Living with CTE | Concussion Legacy Foundation

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Living with Suspected CTE

Many CTE symptoms are treatable, and help is available.

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You are not alone

If you’re concerned that you or someone you care about has suspected CTE, please know that you are not alone. Help is available, and hope is right here.

Many symptoms of CTE are treatable, and we have a library of resources to help you find support and live a full life. It’s also important to remember that we can’t definitively diagnose CTE in the living, so your symptoms may have another cause that can be treated.

In addition, people have varied experiences living with suspected CTE. While some struggle, others, with the proper interventions, live long, fulfilling lives. That’s why our message is to focus on treating your symptoms and maintaining hope.

Of course, CTE can pose challenges, but there are many tools to help you fight. If you’re concerned you’re living with suspected CTE, there’s much you can do to maintain a healthy and enjoyable life.

Promote sleep, exercise, and nutrition when living with suspected CTE

Sleep

Prioritize good, consistent 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 emotional management. Be disciplined in your sleep habits, and, if necessary, seek professional help.

Watch Dr. Robert Stern, former director of clinical research at the Boston University CTE Center, as he explains 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.

Learn more about how diet and exercise can help you fight suspected CTE from Dr. Robert Stern.

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, jot down notes in a calendar, or set reminders on your phone, a system can help.

Develop a Routine

Creating a structured environment can help create or maintain a sense of stability. Whether it’s getting consistent sleep, cooking breakfast, or going for a nature walk, approaching one task at a time can make daily life more manageable. Planning tasks and setting goals will keep your perspective focused on the positives.

Control Impulsive Behaviors

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

Self-Regulation

Managing emotion, anxiety, and stress is an important and learned skill but can be challenging when living with suspected CTE. 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 sports club, or a crisis hotline like the National Suicide & Crisis Lifeline can all serve as sources of support.

Keep your mind active

Taking part in activities that stimulate the mind, such as puzzles, reading, learning new skills, or engaging in any form of creativity can improve neural pathways and potentially slow the progression of symptoms.

HOW TO MAKE A SAFETY PLAN

Always maintain hope

It’s crucial for someone who is concerned they may be living with suspected CTE to remain hopeful. Help and hope are available, and building a full, healthy life happens every day. Those who are suffering should have hope that their symptoms can be treated and support from their loved ones to constantly remind them of this hope.

Watch Dr. Robert Stern explain why suspected CTE is not a death sentence.

Hope from former NFL player and sportscaster Mike Adamle

For another jolt of inspiration and hope, you can turn to former NFL player and sportscaster Mike Adamle. After he was diagnosed with dementia and probable CTE, Adamle and his wife Kim launched The Mike Adamle Project: Rise Above as a CLF program.

Rise Above provides patients living with suspected CTE and their families with tools, resources, and a supportive community to help them navigate this experience. Most importantly, Rise Above advances hope.

LEARN MORE

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Seek out treatment and research

Treatment

Since we can’t yet accurately diagnose CTE in living patients, there are few evidence-based treatment protocols. However, many providers and specialists can treat a patient with suspected CTE by addressing the symptoms you find most challenging.

LEARN MORE ABOUT TREATMENT OPTIONS

Research

You can help accelerate research on CTE risk factors and the pathways to effective treatments by enrolling in research studies. Brain Donation and Clinical Research Registry members will be invited to future research studies as they become available.

SEE RESEARCH REGISTRY

Reach out for help in times of crisis

It’s OK to feel anxious or worried if you believe you or a loved one may be living with CTE. But you don’t have to navigate this experience alone. If you’re in emotional crisis or concerned about a loved one, call the National Suicide & Crisis Lifeline at 988 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’re concerned that someone you care about may be in crisis, there are simple actions you can take to help. The 5 “#BeThe1To” steps offer a step-by-step guide for helping someone who may be suicidal, and the Suicide & Crisis Lifeline can help you identify the signs of suicidal ideation.

#BeThe1To IDENTIFY THE WARNING SIGNS OF SUICIDE

CONTACT the CLF HelpLine

Support for suspected
CTE patients

We understand how overwhelming it can feel to face suspected CTE.

Whether you’re just starting to explore concerns about CTE or CTE concerns have been on your radar for years, our free CTE Guidebook for Patients & Caregivers can help you find a path forward.

With practical steps and crucial information on topics such as fundamental knowledge of CTE, finding support, choosing evidence-based treatments, this guidebook can help you develop action plans and make informed decisions about your approach to suspected CTE.

Complete the form to receive your copy of the CTE Guidebook for Patients & Caregivers today.

Download the CTE Guidebook for Patients & Caregivers