Living with Chronic Brain-Related Illness
By: Source: AARP.org Date Posted: 2006-04-10 15:41:00-04:00
If you (or a loved one) have been diagnosed with a chronic brain-related illness, you may have questions about what you should do. The following tips can help you better understand your illness, get proper medical care, and learn to monitor your health.
Chronic illness may require that you make adjustments in many parts of your life. You may need to learn how to eat healthy foods and make sure you get adequate sleep. Learning to accept and cope with the fact that you need to make these adjustments is part of the process of managing your illness.
Living with a chronic condition can pose enormous challenges, physically, emotionally, and financially. But your illness doesn't have to control you.
You can find many ways to gain better control of your health and to maintain the best quality of life possible. And wherever you look—in your library or on the Internet—you will find many helpful resources.
Remember, you don't have to do it all at once. Set achievable goals for yourself, and take one step at a time.
Understanding Your Illness
- Ask your doctor for information. Physicians can often provide materials or recommend books, articles, or Web sites to help you learn more.
- Contact relevant organizations, and ask about information, referrals, or support groups.
- Visit your local library or bookstore to research your condition.
- Learn what symptoms to expect, how to manage them, and what might cause them.
- Explore new therapies or clinical trials, and ask your doctor if they might be right for you.
Get the Right Medical Care
- Seek out the right doctor for you, preferably someone who is experienced in dealing with your condition.
- Investigate whether a specialist might best serve your needs, and learn which kind of specialist is best for you. (For example, a neurologist specializing in stroke may be more appropriate for managing stroke than a general neurologist).
- Ensure that all of your physicians — if you ' re seeing more than one — know what medication or other therapies you are using.
- Ask your health care provider about specialized recovery programs, such as stroke rehabilitation or physical therapy
- Prepare for doctor visits by writing down your questions and keeping a health journal. This will help you answer your doctor ' s questions accurately.
- Follow your doctor ' s orders carefully, including how and when you should take medications, and what to do if you miss a dose.
Monitor Your Health
Use a health journal, booklet, or calendar devoted to medical notes and information to:
- Record symptoms, including when they occur, their severity, and what activities might be triggering them.
- Keep track of doctor visits and take notes about important comments or suggestions during a visit.
- List your medications and any other therapies, and make note of any side effects.
Be sure to share relevant information from your journal with your doctor.
Eat Well and Exercise
- Ask your doctor if there is a special diet you should follow or foods that you should avoid.
- Maintain a healthy weight. Ask your physician for advice if you feel your current weight is unhealthy.
- Get treatment for dental problems (like missing or loose teeth, or gum disease) or gastrointestinal conditions (such as heartburn, constipation, and diarrhea). These conditions may negatively affect the way you eat.
- Report any significant changes in appetite or eating habits to your doctor. These changes may be signals that another problem is present.
- Maintain activity levels as much as possible. Talk to your doctor about specific exercises or physical therapy that might help you manage your symptoms.
Take Care of Your Mental Health
- Watch for signs of depression , which affects many people with chronic illnesses.
- Talk with your doctor if you notice persistent significant changes in thinking, memory, and other mental abilities. These can be caused by some illnesses and medications.
- Exercise your mind. Experts believe that regular mental activity — especially if it ' s intellectually challenging — can help keep your brain sharp as you age.
- Stay involved in activities that you enjoy, and try to keep up with social connections. These are key elements of good health.
- Learn to manage stress. Chronic stress can damage nerve cells and increase forgetfulness.
- Ask a professional therapist or counselor to suggest coping skills and to help you deal with emotional and behavioral issues you experience.
Adjust Your Lifestyle
- Pace yourself, and try to stick to a fairly regular schedule.
- Try to modify your activities when you are overtired or overanxious.
- Prioritize activities, and don ' t overextend yourself.
- Ask for help when help is needed.
- Look for support programs in your community.
Get Plenty of Sleep
More than half of people over 65 report sleep problems, which can significantly affect quality of life, cause great distress, and impair memory, concentration, and alertness.
Sleep problems can symptoms of medical or psychiatric disorders—most commonly depression—or may be side effects of medication.
Talk to your doctor if you notice changes in your sleep pattern that persist for more than two weeks. Changes might include difficulty falling asleep, waking up frequently during the night, or waking up too early in the morning.
Join a Support Network
Several small studies of people with breast or skin cancer showed an association between participation in support groups and longer life. Many patient organizations coordinate support networks; try to find one that deals with your condition.
Support networks often meet in group sessions or over the Internet. Some programs can connect you with one or two other people with your condition, who can provide more personalized support and advice.
Attending a support group can help you learn how other people deal with common problems. You can also ask others with your condition about strategies they have found useful for managing symptoms and coping with lifestyle adjustments.
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This content is brought by Staying Sharp, a partnership between NRTA: AARP's Educators Community and the Dana Alliance for Brain Initiatives
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