news - Southeast Brain Support for TBI and Stroke

14 Jul, 2022

Aphasia: 10 Insensitive Reactions to Someone Who Has It

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

I make a self-deprecating joke with aphasia when I often say, stumbling to find the exact word, “This here is aphasia in action,” naming it before people think I’m slow. But naming it or not, aphasia really sucks. I’ve had it April, 2009, because I had a stroke.

I’ve come up with a list the insensitives among us say when, after a few seconds, they lose my thread and start talking about something else. I want to say, “C’mon, guys, can’t you wait while I think of the word,” but I never say it. Why bother? I see that now. But early on, I wanted to change the world’s thinking about aphasia. What a dud I was.

Here’s the list of the top ten reactions people have for those with aphasia:

1. I have trouble understanding you

This statement cuts right into my soul. You’re speaking English. I’m speaking English. “So what’s the problem?” I say silently. To my ear, it sounds good enough, but to the person’s ear, it sounds incomplete, which it probably is. But still….

2. Supplying the right word

Oh, no! I want to be part of the conversation, and if you’d just hang on for a sec or three, the word will come to me. They won’t. But my aphasia is different from some, because the word that I’ll come up with, though in the ballpark of correctness, a word I’ve rarely used before. Example, we took a ride to the coast and when we arrived, I described the houses as “ramshackle.” I never know what’s going to come out of my mouth because I lost the filters when I had a stroke in 2009.

3. People finishing your thought

I can honestly say, “What the F is wrong with them?” Sheesh. Give a gal a chance. They think they’re doing me a favor, but the exact opposite happens. I resent them, and fairly soon, I want to leave the room.

4. Speaking sentences that NO ONE understands

I’ve improved, but early on in the first three years I spoke sentences that even after I was finished, I couldn’t understand. People just stopped listening soon after.

5. Making up words

I used words, back in the beginning, that weren’t really words at all, like “clockfer,” “greenac,” and “withand.” I know that I said them because early on (wanting to escape the aphasia which I still have not done completely), I used to tape conversations on my phone and recognize the errors. I was embarrassed but given the condition I was in, a little empathy please?

6. Inability to understand someone else’s conversation

In the first year after my stroke, I went to an art lecture on Picasso, and with the visuals right there in front of me, I had severe trouble following that talk. But people were annoyed that I “didn’t get it.”

7. Pronunciation suffers

On the first round, even after thirteen years, I still, like a little child, say “bisquetti” for spaghetti when I don’t remember to slow down my speech. It is also useful to say every part of the word in isolation and put it all together, slowly at first. Thus, I had the inability to pronounce words correctly, and some words not due to muscle weakness or paralysis because I could pronounce them if I slowed the heck down. Some people laughed. It wasn’t funny though.

8. Loss of reading and/or writing skills

In some patients with aphasia, reading and/or writing skills (usually both at first) are lost. This means that the patient is no longer able to comprehend written language or even express themselves through writing, all of which are necessary to communicate to emotion, language, and information using symbols, and even emojis. You can imagine what that loss does for self esteem. They have to start over. I’m extremely fortunate, as a writer, I didn’t have that affliction.

9. Spontaneous speech is rare for aphasiacs

I gave a speech to a stroke support group a year after the stroke in the Hershey Medical Canter in Pennsylvania, and though it appeared spontaneous, I simply read off the bullet points so fast, it seemed that the neural pathways were on fire for somebody in the back row who was simply listening and not watching the presentation. Spontaneous speech, also called off-the-cuff, is speech that happens without any planning having taken place, and the majority of aphasics, though they want to do it, simply are unable.

10. The facial expressions

I saw the frowns, and sneers, when I talked to people, even now, if the minds are already made up that this is a person (me) whom they won’t understand. I detest it though I can’t have any control over so I don’t worry about it like in the early years. I can try and talk slower and who cares what they think? If they call me slow and dimwitted, who cares?

Alexander Hamilton said it best: “We must make the best of those ills which cannot be avoided.” Hamilton may have been talking economics, but I’m talking stroke and other TBIs.

Different causes; same result. You have to learn to live with it! Now I say it, but in the early years, I was totally unforgiving. Here’s another famous quote: “It’s so hard being a person,” said by yours truly, Joyce Hoffman, in my thoughts, for I couldn’t talk for five weeks, April, 2009.

The post Aphasia: 10 Insensitive Reactions to Someone Who Has It appeared first on The Tales of A Stroke Survivor.

09 Jul, 2022

Why Do Stroke Survivors Lose Friends?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What are the takeaway thoughts? There are two.

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

The post Why Do Stroke Survivors Lose Friends? appeared first on The Tales of A Stroke Survivor.

04 Jul, 2022

My Dreams Have Changed

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

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

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

02 Jul, 2022

Warfarin: A Blood Thinner and Rat Poison

I got a brain bleed 13 years ago and I wasn’t supposed to live. I had Protein S Deficiency that gave me blood clots and didn’t know it for over half my lifetime until I was diagnosed with a hemorrhagic stroke. The neurosurgeon didn’t operate because the chance that I would have survived the operation was zero, having thick and plentiful clots in every extremity. Instead, I was put on Warfarin, another name for Coumadin, and here I am, a decade later.

A little background first. The only restrictions with Warfarin are too much Vitamin K intake, like lots of cranberries, broccoli, or leafy green vegetables. The most important thing with Warfarin is to stay consistent. By staying consistent, the doctor knows how much Warfarin to give me through a prothrombin time (PT), a test used to detect a bleeding or clotting disorder and the international normalized ratio (INR) used to monitor how well the blood-thinning medication called anticoagulant is working. I take blood tests frequently and I am stable.

So how could Warfarin, the wonder drug, and Warfarin, the rodent poison, be related?

A long time ago, in the late 1920s, the cattle and sheep in North America and Canada were dying from fatal bleeding, blamed on mouldy silage, (a method used to maintain the pasture for cows and sheep to eat later and stored in the silos when natural pasture isn’t beneficial, like in the dry season).

The cattle and sheep had grazed on sweet clover, a kind of hay. Hemorrhaging occurred usually when the climate was damp and the hay had become moldy. Tough times in the 1920s meant that farmers could not afford a replacement, so the hemorrhagic disease became known as “sweet clover disease.”

There were only 2 solutions, according to veterinary surgeons: destroying the moldy hay and having a replacement or transfusing fresh blood into the bleeding animals which was called “plasma prothrombin defect.”

But everything comes down to money, and even though the farmers were told not to feed the moldy hay, they did not follow the recommendation, and sweet clover disease remained, even a decade later.

By 1940, Karl Link, a biochemist, and his colleagues came upon a natural substance called coumarin, better known as dicoumarol from the sweet clover and was used as an anticoagulant, albeit an iffy one. The work was fully financed by the Wisconsin Alumni Research Foundation (WARF), who were given the patent for dicoumarol in 1941.

But in 1945, knowing that dicoumarol was a lengthy process in thinning the blood, Link considered using the coumarin derivative Warfarin as a rodenticide which had the reverse effect–slow bleeding until the little suckers bit the dust. Bleeding in who-cares-about-rodents fit the bill, and the compound was named Warfarin after the funding agency. It was marketed in 1948 as a rodenticide, and warfarin still exists today as both a rodent killer and a blood thinner.

In 1954, Warfarin became known as the go-to anticoagulant under the trade name Coumadin, and was approved for use in humans and, of course, rodents. But in humans, when there was still too much bleeding, Vitamin K foods reversed the effect. And too much Vitamin K led to clots. That is why I have to stay in the INR range of 2 to 3 when I get tested–above 3 could lead to bleeding and I have to take more Vitamin K; under 2 could lead to blood clots so I have to decrease my Vitamin K. Thus, I get tested every other week.

The mechanism of Warfarin was not discovered until 1978, when John W. Suttie and colleagues, in an “Aha moment,” proved that Warfarin alters Vitamin K by slowing down the enzyme epoxide reductase, known as VKOR, which is highly sensitive to Warfarin, the most commonly prescribed anticoagulant.

There it is, folks, as easily as I could say it. My trademark is, Know a little bit about a lot of stuff and you’ll get by fine.

The post Warfarin: A Blood Thinner and Rat Poison appeared first on The Tales of A Stroke Survivor.

30 Jun, 2022

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.

05 Jun, 2022

Positivity and Stroke: Toxic Duo or Optimistic Future?

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:

more tolerance for disabled people
increased empathy
additional patience
added compassion
interest in other kinds of disability

I notice it in myself, and I see it in those around me. So do you have to have a stroke in order to satisfy that list? I imagine you do, or be working in some kind of religious or healthcare occupation where those factors SHOULD BE a given. Please read The Tales of a Stroke Patient. In healthcare, trust me–they aren’t always.

The post Positivity and Stroke: Toxic Duo or Optimistic Future? appeared first on The Tales of A Stroke Survivor.

25 May, 2022

Stress and cardiovascular disease

The physiological reaction to psychological stress, involving the hypothalamic–pituitary–adrenocortical and sympatho–adrenomedullary axes, is well characterized, but its link to cardiovascular disease risk is not well understood. Epidemiological data show that chronic stress predicts the occurrence of coronary heart disease (CHD). Employees who experience work-related stress and individuals who are socially isolated or lonely have an increased risk of a first CHD event. In addition, short-term emotional stress can act as a trigger of cardiac events among individuals with advanced atherosclerosis.

23 May, 2022

COVID and the Rehab Facility: Talk About Clusterfuck

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.

The post COVID and the Rehab Facility: Talk About Clusterfuck appeared first on The Tales of A Stroke Survivor.

12 Jan, 2022

Episode Four: A Brutally Honest Confession – Aimless and Lost

In this episode, John Lavelle, an Army veteran who toured Iraq multiple times and a brain injury survivor offered a brutally honest confession of himself. The inner struggles a man went through after the Traumatic Brain Injury. The anxiety that tortures a man after his injury.

Listen to this episode. Tell us what you think.

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04 Oct, 2021

Fighting Back Against Crohn’s Disease

Dear Crohn’s disease,

You have the worst reputation among 3 million Americans from all walks of life who are affected by your “rein of terror.” Many patients with inflammatory bowel disease (IBD) have to deal with nausea, fever, constipation, the big “D,” and abdominal pain. There is also inflammation involved within different parts of the GI tract as well as abscesses or fistulas, which can make a person extremely ill if it’s not taken care of.

There are ways to pinpoint where you are hiding within the body. CT scans, MRIs, endoscopies, sigmoidoscopies and colonoscopies are some of the ways that you can be “tracked” down before decisions are made on how to best treat your manifestations.

Most gastroenterologists will try a variety of medications to keep you from further harming our GI systems. This way you’ll never wreak havoc for a very long time. Anti-inflammatory drugs, immune suppressants, or newer advancements, known as biologics, are always considered the first line of defense. Not everyone responds the same way to treatments since some can develop allergic reactions or are prone to getting an infection.

In case you didn’t know, the CCFA (Crohn’s and Colitis Foundation of America) chapters have dedicated “warriors” whose goal is to raise awareness about inflammatory bowel disease and have fundraisers within the community so the money goes towards research to develop a permanent cure.

So you see, my fellow “crohnies” and I will not give in to you.

“We are the champions, my friend, and we’ll keep on fighting…….. till the end.”

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