MANAGING LIFE WITH NMOSD
Living with neuromyelitis optica spectrum disorder (NMOSD) comes with ups and downs. However, there are resources and tools that can help you on your NMOSD journey.
Check out the resources below for help with common symptoms and NMOSD-related challenges.
Navigating Life With Changing Vision
Free White Cane Program
This program distributes white canes at no cost to people who are blind or have low vision across the United States. You can choose from a variety of sizes and requests can be made as often as every six months.
How to Manage Visual Issues
This video features a presentation by Deb Nikkila, MOT, OTR/L, about managing changing vision after an NMOSD or optic neuritis diagnosis.
NFB-NEWSLINE®
It’s more than news — this free audio and Braille service offers more than 500 publications, emergency weather alerts, job listings and more for anyone with difficulties reading print.
Southeastern Guide Dogs
For people with vision loss, having a guide dog can help ease the burden of everyday activities. This organization provides service dogs, training, food, veterinary care and more at no cost.
Technology Resources for People With Vision Loss
From general to assistive technology, these resources can help you learn how to enhance your everyday life while living with changing vision.
What Is Visual Impairment
This website provides basic education on vision loss, tips for maintaining independence, how to find low vision rehabilitation services and other important topics.
Help With Mobility Challenges
Adaptive Tools and Technology Video
In this video (and transcript), Sandy Hanebrink, a registered occupational therapist, discusses tools that can support you in your community, at home or while driving.
A Guide to Medical Transportation
This website features articles, infographics and podcast episodes covering everything you need to know about navigating medical transportation.
Spinal Cord Help Desk: Traveling With a Disability
The United Spinal Association provides a comprehensive guide for everything you need to know about traveling with a disability.
Spinal Cord Help Desk: Wheelchairs
Access essential tools and resources, such as My Wheelchair Guide, to assist with wheelchair selection, delivery and maintenance.
Learn More About Infusion Medicines
Infusion Guide
Infusion-administered medicines may slow the progression of NMOSD and reduce the risk of attacks. This guide — offered in five different languages — gives an overview of what you need to know about the infusion process.
NMOSD Emergency Medical Resource Card
Be prepared for the unexpected with a medical resource card to share NMOSD information with any healthcare professionals in an emergency.
Know Your Symptoms
People with NMOSD can experience a wide range of seemingly unconnected symptoms.1 If you are experiencing any new or worsening symptoms, contact your doctor immediately as it may signal a new attack.
REFERENCE
1. Beekman J, Keisler A, Pedraza O, et al. Neuromyelitis optica spectrum disorder: Patient experience and quality of life. Neurol Neuroimmunol Neuroinflamm. 2019;6(4):e580. doi:10.1212/NXI.0000000000000580
Get Help Talking to Your Doctor
Simple steps, such as being vocal and reaching out to your doctor, can help you play a more active role in your health.
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