Preparing for West Nile 2013

Preparing for West Nile 2013

Why West Nile Isn’t Just Media Hype

The mosquito is the most deadly creature in the world, killing well over 1 million people a year across the globe. And we thought the great white shark and grizzly bear were scary! Well, they are, but not near as deadly as the pesky mosquito.

To put that in perspective, that would be like eliminating the entire population of Dallas, Texas, in one year. Pretty staggering stat when you look at it that way. And according to the U.S. Center for Disease Control (CDC), there were more than 5,300 cases of West Nile Virus (WNV) in humans last year in the U.S. Roughly half of these were West Nile fever, which means the patient had flu-like symptoms, such as fever, headaches, muscle aches or fatigue. And it’s quite possible that the number of cases is much higher, but some patients did not seek medical help, so their information was never reported. Stinks to be sick, but this gets more fearsome.

The other half of human cases were of the neuro-invasive type. What does that mean? It means the virus broke the blood-brain barrier, which is quite rare. The blood-brain barrier protects the brain from viruses and other foreign substances. Once this barrier is broken, the brain cannot kill the virus, but it has defenses to slow the virus from reproducing.

This “rare” patient will undergo one of three life-threatening results in these cases:

  1. Encephalitis – quite simply, inflammation of the brain
  2. Meningitis – inflammation of the membrane around the brain and spinal cord
  3. Acute flaccid paralysis – inflammation of the spinal cord

The first two of these essentially mean that an infected tiny flying insect caused an acquired brain injury (ABI). One that, other than malaria and Japanese Encephalitis, has no prevention.

Unless you’re a horse.

For more than 10 years, horses have been protected by a vaccination for WNV. But why not humans? Maybe because it’s not financially attractive for pharmaceutical companies to produce one and get it passed through the U.S.’ stringent FDA guidelines. Perhaps the WNV epidemic of 2012 will make these entities rethink this.

So why should you care? 

Because more than 50% of neuro-invasive survivors never return to work after undergoing this type of brain injury. Let’s personalize that. Statistically speaking, about 2,700 people in the U.S. left the work force last year. Not due to layoffs or the economy. Not due to a car accident or cancer. But due to a simple bite from a winged nuisance. Of the remaining 2,700 who did go back to work, about half took a lesser role due to the brain damage. And nearly 250 didn’t have the option of returning to work because they didn’t survive.

Regardless if neuro-invasive WNV survivors went back to work or not, most will suffer life-long residuals. These residuals (or sequella in medical terms) are far reaching, including extreme fatigue, short-term memory loss, concentration issues, difficulty learning new things, balance issues, loss of vision, among a long list of others. Many experience behavioral disorders from frontal lobe damage, so their personality is altered … overnight. For many, debilitating headaches become a daily struggle. Imagine a lifelong migraine.

Depending on the parts of the brain most impacted and the severity of the onset, diagnosis can be difficult. For many, getting an accurate diagnosis is difficult because patients have such varying symptoms. It’s quite common for patients to bounce from doctor to doctor without answers to why they suddenly cannot function like they did prior to the mosquito’s release of the brain-altering toxin.

But if it affects the brain, why would it be so difficult to diagnosis? Lots of reasons, including these:

  1. MRIs are not as advanced as we’d like to think.
  2. Even in severe cases, MRIs are not always conclusive. Impacted areas of the brain are not easily detected.
  3. Cases present differently based on what portions of the brain are most affected, so many other illnesses are considered before encephalitis or meningitis (except, perhaps, during an epidemic). Some of the common misdiagnoses include flu, MS, complex migraine, psychological disorders or stroke.
  4. Some patients look and sound “normal,” so despite them saying “I don’t feel right … I can’t remember things and I’m sleeping all the time,” they are dismissed as candidates for psychological evaluation.

Another strike against survivors in the U.S. is there is no protocol for treatment. Makes advocating for yourself quite important to create a more favorable recovery.

In other geographies, such as the UK, once a patient is diagnosed with encephalitis or meningitis, doctors follow a regimented course of treatment that includes behavioral therapy, occupational therapy, physical therapy, medications to address lingering residuals and counseling.

Doesn’t sound like a battle you’d want to fight, right? So how do you prevent West Nile if it’s bad again this year?

  1. Don’t wave off the tips just because the media has said them a zillion times. They are repeating them for our benefit.
  2. Spray down. Yep, bug spray creates a nasty, sticky feeling, but read this again and maybe you’ll think twice.
  3. Stay inside during peak mosquito hours.
  4. If you like to be outside for neighborhood BBQs, invest in a bug zapper. Embrace the endorphin that you won’t contract a mosquito-borne illness each time you hear the zap.
  5. Drain standing water. And encourage your neighbors to do so as well. If they live next door and have a green swimming pool in need of chlorine, take action.
  6. Tiki torches can provide help in a limited area.
  7. If you don’t like bug spray, try battery-powered personal devices with a high pitched sound that repels mosquitoes.
  8. Wrist bands work for some people and don’t leave a residue on your skin.

Looking back at 2012‘s epidemic, one thing the media emphasizes about contracting West Nile is that those who are most at risk for this virus are primarily the elderly or immune compromised. This can happen to anyone, really. Don’t get a false sense of security and think all the recommendations for taking precautions are “for everyone else.” There is no treatment for West Nile. If you get it, there is no silver bullet to reverse its effect.

A mosquito changes many lives … sometimes temporary illness, sometimes brain damage and sometimes death. Don’t let it unnecessarily change yours.

How a Brain Injured Person Prefers to be Treated

Blog #2:

How A Brain Injured Person Prefers to be Treated

I may look just fine and I may seemingly perform great, but you don’t see the efforts to maintain a “sense of normalcy.” Please be gentle with me.

Tip #1: Fatigue is one of our greatest obstacles

  • If you’ll give me time to rest between meetings, activities or long drives, I will likely function much better and be the spouse or friend you are expecting. The more fatigued I am, the less likely I can focus on what you are saying or how well I perform at simple things. Silence often means I’m recharging my batteries – not ignoring you.

Tip #2: Please don’t compete with the voices in my head!

  • Okay, so I’m not really hearing other voices in my head, but it feels like it when I’m at a dinner and everyone is speaking. After a brain injury, concentration is quite difficult. I can “hear” you, but I can’t “concentrate” long enough to absorb what everyone is saying if more than one person is speaking at a time. I find myself checking out. I watch the pleasant smiles, the winks, the surprised looks … but I have no context unless only one person is speaking at a time.

Tip #3: When you think you’re giving a compliment, you may actually be dismissive

  • “You look fine to me.” Wish I had a dollar for each time I’ve heard that. And as much as I’ve coached myself, I’m still offended each time. Unless you’ve suffered a brain injury, you have no idea the effort required to rise above the residuals. A suggested alternative? “You work hard to make your residuals less obvious to the outside world. Congrats on figuring it out.” Or something along those lines …

Tip #4: “Forgetfulness? Happens to me all the time!”

  • I might suggest that you stand a few feet away from a brain injury survivor after this statement. Ouch! Here’s the deal … all humans have forgetful moments. But for BI patients, we lost our short-term memory overnight. There wasn’t a long-term transition. It just happened. So please realize that comparing to your natural aging process, we find no comfort. I was only 38 when my short-term memory somewhat disappeared. That isn’t natural aging.

Tip #5: The later in the day, the greater the likelihood I’m not “with you”

  • Ever heard of aphasia? Simply put, it’s the inability to find words. I can look at a picture of a hammer – hell, everyone knows the word for “hammer,” but I look at it and can’t tell you what in the world it is. My thoughts might vary from “tool thingy” to “chamber.” Realize that finding words can prove difficult, especially as the day progresses. Be patient with us.

Patients … Advocate for Yourself

Whether your issue is neurological, a joint pain or a fussy big toe, you are your best advocate. No one else will do this for you. Take charge in the lack of diagnosis and perhaps you’ll benefit from the lessons I learned the hard way …

Tip #1: Trust your gut and track symptoms

  • You’re the only one who knows how you really feel. Even if you can’t put your finger on it. Take notes to document the neurological phenomena (or whatever your issue is). Having a hard time finding words? Dizzy? Bouncing from task to task without accomplishing anything? You may not think to record such “silent” symptoms that only you experience. Jot them down with the frequency, intensity and duration. Share them with your doctor.

Tip #2: Find a doctor who will listen

  • Didn’t get the answer you were looking for? Treated as if you were crazy? Yep. Happened to me over and over, but I didn’t give up. There are so many good doctors out there. Be “patient” and keep seeking help until you find one who will take the time to think outside the box. But you need to be willing to invest in yourself by documenting your story along the way. Don’t accept “there’s nothing wrong with you” as an answer when you know your body is telling you something different.

Tip #3: Dress the part

  • I found that the better I dressed, the more serious doctors took me. Even if you don’t feel good, put those nice slacks on that says you care about yourself and you’re worth the doctor’s time. The better you treat yourself, the more they pay attention to you, from my experience.

Tip #4: Conduct research to educate yourself

  • In this age of the Internet, we are better equipped than ever before to research information to prepare us for doctor visits. Be careful not to make conclusions, however. Just because several of your symptoms match a particular disorder or illness, don’t self diagnose. But use the information to document your relevant ailments so you can make the most of your doctor visit. Doctors are trained to filter based on their extensive training that most patients don’t have. Your research can help you prepare important questions.

Tip #5: Send a letter in advance

  • I’m thankful I’m not a doctor. Can you imagine bouncing from patient to patient, all of them presenting so differently, and needing to make a determination, all while needing to learn new medical info constantly being released … HIPPA laws breathing down you … and not to mention those pesky patients who are forcing you to invest in malpractice insurance? Doesn’t sound very profitable. What you CAN do for your doctor visit is send a one-page letter in advance. Most doctors are watching the clock, realizing that they have about six minutes per visit before you become a cost. Save them time. Send a one-page letter in advance of your chief complaint and expectation of the outcome of the visit. They will give it thought in advance and likely make your visit more productive. Works for me …

Tip #6: Get multiple opinions

  • It took me 27 months and 12 doctors to get an accurate diagnosis. Does that mean the system failed me? No. It just means that all doctors look at the way we present differently. Thankfully I found a neurologist who diagnosed by process of elimination. He explained why all my previous diagnoses did not match up and then found one that would explain all the neurological phenomena. When I researched on my own post diagnosis, I was amazed at how well it matched – to a “T.” Don’t be afraid to get multiple opinions. It might be what saves your life … or puts your mind finally at ease.

Tip #7: Take notes during your appointment (or record it)

  • We are not being judged on expert memory during doctor appointments. Take out a pen and paper. Take notes. Your doctor will most likely appreciate that you are thoughtful about what they are saying by documenting the conversation. These notes give you an opportunity to reflect and determine follow-up questions.

Tip #8: Four ears can be better than two

  •  Have memory or concentration issues? Bring someone you trust with you to help with notes or real-time questions – especially someone who has been following your medical issues. They may think of questions that help take advantage of the time with the medical practitioner. How many times have we left the exam room and then suddenly thought of five more questions? Happens to me all the time.

Tip #9: Share even what might sound ridiculous

  • As embarrassing as it is, my problem solving was so damaged that I couldn’t figure out how to leave a grocery store. I’d stare at the exit and entrance signs … “well, I am entering the parking lot, so ‘entrance,’ right?!” I’d pretend to study my receipt until another patron exited, then quickly follow them out. If I’d shared this or that my body temperature changed or that I forgot how to cry, perhaps I might have been properly diagnosed much sooner. But these sounded so irrelevant that I skipped them. Big mistake on my part. 

Copyright Majamo Publishing, LLC 2013. All rights reserved.

Brain Wreck, a memoir

What motivated me to quit a good-paying job during a tanking economy without a salary? Because after 27 months of searching for a diagnosis, I discovered that encephalitis was the culprit for destroying my short-term memory overnight. It explained why problem solving and concentrating became so difficult.

Encephalitis is a brain injury with long-term residuals quite similar to stroke. Yet this “rare” illness is not always thought of as a diagnosis in its critical stage, so patients who aren’t severe enough to be hospitalized fend for themselves as they struggle to recover.

When I was diagnosed, I was inspired to take action, so I published my journey in a book called “Brain Wreck.” As a patient advocate, here are a few tips for navigating the medical system in the U.S. Hang with me and I’ll post new ones along the way … and hopefully you’ll want to take the “Brain Wreck” journey.

 

Follow

Get every new post delivered to your Inbox.