Living With CTE
You are not alone
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.
CTE can pose challenges, but they are challenges that you have the tools to fight. If you are concerned you have CTE, there is much you can do to help maintain a healthy and enjoyable life.
Tips for Daily Living
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 a 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 these activities as needed or seek professional help.
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 National Suicide Prevention 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.
Live well with sleep, exercise and nutrition
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:
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.
Maintaining a well-balanced diet can help you feel better and regulate energy levels. Consider consulting a dietitian.
Learn more about how diet and exercise can help you fight suspected CTE from Dr. Robert Stern:
It is crucial that someone who is concerned they may be living with CTE remains hopeful. Hope and help are available and happening every day. Watch Dr. Robert Stern explain why CTE is not a death sentence, how those who are suffering can have hope that their symptoms can be treated, and why loved ones are so important in instilling that hope.
Want another jolt of inspiration and hope? After he was diagnosed with dementia and probable CTE, former NFL player and sportscaster Mike Adamle and his wife Kim launched The Mike Adamle Project: Rise Above as a CLF program. Rise Above provides patients living with symptoms of CTE, and their families, with tools, resources, a supportive community, and most importantly, with hope. Learn more here.
Seek out treatment and research
Talk to your doctor. Since we cannot yet accurately diagnose CTE in living patients, there are few evidence-based treatment protocols. However, many specialists can treat a patient with suspected CTE by treating the symptoms you find most challenging. Click here to learn more about how to treat possible CTE.
You can help accelerate research on CTE risk factors and pathways to effective treatments by enrolling in research studies. Click here to learn about studies you may be eligible for. Brain Donation and Clinical Research Registry members will be invited to future research studies as they become available.
Reach out for 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.
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