Living with CTE

If you are concerned that you or someone you care about has CTE, you are not alone. There is help. Many symptoms of CTE are treatable, and resources are available to help you find support and live a full life. It is also important to know that people who appeared to have CTE while alive have been found not to have CTE upon post-mortem examination of their brain.

Gary Fencik Mike Adamle
At the 2017 Chicago Honors, former Chicago Bears Super Bowl Champion Gary Fencik (left) presented the Concussion Legacy Foundation's Courage Award to fellow former Bear Mike Adamle for his courage in taking public his diagnosis of dementia and probable CTE.

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. 

If you are struggling to cope and would like some emotional support, call the National Suicide Prevention Lifeline at 1-800-273-8255 to connect with a trained counselor. It’s free, confidential, and available to everyone in the United States. You do not have to be suicidal to call.

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.

To learn about which type of doctor to see for possible CTE, and what to discuss with your doctor, watch this video featuring Dr. Robert Stern, Director of Clinical Research at the Boston University CTE Center:

Seek help in times of crisis:

It is okay to feel anxious or worried if you believe you or a loved one may have CTE. But you don’t have to cope alone. If you are in emotional crisis or concerned about a loved one, call the National Suicide Prevention Lifeline at 1-800-273-8255 to connect with a trained counselor. It’s free, confidential, and available to everyone in the United States. You do not have to be suicidal to call.

If you are concerned that someone you care about may be in crisis, there are simple actions that you can take to help. The 5 #BeThe1To steps are a step-by-step guide to helping someone that may be suicidal. Learn more about these steps here. Find the warning signs of suicide here.

Research:

You can help accelerate research on CTE risk factors and pathways to effective treatments by enrolling in research studies. Research programs we support include the Brain Donation Registry and LEGEND study at the Boston University Alzheimer’s Disease and CTE Center, as well as the DIAGNOSE CTE Research Project. 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.

Watch Dr. Robert Stern, director of clinical research at the Boston University CTE Center, explain how getting adequate sleep can help the brain fight off the effects of CTE and other brain disorders:

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.

Build a Support System:

Reaching out to people you trust can help get you through moments of stress. Friends, family, colleagues, a church community, a hobby or sport club, or a crisis hotline like the Lifeline can all serve as sources of support. If you are concerned about your safety in a moment of crisis, you can make a safety plan to guide you through those especially difficult moments. Learn how to make a safety plan here.

Leading to a Safer Future

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Concussion Legacy Foundation
361 Newbury Street, 5th Floor
Boston, MA 02115

(T) 857.244.0810
info@concussionfoundation.org

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