Encephalitis Survivor and Caregiver Tips

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.

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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

Medical Doctors: 5 Things Brain Injured Patients Wish They Could Tell You

Brain injury survivors often have words that fail us at key moments, such as an important doctor appointment. Could be aphasia, but sometimes stress/fear prevents the words to ever form. After interacting with hundreds of brain injury survivors (mostly encephalitis), these themes surfaced that BI patients universally mentioned as desirable for their clinicians to know: 

1. We don’t expect you to know everything – I’m sure you’ve run across patients that lack patience. They think earning a doctorate degree means you are now a God with all the answers. However, the majority of us do not believe that way … especially those of us with a rare illness that got a 5-minute mention in one of your medical school classes 25 years ago. We just want you to tell us when you don’t’ know. It really is okay to say, “I don’t know, but your experience is very real” and give us alternatives to consider. The most frustrating experience as a patient is when a doctor treats us like a “head case,” leaving us to believe we’ve created this illness due to psychological issues. 

2. Prompt us on logical questions that we are not asking – Often when we receive new medical information, we are trying to absorb it. Maybe the terminology is over our head, so questions don’t form. Or maybe it’s disturbing to hear, so we “lock up,” trapped in a state of fear. If we don’t ask questions that you think we should be curious about, please prompt us, even if it sounds so simplistic. Something along the lines of “Often people in your situation ask about …” or “A common concern is …” Chances are we’ll embrace the thoughtfulness and extra info. 

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How To Advocate for Yourself as a Patient

Becky Dennis:

7 tips for advocating for yourself http://goo.gl/k3PIrz

Originally posted on Becky Dennis:

Whether your issue is neurological, a joint pain or a fussy big toe, you are your best advocate. You have the experiential information required. It’s not up to your doctor; it’s up to 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 (even the seemingly silly or insignificant ones)

  • 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), including frequency, duration and severity. 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…

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Nurses: 5 Ways to Improve A Brain Injured Patient’s Experience

Whether our brain injury happened 5 years ago or 5 weeks ago, many of us are still coping with our new identity. The first moments at a doctor appointment are with you, who can help set the tone for how well we perceive our experience.  

Many of us have invisible residuals such as a greater effort to accomplish little things that used to come natural. Or remembering names. Or understanding what in the world these 8 new medications we’re taking are supposed to achieve. Here are 5 ways you can improve our experience when we have a doctor visit:

Tip #1: Tell us your name even though we see you a lot — Many of us are too embarrassed to admit that “yes, I see you often, but I’ve forgotten your name.” No need to be explicit, just work your name into the conversation and we’ll recognize what you’re doing. Maybe even write it down on the paper sheet covering the exam table like some waiters do in crayon on the paper “table cloth.”

Tip #2: Acknowledge the gravity of the issue – While we love to see and hear about improvement, many of us are dealing with a cruel, silent illness. We live in a dismissive world of people saying, “Well, you look fine to me.” Or “I forget things all the time, too.” For many, our forgetfulness happened overnight. Acknowledgement of the change as significant and severely frustrating as we have undergone is profoundly welcome and can help set a tone of understanding that makes the appointment more productive and less intimidating.  Continue reading

Proud to Support World Encephalitis Day

On February 22, join in the inaugural annual awareness day to connect thousands of people around the world, enabling a better understanding of the devastation that can be caused by Encephalitis.

Encephalitis is inflammation of the brain and can happen to anyone, anytime, anywhere, at any age. This brain injury can be triggered by many causes, including the cold sore virus, mosquitoes,  or auto-immune disorders. However more than 50% of causes are unknown. And there is no cure. This illness affects 20,000 people per year in the U.S. and an estimated 500,000 across the globe with a mortality rate of 20%.   Continue reading

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