I'm stubborn, but there comes a point where I will say, explain your side of the equation. Then I listen closely to perhaps form a new opinion, different from the first, on the subject at hand.
I wrote a blog post in Facebook recently that said a stroke gives you nothing positive. And I meant from the physical side in having one. But too late for post-written clarifications. That post received one on most vitriolic reactions since I started the blog 12 years ago.
So, of course, positivity and stroke bothered me. When brain injury occurs, for many survivors, they consider it a hiccup to life's plans. I'll get better, they tell themselves, and as the months go on, the confidence wanes because they are not getting better at the speed they want. With only one hand on the non-affected side and one affected leg throbbing and tingling and constantly going into random spasms, they are subject to give up hope.
Nahal Mavadatt et al wrote in a scholarly study or post-stroke and positivity. "Post-stroke psychological problems predict poor recovery, while positive affect enables patients to focus on rehabilitation and may improve functional outcomes. Positive Mental Training (PosMT), a guided self-help audio shows promise as a tool in promoting positivity, optimism, and resilience."
The researchers believe that PosMT works, but depression among stroke survivors often negates that option, having stroke dictate the course of things rather than looking forward to an optimistic future by the people themselves. Attitude comes all the way down the pole. Look up "Positive Mental Training for strokes." You'll see a long list of possibilities to buy. Do they work?
Having heard over 350 stories in my Brain Exchange organization, co-founded by Sara Riggs, I am convinced, just like snowflakes, no two stories are the same and the old adage rings true: every stroke is different.
Robert Perna and Lindsey Harik, in another study, said, "Psychological disturbances may affect rehabilitation outcomes through a reduction in adherence to home exercise programs, reduced energy level, increased fatigue, reduced frustration tolerance, and potentially less motivation and hope about the future."
Of course, that's true. With up to 75% of stroke survivors having some physical impairment that affects each of those points, young to old, how can it not!
So what, if any, are the positive effects of having a stroke? Yes, there are some. Stroke survivors say:
The ASA also says for every minute a stroke is left untreated, up to 2 million brain cells die.
Scared yet? You should be. But the 80 percent of known risk factors didn't apply to me. I had Protein S Deficiency, a genetic disorder that causes blood clots, or blockages, to the brain.
But better news. There's a blood test for Protein S Deficiency which is a disorder of blood clotting. People with Protein S deficiency are at risk of a type of clot called a deep vein thrombosis (DVT) that occurs in the deep veins of the arms or legs.
I found out from the Emergency Room doc--after I had fallen 3 times in 2 days from the lack of power in my stroke-disabled, weak leg--that I tested positive for COVID; me, who is basically a shut-in while pandemic surges forth.
So I had to go to a rehab facility for the falls, to once again reclaim the strength in my feeble leg. Because of the COVID, once they found one that would even ACCEPT COVID patients, I went. Three days after I was there, I really thought that the time had come for me to die. At 2 am, I wrote my sons burial instructions and some relevant memories of all three of us as my breathing was impeded by the enormous congestion.
At 6 am, the tide had turned. I slowly became less congested in the weeks to follow. But I was still positive. Everybody--the CNAs, the nurses, the doctors, the therapists, the clinical social worker--who entered the room wore a long gown that hovered above the floor. Nobody knew why when I asked them. They had face shields and N-95 masks, and I started to feel like pariah, diseased and isolated.
After the third week, I was tested again, and it was negative. Off came the workers' gowns, off came the face shields. But they still wore N-95 masks. I had to wear a mask when I exercised in the hallway. But some other patients in the hallway were maskless. I didn't understand why nobody told them!
It was a clusterfuck for sure. I didn't say anything to those patients, escalating their misery to have gone to rehab in the first place. But why didn't the CNAs or the nurses say something about their maskless faces? I understood the answer after a few seconds on thinking about it. NO ONE, EVEN THE SUPPOSED EXPERTS AND RESEARCHERS, KNOWS THE ANSWERS!
As Jimmy Dore, my favorite podcaster, says, "You're all going to get it [COVID]." The vaccinated usually would feel less of the symptoms longterm, but Dore who was vaccinated still feels awful after the 2nd Moderna jab, has joint pain, and still experiencing a stiff neck on same side the shot was administered.
I'll say it again: NO ONE, EVEN THE SUPPOSED EXPERTS AND RESEARCHERS, KNOWS THE ANSWERS! You just have to live with it, whatever the consequences are. Or not.
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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:
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!
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.
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
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.
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:
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.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?
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.
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!
