Me Talking Exclusively About Me: The Tales of a Stroke Patient and More

This post is very brief, but it needs to be said. I'm exhausted from people asking me all the time why I write this blog which is going on 10 years. I write to inspire. I write to educate. Most of all, I write to give people hope, and me as well as a reminder, that it gets better as the years pass, especially if you're positive. Why almost 650,000 readers? Done. Now you know.

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My blog's readers, almost 650,000 currently, a typical week later....

And this review by Judy Herrmann, among many, mostly 5 star, of my book, The Tales of a Stroke Patient, available from most  online sellers like Amazon (http://www.amazom.com) and Barnes and Noble (http://www.bn.com). If you don't mind a used book, check out http://www.biblio.com.

Strokes happen suddenly; one moment you are healthy and the next, poof, your brain is messed up and your body doesn't work the same any more. Joyce Hoffman shared the personal experience of her stroke, first as a blog, then as this book. She wrote partly to help other people. 

As a stroke survivor myself, I have been reading anything I can find about strokes. It is not easy to find stories like this about people's personal experiences. But emotionally, it helps my recovery to read about other people's recoveries. Reading Joyce's book was like having many long conversations over time with Joyce about her stroke recovery. Joyce tells it like she sees it, and this makes her book all that more enjoyable, like sitting down with one of your good friends over lunch, listening to what they have been up to. 

The various speech (covering cognitive, swallowing and actual speech), occupational (which includes activities of daily living and upper body recovery) and physical therapists treated Joyce well and helped her in her recovery. The CNA's (Certified Nursing Assistants) were another story. Patients sometimes had to wait inordinately long times after pressing the call button only to be faced with a rude CNA. I won't tell you any more about Joyce's experiences, but there are not pleasant to read. 

Lastly, Joyce has several thought provoking topics such as bibs, and the ease of using wheelchairs in stores. I recommend this book for anyone who has had a stroke as well as their friends and relatives. 

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Thanks, Judy. You nailed it!

One more thing: Anuj Agarwal who is the founder of Feedspot awarded me and 24 others this honor:

Thank you, Anuj, for this great symbol of what all the awarded stroke survivors are trying to do--bring hope, awareness, and peace to those afflicted. 

The Story Behind Millie, the Caregiver: Did I Break Her? Or Did She Break Herself?

So I should have known, as a stroke survivor, from the first day I met Millie--when I fell off the slippery cafeteria chair in IKEA and she didn't stand up and rescue me from the floor and continued eating her strawberry salad when other people came over to restore my position on the chair--that there was something wrong with her. But I ignored it, lying to myself, just thinking that she was in shock.

Looking back, I came to realize that everything was about Millie. If I have to give her a name, she was a DIVA! But to be fair, I take 10% of the blame. The rest, the 90%, goes all to Millie.

The first few weeks, other than falling off the IKEA chair, were most pleasant yet businesslike. I wasn't used to that efficient style because my previous caregivers in Pittsburgh (I had three) told me everything about their family interactions and their social life. Often, they would pick me up and take me to their family's parties. But Millie had boundaries.

"I don't like doing more than one thing at a time."

"I have other clients that follow you, so I won't plunge the toilet if need be."

"This apartment needs deep cleaning. I know somebody who could do the job."

And on and on, more and more, but that's what she was hired for--multitasking, plunging, cleaning.

She should have quit the job rather than add boundary upon boundary.

I take 10% of the blame because once she decided to shirk her duties, I instigated her, just to see how she would react. It became a game, albeit a stupid one, called, "How Can I Piss Off Millie Today."

"Millie," I would ask, "while you continue to cut the fruit, could you tie my shoelace first?" knowing that she didn't like to be interrupted.

"You need that show tied right now?" she asked defiantly. 

I didn't respond knowing that no response usually makes the point stronger. She tied my shoe and sighed audibly with a frown on her face. (I know that frown. It's the same scorn I used on my mother-in-law when she did things unsolicited, like clean my bedroom without asking even though it was more like snooping).

Anyway, when I was in the middle of a call on my cell to the doctor's office, and Millie had already reached our destination, she'd advise me to hang up and call back later. I just knew she was approaching the final straw.

I paid her for three hours even though she just gave me two and a half after a while, complaining about the lack of parking spots. She had a 3-hour minimum.

"How about this idea?" I said to her. "Why don't you leave a half hour earlier from your house because then you would actually put in the hours I am paying you for."

"Wouldn't work," she responded, and then busied herself out of earshot with another task, one task at a time.

Then came the last straw. She gathered up a small clump of dust from somewhere, and said, "You should tell whoever's here to clean more thoroughly." Unbeknownst to me, sent a picture of that dust clump to my son who, regardless of how concerned he is about my well being, knows that I make my own decisions on everything and really knows I am not bothered by that little clump of dust. He thought it was silly, too.

(Millie was referring to Lynn, but didn't say her name because Lynn and I are friends now rather than employer/employee exclusively and I interviewed them both on the same day. I would have taken Lynn over Millie, but Lynn couldn't work every day, and it's Millie's job anyway to clean up little clumps of dust. She was the primary caregiver! Forgive me for that huge rant, but it had to be said).

I finally knew. She had to go. I'm known to have a long fuse, but I have limits, too. On a recent Monday, I let her do the tasks and we took a break two hours in.

"Millie, this isn't working out," and then paused for her to object. But rather than argue, she packed her things in a hurry and left without saying a word. I was amazed at how easy that was to let her go.

I didn't pay her for the three hours (that was only two), so I put the check in the mail along with a timesheet required by the insurance company and a self-addressed stamped envelope with my name on the front so I could get the timesheet back. No reply. After a couple of weeks, I sent another check thinking it was lost somehow in transit and, once more, the timesheet and a self-addressed stamped envelope. Again, no reply.

But this time, a few days after my second mailing, she cashed the check, only one of the two I sent, probably destroying the other. (I put a stop on that check anyway). And she never returned the timesheet.

I came to realize two things: 1) Millie should have quit much earlier if she was so unhappy, and 2) there were more Millies out there who actually enjoy being caregivers. Lynn comes every Wednesday now and I have another lovely caregiver who do the tasks I assign them, with a smile, always! Good for them, good for me. 

Stroke Survivors Like Us With Aphasia: One Son's Everlasting Love for His Mother

An aphasic brain

For someone who used to speak constantly for a living (I was a Technology Trainer, the latest being Cozen O'Connor, an international law firm where I talked incessantly), when I got aphasia as the result of the stroke, anger and disappointment were without boundaries. I was depressed and frustrated, and it took me two years just to get over that. June is National Aphasia Awareness Month, so the timing couldn't be better! I'll explain what aphasia is in a moment.

This post, however, isn't about me at all. It's about Nicholas and his mother, Nina, a stroke survivor who ended up with aphasia. 

Nicholas Orris, an independent filmmaker who is from the Philadelphia area (www.orrisproductions.com), came across my blog and he was inspired by his mother's journey to overcome aphasia.

Nick and Nina in the younger years

Nick and Nina at the high school's film festival which, by the way, he won

"As an aside and small coincidence, my filmmaking producer, Matt Deblinger, is an attorney at an international law firm in Miami, so between your ties to both Pennsylvania and international law, Matt and I felt it was serendipitous to come across your blog," Nick said. Serendipitous indeed!

Aphasia can be so severe that it makes communication with the patient almost impossible. Aphasia is the inability to find words, have a conversation, even read and write. The Mayo Clinic came up with a concise list of things for which the patient should be tested, including:

• Name common objects
• Engage in a conversation
• Understand and use words correctly
• Answer questions about something read or heard
• Repeat words and sentences
• Follow instructions
• Answer yes-no questions and respond to open-ended questions about common subjects
• Read and write

As for aphasia, speech and language therapy tries to rehabilitate the person's conscious ability to communicate by restoring language, educate how to compensate for missing language skills, and find other methods of communicating.

Some studies have found that therapy is most effective when it begins right after the cerebral, or brain, injury. In a group setting, people with aphasia can try out their communication skills in an accepted, safe environment. Examples include participants practicing conversations, clarifying mis-spoken words, and fixing conversations that have evaporated. Using computer-assisted therapy can be especially helpful for relearning verbs and word sounds.

The Mayo clinic's suggestions for people with aphasia: 

• Carry a card explaining that you have aphasia and what aphasia is.
• Carry identification and information on how to contact significant others.
• Carry a pencil and a small pad of paper with you at all times.
• Use drawings, diagrams or photos as shortcuts.
• Use gestures or point to objects.

For family and friends, 

• Simplify your sentences and slow your pace.
• Keep conversations one-on-one initially.
• Allow the person time to talk.
• Don't finish sentences or correct errors.
• Reduce distracting noise in the environment.
• Keep paper and pencils or pens available.
• Write a key word or a short sentence to help explain something.
• Help the person with aphasia create a book of words, pictures and photos to assist with conversations.
• Use drawings or gestures when you aren't understood.
• Involve the person with aphasia in conversations as much as possible.
• Check for comprehension or summarize what you've discussed.
• Support groups

The aphasia diagnosis, according to Northwestern University, is based on the results of neurological, neurolinguistic, and neuropsychological assessment. People with aphasia exhibit improved language ability when provided with treatment. Aphasia therapy strives to restore language abilities by providing treatment focused on specific language disabilities. 

When language recovers, so does the brain. It is a known fact that recent research findings show that language and brain function improve for many years following the onset of aphasia. When people with aphasia are given treatment focused on the specific language processes that are damaged, neural repair improves.

Now that you know what aphasia is, I can resume the story. 

Nick, a caregiver to his mother, used his filmmaking abilities for a short film called Buried Words," about a stroke survivor recovering from aphasia and her young adult daughter who learns to serve as her caregiver during winter break," as Nick tells it. 

The film's goal is to raise stroke awareness and funds for aphasia therapy groups. 

"We have recently launched a crowdfunding campaign on Indiegogo, https://www.indiegogo.com/projects/buried-words-stroke-survivor-film-fundraiser#/ now National Aphasia Awareness Month in June, where 50% of all contributions raised in the campaign will be given to a Philadelphia-based organization that provides free support groups and therapy to patients with aphasia, the Philadelphia Aphasia Community at Temple [University] (PACT)," says Nick. 

The other 50% of the funds raised in the crowdfunding effort will go towards helping them complete the film in post production. Once completed, Nick and associates have plans for the film to tour at festivals, community centers, and schools to help further elevate stroke awareness and aphasia. 

"Buried Words is my way of giving back to the community that has supported my mother as she strives to live her life to the fullest. The film is deeply personal to me, and I hope it can transcend its medium. We hope to educate people who may not be as familiar with stroke recovery or aphasia, as well as encourage family members and caregivers who may need a reminder that they are not in this alone," says Nick. 

Your support of this project would mean the world to them -- and me, by the way, who has aphasia, too. So please donate as much as you possibly can to this worthy cause. Again, the campaign video which features Nick himself can be viewed here, which also includes a video about PACT: https://www.indiegogo.com/projects/buried-words-stroke-survivor-film-fundraiser#/ Click the campaign video link to donate and see if you tear up, too. Best sincere wishes, Nina and Nick.

This song came to mind immediately (I'm a solid country fan), Rascal Flatts and My Wish for You. The link to the song follows. And maybe, just maybe, you'll tear up like I did, every time I read what I have written, about Nina, the mother, and her thoughts about her son, Nick.   

https://www.youtube.com/watch?v=zGB7IWklW3s

Oxygen Getting to Brain Cells Is the Problem During Stroke, But Wait! There's Possible Relief Heading Your Way!

You don't do it for you, stroke survivors. You already had a stroke. You're thrilled for them, the loved ones who come after. But don't get too excited. Researchers have been only experimenting on mice and dogs so far. But if these results translate to humans, FDA approval is likely. Imagine reducing the side effects of stroke by restoring oxygen to the brain with an intravenous injection that has an oxygen carrying drug molecule so small it passes through the clot like water passes through sand.  It would be administered as soon as side effects appear and should have no downside effects if it’s deemed safe. Many possibilities for the drug exist like stroke. Tissue oxygenation is possibly coming your way and quite soon. 

Mike Sheikh, with a pedigreed degree, a Pharma consultant, and a load of smarts, shared this with me. Here is the fascinating discovery authored by Mike Sheikh himself.

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Extending the Golden Hour for Stroke Victims 

Researchers refer to the first hour from the onset of stroke symptoms as “the golden hour” because “time lost is brain lost.” The sooner the patient gets in the que to get a diagnosis for the type of stroke, the better the outcome.  Diagnosing a stroke is as simple as FAST which stands for Face, Arms, Speech, and Time.  The time it takes to identify the patient is suffering from a stroke is only 1 minute, but the paradox is that treatment cannot begin until imaging is complete and the doctors have ruled out a hemorrhagic stroke.  

According to a UCLA research study the average time from onset to treatment is 2.5 hours.  Ischemic strokes which account for 87% of all strokes can be treated with a powerful clot busting drug called Tissue Plasminogen activator (tPA).  Ethics dictate that doctors can do no harm.  This means that even though there is an 87% chance that tPA will bust the clot and stop the brain from dying, medical professionals have to sit on the sidelines while the brain deteriorates until the diagnosis is complete.  If any hemorrhagic patients were given tPA, they would surely die.

Average Stroke Patient Experiences Almost a Decade of Brain Aging Before Treatment

The focus to reduce the time to diagnosis is critical with respect to brain aging.  Patients receiving treatment sooner than 2.5 hours had a better ability to walk, live independently, and had reduced mortality.  The clinical benefit of tPA was best used before 4.5 hours of onset.  Studies have shown that an ischemic stroke consumes almost 2 million neurons ever minute until blood flow is restored.  This translates into 14 billion synapses lost and 7.5 miles of myelinated fibers lost every minute and accelerated aging of the brain by 3.1 weeks.  

In a typical stroke scenario 30 minutes is spent getting to the hospital which results in a brain aging of 1.8 years and then the additional 2 hours to get imaging results in another 7.2 years of aging.  This brings the total aging of the brain to 9 years in the average stroke case.  The indirect cost of stroke care in terms of lost productivity and care taking is estimated at $22.0 billion annually.     

Fast Treatment Has Medical Benefit

Researchers also found that faster treatment results in better outcomes. They have quantified that to mean that for every 15 minutes knocked off the time to treatment results in a 4% greater chance of walking, 4% less likely to have a brain hemorrhage, and 4% are less likely to die. Putting this into perspective, if brain tissue oxygenation could be restored in 15 minutes, there is a 40% great chance of walking.  

Blood Clots are Actually Porous and Not Impermeable Barriers

The crux of the problem during a stroke is getting oxygen to the effected brain tissue.  The only transport mechanism to the effected brain tissue are through the arteries blocked by a blood clot.  Blood clots, however, are not solid impermeable barriers and are more like fish nets full of fish (blood cells) that will allow smaller molecules and fluid to pass.  So when the road is closed to large oxygen transporting vehicles like the red blood cells, they are still open to the much smaller co-polymers in the blood plasma that pass without consequence.  When these arteries start to form clots, they are exacerbated by fibrins that eventually form a net that ends up trapping more red blood cells.  Fibrinogen is normally dissolved in blood plasma and through a cascade of interactions generates thrombin which converts the fibrinogen in the blood plasma into long strands of fibrin that radiate from the clumped cells designed to trap more blood cells.  [Bottom line:] Instead of breaking up the clot, the simpler solution is to try to get an oxygen delivery vehicle that is small enough to pass through the clot.     

The Oxygen Bridge

The key to overcoming the blood clot in the brain is to think small.  This is where BXT-25, a developmental drug that is 1/5000^th the size of a red blood cell, might have the right idea.  BXT-25 is a combination of Heme (from hemoglobin) and a co-polymer designed to stabilize it in the bloodstream.  BXT-25 can stay active in the blood for up to 9 hours.  Heme is the chemical structure that carries oxygen and is the fundamental building block of the human body’s oxygen transport system.  It is injected intravenously and then circulates within 3 minutes through the blood stream and picks up oxygen in the lungs and transports it to various tissues and organs including the brain.  

The concept behind this drug is to allow a first responder to give a stroke patient an oxygen bridge until imaging can identify the type of stroke and apply the treatment. [No matter what kind of stroke!] Providing this oxygenation has no downside risk regardless of the type of stroke, unlike the tPA, which could kill a hemorrhagic stroke victim. Getting this vital oxygen to the brain could dramatically improve patient outcomes and greatly reduce the amount of recuperation time from a stroke.  

BXT-25 could break the paradigm of the golden hour and put this lifestyle-saving drug in the hands of first responders much like the AED improved outcomes for patients undergoing cardiac arrest.
     

BXT-25 [BXT stands for the name of the company, Bioxytran] could be a game changer in the treatment of stroke patients.  The drug is currently under development and is NOT FDA approved.

For more information on how it works visit the website or play this video of how it works.

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Remember to click on the links to the website and video. Again, it's only being tested on mice and dogs, but that discovery is huge if the results translate to humans. Mike thinks that FDA approval could occur within 2 years. 

And keep this in mind. Prof. Avraham Mayevsky, on the Advisory Board of Bioxytran, is a worldwide authority in the field of minimal invasive monitoring of tissue and organ physiology, a professor in Israel at the Faculty of Life Sciences, Bar-Ilan University. 

Final point: Again, many of my readers already had a stroke. But stroke can be hereditary. So think of them!