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! 

The 10 Most Read Posts Since My Blog First Appeared 10 Years Ago

I love to blog. (And I won two awards--one from Medical News and the other from Feedspot). It's a catharsis in a way, defined by Merriam Webster as the purging of emotional tensions, relieving oneself of the feelings that through catharsis, arise to the surface. In the 10 years my blog, The Tales of a Stroke Patient and More, has been alive (as opposed to "live" which in my mind doesn't have the same impact), I have always liked to bring you, my dear readers, thought-provoking and inspirational tales to keep your mind working.

There is a counter when you write for Google's Blogger which shows, among many other things, the 10 most read posts to date. I hope you gain something from them if reading for the first time, or re-read them for reinforcement, published around the world in every continent except Antarctica. (I'm starting to wonder if anybody even lives there!) Here they are in order:

A Place for EVERYTHING Stroke and Other TBIs--strokefocus.net 

(10,095 readers)

This is the story of amazing Daniel Gu and how he founded Strokefocus.net, the completed website coming in June. It's a touching, almost tear-producing process of his recovery. 

http://stroketales.blogspot.com/2016/10/a-place-for-everything-stroke-and-other.html

Alcohol and Stroke: You May Be Just Asking For It 

(8681 readers)

This post created some brouhaha because people took offense that it was directed at them instead of thanking me for the information. Oh, well. No good deed goes unpunished. 

http://stroketales.blogspot.com/2016/09/alcohol-and-stroke-you-may-be-just.html

The Words I've Been Longing To Hear: An Energizing Visit from the Cable Guy 

(8,360 readers)

Don't get any ideas of an intimate nature! We were just having a conversation. That was the first time the cable guy and I spoke without asking me to repeat myself. The post has near-comical elements.

http://stroketales.blogspot.com/2016/09/the-words-ive-been-longing-to-hear.html

Fatigue and Stroke, aka I'm Hittin' the Wall 

(7,838 readers)

The world is filled with acronyms, and this post follows suit.  It's called PSF, Post Stroke Fatigue, and explains possible reasons for PSF and the foods that combat it. 

http://stroketales.blogspot.com/2014/05/fatigue-and-stroke-aka-im-hittin-wall.html

How Two Legal Drugs Caused My Hemorrhagic Stroke 

(6,717 readers)

The thinking was I was allergic to Heparin which isn't an allergy at all. As a result, the doctor finally took away every blood thinner. The right thing to do? Not really, I learned much later on. 

http://stroketales.blogspot.com/2014/07/how-two-legal-drugs-caused-my-stroke.html

Caregivers Are Suffering; Stroke Survivors Are Suffering: Who Has It Worse?

(5,964 readers)

When it comes to caregivers, they are passionate about the position whether they are burned out or lovingly embrace it. But GFYS? That came from one of the burned out ones. 

http://stroketales.blogspot.com/2017/02/the-caregivers-are-venting-and-stroke.html

Can't Do's and Can Do's: A Stroke Survivor's Thoughts

(5,389 readers)

I open up on my limits. Ten for each. If I think about my 10 "can't do" set , I try not to dwell on it. After all, I have 10 "can do" activities that follow.

http://stroketales.blogspot.com/2016/03/cant-dos-and-can-dos-stroke-survivors.html

Thoughtless Person: You Didn't Finish the Book YET? Stroke Survivor: No, Dumbass. Remember? I've Had a Stroke!

(5,339 readers)

Dyslexia and aphasia are only two of the subjects discussed. I read slower now, but I read, and other disorders are included. That title, by the way, happened to me.

http://stroketales.blogspot.com/2016/04/thoughtless-person-you-didnt-finished.html

Ten Things NOT to Say or Do to a Stroke Patient

(5,274 readers)

Insensitivity is at the heart of this post. After I wrote this post, some other bloggers copied the title. I didn't mind because that's stroke awareness, front and center. 

http://stroketales.blogspot.com/2015/02/ten-things-not-to-say-or-do-to-stroke.html

Sex and the Stroke Survivor: A Case of Futility?

(5,046 readers)

Sex is very important to some people, but after they had a  stroke, not so much anymore. Tips on how to do more are included with illustrations even. Hoo-hah.

http://stroketales.blogspot.com/2016/04/sex-and-stroke-survivor-case-of-futility.html

Life and Death, the Great Equalizers

Michael R. Strain, the well-known economist, once said, "That we all start life helpless and completely dependent means we have much more in common than I appreciated a year ago" [when his son was born]. I had the same newly-found thoughts like Strain when my boys were born, and for the one I lost in between, too, as birth being an equalizer. 

The other side of the discussion at hand? We all die. Thus, the title of this post. But of the two--birth and death--death is recognized as the greatest-of-all, the king-of-the-hill equalizer. "You can't take the money with you when you die," my father would always say about wealth amassed during any person's funeral. He died, too, and he followed the everlasting rule. #6, says the angel.

Once in a while, more often now, I think about death. The thoughts are random. I think to myself, in less than 10 years, I'm going to be 80. I feel 50, even now that I had a devastating, close-to-death stroke and wearing the leg brace. Go figure.

People always commented on my youthfulness, that I seemed 10 years younger than my current age.

"45?" they would say. "You look 35!"

"Come on. 55? You look 45," they argued. 

Those contradictions, that I looked younger than I currently was, all evaporated when I turned 65. Nobody says anything remotely like that anymore. Sometimes, I prompt them. They roll their eyes.

The baby boomers, some of them, maybe even most of them, and I believed in perpetual youth up to around 60 years old. Many of them are fixated on not only being alive but looking younger as well. There are under-the eye creams for bags, wrinkle products to get rid of those very fine lines, sometimes only apparent to you, and Jennifer Aniston and the like extolling the merits of items that give you a youthful glow. I tried them all. Hogwash. Growing old is not for sissies, Joyce #2's father would say. It sucks. 

It's better that the alternative--death, I mean--unless you're willing to die, even welcome death, and not discover how stories turn out while you're alive. For example, I don't want to die: 
Before I know if I will ever be a grandmother 
Before I'll finish the 5th book (I'm working on #3 currently) 
Before I improve enough to do a 5-mile walk without stopping

The country artist, Randy Travis, said it best in the song, Three Wooden Crosses:
I guess it's not what you take when you leave this world behind you.
It's what you leave behind you when you go.

https://www.youtube.com/watch?v=cP8lCapcqwM

The final thing I'm going to blurt out in this stream-of- consciousness rant: if you're feeling anxious right about now, if I put thoughts in your head that you wish weren't there, watch  this video to feel better.  


https://youtu.be/PpJoM1Yvm-Y

Um, feel better now?

Sometimes, It's All About Your Shitty Genes

First some needed history. According to the esteemed doctors who sometimes don't know crap, I was told by one of them that I had to take Avelox for an ear infection. Avelox, I later found out, could give a person blood clots (the person in this case is me). I went to the Emergency Room for excruciating pain. 

Quoting from my previous blog (How Two Legal Drugs Caused My Hemorrhagic Stroke, and here's the link --https://stroketales.blogspot.com/2014/07/how-two-legal-drugs-caused-my-stroke.html), "The ER doctor admitted me and I was put on Lovenox, a low-molecular form of Heparin, to break up the clots. (Now here's where the story gets interesting). As a result of being on Heparin, I developed Heparin-induced thrombocytopenia (HIT), a serious side effect that may occur when one is being treated with heparin. HIT can lead to low blood platelet counts, which I had." 

HIT can also cause a brain bleed, ergo my hemorrhagic stroke. And that explanation, to my brain with parts that died, never to return, made sense enough.

But there's more to the story. Once I moved to Portland, I found out through a blood test that I had Protein S Deficiency, which causes abnormal clotting.

The National Institutes of Health say, "Protein S Deficiency (PSD) is usually hereditary, but may be acquired from lack of Vitamin K, for example. [My mother cooked everything more than it should have been, including  green vegetables, a primary source of Vitamin K, until they lost some of the vitamins inherently theirs].  The hereditary form of Protein S Deficiency is caused by a mutation in a gene called PROS1.  This condition is inherited in a dominant manner, which means that an individual who inherits only one mutated copy of PROS1 has an increased chance of developing symptoms of this disease."

So whether hereditary or acquired, I had PSD.

"There are tests for Protein S Deficiency, just ask your hematologist for screening," says James of the group dedicated to Protein S Deficiency.  [https://www.proteinsdeficiency.com/] "Apart from clotting related issues, I am not aware of any other issues caused by Protein S Deficiency."

I did a random poll among family and friends, knowing what happened to me, about whether they should get tested for abnormal blood clotting with Protein S Deficiency. Here are some of their stupid, meaningless responses:

"Hell, no. Why would I do testing if it's going to happen anyway?"

"If it's meant to be, it's meant to be."

"I hate going to the doctor."

The NIH also say, "The greatest life-theatening risk to patients with protein S deficiency is a pulmonary embolism (PE), a deep vein thrombosis (DVT) that travels through the bloodstream and gets stuck in the lungs. People with hereditary protein S deficiency have about a 2- to 11 times increased risk for developing a DVT or PE in comparison with those without a deficiency."

I had a PE, too, in 2015.

Whether the reason I got the stroke is from HIT, PSD, or both, there are tests to know the risks for both HIT and PSD. Wouldn't you want to know? 

Or are you like the ostrich who buries his head in the sand? (Not true, by the way. It's a metaphor. But it serves the purpose here). Why worry for a week or two if you have HIT and PSD before you get symptoms, if you could know the next day through tests? The tests would involve a blood draw, but man or woman up! 

Collecting Data on Stroke and Other Brain Injury Survivors Can Be Simpler When One Problem is Gone

Collecting stroke data are the bane of researchers. Few people are aware of https://clinicaltrials.gov/ where someone goes in search of a clinical trial. And to collect data from the patients or families themselves is not often done because of the strictly adhered to schedules of hospitalized stroke survivors. Welcome to the "disconnect" when patients are shamefully discharged out the door. So re-invent the discharge.

And once they are discharged, there aren't any places to find "us." The survivors and families are confused and angry to find the next step because often, there isn't any next steps. The hospitals take the brunt of their topsy-turvy positions because they struggle to get responses to their post-discharge surveys and live under the fear of readmission. Wouldn’t your life be simpler if you have a way to stay in touch with us? Why don't you work with a team who is collaborating to find a solution? 

The dreadful, devastating experience is real and is reflected on so many issues around data. You eventually lose trust with survivors, and the data is in jeopardy. When you have restored the trust and get back in touch, why would data ever be an issue? Strokefocus is the answer.

All the survivor wants is a light at the end of the tunnel, but months that turn into years live in the dark. Your research is therefore running empty often in total disconnect with the survivor community. 

I understand you are looking for data and participants to your carefully designed research projects. I have also heard so many times that you are struggling to find us. It often takes your team of very talented graduate students months to collect some data merely enough for your regression analysis. They hate how laborious it is to find us. They hate how much they have to work on the phone convincing us to come to your lab. Some of us who participated in your studies vowed to never go back. Many of us feel your researchers have no idea what we are going through and the help we want. Making matters worse, we hear that because it is so hard to demonstrate the value and impact of your research, funding becomes harder and harder to get. 

After all, there are 8 million of us crying for help. Shouldn't the task of getting a few thousand data points be like a cake walk? The issue is not with data but with a disconnect that destroyed the trust between us. 

Data collection is nothing more than “getting to know you” on an industrial scale. But you don’t even know, in most cases,  where the “we” are. And sadly, our ties with society breaks, or disconnects, at every discharge office. 

To rebuild the trust and connection, let me start by helping you understand what a survivor goes through. I had a stroke and spent 3-1/2 months in the hospital. Friends, family members, and colleagues, all of whom dwindled in time to a select few, came to visit me in the trauma center, the stroke rehab, and the step-down unit.

But after a while, I didn't want them to come. They said ignorant things like "Can you go home if you can't walk" (as if that condition would last forever) or "I hate seeing you in your condition" (even though I couldn't do anything about it) that added to my sorrow. Having the stroke itself is easy compared to what comes after: trouble peeing, constant and medically-induced constipation, double vision, speech and the resultant communication problems, one-sided mobility, anger, confusion, and frustration leading to depression, and lots more. I want to forget but can't. 

Does my stroke experience sound vaguely familiar? Of course, it does. Stroke survivors, even though no two strokes are exactly the same, follow similar patterns of recovery, similar to Elizabeth Kubler-Ross's 5 stages of grief (denial, anger, bargaining, depression, and acceptance). But even Kubler-Ross, if she were alive today, would say the stroke survivors take longer to go through the steps than, say, a death of a friend.

If you do not help turn the discharge office into the starting point of a new type of connection, then you will continue to be like chasing zillions of untethered flying kites into oblivion. We both have a stake in the game! Work with us! (1)

(1) This blog was a collaboration between me and Jing (Daniel) Gu, the founder of Strokefocus.net (new release coming this month), a site that's revolutionary for stroke survivors, caregivers, family, friends, health professionals, anybody who has stroke in their genetic pool, and other people who just want to know about strokes. If you want to read more about gracious, thoughtful, and oh-so-brilliant Daniel, check out   https://stroketales.blogspot.com/2016/10/a-place-for-everything-stroke-and-other.html