National Associations—Signs, Symptoms, and Support

Hospitals and Rehab

Home Adaptation and Tools

Stroke Networks—Information, Education, and Community

Traumatic Brian Injury—Information and Education

Kentucky Traumatic Brian Injury (TBI) Trust Fund—Funding Resource for TBI Survivors in Kentucky

Guardianship

Reading List

  • Marsh, Kelly & Brad. Love Stroke: Stroke Recovery and One Young Couple’s Journey. Indiana: iUniverse, 2016.
  • Bolte Taylor, Jill. My Stroke of Insight. New York: Viking, 2008.
  • Fisher, Andrew. Surviving a Stroke. Louisville: Butler Books, 2011.
  • Hutton, Cleo. After a Stroke: 300 Tips for Making Life Easier. New York: Demos Health, 2005.
  • McEwen, Mark. Change in the Weather: Life after Stroke. New York: Gotham, 2008.
  • Brett, Doris. The Twelfth Raven: A Memoir of Stroke, Love, and Recovery. Western Australia: UWA, 2014.
  • Twomey, Maureen. Before, Afdre, and After. California: published by author, 2015.
  • Levine, Peter. Stronger after Stroke: Your Roadmap to Recovery. New York: Demos Health, 2012.
  • Waters, Marlys J. Stroke Victims Have Rights: All about Strokes and Recovery. California: CreateSpace, 2016.
  • Guns, Bob. Rewire Your Brain, Rewire Your Life: A Handbook for Stroke Survivors and Their Caregivers. Livermore, CA: Wingspan Press, 2008.

Medical File Checklist

How people organize the information varies. Some people use paper binders and folders, and others use spreadsheets or electronic programs, such as Microsoft Health Vault, CareSync, HealthIT.gov, WebMD, or one of many others. The information in the file will change as treatment progresses, but the elements below were the most helpful elements in our health file.

Insurance and Billing

    • Consider keeping a copy of your insurance card in the front of the file, where you can easily access it. That way, you’ll have the name, ID number, and contact number readily available. If the print on the card is small, you might want to enlarge the copy of the card or just write the information on the folder so that you can easily read it when you need to without having to find the card and squint at the print through tired eyes.
    • Make sure you have the names, titles, direct-line phone numbers, and e-mail addresses for insurance company contacts. Keep a separate log for phone calls, and include the date, the time of the call, whom you spoke with, and the outcome of the call or the answer to your question.
    • Make sure you have the name, title, direct-line phone number, and e-mail address for anyone in hospital billing. You should also log billing-related phone calls with the date, time, person you spoke with, and outcome of the call or answer to your question.
    • Keep copies of any explanations of benefits and bills if you’re given paper copies.
    • Write down any procedures you might need to monitor. For example, we had to have a certain procedure in place for the insurance company to cover therapy at home, and we had to call to ensure progress reports were filed so that the sessions were covered. Know what your procedures are, and create a checklist to make following up easier.

Hospital Staff

    • Make sure you have the names, titles, direct-line phone numbers, and e-mail addresses for social workers.
    • Document the names of all the doctors and their specialties, as well as next steps they tell you are in the plan for observation and treatment. Ask if they are affiliated with a private group in addition to the hospital. Most are, and that is how scheduling happens and how you can get messages to them in addition to the nursing staff. Get as much contact information as you can for the doctor.
    • Make sure you have your therapists’ names, titles, phone numbers, e-mail addresses, and affiliations.
    • Record the names of nurses and nurse’s aides and their shifts so that you can share them with other family members. You might also be able to get the phone numbers or e-mail addresses for the nurses.

Patient Information and Schedule

    • List any dietary restrictions or allergies. Keep this on a separate page with your contact information at the top, and make copies so that you can give one out in writing to anyone and everyone who seems to need it.
    • Keep a list of medicines and what each is supposed to do. You might have to update this list frequently. Keep it on a separate page so that you can give it to anyone who needs to have it.
    • Keep track of testing and treatment that’s happening (MRIs, CT, blood work, angiograms, craniotomies, cranioplasties, PEG tubes, AVM, ventilators, etc.). Keep copies of the results if you can, in case you need to change doctors and give the information to another doctor quickly.
    • Keep track of any changes to the treatment plan.
    • Note visiting hours and the daily schedules for medicine, personal needs, and doctors’ check-in times—you don’t want to show up and miss the doctor, who might be in surgery and unavailable.