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. Before I initiated training, I could not remember my 10-digit password for a conference bridge I’d had for 2+ years. Now I easily remember it and I’ve learned strategies for recalling a string of information. Others have used Lumosity and cited similar success. It’s worth looking into.
  4. Design your own treatment. Technology such as MRIs do not have the capability to determine all of the areas affected in your brain post encephalitis. A neuropsychological exam may prove helpful in providing guidance on where you are struggling, but without a baseline test, it won’t show the “before and after.” Take charge of yourown recovery by requesting the various treatments and therapies available that may not occur to your health care team. These include occupational, speech, physical, behavioral, balance and cognitive therapies.
  5. Explore medications that can help with focus and concentration. My short-term memory and focus were dramatically impacted by encephalitis. While I’m not a fan of taking prescriptions unless absolutely necessary, I have benefitted from medications that were designed for people with ADD or ADHD as this residual is problematic enough to warrant potential side effects. Many survivors who have attended these meetings have reported similar benefits of achieving more concentration to stay on task with the assistance of drugs such as Adderall, Ritalin and Dexedrine.

We all agreed that this illness is quite a dismissive experience. The invisible nature of our ongoing symptoms are a blessing and a curse. While we don’t want our identity to be our illness, it’s easy for family and friends to dismiss the ongoing struggle resulting from encephalitis. Most cite a change in blood pressure, taste, body temperature regulation, memory, sleep patterns, pain tolerance, balance and even fight-or-flight responses, making even a good day a challenge. Keep this in mind when telling a survivor “you look fine to me …”

Copyright Majamo Publishing 2014.

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