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

6 Things I Learned from Robin Williams

Since hearing about Robin Williams’ death, I’ve been stunned at my reaction. How can I grieve over someone I never knew? I’ve paused to notice the richness he represents in influencing me and how his tragic death shakes me. Here are 6 things I’ve come to realize because of Robin Williams:

  1. Depression doesn’t discriminate. By most people’s definition, Robin Williams was wildly successful and had much to celebrate. However, “things” and accomplishments don’t define us nor do they “fix” depression. We are all human, even those we put on the pedestal who we want to think are flawless and free from darkness.
  2. Doctors’ greatest assets are humility and tenacity. In the true story of “Awakenings,” Williams plays Dr. Leo Sayer, a doctor whose diligence discovers a commonality among his catatonic patients. Encephalitis (swelling of the brain) is that common denominator and Williams works feverishly to find treatments for “these people who are alive inside.” Williams’ and Robert DeNiro’s stunning performances brought awareness to encephalitis, a brain injury that affects 20,000 Americans per year and taught us that we all count – even those who cannot speak for themselves.
  3. Laughter is a misleading medicine. Robin Williams mastered the ability to tickle our funny bone. His humor protected his heart as best he could while accepting the overwhelming responsibility of charming the world, even when he was suffering inside. My lesson from him is that I’ll listen more carefully to loved ones who divert from a fragile moment and respond instead with humor. Continue reading

Go Home … It’s Only a Brain Injury

Imagine life as a parent heavily involved in their child’s life, the bread winner in a cut-throat corporate world, active in sports, a frequent traveler and public speaker. And suddenly all of that is taken away from something as simple as a mosquito bite … unable to read to their child, struggling with speech, never fit to return to work, balance too difficult to engage in physical activity and travel suddenly a thing of the past. And yet, due to lack of awareness of this illness or standardized treatment protocols, many patients are left to navigate their own recovery from encephalitis (swelling of the brain).

10 Little-Known Facts About Encephalitis

  1. Each year, more than 20,000 people get encephalitis in the U.S. and 500,000 worldwide. This is at a rate that doubles and triples other well-known rare illnesses, such as MS, ALS or cystic fibrosis.
  2. Despite encephalitis being a brain injury that kills 20% of its victims, it can be misdiagnosed with less severe illnesses such as flu or complex migraine and sometimes even stroke or psychosis.
  3. More than half of survivors are unable to return to work, resulting in a 70% reduction in income. Of the ones who return to the workforce, more than half take a lesser role due to residuals. Continue reading
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