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, getting plenty of rest is even more critical.

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Eating Well and Getting Enough Fluids

It is essential.

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Overstimulating Environments

• Avoid them if possible or limit to small groups. If you must attend, be sure to bring earplugs, noise-canceling headphones, and sunglasses, as there may be excessive light or flashing lights.

• Leave uncomfortable social environments, especially when feeling overwhelmed.

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Quiet Time

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

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Speaking To A Therapist

You are going through so much emotion, confusion, and 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 possible from family, friends, and 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 helpful tips, and interact with others who understand what you are going through.

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Please do NOT overdo it! Take care of yourself and avoid overexertion. Many AE patients have a limited amount of energy they can allocate to 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 the spoon theory.

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Warning Signs

Be aware of warning signs or situations that can trigger or flare.

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Ask for Help

Accept that you may need help from family or friends with specific tasks that you can no longer perform. 

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

• Cleaning: You can afford to do it, hire a cleaning service, or a person

• Cooking- ordering in, getting pre-prepared meals, or having 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, church groups, etc. A great way to prevent isolation and meet new people.

 

Technology

Using technology such as computers, smartphones, iPads, etc. Some cell phone companies have special, affordable plans for people with disabilities or parents of children with disabilities. Keep all receipts for any purchases related to your disability, including monthly bills and internet service, which may be tax-deductible.

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Keep chargers with you or a portable battery for your device.

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• Reminders- Use alerts, set reminder alarms

• Researching online

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

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

• Medications - track them and set reminders to ensure 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, as they can help filter out the noise. 

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

• Calendar - Use it on your phone for almost everything. Reminders, medications, appointments, and other essential details.

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Notes, Notes, And More Notes

Keeping notes to remind yourself of important things. Please 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 get important information. When AE patients suffer from memory and cognitive issues, they can forget important details 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's good for the physician to see your history, and most likely, it's a large folder.

• Recording - Ask the doctor's permission if they would not mind you recording the conversation on your 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 hunger or thirst.​

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Things To Always Have On Hand

• If you have sensory issues (visual or auditory), keep sunglasses, eyeglasses, and earplugs with 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 express yourself, and it provides a recorded timeline of your life events and symptoms. Reading others like-minded bloggers can also be helpful. 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, difficulty finding the right word, difficulty seeing, difficulty concentrating, and struggling to do more than one thing at a time (multitasking). 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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