Multiple Sclerosis For Dummies

Set priorities to ensure the best use of your daily energy supply.

Make deposits (naps are great!) in addition to your withdrawals.

Use your energy supply efficiently by doing the following:

Using the right tools/mobility devices

Making your home/work spaces accessible and convenient

Asking for help when you need it

Do the most difficult tasks when you have the most energy.

Pace yourself instead of pushing yourself to the point of exhaustion.

Talk to your doctor about symptoms that disrupt your sleep.

Stay cool — literally and figuratively.

Review your medications with your doctor (some have sleepiness or fatigue as a side effect while others are prescribed to relieve it).

Substitute organization for memory whenever possible:

Use an organizer or PDA to track dates, names, numbers, and tasks.

Create reminder systems for yourself (a beeping watch for medication, a reminder in your computer about important meetings or due dates, a birthday/anniversary list).

Keep important items (glasses, keys, medication) in a consistent place.

Use a family calendar to track everyone's activities.

Keep a file of clear, large-print directions in your car.

Create a master grocery list and check off the items you need before each trip to the store.

Use step-by-step templates for multistep tasks (paying bills, balancing the checkbook, preparing a meal, packing a suitcase).

Use all of your senses for learning — read it, say it, and write it down.

Remember that smaller is better — organized (chunked) information, such as phone numbers and Social Security numbers, is easier to remember than long lists, so organize the stuff you need to remember into bite-size pieces.

If you can't remember something, don't panic because the panicky feeling only makes it harder for your memory to work. Try a little patience and deep breathing to let your memory do its thing.

Talk with your neurologist about treatment with one of the approved disease-modifying therapies to slow disease activity and progression and reduce further nerve damage as much as possible.

Work with your MS team to manage your symptoms, avoid complications, and maintain your quality of life.

Make time for rest, exercise, and healthy, balanced meals.

See your general medical doctor routinely for physical exams and screening tests.

Use the following effective cooling strategies:

Avoid hot showers, hot tubs, and saunas.

Limit your time in the hot sun.

Exercise in a cool environment.

Drink iced fluids.

Check out cooling vests and scarves.

Call a friend — there's no need to go it alone.

Don't wait for a crisis — tap the resources that are out there to help you.

*Stay focused on your goals — you don't need to make a career out of MS.

Call the National MS Society (800-FIGHT-MS or 800-344-4867) for a list of MS specialists in your area.

For each visit to the neurologist, do the following:

Be prepared to describe and prioritize problems and symptoms.

Bring a list of questions.

To catch everything the doc says, bring your partner or a friend or a tape recorder.

Make sure your doctor has an up-to-date list of all the medications (prescription and over-the-counter) and supplements you're taking.

If you don't understand something, ask (the goal is to know more rather than less when you leave the doctor's office).

If you need a long consultation (to discuss family planning decisions, employment decisions, sexual dysfunction, and so on), schedule a separate appointment or phone call.

Don't wait for a crisis — see your MS doctor on a regular basis.

If you feel you need or want a second opinion, don't hesitate to get one.

Neurologist: Diagnoses and treats MS and other neurologic diseases.

Nurse: Provides education and support for all treatment issues.

Rehabilitation specialists: Promote independence, safety, and quality of life. For example, consider the following:

Physiatrist: A physician specializing in rehabilitation medicine.

Physical therapist: Promotes strength, mobility, and balance through exercise and training in the use of mobility aids.

Occupational therapist: Promotes function in activities of daily living via energy management, assistive technology, and environmental modifications (may also treat cognitive symptoms).

Speech/language pathologist: Diagnoses and treats problems with voice quality, speech, and swallowing (may also treat cognitive symptoms).

Vocational rehabilitation counselor: Assists with career planning and retraining.

Mental health professionals: Provide diagnosis, treatment, and support for a wide range of emotional issues, as well as education for stress management, goal-setting, and problem-solving strategies.

Psychiatrist: A physician specializing in the diagnosis and treatment of mental health problems.

Psychotherapist (psychologist, social worker, counselor): Provides counseling, information, and support for individuals and families.

Neuropsychologist: Diagnoses and treats cognitive symptoms.

Additional medical specialists: Provide specialized expertise in medical areas that may be impacted by MS or are of particular interest to folks with MS.

Neuroophthalmologist: A physician specializing in neurologically-related visual symptoms.

Urologist: A physician specializing in urinary problems and male sexual function.

Obstetrician/gynecologist: A physician specializing in women's reproductive care.