Stroke Survivors: Three Recent Studies on Fatigue That Tell How, Who, And What Respectively

I'm just speaking for me, and probably for most, if not all, of the stroke survivors. Every time I lie down, I always say the same thing, albeit silently: I don't want to take a nap. I need to take a nap. Why is that so?

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 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."

Issue: Finding of greater fatigue with increased time since stroke

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
Repository, Khan 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."

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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.

A Remarkable Stroke Survivor's Tale: Broken Lady? Hardly!

Get ready for the extraordinary. If you want to donate, and I think you should, there's an opportunity to donate even $1! 

https://www.seedandspark.com/fund/the-great-now-what

But I know how you are. You want to be sure she's worth it. Trust me. She is. Here's Maggie Whittum's story, in her own words, and you can decide for yourself: 

I always wanted to get on stage at the Denver Center. Growing up in Steamboat Springs, it was a trek to get to Denver, but my parents really valued the arts, and made a point to bring me to the opera, the ballet and the theater. When I was 10, we made a special journey down to see The Tempest in the Space Theatre. The show was exceptional and has lived on in my mind for decades.

I thought I was going to be a professional actor, director and producer. I studied drama at Colorado College and spent much of the next seven years living abroad. In 2005, I was lucky enough to perform in a successful one-act comedy at the Edinburgh Fringe Festival. I would return to this for the epic festival in Scotland for the next three summers. In South Korea, I got to appear on a quirky Korean children’s television show. I started an improv group there that still exists. I directed several shows and worked consistently as a voiceover artist.

I was blessed with so much. But living abroad had its drawbacks, so I came back to the U.S. in 2011.

I made some inroads with Denver theater companies. I specifically remember seeing The Diviners by Phamaly Theatre Company in 2011, and being extremely impressed.

I spent a year as a producing and directing assistant at McCarter Theatre in Princeton, New Jersey, then came back to Denver for another year. Then set out to get my MFA in acting at the Academy for Classical Acting at the Shakespeare Theatre Company in Washington D.C. It was an intense and enriching program. I spent all day studying Shakespeare, scansion, stage combat, Alexander Technique, dance, voice and speech. I loved every minute of it.

Then, two days after the first semester ended in December 2014, I got a headache. Forty-eight hours later, I checked myself into the George Washington University emergency room. Two days after that, things significantly worsened. I was put on a ventilator, the left side of my body and right side of my face were paralyzed, and I had kaleidoscopic double vision.

I had suffered a massive stroke.

Terror is the word to describe it all. Piece by piece, my body stopped working. I could no longer move. I could no longer speak. I could no longer breathe. Thirteen days after that initial headache, I underwent a nine-hour brain surgery at Johns Hopkins Hospital. It was a success. I could breathe on my own again, and I went to a rehab hospital.

I thought I could get back all the things I had been before the stroke. But just as my body had crumbled before, my life crumbled after. I had to drop out of school. My engagement ended. I was not able to work for a very long time. I recognized, about nine months after my stroke, that I was now permanently disabled.

I moved back to Denver feeling destroyed and ashamed. But once I was back in town, I made a point to see all of the Phamaly productions. When I heard they were doing the musical Into the Woods, I was absolutely thrilled. I mustered up the courage to audition in January, despite having a paralyzed vocal cord. I was delighted to play Cinderella’s Stepmother.

When I finally stepped onstage at the Denver Center, it was a considerably bittersweet experience. Of course I wanted to be there, but not under these circumstances. I deal with a lot of chronic pain now, and many vision issues, but it was tremendously rewarding and validating to step on that stage and perform again. I got to make people laugh. I got to be a part of an extraordinarily talented ensemble. I got to feel seen again.

Phamaly is an extraordinary company, and I feel fortunate to live in a city where a company like that can thrive, because it wouldn’t be the same if I lived in Miami or Seattle. I can’t wait to see their newest show, Harvey, now playing through Nov. 11 at the Olin Hotel in partnership with Senior Housing Options at 1420 Logan St.

Into the Woods was a major step forward in my life. I am now creating a documentary film called The Great Now What about my experience with stroke and disability. With the support of other trauma survivors, I hope this will be a film about how creating theatre and art together can inspire a community to heal and connect with empathy, compassion and humanity.

Art heals pain.

Editor’s note: Maggie Whittum’s fundraising campaign for her film will be launched on World Stroke Day on October 29. Click here for more information (there's only a short window until November 26)

To summarize:

Steamboat Springs native Maggie Whittum is a Denver actor who has appeared in A Midsummer Night’s Dream (as Puck) and Into the Woods (as Cinderella’s Stepmother) for Phamaly Theatre Company. Previous theatre directing and producing credits include All in the Timing, The Zoo Story and The 25th Annual Putnam County Spelling Bee. She has directed and performed in Scotland, Colorado, South Korea, Taiwan, Hong Kong, Beijing and throughout Canada. She also assistant directed under Tony award-winner Rebecca Taichman at McCarter Theatre in Princeton, where she was named the Charles Evans Fellow in 2012.

Now Maggie has a new project, a movie:

    

This will be an important and impactful documentary film.

Another writer claims: Maggie has it all: brains, beauty, an education, a fiancé, and plans for a family. Then a rare stroke (caused cavernous angioma) shatters her identity, leaving her permanently disabled and with intense chronic pain, a paralyzed face, major vision issues, and more. She leaves school, loses her body, her voice, her face, her vision, her man, her money, her ability to work, and nearly -- her mind. She links up with other disabled artists and performers. Creating theatre and art together, they inspire a community to heal and connect with empathy, compassion, and humanity.

Maggie says, "We have BIG GOALS. Eventually, we hope this film will be featured at major festivals, like Sundance and Telluride, and will stream on HBOGo, Amazon Prime, or Netflix (It's very important to us this film is available via online streaming to people with disabilities who cannot leave home easily.) We are proud to say that The Great Now What has been chosen as a “Featured Project” by the Denver Film Society. We are being considered for several prestigious grants, and this crowdfunding campaign will help us meet funding goals, as well as grow awareness and enthusiasm for the film!"

Here is the way to donate: 

https://www.seedandspark.com/fund/the-great-now-what

Much appreciated! We are at 67% of our goal!

Our $41,000 goal is the bare minimum needed to to complete a film that we are proud of and can release online.

If we raise $50,000, we'll be able to create much more elaborate and compelling motion graphic animations to communicate life with chronic pain!

If we raise $60,000, we'll be able to hire the very best marketing and promotional team to help us reach as many stroke survivors, people with chronic illness and chronic pain, caregivers, and people in the medical community as possible!

"If we raise $70,000, we'll show the world that people with disabilities are not invisible! We'll have more leverage when negotiating with distributors, and we'll be to acheieve a bigger platform and have a major (worldwide!) impact!

"If we raise $250,000 we'll be able to create the best film possible, reach the widest audience possible, fund all of our post-production costs, AND fund all our film festival entry fees, distribution costs, promotional travel, marketing, audience outreach, and make the most powerful and deeply empathetic film that will impact stroke survivors, people with chronic illness and chronic pain, people with disabilities, caregivers, the medical community, and so many more!

"If you are interested in making a tax-deductible donation or investing in The Great Now What, please email us at: thegreatnowwhat@gmail.com. Let's discuss!"

OTHER WAYS YOU CAN HELP

1. FOLLOW US ON SOCIAL MEDIA!

Like our page on Facebook for daily posts about the film, and relevant articles, podcasts, and pictures on disability, stroke, chronic pain, facial paralysis, cavernomas, and more! Encourage your friends to like us too!

2. SPREAD THE WORD ABOUT #TheGreatNowWhat

Tell you friends, family, colleagues, and neighbors about the film - in particular, we want to reach stroke survivors, people with chronic illness or chronic pain, people with disabilities, and members of the medical community. Share our posts, campaign page, and our backer updates! Tweet about us! Here is a sample Tweet!

Join #TheGreatNowWhat #crowdfunding campaign; help make this powerful #documentary #film on #stroke #disability a reality!

Contributions can be sent to: http://www.seedandspark.com/ fund/the-great-now-what

3. JOIN OUR MAILING LIST!

Stay up to date on the film - click here to join - we won't spam you.!

4. KEEP FOLLOWING OUR CAMPAIGN!

Regular visits to our Seed&Spark page keep you in the know AND increase our chances of being featured on the site!

I know most stroke survivors don't work anymore, with no money coming in except Social Security. But there's always a dollar that you can contribute to this remarkable effort. Maybe more. There are almost 800,000 people who have strokes every year, and that's America alone. If everyone contributed a dollar.... You get the gist. 

https://www.seedandspark.com/fund/the-great-now-what

To Boldly Go Where No Insect Has Gone Before: Fuckin’ Fungus Gnats

The first part of the title is self-explanatory, but the altered line from one of the most extraordinary shows, Star Trek, requires some explanation. So keep reading. Once you're done, you'll understand. Now, on with the story.

I had a stroke. No revelations there. And as such, I cannot get out whenever I feel like it to buy things, more specifically plants. So I ordered live plants from Amazon, and that's when it started--tiny, annoying, fuckin' (yes, the profanity is necessary) fungus gnats. First, some background. 

The adult fungus gnat can lay about three hundred eggs in its short lifespan, about two weeks, unless you're lucky enough to smash one. (PETA people, forget it. Even you would find them annoying). Eggs are laid in fertile, moist soil at the base of plants and turn into larvae, rapidly increasing in size as they munch through organic matter in soil.

If you overwater the plants, too much wetness will propel the development of fungus gnats and the roots will begin to rot, making the ideal meal that fungus gnats love. In addition, you might find the fungus gnats enjoying the plants themselves if there's not any organic matter (dead, decomposed worms, for example) left. 

A root drench with one part hydrogen peroxide and four parts water (you have to wait until the mixture runs all the way through the plant and out the drainage hole) is best rather than spraying the plants with insecticide because it rids the problem. You'll have to put up with the gnats for two weeks longer if they've already hatched.

Two weeks ago, there was an infestation before I read about the hydrogen peroxide mixture. So the African Violets and the poinsettia plants, which are very susceptible to fungus gnat damage, didn't succeed. But so far, the other plants came through the process.

And now, To Boldly Go Where No Insect Has Gone Before, will be revealed. 

I have sinusitis and use a nasal rinse (which is disgusting in itself and I lock the door by habit, even if I'm alone, to not let anybody observe), and at the start of the infestation, I noticed fungus gnats were coming out of my nose in hordes. The more I used the rinse, the more I saw the fungus gnats emerge, nasally speaking. Unbeknownst to me, and definitely the fungus gnats, I was inhaling the gnats (I'm going to get dramatic here) with every breath I took. 

So for a week thereafter, I wore a surgical mask 24/7 to keep the fungus gnats from being sucked up into my nose. But I have a few more orifices, like my ears and eyes, for example, and I used appropriate rinses in them, too. 

Takeaways? Don't buy live plants live plants from Amazon and definitely don't buy live plants from a greenhouse in the fall or winter when the fungus gnats are more plentiful, burying their fragile eggs in the moist soil to keep them warm and thriving. 

But Andy and Laura, my son and his girlfriend, bought me a Venus Fly Trap for the remaining gnats, that really does what it says. Look carefully. The picture says it all. 

An Article and a Presentation: Long-term Care and a Stroke Video Project

I know, I know. Insurance companies have a dismal reputation because most of them deserve it. They talk insurance speak--of deductibles, annuities, disability income, expense ratio, hospital indemnity coverage--as if everyone is supposed to understand. And the acronyms the insurance companies use will drive you "mad."

So listen up, family and friends: If you already had a stroke, it's too late to buy Long-term Care insurance, but if you're healthy, you can't make a better investment. That's why I'm guest hosting, albeit and thankfully dummied down, an article by Hazel Bridges that I think is worthy of attention. The author's views are her own. Here it is, from AgingWellness.org:

Every American who reaches age 65 qualifies for Medicare. You can rest assured knowing that your or your loved one’s medical needs will be covered by this government-subsidized health care program. What you might not realize is that Medicare doesn’t cover every need for seniors.

There are two types of Medicare: Original Medicare and Medicare Advantage Plan (Part C). Under original coverage, there’s Part A for hospital care, skilled nursing facilities,
hospice, lab tests, surgery and home health care; and there’s Part B for medically necessary services and preventative services. Part C falls under private insurance with Medicare approval, and the out-of-pocket costs are lower than original Medicare.

What might interest you is what Medicare doesn’t cover: eye exams, dental care, cosmetic surgery, foot care, hearing aids, acupuncture, or long-term care. 

Long-term care (LTC) is especially important to understand because many seniors need this later in life for several years at a time and not everyone plans for it. Long-term care usually refers to custodial care, which is help with daily living. This includes activities such as getting dressed, eating, getting around the house and medication assistance. Since most of these needs are not medical, Medicare generally doesn’t pay for it.

Long-term care can take shape as home care by a skilled nurse or home caregiver without medical training, but it can also involve long-term stays at facilities. Some seniors prefer (and are able to) remain at home with help, but other seniors either don’t have long-term living arrangements or are unable to live outside of a facility that can provide 24/7 care. This is where assisted living facilities and nursing homes come in.

Medicare only covers long-term care under certain circumstances. Skilled nursing care has to be short-term (100 days or less), preceded by a hospital stay, and as recovery from an illness or injury that’s not from a chronic condition. There’s also a helpful program called Medigap, which is an insurance supplement from private insurance companies to cover the gap that Medicare doesn’t cover.

Unless you’ve thought about your retirement years in advance and have all your ducks in a row, you might find yourself struggling to cover the costs of long-term care. Perhaps you’re a junior who is taking care of an aging family member who needs long-term care, and you don’t know what your options are. Or, maybe you’re simply looking into a plan for your own future LTC needs.

Whatever your intention and needs are, you can plan ahead for LTC. If you’ve already reached that point, you can find ways to subsidize the cost with your current income and assets. The most direct choice is long-term care insurance, which does exactly what it says: pays for long-term care. These policies are typically taken out after age 50, years before the service is needed. A healthy 60-year-old can also take out a policy, but your premium rises as you get older or have a condition that could require LTC later down the road.

If cash is needed to help pay for long-term care, one popular option is a reverse mortgage. In a reverse mortgage loan, homeowners can convert the equity in their homes into cash. The lender makes tax-free payments to the borrower since it’s a loan advance rather than a form of income. Just be careful to weigh the pros and cons of this decision.

You may have a long future ahead of you, or you might find yourself trying to make ends meet for yourself or a loved one. Whatever your situation, make sure you understand what your insurance policies cover, how Medicare can help you and how your assets can be converted to cash. You have one life, and you should take care of it as best you can.

Congrats, Hazel, for this informative article. 

And I received this stunning email from Maggie Whittum:

Hello Joyce, my name is Maggie and I'm a stroke survivor and filmmaker. I had a massive stroke at age 33, leaving me disabled. I'm hoping to do something good with my shattered life.

I wanted to tell you about this documentary film project of mine.
Please check out this two-minute teaser.

I'm trying to convey to people what my life is like with 

pain/disability/a shattered sense of identity.

https://vimeo.com/244729372

It's a documentary film on stroke, disability, loss, 

resilience, and the healing power of art. It’s for  

stroke survivors, and people who struggle with 

chronic illness or chronic pain.  

If you would like to share it with others, please do.

Thanks for all that you do!

Maggie

Wow! A filmmaker and a stroke survivor, attempting to
make a difference from her shattered life. Kudos, Maggie,
for an ongoing project very well done! Best wishes!

You can leave comments below for Hazel and Maggie.
I'll pass them on.

The Reason I Had a Stroke: Protein S Deficiency, aka Lousy Genes Will Get You Eventually

My mother, bless her deceased soul, used to have her favorite vegetable at dinner for us most of the time: overcooked string beans, and I, following in the tradition of my mother, use to serve the same thing when I married, dried out and sorry-looking green beans that looked as if they had died last week.

Anyway, overcooked string beans provide little, or none, of the beneficial nutrients. And I ate them, too ignorant of nutrients as a child to care. As an adult, I tended not to have vegetables, except those overcooked green beans, always on my shopping list. So I developed Protein S deficiency, unknowingly to put me right in line--eventually--for a stroke. I was not aware of that deficiency for 55 years.

Medscape's Mohammad Muhsin Chisti, MD, says, "Protein S is a vitamin K–dependent anticoagulant protein that was first discovered in Seattle, Washington in 1979 and arbitrarily named after that city. The major function of protein S is as a cofactor to facilitate the action of activated protein C.

"Protein S deficiency may be hereditary or acquired; the latter is usually due to hepatic disease or a vitamin K deficiency. Protein S deficiency usually manifests clinically as venous thromboembolism (VTE)." Stroke, in other words.

The National Institutes for Health (NIH) Joshi and Jaiswal said, "Protein S functions as a cofactor of activated protein C. Its deficiency is a rare condition and can lead to deep vein thrombosis, pulmonary embolism or stroke. Protein S deficiency manifests as an autosomal dominant trait." [Explanation needed: To have an autosomal recessive disorder, you inherit two mutated genes, one from each parent. These disorders are usually passed on by two carriers.]

There's a test for Protein S and C deficiencies, but would you really want to know? A family member who shall remain nameless heard of my research into Protein S and C deficiencies, but he allowed the doctor to talk him out of it like ostrich-head-in-the-sand approach. 

On the other hand, if you really know of those S and C deficiencies, wouldn't you change your lifestyle a teeny bit, like eat more vegetables, raw even, and foods high in Vitamin K? 

Foods rich in Vitamin K are bearable, some even delicious:

• kale
• collard greens
• spinach
• turnip greens
• Brussels sprouts
• broccoli
• asparagus
• lettuce
• sauerkraut
• soybeans
• edamame
• pickles
• pumpkin
• pine nuts
• blueberries

Here's another view:

Check with your doctor and see if approval for Protein S and C deficiencies testing is do-able. Insist, even. Strokes suck in ways your wildest dreams can't imagine.