YOU HAVE BEEN DIAGNOSED WITH HE...

NOW WHAT?

Encephalitis is a type of brain injury causing temporary or permanent changes to a person's life.  This can lead to anger, frustration at the new physical or emotional changes

that a person goes through.

How do you live with this "new normal?"

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Tips To Help Live With an Autoimmune Encephalitis

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Exercise or Physical therapy

According to Mount Sinai School of Medicine (Research and Training Center on Community Integration of Individuals with Traumatic Brain Injury, Dept. of Rehabilitation, Mount Sinai School of Medicine), "People with TBI who exercised had fewer physical, emotional and cognitive complaints and symptoms, such as sleep problems, irritability, forgetting, and being disorganized.Non-exercisers with TBI complained of more cognitive problems or symptoms than did those who exercised, suggesting that exercise may improve abilities such as memory, thinking, and the like." More

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Rest

As important as exercise is- even more with an AE is getting plenty of rest.

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Eating well and getting enough fluids

This may sound obvious but it is extremely important.

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Overstimulative enviornments

• Avoid them if possible or limit to small groups. If you must attend make sure to have earplugs, noise canceling headphones, sunglasses if there will be too much lights or flashing lights.

• Leave uncomfortable social enviornments especially when feeling overwhelmed.

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Quiet Time

Sometimes excusing yourself from situations and going to a quiet place can help yourself decompress.

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Speaking to a therapist

You are going through so much emotion, confusion, disability...talking to someone does help. Stress is a big trigger for flares and having someone listen can be helpful.

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Support

Try to get as much support as you can from family, friends, support groups. Remember you are NOT ALONE

Feelings of isolation for a patient or caregiver are often terrifying and isolating. If you can reach out to someone or a support group-DO!

Our support groups like many others are valuable places to ask questions, share experiences, share useful tips, and a place to interact with others who understand what you are going through.

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Do NOT Overdo it! Taking care of yourself and not overdoing it. Many AE patients only have a certain amount of energy they can allot themselves per day. You cannot do what you used to be able to do and for many of us pacing ourselves or cutting things out of our day is extremely hard to let go of.  

See spoon theory

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Warning Signs

Be aware of warning signs or situations that can cause triggers or flares.

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Ask for Help

Accept that you may need help from family or friends with somethings you can no longer do. 

• Driving- If you can't drive... ask for help from a friend or family member, carpooling, cabs, Uber or        Lyft to get yourself places. 

• Cleaning-if you can afford to do it, hire a a cleaning service or person

• Cooking- ordering in, getting pre-prepared meals or have groceries or food delivered

• Prescriptions- some pharmacies will deliver

• Amazon- or other companies can deliver many household items or services

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Participate in social events (if possible)

Group activities such as book clubs, community education/actities, church groups, etc. A great way to prevent isolation and meet new people.

 

Technology

Using technology such as computers, smart phones, iPads, etc. Some cell phone companies have special, affordable plans for people with disabilities or parents of children with disabilities. Keep all of your receipts for anything you purchase for your disability including your monthly bills and internet service may qualify as tax deductible.

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Keep chargers with you or portable battery for you device.

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• Reminders- Use alerts, set reminder alarms

• Researching online

• Keep a log of symptoms- Logging in symptoms from day to day. It will help you and your      physician understand triggers, reaction to medication and treatments.

• Notes- Great for logging in notes from a doctors appointment, shopping lists or other

• Medications- track them and again, set reminders so you don't forget to take them or take them twice!

• Contacts- do not expect to remember all your contacts- keep them handy especially in an emergency

• Play games- There are many game apps to help improve cognitive skills (memory, hidden pictures, word puzzles, solitaire, majong, etc.)

• Kindle or other "e books"

• Audio books

• Speech to text apps or programs

• Use noise cancelling headphones if you are in a noisy environment, it can help filter out the noise. 

• Oximeter-For those with tachychardia, bradycardia or low oxygen levels, it can attach to your smart device

• Calendar- Use it on your phone for pretty much everything. Reminders, medications, appointments, etc.

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Notes, notes and more notes

Keeping notes to remind yourself of important things. Keep them in places you are sure to see them.

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Preparing for our doctor's appointments (more info here)

• Bring someone with you- If possible bring someone with you who can help take notes or help bring important information with you. When AE patients suffer from memory and cognitive issues they can forget imortant information to give to the doctor or to take home.

• Notes- Take notes of what you are discussing in the doctor's office

• Records- Bring what you have it is good for the physician to see what your history is- and most likely it's a large folder!

• Recording- Ask the doctor's permission if they would not mind you recording the conversation on the phone if you are unable to bring someone. 

• Snacks- Bring snacks and a drink as you are already not feeling well and you do not want to add to the discomfort of being hungary or thirsty.​

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Things to always have on hand

• If you have sensory issues (visual or audio) keep sunglasses, eyeglasses and earplugs on you.​

• Medications

• Hand sanitizer (for those on strong immune suppressants).

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Blogging or keeping a journal

This is a great way to expres yourself and it gives you a recorded timeline of your life events and symptoms. Reading other like minded bloggers can help as well. The Mighty is a great source.

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Neuropsychological rehabilitation

According to Dr. Jeffrey Kreutzer and Dr. Virginia Powell of Virginia Commonwealth University, "Research reveals that brain injury often affects abilities, behavior, and emotions. Commonly reported symptoms include trouble remembering things, thinking of the right word, seeing clearly, concentrating and doing more than one thing at a time (multi-tasking). Academic abilities are often affected as well. People may have difficulty spelling, doing simple math problems, and understanding what they read. Emotional changes may include frustration, depression, and difficulty controlling anger. After a brain injury, you, your doctor, therapists, and family members may want to know exactly how you have been affected." More

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      How Relationships are Affected and What You Can Do

 

Communication: Keep communication open to others.

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• Letting others know you are not your normal self right now.

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• Often loved ones or caregivers are suffering with you as well and may have many mixed feelings of helplessness, frustration, depression or even resentment.

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• How you are feeling and what your symptoms are.

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• What you need help with

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• What your treatments are and how your physician is helping you

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• Share informative websites or finding ways to help loved ones understand

       the disease.

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• Make sure to let them know you appreciated all they do for you.

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• Remembering that your friends and loved ones may not understand HE which can often be an "invisible illness."

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• Remembering that your friends or loved ones may not understand your new normal and the changes in your life and social situations.

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