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.

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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.

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. 

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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.”

4 Things to Keep in Your Schizoaffective Disorder Self-Care Kit

Life with schizoaffective disorder can be rough sometimes. Between the symptoms of psychosis and the mood symptoms, things can get chaotic. That’s why it’s important that you take time to take care of yourself. Getting enough sleep, eating well, and exercise are always helpful, but here are a few more things to consider adding to your schizoaffective disorder self-care kit.

1. A weighted blanket or stuffed animal.

Whether you’re hiding from symptoms that are bombarding you, trying to slow your mind down, or organize your tangled thoughts, weighted blankets can be a great tool. They can help soothe anxiety and let you escape from the world for a while. They come in multiple different weights and styles. The rule of thumb is to choose a blanket that’s 10 percent of your body weight, but do what feels most comfortable for you. The downside is they can get expensive, but if the cost is too high, having a pet, or even another human, lean or lie on top of you can create a similar effect.

No matter what your age, a weighted stuffed animal can also provide some much needed comfort. Some have arms to wrap around you like a hug, and others can be heated up in the microwave, often accompanied by built-in aromatherapy. Many weighted stuffed animals can easily ride along in the car or accompany you to appointments. If you’re not comfortable taking your stuffed pal out in public, you can still enjoy the anxiety-reducing effects at home. Weighted stuffed animals come in a wide range of weights, features, sizes, and adorable creatures at a variety of price points.

2. Music is a staple in my self-care kit.

It can help me drown out my auditory hallucinations, soothe me, and even make me feel less alone. I’ve got playlists for all my different needs and moods. The only thing to keep in mind is the impact it can have on your emotions. As much as I love to listen to music that reflects whatever brokenness I’m feeling, it often only makes things worse if I’m already on that downward spiral. Even if it feels weird at first, I find putting on upbeat music when I’m down can help lift my mood at least a little bit. Dancing or singing along helps, too! Whether you prefer headphones or blasting a speaker, put on that song that makes you happy and let the music flow.

3. Something to keep in your pocket with a soothing texture, or something you can fidget with.

When mood symptoms send your emotions on highs or lows or both, something that can be really helpful is something you can fidget with or that has a texture that’s calming. It can be anything — a smooth stone, a pocket-sized stuffed animal, a fidget toy, or anything else that helps make your mind and emotions a little less chaotic. Tactile sensory stimulants like these don’t have to cost a lot of money, if any, to be helpful. One of my favorites is a smooth stone a friend found at a beach.

4. Spaces where you feel safe.

Some days, symptoms can make being around others stressful. At other times, it’s important to be surrounded by others to fight feelings of isolation. Because of this, having both a quiet safe space to go to when your symptoms are flaring and you need to be alone, as well as a place you can go where you don’t feel alone are vital. In some cases, you may need to create a space for yourself where you feel safe alone.

During my first year with schizoaffective disorder, my room became a dreaded place, but I had no other private place to escape the world. A little rearranging to open and brighten up the space made a huge difference. With fewer shadowy places, I was less paranoid about seeing hallucinations emerge, and my room became a place where I could feel calm. In my current home, I plan on creating a collapsible safe space by keeping the other tools in my self-care kit tucked away where they can easily be brought out to transform a portion of a room into a happy, soothing space when my symptoms or the fear of having symptoms becomes too much for me to handle.

In whatever way you choose to do it, self-care matters. 

Self-care is so important, not just for living life in general, but also when living with distressing symptoms like hallucinations and mood symptoms and the anxiety that may go along with them. Whether you use the ideas on this list or come up with something more your style, I hope your self-care kit helps make life with schizoaffective disorder a little bit easier.

You can follow Katie’s journey on her blog, Not Like the Others.

6 Common Sleep Myths

Sleep disruption is one of those symptoms that often gets pushed aside in stroke recovery. It’s understandable. You’re likely dealing with a lot of changes and getting better sleep is the last thing on your mind. But getting better quality sleep can help you recover.

Continue reading “6 Common Sleep Myths”

Why Do I Have Post Stroke Fatigue?

 This question was asked by me to the Strokefocus.net Forum and the answers come from my researching Post Stroke Fatigue. I believe you will find this information useful. So here goes:

Dear Me: 

I don’t want to take a nap. I need to take a nap. Why is that so?

Need, Not Want


Dear Need, Not Want:

In the world of acronyms, it’s called PSF, or Post-Stroke Fatigue. PSF is a given post-stroke. So what is the solution? Knowing that you need a nap, there are some suggestions on management. Follow along and track the 1) how 2) who, and 3) what respectively in these 3 recent studies.

The How

In the Chinese Journal of Physical Medicine and Rehabilitation, Yan et al wrote:

Issue: How you breathe makes a difference.

Findings: “Diaphragm training can significantly improve motor function and the daily life of stroke survivors. The mechanism may be related to improved respiratory function and decreased the severity of fatigue.”

Translated from medical jargon, that means you might take shorter naps, or even a 15-minute power nap, if you breathe the correct way. I took an armchair yoga class several times and each time, the instructor went over breathing: a count of 4 breaths in (inhalation), a count of 6 breaths out (exhalations). This breathing exercise is good for other things, like alone time for meditation and frustration moments. I try to do that breathing pattern all the time, and when I forget, I know, so I get right back on track.

The Who

In the Journal of Psychosomatic Research, Cumming et al discovered a couple of things, among others, that might interest you:

Issue: Confirmation of link between FMS (Functional Movement Systems) and disability and depression

Findings: “Post-stroke fatigue was associated with lower limb mobility, while post-stroke depressive symptoms were associated with cognitive performance.”

Findings: “The current results underscore the importance of recognizing fatigue clinically, and the need to understand the underlying pathophysiology. Its importance is also highlighted by a high prevalence and persistence, remaining elevated in one study at 6-year follow-up.” 


The What

In Lenus, The Irish Health RepositoryKhan and Delargy found the following:

Issue: Rehabilitation can be severely affected by PSF

Findings: “Post-stroke fatigue is a frequently reported symptom by stroke survivors undergoing rehabilitation. This cross-sectional observational study was undertaken in a rehabilitation facility to look at its prevalence and relationship with various variables like personal factors, type of stroke, social context, hemispheric involvement on CT scan and mobility status. The results showed that PSF was present in 83% (25 out of 30) of the patients included in the study.”

Predictable, for sure. But when the medical researchers say it, you REALLY believe it. Please show this article to your family and friends if they say something negative like, “Get up already” or “Stop being lazy.” PSF is a real thing.

Brought to you by Strokefocus and one of its associations, Northwest Brain Network

    Hope for Paralyzed Arm?

    Dear Joyce,

    What are the chances of my arm, that hasn’t move at all after a hemorrhagic stroke, getting better? I’ve been doing exercises on and off for 5 years and I occasionally fell. 

    I was told that I have a three-month window from the date I had the stroke for improvement to happen. Is that the standard now?

    Concerned in Dallas


    Dear Concerned,

    Most occupational therapists who were recently trained starting about five years ago and later don’t say that phrase anymore about windows for improvement. The reason? It’s not necessarily true. 

    Some people improve constantly whereas others, no matter what they do, improve slowly or, at some future point, stop improving. Putting a very narrow timeline for improvement is just harsh and takes away the motivation to improve. That’s why a common saying is, Don’t give up!

    Falling in the biggest barrier for improvement. Aside from getting the initial shock, falling takes people back a step or two. Then people try again with a few days rest but, for example, they aren’t where they were a month ago.

    The most important thing you said: “I’ve been doing exercises on and off for 5 years.” Keep doing the exercises that have been given to you constantly as long as you have zero chance of falling. Consistency will sometimes pay off! Or maybe you’re at that point where improvement has stopped. 

    If you have insurance, or can afford to pay out-of-pocket, see an Occupational Therapist (OT) another time. Maybe there are exercises you haven’t tried yet. If it’s possible, I found that a variety of OTs can have a different spin on the same function.

    Time will tell.

    The Basics of Hemorrhagic Strokes

    Hemorrhagic strokes are the second most common type of stroke. They account for almost 13% of all strokes, according to the American Stroke Association (ASA).

    Typical Causes

    Hemorrhagic strokes are the result of a blood vessel that bursts and bleeds in the brain. This puts increasing pressure on the brain, and cell death can happen within minutes. Let’s look more in-depth at some common causes.

    Uncontrolled High Blood Pressure

    Blood pressure that is not well controlled can have serious consequences. High blood pressure can cause damage and weaken arteries. Weakened arteries in the brain can rupture and lead to a hemorrhagic stroke. This is why blood pressure management is so important.

    Aneurysms

    An aneurysm is a weakened blood vessel that ends up bulging and sometimes ruptures. The ASA notes that aneurysms develop over time and are more common in people over 40. They often develop due to constant pressure from blood flow.

    Aneurysms grow slowly and weaken as they enlarge. It’s unknown how to predict when or if they will rupture. High blood pressure can weaken arteries, and straining can increase blood pressure.

    Arteriovenous Malformations (AVMs)

    An AVM is something that people are usually born with. They occur in less than 1% of the population, according to Harvard Health. An AVM consists of an abnormal tangle of arteries and veins.

    • Arteries bring blood that is rich in oxygen from the heart to the rest of the body.
    • Veins transport the blood that has delivered the oxygen (and now needs to be oxygenated) back to the heart.
    • Capillaries are tiny vessels that connect arteries and veins. They also exchange nutrients from the blood to surrounding tissues.

    An AVM changes and disrupts this natural process. It connects arteries directly to veins and completely bypasses capillaries. These fragile, tangled vessels can become damaged over time. This leads to a rupture and resulting hemorrhage.

    Types of Hemorrhagic Strokes

    Intracerebral Hemorrhage

    This type of hemorrhagic stroke is two times more common than those caused by a subarachnoid hemorrhage.

    An intracerebral hemorrhage can happen deep in the brain or towards the surface. It occurs when thin-walled arteries in the brain burst and cause blood to flow into the brain tissue. This forms a hematoma: a clotted or partially-clotted pool of blood.

    The part of the brain that the ruptured artery served now becomes starved of oxygen. This is when brain cell death occurs.

    Pressure can also build-up and cause the brain to press against the skull. Surgeons may have to remove the hematoma to reduce pressure within the skull.

    Subarachnoid Hemorrhage

    This type of hemorrhagic stroke occurs in the subarachnoid space between the brain and the skull. This space is filled with cerebrospinal fluid (CSF) which cushions the brain.

    Subarachnoid hemorrhages are often caused by a ruptured aneurysm. This causes blood to enter the subarachnoid space, putting pressure on the brain. The area of the brain served by the ruptured artery begins to die due to a lack of oxygen and nutrients.

    This bleeding can also interrupt the normal flow of CSF. It can cause the ventricles to enlarge due to the extra fluid in the brain, aka hydrocephalus. The ventricles are cavities deep in the brain and are responsible for producing and transporting CSF.

    And that’s a wrap! We’ve covered the 4 main types of strokes, and the basics of ischemic and hemorrhagic strokes. Stay tuned for upcoming posts on how the effects of a stroke change based on brain location and a series on neuroplasticity!