rake the rasp over the splinter.  I apply gentle pressure and make repeated passes to slowly remove skin.  Today the splinter popped out as soon it was fully exposed.  I followed with Betadine solution.  CAUTION: This method only works for splinters that are close to the surface.

I also know how to put a band aid on my finger one-handed.        I put the band aid close to the edge of a counter.  I put the affected area of my finger on the pad in the center.  Then I roll my finger to the left to get the left side of the band aid to stick to my finger.  Without lifting my hand I roll to the right so the right side of the band aid sticks to my finger.  There is usually a small tail that is not stuck down so I grab it with my teeth and stick it to my finger.  A 2nd reason I do not need to live in a nursing home to get nursing care.  homeafterstroke.blogspot.com

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. 

The post 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 appeared first on The Tales of A Stroke Survivor.

Downsizing Begins

After my visit to an independent living center in Michigan, the reality of downsizing became real. After I drew my furniture on a grid it became clear that the one bedroom apartment I can afford is too small for my beloved oak furniture.  For example, it took me two days to empty my desk and find a tiny alternative.  I am testing the efficiency of my new arrangement instead of waiting to figure it out as I unpack in a new environment.  It is better to find out now what I really need and what I can live without.  I took photos to help me remember the complicated new configuration.  homeafterstroke.blogspot.com

From 200 pound monstrosity to

 

My old night stand

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