4 Things That Stroke Survivors Think About, Whether They Admit It Or Not

There was a commercial back in the 90s. A man, supposedly talking to potential drug users, holds up an egg. "This is your brain." [cracks the egg on the frying 

pan] After watching the egg fry for a couple of seconds, the same man says, "This is your brain on drugs. [pause while egg fries] Any questions?" Great analogy. 

There are therapies out there for drug users and if they don’t leave before the therapy is finished, and if they don’t do drugs ever again, chances are they will recover fully. Same thing with alcoholics. Don’t leave the therapy before it’s finished. Don’t have another drink ever. 

Not so with the brain-injured. There are not chances for full recovery no matter what you do more often than not, and here is where the 4 things come into play. People say “stuff” when they come to visit a stroke survivor, and the stroke survivor, maybe glad of the company, doesn’t say what’s in his or her mind. But the survivor is thinking for sure. As long as you’re not in a coma, this is what the visitor says, and this what the survivor thinks: 

 Visitor: You look great! 

 Stroke survivor’s mind: Do you have any idea what I am going through? I feel terrible inside. What do you mean? Do I look like the last time you saw me? 

Visitor: What are you trying? 

Stroke survivor’s mind: Am I looking lazy? Are you keeping a tab on what I am doing? Overseeing my progress? I am stressed out over the things they make me do. 

Visitor: Let’s be positive. 

Stroke survivor’s mind: This injury feels like hell. I am tired of fighting it. And I need to put up some extra effort to assure you I look positive? Screw that! 

Visitor: You need to learn to treat it like normal. 

Stroke survivor’s mind: Come on! This is by no means normal! I am not stupid! I have been trying so hard, okay? So please shut up and stop lecturing me so cluelessly! 1

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People say stupid stuff. That’s a given. But if you go and visit a brain-injured person, remember these things, and just stop. Talk about the weather. Talk about a movie or a just completed book. Talk about a meal. But for cryin’ out loud, don’t say these 4 things. OK? 

1: This experiment–what stroke survivors are really thinking– comes from an exercise Daniel Gu was conducting in which Brain Exchange members had to think of what Wendy–a fictional character who is also a survivor–would think to herself when asked. Kudos, Daniel, for reporting back so efficiently about these glaring 4 things.

Younger or Older: If You’re Destined to Have One, When Is It Better to Have a Stroke or Other TBI?

 

I had a stroke in 2009 and I was 61. So the question I continued to ask myself, even now 13 years later as soon as I came out of the coma, is it better to have youth on your side or is it better to have a stroke or other traumatic brain injury in your twilight years? There are pros and cons.

Before 50 

Pros: Ah! Youth! The advantages to having a stroke when you haven’t reached 50 yet have things to do most with recovery. As a rule, the younger you are when things went haywire, the faster the recovery will come. Of course, there are exceptions, as with any rule, and I don’t have proof that if you have a stroke before 50, there will be clear sailing from that point on. But the chances are greater. Watch this video:

https://www.youtube.com/watch?v=VGuBMroX7c8

Cons:  You’re just starting or in the middle of your career, whether you’re a barista or middle management, really everyone who works, as a matter of fact, when suddenly, because that’s all it takes, nothing. Depending on the severity, you may not be able to return. And if you return, prejudices come into play. All eyes are on the TBI survivor and that alone may make you screw up. They, the powers that be, see that you’re different, even if you’re not. Depression is greater in the under 50 crowd because you feel cheated. Emotions are stronger like guilt and frustration may come into play greater than the after 50 group.

After 50

Pros:  You understand sooner the whys and wherefores, limits and foolishness of your actions. You may feel like a grownup for the first time in your life, and that’s a good thing. You take absolutely nothing for granted. You start thinking about support groups, where laughter is the best medicine. 

Cons: You may think about death more and, even though you won’t feel it, how cold you will be six-feet under. Older people fall. It’s just the way it is. And having a fall or, to lesser extent, even an accident, sometimes results in a stroke or other TBI, and in that singular moment is the better part than what comes after, like lingering headaches, double vision, nasty incontinence, just to name a few. 

TBI survivors, do you feel the same way? No doubt some of you do, barring the exceptional ones like the survivor in the video or the ones who hide behind their positivity in a glass shell, ready to be shattered at any moment with another TBI!

Important Tips and Considerations When Researching Senior Care Facilities

This guest post was written by Claire Wentz at CaringFromAfar.com who wants you to know the scoop on choosing the right senior care facility. She has links to other websites which I found extremely helpful. I have faith in Claire that it helps if you're looking!

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Statistics show that seven out of every ten people will need assistance of some form during their lifetimes. In 2018, over 900,000 individuals resided in residential care facilities. According to the numbers, individuals entering their 65th year have a close to 70% likelihood of requiring some kind of long-term support or aid in the future.

If your loved ones have reached the age where they need more help than you can offer, nursing homes or assisted living facilities may be the best option. However, locating the right one involves many considerations. The Tales of a Stroke Patient presents the following article on what you need to consider when researching senior care facilities.

Does the Establishment Provide the Services Needed To Fulfill Your Loved One's Special Needs?

Not all facilities possess the means to provide specialized care. For instance, not all of them have the resources and trained faculty to deal with problems arising from dementia. Loved ones who suffer from Alzheimer's or a similar disease typically need specialized memory care services. Urinary incontinence is another condition that may require more care than some facilities offer.

Another factor to consider is that assisted living homes and nursing homes are not the same. If your loved one is unable to cook and needs around-the-clock medical care and extensive aid performing daily activities, a nursing home may be more suited to those needs. While assisted living facilities offer access to similar services, the aid offered is not as expansive and these establishments provide more independence, such as allowing residents to cook, share rooms and participate in a wider range of recreational activities. Visit facility websites, social media pages and the facilities themselves to verify exactly what services they do and do not offer. 

Does the Establishment Meet Certain Standards?

With all the news stories circulating about poor nursing homes, it has become even more imperative to personally check the quality of the institutions that will house and care for your loved ones in their remaining years. Read reviews to learn from other people's experiences. Talk to the staff and gauge their enthusiasm and competence. Individuals that seem to enjoy their work are often more invested in their patients and provide better care.

Ask questions, such as "Are the workers required to undergo background checks before being hired?" and "Are employees licensed and trained?" Is the facility equipped to deal with dietary needs and physical disabilities? Does it have safety and handicap measures such as clearly marked exits, wheelchair ramps, handrails and good lighting? How frequently does the staff check on the residents? Walk around and get a feel of the facility, if possible. 

Does the Establishment Fall Within the Affordable Range?

The average cost associated with nursing homes and assisted living facilities varies based on location. Medicare may cover a portion of the expense up to a certain time, while Medicaid can pay for all of it but has stringent qualification requirements. Pick an affordable facility.

If you need funds, one way to acquire them is by selling a home. However, beware of hidden costs and remember that there are other considerations such as realtor fees when figuring out how much you can make from the sale. For example, if there is a mortgage, you need to look at the outstanding balance. The price you set will also be influenced by the average realty prices in the area. If you need help figuring this out, there are helpful online calculators that can estimate how much you could make from the sale. This will give you a reasonable estimate on which to base your decisions.

Taking the time to perform research and evaluate each facility helps ensure your loved one lives in comfort. When choosing, considering the cost and closeness is also vital.

Brought to you by Joyce Hoffman and

The Tales of a Stroke Patient, the true story behind my hemorrhagic stroke and its consequences, including gruesome health professionals, frightful depression, and near-death encounters. I'll take you on the journey in this blog I've written for over 12 years, but be prepared for a bumpy ride. For more information, please visit my website or contact me today for the chance to do a guest blog!

If You Don't Believe in God, This Video Isn't Your Jam

Just because you had a stroke doesn't mean that you wronged God, or vice versa. Maybe, just maybe, He has another plan for you.

Clem Suder, the man who showed me faith again--he a Christian, I a Jew 

It's the "Why" of Post-Stroke Fatigue That I Wanted Answers To!

Hippocrates, the father of medicine, said long ago in ancient times, "Suddenly a healthy person is seized with head pain, immediately the voice fails, he snores, and the mouth is open (gapes), and if someone calls or moves, he only groans, nothing with meaning." He was describing apoplexy, which came to be as stroke around the 1700s. 

Though doctors now understand the causes and effects of a stroke, the condition hasn’t always been well understood. Even now. Apoplexy, or stroke, is a disorder in which a person falls with no warning yet retaining pulse and respiration. 

In all that time, doctors still don't everything? Stroke is the fifth leading cause of death and the first in disability around the world. Well, it's time to bring stroke forward to the front burner!

One of the things about which the doctors are puzzled is fatigue. Take me, for example. I need to nap sometimes, less often because I'm taking Vitamin B12, the energy booster. But if I feel that a nap is about to happen, I don't want to take a nap because it means later bedtime. Rather, I need to take a nap. 

I asked the pharmacist if any of my medicines could add to the fatigue which is becoming more prevalent recently.

"I see here on the screen that you didn't change medications for a few years. So why are you tired recently?"

He was no help. And no, it's not COVID. I was tested--twice recently. 

The American Heart Association claims, "Fatigue is frequent and often severe, even late after stroke. It is associated with profound deterioration of several aspects of everyday life and with higher case fatality, but it usually receives little attention by healthcare professionals. Intervention studies are needed."

And so it goes, study after study, that healthcare professionals admit more studies on Post-Stroke Fatigue (PSF) are needed, but few, if any, are being done.

From the National Institutes of Health (NIH): "There are some data that point to right hemispheric strokes being the cause of PSF. Damage to the brainstem has also been linked to fatigue. However, fatigue is so prevalent in the general population of stroke victims, the two types of stroke...do not completely explain the cause."

The NIH also goes on to say, "Fatigue may improve with time, but it can also be persistent and some patients may never be completely free of it. Tasks that may have come easily before the stroke may be harder and therefore require more energy than they previously would." 

I've done a formula and the result is this: compared to what I used to do, before the stroke, it now takes 3 times as long than the prior. 

So I guess we have to wait longer for the "why" role fatigue plays in most stroke survivors' lives. I don't know how much longer, but it won't be tomorrow, or even next year.

Emotional Intelligence: Most Brain-Injured People Have It

Do you know what Emotional Intelligence is? Let's pause for a moment and define it. 

Emotional Intelligence is not one or a few but ALL of your brain's mindset. They include the following:

• Social Skills
• Motivation
• Empathy
• Self Awareness
• Self Regulation

SOCIAL SKILLS

It's foremost to know where you are and where you're going. Otherwise, it's like trying to make a long trek without a map.  First, you won't know how to start. Second, you won't know if you are drawing close or just walking around your destination. That is, you understand what your current social strengths and limitations are. 

Brain-injured people, after awhile, should know their strengths and limitations. 

MOTIVATION

There are many theories that point to why people do the things they do. But my favorite is the Drive Theory in which people are motivated to an action to reduce the tension that is caused by unmet needs. You might be motivated to eat in order to reduce the state of hunger.

The drive theory is based on homeostasis, the idea that the body is working to maintain a certain state of balance.

Brain-injured people ultimately know what to do to avoid scary behavior that cause their equilibrium to go haywire, not at first but after repetitive falls, for example.

EMPATHY

Empathy is the ability to put yourself in someone else’s shoes to communicate that understanding back in return. It's the ability understand people's situation and feelings from their point of view.

Many brain-injured people say, "You can only know how this [stroke or other brain injury] feels if you were to see it for yourself."

SELF AWARENESS

From understood.org, people with self awareness can: 

• Recognize their strengths and challenges
• Understand and talk about their needs and feelings
• Recognize other people's needs and feelings
• See how their behavior affects others
• Develop a growth mindset and learn from their mistakes

Brain-injured should be able to accomplish all on the list, with practice and lots of it.

SELF REGULATION

Dr. Steven Stosny says in Psychology Today, "Consistent self-regulation requires focus on your deepest values rather than feelings. It's also the best way to feel better. Violation of values invariably produces bad feelings, while fidelity to them eventually makes you feel more authentic and empowered." 

In other words, taking feelings out of the picture, what is the right thing to do?

Most brain-injured people, at least the hundreds--maybe more--that I met online (and after awhile) are more patient and inwardly compassionate, looking at what is right--the core values--than focusing on feelings which makes you angrier, frustrated, hateful. 

To all of the brain-injured people out there, wouldn't you agree that I'm talking, with lots of repetitions, acquiring emotional intelligence is already almost there for you? If necessary, think about it and read this post again to understand my point of view. 

We got this, right?

My Blog "The Tales of a Stroke Patient and More" Has An Update!

I stand by that old expression that has been attributed to so many: "If it ain't broke, don't fix it." I hate change but accept it--eventually.  

So I'm happy to announce on this snowy Christmas eve that The Tales of a Stroke Patient and More blog has a new home. After over 700,000 readers around the world (except Antarctica), I switched apps, a treacherous step indeed, and so I had to change where it now resides: 

https://talesofastrokesurvivor.blog

Coupled with the location change was a name change. There were two: I dropped the article "The" and the unneeded "And More" in the title. And after almost 13 years, which just seem like last month, I am definitely a survivor.

My memory of that place, the dreaded rehab center in Pomona, New Jersey, still remains, and I'm reminded of another quote said by Edward de Bono: "A  memory is what is left when something happens and does not completely unhappen."  

Anyway, so there it is. New location. New name. (And just in time for the) New Year.

Like It Or Not, It's Time For This Stroke Survivor's Top 5 New Year Resolutions!

This year has been tough, more for some, less for others like me who occasionally don't mind being shut in the cocoon to write. But, alas comes the time for New Year's Resolutions. I love to write resolutions because it gives me words and actions to be accountable for. So here goes!

1. I will never stop being a vegan. Veganism gave me more energy where I only take limited naps a month. I restrict my diet to only vegan things and the one food that I loved--corned beef--I don't miss at all. 

2. I promise to do my exercises regularly. Three times a week was told to me when I started out. But now, everyday is advised by the physical therapist. Sometimes, I'm tired and just don't feel like exercising, but I'll take a power (15 minutes) nap and try again.

3. I want to see Brain Exchange flourish continuously because I have devoted the rest of my life to survivors of stroke and other traumatic brain injuries (TBI). Sara and I started Brain Exchange that sets up a writing partner 1:1, like the old pen pal program, to everyone who joins the initiative that is EXCLUSIVELY for stroke and other TBIers and meetings where everyone shares the struggles and joy, plus a Facebook group called Brain Exchange. If you know anyone who fits the bill, please have them look me up on Facebook.

4. The one thing every therapist said--physical, occupational, speech--in the 12+ year I've had my stroke is drink a lot of water to keep you hydrated. I like tea and coffee, and there's no difference with water for hydration. But herbal teas and decaffeinated coffee are fine because the caffeine will make you more anxious if you have more than two cups of the caffeine varieties. But I like fruit-infused water. Throw some lemon in your thermos of water and it's being hydrated with water and Vitamin C all at once!  

5. I will refrain from correcting anybody who says "supposably" rather than "supposedly." As Dictionary.com says: "While supposably is a real (if rare) word, most people will opt for synonyms such as possibly or conceivably. Because many mistakenly believe others using supposably is a mistake, a lot of people avoid supposably so as not to invoke the wrath of people who are supposedly grammar snobs." 

I learned something new. I am a snob.

6. I'm almost a third done my memoir and I want to finish it by 2023. I have everybody in there -- my family, my childhood, my adult years, my sucky marriage, my suckier ex-partner. But writing comes easy to me, and I'm resolute to publish it. Stay tuned, readers!

 

Fall Upon Fall: The Wheelchair Was the Logical Next Step

I received the news as what I perceived to be a bevy of people sitting in my living room four years ago. It was me against them, so many of them, I thought. And it actually wasn't a bevy.

"I regret to tell you that you're going to be in a wheelchair, now that you had six falls in the space of four years, until you build up your leg muscles," said the social worker, who was surrounded by a physical therapist, an occupational therapist, my caregiver, the nursing coordinator, and a student nurse who was looking sorrowfully at me. 

I thought the social worker was smug and must have said those words to other stroke survivors, and actually eleven falls in three years, to be precise, and I scoffed at the idea. Me, in a wheelchair. I was using the cane at the time, but with every fall, I regressed in my ability to walk, and my narrative followed.

"I just want to be where I was before the fall," I pleaded every time. But every time, my ability to walk was further back than it was the previous time. 

"It will be safer," the social worker continued. Safer, a favorite word of every PT. Nobody asked me if I'd rather be safer. Maybe I don't want it to be safer, I thought, obstinate, stubborn to a fault. Maybe I'll take my chances, see where things end up. 

Fast forward five years. I'm still in the chair, actually a transport chair, which a person behind me has to push once my legs get tired after 10 minutes of propelling myself. 

But when I took yet another ambulance to the Emergency Room and needed thirty stitches to close the tear on my good leg right down to the joint after hitting my leg on the dresser which had sharp brackets, leaving behind a bloody mess in the bedroom, I knew, at that moment five seconds after the fall, I would have no more. No more of any of it.

While I was in the hospital for three days, three things happened. First, my son and my aide rearranged the bedroom where my leg could hit nothing. The dresser was moved to the opposite wall. 

Second, I got a floor-to-ceiling which my younger son installed that helps me with both exercise and transfers. 

And third, Sara and I founded Brain Exchange, exclusively for stroke and other TBI survivors to write ongoing emails in a 1:1 partnership which keeps me busy throughout the day and is helping me forget about the nursing home hellhole I was situated in for five weeks.

The renowned Daniel Gu who had a stroke, the founder of Strokefocus, developed the sign-in form and logistical meetings among Daniel, Sara, and me, and ever-pleasant Anne Tillinghast, who didn't have a stroke, the musical director of The Backstrokes (a band of stroke and other TBI survivors of which I am a member playing keyboard, the others mostly string and percussion, singing and playing every week) assists the effort.

So all of this is to say, I'm better now, still having physical therapy at home, and thankful for the Thanksgiving that I will attend later today with my sons and son's girlfriend.

I haven't fallen for four months. Will I fall again? How the hell should I know! After every fall, I said it would be the last, and you see how well that turned out.

Can You Rid Yourself of Bad Habits and Thoughts Like Smoking and Strong Dislike With BWRT? It Worked So Far for Bobbie!

Hypnotist and Bobbie

As a stroke survivor, I once considered hypnotism as a way to walk fast again. The doctor said hypnotism doesn't cure weak, atrophic body parts. But then there's Bobbie.  

First, a little background. Bobbie is my caregiver, a word I hate except when Bobbie says it. She is a "real" caregiver, state-licensed, not somebody who goes into caregiving as a hobby or, worse yet, a past-time to get money for alcohol or drugs. I  had a few caregivers like that. (https://stroketales.blogspot.com/2020/12/being-comfortable-in-mind-and-spirit.html)

Anyway, Bobbie goes through, at least, a half of a pack of cigarettes daily. She smokes in the car with the window rolled all the way down and it doesn't bother me except for the fact that she has COPD, high blood pressure, and one heart attack around five years ago, and I don't want to lose her. Bottom line: Cigarettes aren't good for anybody, especially with her medical history. 

Since the day she arrived, she always said she wished she could stop smoking cigarettes, but she never did until now. She hired a hypnotist at $100 per session who uses Brain Working Recursive Therapy, or BWRT, as a method. She had her first session last Wednesday, and hasn't had a cigarette since. Two more sessions to go to reinforce.

Oh, she still has urges. She just squeezes her thumb in the fold when she feels that longing, most likely learned when she was "under." She takes care of her 80-year-old mom who lives 110 miles away on the weekends. That long drive is tough on Bobbie because automatically, she'd reach for that cigarette. But since Wednesday, she hasn't touched one. 

Bobbie will continue with BWRT because that method also aligns with getting rid of bad thoughts. Her sister and brother tried to pry guardianship of mom away from Bobbie in a couple of court cases, citing phony physical, emotional, and financial abuse. Her sister and brother lost every time. I know her mom and met her on many occasions. A more loving duo between Bobbie and her mother does not exist!

But Bobbie wants to be done with the hate and repulsion she has for her sister and brother. BWRT to the rescue! Her hypnotist says BWRT will work for that loathing, too.

As Mark Twain said, "The secret of getting ahead is getting started." And you got started, Bobbie! Woo-hoo! 

And if you have bad habits and/or thoughts, and who doesn't, find a hypnotist and ask about BWRT first before you spend your money. You'll eventually find one. It's worth the wait.