A Review of Stroke Books, and The 3 Things I Didn't Have When I Had My Stroke

I finished all three and very different books about strokes as promised: a brain stem stroke, an ischemic stroke, and a hemorrhagic stroke. Here are my reviews, with a few thoughts at the end on what I was missing when I had my stroke.


1. The Calm Before the Storm: A Stroke Survivor's Story by Delanie Stephenson

Delanie's major concern when she had a brain stem stroke at 33 in Virginia was, who would take care of her two young kids before unconsciousness set in with her words, Then everything went dark. Her sister had a stroke, too, a hemorrhagic one, so the strokes were probably hereditary rather than coincidence. She uses religious undertones all through the book in prayers to God, invoking Him for help with the loss of her ability to walk and speak. Delanie has humor in the book as well as she described her embarrassing moments in graphic detail. There was much support, including her mom, her sister-in-law, friends and, of course, Curtis, her husband. She was in rehab for months and the doctors called her "a miracle." She suffers with PBA (pseudobulbar affect when one cries and laughs at inappropriate times) and has been working with a neurologist as of 2013, and her strength and balance are returning. As the book ends, she offers these words: But with God's help, the love of my family and friends, and lots of hard work, this storm too shall pass. Yes, it will, Delainie.

I give this book *****. 

You can find Delanie's book at Amazon: https://www.amazon.com/Calm-before-Storm-Stroke-Survivors-ebook/dp/B00DRDO9WW/ref=sr_1_14?ie=UTF8&qid=1495995331&sr=8-14&keywords=the+calm+before+the+storm

2. Stroke After Stroke: A Rower's Pilgrimage by Barbara Polan

Barbara thought she was too young to have an ischemic stroke at 52 (she was correct) when she in great physical shape and had a profession--managing editor of a newspaper--she loved. She expected tomorrow to be like today. She masterfully weaves rowing on a gig boat in Gloucester Harbor all through her book about the stroke. Her goal is to be able to row again. She suffered at the time the book was published in 2014 from anosognosia, as defined by a neurologist as "not understanding the extent or significance of one's deficits," i.e. she didn't know her limitations caused by the stroke. Barbara lost the use of the non-dominant side (left side), but she was fortunate in that respect (she is right-handed). Barbara focuses on exercise repetition, and she has tried, among other things, the Eastern practices of Kundalini Yoga, chanting Buddhist 'nam-myo-ho-renge-kyo' for15-minute daily sessions, acupuncture in the ear, psychotherapy, and aquatic therapy. She said she is happy and well-adjusted, although not complacent or accepting of my limitations.

I give this book *****.

You can find Barbara's book at Amazon: https://www.amazon.com/Stroke-After-rowers-pilgrimage-ebook/dp/B00NDF3BH8/ref=sr_1_1?s=digital-text&ie=UTF8&qid=1495999076&sr=1-1&keywords=stroke+after+stroke

3. Love Stroke: Stroke Recovery and One Young Couple's Journey by Kelly and Brad Marsh

The book is actually written by both Kelly and Brad, which I find a fascinating thing in and of itself from a young couple. Kelly, 36, was ill in Cincinnati after she returned from a trip to New Orleans. The both went to the hospital and she was put in the ICU, and when he wanted information about Kelly, a nurse told him, Nothing good happens fast in the ICU. Soon, a doctor confirmed ongoing bleeding in the brain which needed surgery. Her mother was there to help, but Brad, her life-saving point person, kept precise records of her medications, insurance (if filled out incorrectly, it would delay her rehab), doctors, and even the nurses and aides on duty. The book is a moving account of what people can do to help themselves, even after a hemorrhagic stroke, with helpful tips following the chapters. By working hard, she and Brad now have gone on vacations, something Kelly did not think possible early on. Some of the proceeds from the book are going toward the foundation the two of them started--A Stroke Forward, giving young and old stroke survivors, other traumatic brain injury survivors, and their caregivers the resources for their recovery.

I give this book *****.

You can find Kelly and Brad's book at Amazon: https://www.amazon.com/Love-Stroke-Recovery-Couples-Journey-ebook/dp/B01MREGL1A/ref=sr_1_1?s=digital-text&ie=UTF8&qid=1496011684&sr=1-1&keywords=love+stroke

Now, the 3 things I didn't have when I had my stroke:

1. I wasn't married (although my partner of 17 years considered us a married-ish couple) so I didn't have support that was even remotely close to what Delanie, Barbara, and Kelly had with Curtis, Tom, and Brad.

2. They had friends. Most of my friends left me once they saw what they thought would become of me. But I fooled them. I am now walking, albeit with an AFO (ankle-foot orthotic) and a cane, and I am no longer depressed, moody, and weeping. Sure, I get frustrated some times, but doesn't everybody to some extent?

3. They all had family members to help. My two sons lived far away and they visited me as often as their careers would allow. My parents are dead. That is why I'm moving to Portland soon to be near one of my sons as soon as this "medical condition" is cleared up. The foreboding doctor's call came on Friday and that "medical condition" is the subject of my next post. Stay tuned!

This Is a Life Lesson: Cankerish Braces Just a Parable

This post is divided in 3 parts. If I had to judge, the 3rd part is the most important. A little background first. 

Part 1:

When I had my stroke at 4am on April 8, 2009, the paramedics came and I was soon intubated, I found out a few months later. Intubation is a procedure where an endotracheal tube offers an open passage through the upper airway to allow air to pass freely to and from the lungs in order to ventilate the lungs. It helps to be in a coma-like state to not feel the pain.

Endotracheal tubes can be connected to ventilator machines and is often used when patients are critically ill and unconscious, and cannot maintain enough respiratory function to keep breathing on their own.

During endotracheal tube placement, however, one of the dangers is damage to the teeth. So one of my teeth, the upper right canine, was missing, as in knocked out. Also, I had orthodontia before many years ago and the original orthodontist placed a wire behind my bottom teeth so they wouldn't move, and the wire became dislodged in placing the endotracheal tube. I had the upper right canine replaced with a cap, but the lower right first molar eventually came forward in time and my bite was affected.

I studied the tooth, coming forward each year, until I couldn't stand it any longer. That was the only thing I could see in the mirror--that medial drift of the molar which made room for the rest of the teeth, but the hapless lower left first molar was the victim.

The new orthodontist applied the braces and said, "Remember. Nothing hard or crunchy or sticky while you have the braces on." I sat there and started thinking about Vitamin K and Coumadin, a popular blood thinner.


Part 2:

I have to take the same amount of Vitamin K in order to keep my INR (International Normalized Ratio) stable. Vitamin K is responsible for a healthy heart, improvement in bone density, reduced infections, and strong teeth. The INR determines ability to clot and, according to WebMD, "People taking the blood thinner warfarin typically have a target INR of 2.0 to 3.0." Below 2.0, you're aiming to clot; above 3.0, you might bleed. Trust me. I was there, and you don't want either.

I found inrtracker.com and then simply clicked on Vitamin K database to see which foods were allowed, not more than 90 micrograms a day for people 19 and older. This was my regimen, i.e. the same foods I ate every day. I absolutely love cucumbers with the skin still on them (4 thick slices = 30mcg), stalks of celery (1 large = 30mcg),  and blueberries (1 cup = 30mcg).

But I can't eat them now, the cucumber and the celery because they were hard, and especially blueberries getting stuck in the braces because of the outer skin. I felt so defeated that my regimen couldn't exist for a while.

But then, a week later, I researched and while I have the braces, I eat chopped cabbage for cole slaw that's made soft in the mayonnaise dressing (1 cup = 32mcg), ripe "just-melt-in-your-mouth" avocado (just short of 1 cup = 28mcg), and 1 large, soon-to-rotten kiwi (1 = 30mcg), every day. The regimen must continue, for the canker-producing braces, for the must-have Vitamin K, for my anxious sanity.


Part 3:

Until the braces come off in 5 months, I'll go with that regimen every day. Good Lord! It's only 5 months! I'll keep my INR between 2.0 and 3.0, and then I'll go back to the cucumbers, celery, and blueberries once the braces come off.

You see, it isn't the braces alone that's the reason for my telling you the story. It's a parable, an allegory, that applies to everything in life you consider arduous and burdensome. For me, it was assigning other "edible-because-of my braces" foods to my Vitamin K diet with Coumadin. For others, it might be a word you couldn't utter, and now you can speak that word without feeling embarrassed, or a walk around the block that you deemed impossible, and now you can do it twice, or a 12-minute ride on the stationery bike that you thought was the most you could do, and now you can do 55 minutes.

Bottom line? You can do more things faster and efficiently than you're doing presently. Guaranteed. I know because, as a stroke survivor, I was there.

Botox and Stroke Survivors: Does It Really Work?

First off, I have to tell you a story about Botox.

A year after I had my stroke in 2009, I went back to the acute care hospital--Bacharach Institute for Rehabilitation in Pomona, New Jersey--to see a doctor who specialized in spasticity of the limbs or, in my case, my leg. I wrote the book, "The Tales of a Stroke Patient," in part about Bacharach and called Bacharach Rehab X (now that I don't need them anymore, I'll reveal the source), and the insensitivity at times of the health professionals there--doctors, nurses, CNAs. I shouldn't have gone back. But the spasticity was driving me crazy.

If you think about it, you might not get the injection. The word Botox is a combination of botulism and toxin (OnabotulinumtoxinA the active ingredient contained in Botox). Botox comes from a bacteria that is a type of botulism, a type of food poisoning which, if you inadvertently use spoiled beef, can cause you to become very ill if ingested.

Anyway, I heard about Botox (the famous drug used to tackle wrinkles and lines for the insecure Hollywood folks) to also reduce spasticity and I made an appointment with Dr. X who specialized in Botox injections.

I went into the procedure room and the doctor followed. After we greeted each other, I asked him about the side effects.

I thought, C-mon. Botox wasn't to make me look younger. I HAVE A LEG SPASM, FOR CHRIST-SAKE! THEY'RE FUCKING PAINFUL AND ANNOYING! 

The doc said, without missing a beat, "You may die."

I paused and then shrieked, almost simultaneously, "Not today!" and quickly hopped off the table and ran (for a stroke survivor, "ran" is an exaggeration) out of the room, leaving the doc with his needle, the longest needle I've ever seen in my life, already about to inject the "death" serum into moi.

As it turns out, after much recent research, "death" isn't listed on the drug's bottle. Back pain, body aches, difficulty breathing, trouble swallowing, coughing, headache, and fever are among the possible side effects. And death? Never. 

But it should be. The doctor was right. I could die from Botox if it wasn't injected directly in the muscle and went to other parts of my body. Remember? A toxin? But he mocked and scared me, taking advantage of my nervousness.

Public Citizen's (PC) Dr. Sidney Wolfe demanded that the FDA  order a "black-box warning," to require that every patient receive a pamphlet outlining the risk prior to the Botox injection.

"What we're saying is, nobody should be dying of Botox, and they wouldn't be dying if the government and the companies were doing a better job warning people," Wolfe said. (The good doc's message came true. The warning is now on the bottle though PC discovered 16 deaths specifically related to Botox ten years ago. There are most likely more now). 

So insecure people wanting to look younger and more vibrant aside, exactly how does Botox work with brain-injured people? 

A spinal cord injury site said, "A small dose of Botox injected directly into the spastic muscle(s) blocks the acetylcholine so that the muscle can loosen and relax, resulting in increased flexibility and mobility and reduced pain." 

Relief comes to many within three to seven days following an injection, typically lasting three to six months, so injections that are repeated is normally needed. And check to see if the Botox (I mean, ask the doctor to show you) is manufactured by Allergan and not some counterfeit drug company.

Botox is not a cure, and your symptoms will slowly return as the effects of the medication subside.

A recent study at Indiana University found the benefits of Botox in reducing spasticity in the arms and fingers were roughly twice as effective as those who didn't get Botox at all.

Published in The New England Journal of Medicine, half of stroke patients, 126 in number, received injections of 240 units of Botox and half received placebos. The conclusive evidence said the 62% of those who were given Botox injections found relief in their spasticity, while only 27% of the patients taking the placebo reported improvement. Then again, there's mind over matter often taking effect.

The reason that I am thinking about Botox at all is that on this day, 8 years ago, I had my stroke. And I still have spasms, less often, but when I get them, they are mind-altering. 

I'll call for an appointment on Monday, or the week after that, or perhaps never. That sounds about right--never.