When Words Don’t Come

“Still Alice” captures the dramatic nature of dementia in its recent release in theaters. Julianne Moore gracefully depicts the real-life trauma of forgetting and the unfortunate shame that accompanies that circumstance.

If years lend us the opportunity to grow older, most of us will gradually meet this tragic and startling experience head on.

As a patient advocate for encephalitis, I often have the opportunity to speak to doctors, nurses, caregivers and survivors about this illness — diagnosing it, treating it, living with it, caring for it and understanding its dramatic change in a person’s identity.

The difference between “Alice” and encephalitis patients is that it’s not gradual: it’s overnight. At only 38, my short-term memory was shot overnight due to encephalitis, a brain injury. And in these times of fortune when I find myself on stage to educate, words vanish. Even concepts.

Maybe it makes it real for thevanish audience. That this seemingly-has-it-together professional actually faces hurdles. For me, though, it’s a frightening experience. The closer I try to get to the word, the farther it gets. The feeling is that I’m being robbed of my credibility.

Regardless of how a person arrived at being “forgetful,” think about these things when words don’t come:

  1. We are reduced to humility when words vacate our minds. Be gentle.
  2. Please, please, please refrain from saying, “happens to me all the time.” This is unintentionally dismissive.
  3. Unless the memory-challenged person requests help filling in blanks, give us time or wait for us to ask for assistance. Suggesting words might actually take us farther from our original intention.

For directors Richard Glatzer and Wash Westmoreland, well done on unveiling the realities of memory issues in all their colors – harsh, tender, brave and even comical.

Stick for Brains: 5 No-Cost Ideas for Sticking Memory to Your Brain

Got Sticky notes on your mirror? Frig door? Back doorknob? It was when my cat’s fur was littered by vet reminders that I decided to work on memory.

Memory matters. It’s what shapes our unique identities. Whether recalling a significant childhood milestone or remembering names in a business environment, memory plays a vital role in our lives.

After encephalitis, a brain injury similar to stroke, a memory network’s encoding can get confused with “errors.” These errors obstruct thoughts that were likely easy before the injury, such as remembering a word, knowing why we just went into the garage or what three items we’re needing from the grocery store.

We can clutter our homes and cars with Sticky notes as a temporary fix to these errors or we can engage in cognitive learning to help with long-term brain plasticity—a brain’s ability to change neural pathways and reorganize as it learns new things or commits new things to memory.

For those of us who choose to de-clutter, here are 5 no-cost tips that can enhance our memory performance:

  • Play the alphabet game: My son and I played this all the time in the car the first two years post encephalitis. I had no idea I was helping myself heal at the time.
    • Here’s how it works … one word per letter of the alphabet in alpha order, such as “apple, bicycle, Coke, dungeon, elephant …”
    • You get the gist.
    • We mostly used objects that I could picture to reinforce the word with an image.
    • Throw in words with multiple syllables for an extra challenge. Or words that cater to the ages involved in the game.
    • Forcing the recall on a verbal and visual level involves more senses, which creates better working memory skills.
  • Design mind maps: Every brain, whether injured or not, categorizes information in a diverse manner.MindMapA mind map can help channel our thoughts by plotting them out, which is related to how our brain stores information.
    • I prefer paper so I can quickly draw vs. being confined to a keyboard and/or a software program.
    • Where a thought expands, simply give it a new track before losing the ideas that would have otherwise disintegrated.
  • Get physical: Exercise is great … helps with oxygen flow to the brain. Applying our motor skills is another form of exercise … it helps the brain learn new information.
    • A great example is using our hands to acquire a new skill, such as mastering the alphabet in sign language.
    • I actually use sign language as a memory tool in conversations or in the car. If I need to remember to pick up a prescription on the way home, I form the letter “P” as a reminder for prescription.
    • If someone else is speaking and I want to mention something before I lose the thought, I shape the first letter of the idea under the table so I can contribute when it’s my turn to speak.
  • Express yourself: Studies show that emotionally charged events are easier to remember … especially positive ones. Celebrating past pleasant experiences keeps them alive in our memory.
    • A home run that won the game. The first grandchild. Getting to pick out a special pet for keeps. A great part in the school play. Wedding day.
    • Telling and reliving these memories help reinforce the paths in our brains. Use an old photo album as a memory aid to help recall details.
    • Don’t remember? Ask a family member to use photos to recall those stories for you and relish the details.
    • Use different emotions in recounting the stories … scared about hitting the pitcher’s ball, nervous because the local rival was in the audience, thrilled when the ball made contact with the bat, anxious when rounding second to third base, and invincible after completing the home run.
  • Use Sticky notes: Half of what I get done around the house or town is due to these small ingenious pieces of paper affixed to strategic locations.
    • If I adhere a Sticky note to the same place all the time, I won’t notice it. Try changing up the patterns so that a reminder message stands out. I stick them to my cell phone if it’s a short-term need, such as returning a call. If it’s an errand, I stick a note to my car keys or dashboard.
    • For everyday reminders, stick notes to a pillbox, the refrigerator handle or the toilet seat (well, strike that last one).
    • Keep stickies random for general ideas to remember, such as exercise, thinking positive thoughts or doing deep breathing to slow down.

Final thought as I close out the topic on memory. It’s easy to get down on ourselves when we realize we lack the sharp memory that we could previously rely on. Pretty darn aggravating. However, we have a choice in being stuck in that mode or in finding new paths that can help. Try taking the challenge of stretching: you might be amazed at the results. If you like these tips, you might consider reading Brain Wreck, which has tips throughout as well in the afterword.

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**


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