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 meaningful 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. Physical therapy
– Suggestions for using a cane for balance issues on uneven ground or unfamiliar territory

Therapies to consider
– Hyperbaric chamber to release the pressure on the brain as a natural treatment using oxygen for treatment
– Local DFW doctor who specializes: Dr. Alfred Johnson, treating WNV patients
– Cited as very patient and spends an unusually sufficient generous of time with the patient: http://www.johnsonmedicalassociates.com
– Vitamin IV – For auto-immune disorders, consider “super doses” of vitamins via IV to charge the immune system, including Vitamin C, D, B, etc.
– Volunteer where possible. Take care of someone else’s needs even if you can’t work. Maintain our skills where possible. Life improves when we feel productive and contribute to helping others.

WNV focus
– Dr. Kristy Murray is leading a WNV study through the Baylor College of Medicine as Associate Professor of Pediatrics in the Houston area.
– Her field is tropical infectious diseases as a veterinarian, epidemiologist, virologist and clinical researcher.
– She specializes in vector-borne and zoonotic diseases, including West Nile virus, dengue, St. Louis encephalitis, eastern equine encephalitis virus, Rocky Mountain spotted fever, Chagas disease and rabies.

Photo used under Creative Commons from vchili

Copyright Majamo Publishing, LLC 2014