Rise Above and Thrive With Narcolepsy
Flex Your ‘No’ Muscle
“Learn to say no and set boundaries. There are endless things to do. Prioritize what’s most important to you, what gives you energy and fulfillment. Build a strong ‘no’ muscle. You don’t need to explain your reasoning to everyone. It’s OK to say, ‘Thanks for inviting me, but I can’t make it this time.’ ”
-- Julie Flygare, founder, Project Sleep, Los Angeles
You’re Scared -- But You Can Do This
“It can be scary to be diagnosed with narcolepsy. You may worry about what it means for your life. Remember: Narcolepsy can be treated with medications and lifestyle modifications. Working closely with your physician, you can live a largely normal life: go to school, have a job, and raise a family.”
-- Mark Wu, MD, PhD, Johns Hopkins University, Baltimore
Tap Your Inner Strength
“Right now, you feel confused, frustrated, annoyed, angry. It may be nearly impossible to accept this diagnosis at first, but once you begin to, this new perspective shows you the strength that you would have never discovered about yourself without it.”
-- Mackenzie Zorn, Narcolepsy Network ambassador, San Diego, CA
Check Out Support Groups
“I strongly encourage people with narcolepsy to check out support groups. They’re amazing. Support groups send a message that you’re not alone. I love that phrase. Go online and meet other people who are living with narcolepsy who can share how they cope with their condition.”
-- Raj Dasgupta, MD, USC Keck School of Medicine, Los Angeles
It’s a Lifelong Journey
“When a child has narcolepsy, there will be monumental challenges and changes to your family’s life, your life, but more important, your child’s life. With the proper medical care and daily family support, life can be filled with new opportunities that offer healing and hope. This is a lifelong journey that must not be traveled alone.”
-- Cynthia Zorn, Narcolepsy Network, San Diego, CA
Build a Healthy Routine
“Maintaining a regular sleep-wake schedule, taking scheduled short naps throughout the day, avoiding substances like nicotine and alcohol, and maintaining a regular exercise regimen can all help you manage your narcolepsy symptoms.”
-- Mithri Junna, MD, Mayo Clinic, Rochester, MN
Accept and Embrace Your Diagnosis
“Acceptance takes time. In fact, it takes a lot longer than many of us realize. Don’t rush this process one bit, as the sooner you come to embrace it, the sooner you’ll be a better and happier you.”
-- Ryan Kim, Narcolepsy Network ambassador, Fullerton, CA
Try Strategic Napping
“Living with narcolepsy is like assembling a jigsaw puzzle. Often, early afternoon is a time of marked sleepiness. Strategic napping can be very helpful in dealing with this usual slump time. Work with your employer so you can arrange a 20-minute nap when you typically need a break.”
-- Pell Ann Wardrop, MD, Lexington, KY
Sources Medically Reviewed on 09/21/2020 Reviewed by Neha Pathak, MD on September 21, 2020
IMAGES PROVIDED BY:
1) Julie Flygare
2) Mark Wu, MD
3) Mackenzie Zorn
4) Raj Dasgupta, MD
5) Cynthia Zorn
6) Mithri Junna, MD
7) Ryan Kim
8) Pell Ann Wardrop, MD
SOURCES:
Julie Flygare, Los Angeles.
Mark Wu, MD, PhD, Johns Hopkins University, Baltimore.
Mackenzie Zorn, San Diego, CA.
Raj Dasgupta, MD, USC Keck School of Medicine, Los Angeles.
Cynthia Zorn, San Diego, CA.
Mithri Junna, MD, Mayo Clinic, Rochester, MN.
Ryan Kim, Fullerton, CA.
Pell Ann Wardrop, MD, CHI Saint Joseph Health, Lexington, KY.
Reviewed by Neha Pathak, MD on September 21, 2020
This tool does not provide medical advice. See additional information.
THIS TOOL DOES NOT PROVIDE MEDICAL ADVICE. It is intended for general informational purposes only and does not address individual circumstances. It is not a substitute for professional medical advice, diagnosis or treatment and should not be relied on to make decisions about your health. Never ignore professional medical advice in seeking treatment because of something you have read on the WebMD Site. If you think you may have a medical emergency, immediately call your doctor or dial 911.
