Show You Know: Some Amazing Encephalitis Stats

Sharks attack roughly 75 people worldwide a year, killing an average of 5. In the U.S., out of 1,300 tornadoes per year, about 60 people die. We all have a healthy fear of sharks and tornadoes. But what about mosquitoes? They kill more than 1 million people per year around the globe, claiming the prize as the world’s deadliest creature.

mosquitoToday (Feb. 22) is World Encephalitis Day. One of the most common causes of encephalitis (inflammation of the brain) is from mosquito-borne illnesses. West Nile Virus, Japanese Encephalitis, St. Louis Encephalitis and Western Equine Encephalitis (among others) are all the result of these pesky flying insects that pass diseases to us as they nibble on our arms and legs. Encephalitis affects 500,000 people each year globally — 20,000 in the U.S., and kill ~20% of its victims.

Encephalitis is a brain injury that creates a chronic neurological disorder that can impact much of the body, including the respiratory, muscular, digestive and nervous systems. There is no cure. Delayed diagnosis of encephalitis can impact mortality. And even though this impacts 20,000 Americans each year, there are no standardized treatment protocols, leaving many patients to figure out their own treatment plan.

No one wore pink ribbons today. Or took an ice bucket challenge. Or even wore a “mosquito busters” shirt. Yet encephalitis can affect anyone at any time anywhere in the world. The onset can be dramatic with symptoms such as high fever, extreme headache and fatigue, hallucinations, vomiting and mental changes. And the results are often life changing … memory loss, social changes, sleep disorders (and too many more to list). More than 50% are unable to return to the workplace. Encephalitis can be due to something perceived as simple as a mosquito bite, vaccine reaction or Herpes cold sore or as traumatic as a head injury.

On the occasion of the second World Encephalitis Day, I applaud the doctors who immerse themselves into understanding this rare illness, the caregivers who improve the quality of lives affected and the survivors who push daily to keep on keeping on.

Thanks to the International Encephalitis Consortium, Encephalitis Global and the Encephalitis Society for moving the ball forward in understanding, research and awareness.

Copyright 2015 Majamo Publishing, LLC.

Following Instructions: Like a Foreign Language Post Brain Injury

Whether it’s a short recipe, instructions to play a kid’s game or basic directions to hook up a gadget, just a simple set of instructions can seem like a foreign language to a brain injury survivor. Following instructions involves cognitive skills such as attention, memory and problem solving. These skills are often negatively impacted during brain injury, such as swelling of the brain in encephalitis or bleeding in the brain in stroke.

Even with compromised multi-tasking and working memory, there are strategies to get back in the kitchen or playing new games with your kiddo. Like learning a foreign language, challenging the brain can help find new paths to help memory, communication and advanced processing. Here are some tips for making instructions less of a communication barrier:

1. Chop steps down into manageable bites – If following a recipe is difficult, start with a 5-step Hamburger Helper-type meal before tackling a main dish with multiple sides. Long recipes can be taxing, making the return to the kitchen less appealing because of the perceived extreme effort. Additionally, many of us endure olfactory changes, which makes the finished product less appetizing from loss of taste/smell. Make cooking fun (either again or for the first time) by building confidence with smaller dishes. Use minimal steps. Change up the game to determine how taste may have been affected. Funny how blue cheese and arugula might have been among my least favorite foods before encephalitis …

2. Reveal one step at a time in the directions – The year after my illness, I was thrilled on the arrival of a card game I ordered for my son. Until we opened that small box with multiple pages of instructions. I recall how defeated I felt … reading the directions over and over, yet having no remote concept of how to play. Since then, I’ve learned to cover up all the other steps when trying to comprehend something complex. Just digest one step at a time. Try it sequentially for best results. (it’s ok to laugh, even in brain injury …)images Continue reading

Encephalitis Survivor Tips Vol. 2

Brainstorming among the brain injured … now there’s an interesting way to spend a Saturday afternoon! At our Nov. 22nd survivor/caregiver meeting, these were the top mentions of helping us help ourselves. That’s what I call a successful brainstorm.

Top tips:

  1. Listen to your body. Learn to pace yourself. It sounds so simple, yet we all seem to have a common denominator … overdoing it. It’s hard to swallow that our bodies are usually no longer able to keep the same pace as we used to. We seem consistent in our stories that as soon as we feel like “our old selves,” we try to resume our former lifestyle and quickly are reminded that pacing is essential to our “new normal.” Stress tends to cause all of us an amount of backsliding.vegas
  2. Avoid overstimulation. One survivor compared a busy restaurant with Las Vegas. How appropriate! When you’re feeling agitated but don’t know why, check for disrupters such as volume, light or competing stimuli. If your environment is too taxing, consider options such as asking one person to speak at a time, turning down the volume, turning off the TV while working on the computer, or choosing a restaurant that’s quiet.
  3. Online cognitive tools can help. I have personal experience in using Cogmed to improve my working memory. Our working memory affects math, reading comprehension and following instructions. Continue reading

Seize the Brain!

Asymptomatic, a beautiful word for someone who knows chronic illness. Today is one of the few days in nearly seven years I woke up with energy, a respite from the daily fatigue that squashes my creativity and challenges my temperament. Today the word “asymptomatic” rolls off my tongue with ease, absent of my usual fear of slurring a word.

As I type this, it’s one of the few days I can recall that the vertigo isn’t making me nauseous when I turn my head too quickly or I lean over to pick up my cat. And because of these simple things I can accomplish without contributing to the problem, I feel more alive inside. Continue reading

The Power of Meeting Fellow Encephalitis Survivors

When I found the Encephalitis Global group on Inspire.com, I couldn’t believe the posts I read from fellow survivors and caregivers. It was as if they were reading my mind. If you haven’t connected with others affected by this cruel illness, I urge you to reach out. I can’t emphasize enough the healing aspect of interacting with others who truly “get it.” Who experience similar health and emotional issues.

Encephalitis and the residuals of West Nile can be quite isolating. I’ve discovered that by connecting with others, we gain power as we overcome some of the often invisible residuals. Empower yourself by taking that brave step to connect with others.

If you’re able to join EGlobal’s March event, I encourage this powerful experience of expanding your personal network to include those who can make your journey more manageable. And even funny … yes, we find humor in the face of challenges. But we’ll be the first to anticipate that tear with a tissue when you bottom out. As we all do.

For those in the Dallas, TX area, we have a group that meets quarterly at no cost. Sometimes we are only a handful of 6 of us and other times as large as 25. If you’re touched by this illness and looking for guidance, support or just the acknowledgement that comes from meeting others, please join us. My encephalitis connections are like family to me now. I’m honored to be part of this unique circle.

Nov. 22 Dallas-Area West Nile and Encephalitis Gathering …
Who: Survivors and caregivers of any form of encephalitis (WNV, HSE, auto-immune, etc.)
When: Nov. 22, 2014 2pm – 4:30pm CST
Where: Lifepoint Church 4501 Hedgcoxe Rd, Plano, TX 75024 (north entrance)
What: Casual setting to share coping mechanisms, meds that work, tests or treatments that help, vent a little if needed, share a funny story, etc.

Topics will vary including rehabilitation, facing friends/family unfamiliar with our illness, referrals and cognitive treatments. Tell us what you want to talk about and we’ll address it! See http://www.bdbrainwreck.com for additional information.

Other: Free; childcare not provided; open to anyone affected by this topic, drinks/light snacks provided, not a Lifepoint-sponsored event

**RSVP: becky@bdbrainwreck.com**

River of Tranquility

Making a tough decision or facing a health trial can create chaos for the soul. Today I take a break from promoting health tips for encephalitis or health challenges and address the healing aspect of nature.

The River of Tranquility

Peace flowing over the silky rocks with a steady cadence.

Rustling leaves guided through the gushing path.

Nurturing God’s creation.

Feeding my spirit and soul.

Light breeze whispering through the leaves.

The sun’s glow accenting rock patterns.

Gold, green and red hinting change.

Limbs dangling over the gentle roar.

Peace. I’m at peace.

I can do anything.

Solitude.

The River

 

Encephalitis Survivor and Caregiver Tips Vol. 1

For those who attended the Dallas-area survivor/caregiver session this past weekend, it was awesome to connect with such great people. In the spirit of sharing our experience of tips and insights with others affected by this cruel illness, this post summarizes much of our discussion. For those who have not connected physically with others touched by this illness, I cannot impress upon you the healing and validating experience it is to meet others. I encourage you to attend Encephalitis Global’s upcoming Feb. meeting in Las Vegas. In the meantime, here are tips to share … thanks to all of you who participated to create this meaningf6028465186_a4f180a49a_qul list of suggestions.

Memory tips

– Carry a mini notebook to be a “memory assistant.” Create a system where you review your pages at the end of the day for action items, dates to put on the calendar, things to research, etc.
– The Alzheimer’s patch is helpful for memory loss. If phased in, it has less side effects than the pill.
– Most of us use pillboxes to help with day of the week, or even morning vs. evening pills. One suggestion was dating the box so we’d know that we took “today’s Monday pills vs. last Monday’s pills.”
– Use a GPS app to minimize getting lost with maps and directions
– Take a picture of the parking spot or text self a parking spot number/location to avoid misplacing a car
– Download the “Watchminder” app to schedule recurring reminders, such as pills, taking a break from taxing activities, eating, etc.
– Some suggest that less routine and more “living each day in the now” was less pressure to remember details and instead create a more fluid environment.

Reading enthusiasts
– For those troubled by reading and concentrating, a great tip was to subscribe to the Deaf/Blind services for books on audio. Then read the book text along with the audio voice to help reinforce reading words and memory.
– Take notes to keep pace with the book or article.
– Create a cheat sheet of the characters for books to keep prevent having to go back and re-read material.

Behavioral therapy
– Many cited a psychologist or “therapist” as a safe means of shedding the trying moments as an encephalitis patient .
– Therapists help us “grieve” the loss of who we were and help us embrace the “new me.”
– Take a grieving class to accept our losses and deal with the anger and unfairness.
– Learn to live in “the now.” Realize that losing friends who don’t understand our “new normal” will be part of the process.
– Working hard to “cover” our illness can contribute to feeling dismissed.
– Find others to share. Don’t isolate yourself. Don’t give in to the pressure of letting others down due to a brain injury that you could not prevent.

Caregiver role
– Our loved ones, albeit a family member or friend, love us and want to help. But they don’t always come equipped with how to handle this newfound role.
– The more we are independent in times when we truly need help, we deny them the role to take care of us. Reverse the roles. Try to understand they are trying their best … and that they have been thrown into helping us just as we are being helped. Continue reading

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