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Confabulation is when people, a significant portion of Traumatic Injury Injury (TBI) survivors, have gaps in their memory and were asked to recount the details of past events. Rather than saying that they don’t know, people minds furnish missing details with confabulated memories of the incidents.

People who are confabulating can’t help it. They are not making an intentional attempt to lie. Rather, they are confident in the honesty of their memories even when somebody else challenges them. People who are confabulated are not conscious that their memory is incorrect, and they are not lying to deceive or manipulate others. 

The post Are You “Confabulating” with a TBI? appeared first on The Tales of A Stroke Survivor.

The year has almost gone and I don’t remember where it went. Some things, sure, like my sons visiting often, the Capitol insurrection, some say the end of the pandemic (actually, it’s nowhere close to being over). But I forget most of what’s happened. WHERE DID 2022 GO? 

We had an ice storm a couple of days ago, as did most of the country, making its way from west to east. I feel tired all the time and not in the holiday spirit of gift giving and the new year. I find my bed to be where I’m most comfortable, reading the latest Nelson DeMille book, The Maze, again. Sometimes, I doze off. 

The COVID symptoms are returning, not full-blown COVID, but fatigue and my nasal congestion is at an all-time high and this morning, the beginnings of a cough again with no fever. I’m waiting for it. Yeah, I’m in a bitchy mood. Who wouldn’t be! I’m going to get COVID-tested tomorrow if I don’t out to be false positive, or false negative. What a joke.

I don’t have any new year’s resolutions except for one, albeit impossible: I want to grow up again with the insight of a 40-year-old, a Wayback Machine (remember Mr. Peabody and Sherman from the classic Rocky and Bullwinkle Show?) set to 1953 when I was 5, living my life again, despite the awful events in my upcoming memoir, like choose better (and not better-looking) friends, select a cut-above husband (who wants to happily participate in my children’s activities), and raise my kids differently (they turned out fine despite my loose parenting). 

It took me too long to learn empathy and compassion for others. I don’t blame my parents because they learned from their parents, except for the fact my parents set themselves as role models and I learned from them. That old adage is one of the best: You can pick your friends, but you can’t pick your family. 

I turned out all right, too, for the most part, except for goofy mistakes which I made, and just recently. But the mistakes got fewer as I got wiser. I once threw a surprise party for my husband and vacuumed meatballs that I dropped in my 20s and I learned. The vacuum repair guy said, “If I didn’t know better, those look like meatballs stuck in the vacuum.” I laughed along with him, until he said, “What are those things clogging your vacuum?” I said I didn’t know because it was my friend’s vacuum.” The things I did…. 

So I can’t give you my kitschy pictures above each of my top ten new year’s resolutions at the end of this year and the Wayback Machine never existed. I have to live with my mistakes though I have to tell you, the meatball story is my kids’ favorite.

So I will say, “Have a good year, better than the last three, the best place to celebrate the new year is at home, and become a vegan. No meatballs on the menu to drop although I want to try garbanzo bean meatballs. If you do drop the meatballs–vegan or not, Walmart has a deal on vacuums. 

The post The Impossible New Year’s Resolution appeared first on The Tales of A Stroke Survivor.

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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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.

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.

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.

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.

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 : 

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

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). 

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.

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.