I Think I Have CTE. What Do I Do?

If you are concerned that you or someone you care about has CTE, don’t lose hope. Many people live happy and productive lives despite having CTE. It is also important to know that many treatable disorders can cause symptoms of CTE, and in fact people who appeared to have CTE while alive have been found not to have CTE upon post-mortem examination of their brain.

CTE can pose challenges, but they are challenges that you have tools to fight. If you are concerned you have CTE, there is much you can do to help maintain a healthy and enjoyable life. We look forward to updating our CTE resources as more is learned about the disease.

The following are recommendations for people who believe they may have CTE.  

Treatment and Research
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Treatment:

Talk to your doctor. Many specialists can treat a patient with possible CTE. Since we cannot yet accurately diagnose CTE in living patients, there are few evidence-based treatment protocols.  However, doctors can treat many of the symptoms you find most challenging.

Your symptoms may also not be from CTE. CTE symptoms like cognitive problems, depression or headaches can be caused by other, treatable causes that mimic CTE. For example, problems with memory can be caused by sleep disorders. Headaches can be caused by damage to the neck. Therefore, consider other diagnoses before focusing on CTE. Be an advocate for yourself and seek out the best professional help you can find to try to alleviate your symptoms.

Seek help in times of crisis:

If you are having thoughts of suicide, call the Suicide Hotline at 1-800-273-8255. Suicide is a permanent solution to a temporary problem. You can get through it, but it’s difficult to get through alone.

Research:

You can help accelerate research on CTE risk factors and pathways to effective treatments by enrolling in research studies. Two research programs we support are the Brain Donation Registry and LEGEND study at the Boston University Alzheimer’s Disease and CTE Center. Brain Donation Registry members will be invited to future research studies as they become available.

Living Well
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Sleep:

Get good sleep. Your body needs a full night of rest every night to function at its best.  Sleep disorders like sleep apnea can cause mental fogginess and headaches, and poor sleep can affect self-regulation and emotion. Be disciplined in your sleep habits, and, if necessary, seek professional help.

Exercise:

Don’t underestimate the benefits of regular exercise. Regular exercise can relieve stress, help with pain, and improve overall well-being. And remember, what is good for your heart is also good for the vascular system in your brain. Be sure to consult a doctor before beginning a program. 

Nutrition:

Maintaining a well-balanced diet can help you feel better and regulate energy levels. Consider consulting a dietitian. 

Tips for Daily Living
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Write Things Down:

If you have concerns about your memory, writing things down can help you be more productive and maintain a sense of control over your life. Whether you keep a notebook, use voice memos or put in calendar reminders on your phone, a system can help.

Develop a Routine:

Creating structured environment, planning tasks to complete and goals to accomplish can help with creating sense of stability. Whether it’s sleep, cooking breakfast, or going for a nature walk, approaching one task can make life more manageable. 

Control Impulsive Behaviors:

Studies show CTE can damage parts of the brain that regulate impulsive behaviors. Be cognizant of unhealthy habits like gambling, overspending money, using alcohol, drugs, or other addictive substances to cope with problems. Avoid activities as needed or seek professional help.

Self-Regulation:

Managing emotion, anxiety, and stress is an important and learned skill. Practice relaxation techniques like deep breathing, meditation, or counting to 10 to help ensure your emotions don’t get the best of you. Seek professional help to find the right techniques for you.

Seek Out Family and Friends:

Reaching out to family and friends and asking for help is NOT a sign of weakness. Having someone to talk to and share your experiences and challenges can help.

Leading to a Safer Future

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info@concussionfoundation.org

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