Living With Narcolepsy
Narcolepsy is a lifelong condition. Although there
is no cure for this condition, symptoms often improve with ongoing treatment.
Most people with narcolepsy can live near-normal lives. The condition can be
dangerous if sleep attacks or sudden loss of muscle tone occur while driving or
using machinery. Even when these episodes occur at other times, they can cause
injury or impair performance in school and on the job. To help avoid harm, try
to:
- Avoid being alone when you are likely to have a
sleep attack.
- Take a nap before those times during the day when
an attack is likely.
- Safeguard your home and workspace.
- Seek help from family, friends, coworkers, and
your doctor.
- Take your narcolepsy medicine on a schedule that
will help lessen the risk that you will have severe side effects while you are
alone.
Driving
Driving can be dangerous for people with narcolepsy.
You need to take special care to help prevent crashes:
- Take medicines as prescribed.
- Ask your doctor if you can drive safely.
- Plan to drive when you are least likely to have a
sleep attack or other narcolepsy symptom that could be dangerous while
driving.
- Take naps before driving.
- Stop regularly during a long drive and exercise
during the stops.
- Consider driving with family, friends, or
coworkers or getting rides from them.
Work
People with narcolepsy can work in almost all types
of jobs. It may be best if you have a flexible work schedule so you can take
naps when needed. It also helps to have a job where you interact with your
coworkers. Try to avoid jobs that require you to drive or have long commutes to
work.
The
Americans with Disabilities Act (ADA) protects the employment
rights of people who have disabilities, including narcolepsy. The ADA requires
employers to reasonably accommodate the needs of their workers with
disabilities. For workers with narcolepsy, these accommodations may
include:
- Allowing short naps during the workday
- Adjusting work schedules around sleepy
periods
- Alterations to the workspace or job duties
Workers must tell their employer that they have
narcolepsy to get these accommodations.
Employers with more than 50 workers are also covered
by the Family and Medical Leave Act. This law allows preapproved leave without
pay to care for yourself or a family member with narcolepsy. The Social
Security Disability Insurance or Supplemental Security Income programs may also
help you if you cannot work due to your narcolepsy.
Finding Emotional Support
Sudden sleep attacks or loss of muscle tone can be
embarrassing. This can make you avoid getting together with friends,
schoolmates, or fellow workers, and it can cause low self-esteem. People with
narcolepsy may also feel they have no control over their behavior and may
become depressed. To get emotional support for narcolepsy, you can:
- Work with your doctor to better manage your
symptoms and emotional problems if you have any.
- Change your lifestyle to minimize symptoms.
- Learn about narcolepsy, and tell your family and
friends about the condition.
- Seek professional counseling for yourself and
your family.
- Get involved with patient support groups such as
the
Narcolepsy Network.
School-Aged Children
Narcolepsy symptoms can affect learning by limiting
childrens ability to study, focus, and remember. Children with narcolepsy
are sometimes mistakenly thought to have a learning disability or a seizure
disorder (epilepsy). When tired, some children with narcolepsy tend to
speed up their activities, rather than slow down. These children can be
mistakenly labeled as hyperactive.
You might want to tell your childs teachers
and school administrators about the childs narcolepsy. It is also helpful
to tell the school nurse about the condition and the medicines your child takes
for it. Together you can work out a place to keep the medicines and a schedule
for taking them at school. You also might want to check with student services
about special education and other services, if needed, to help your child with
narcolepsy.
Pregnant Women
If you have narcolepsy and are pregnant or
considering getting pregnant, you should talk to your doctor about the effect
your narcolepsy medicine can have on the baby before and after delivery. You
also might want to discuss with your doctor your chances of having a child with
narcolepsy. |