Living with paralysis? Free resources answer questions, provide support


Posted: August 17, 2021 | Word Count: 609

Paralysis is life altering for the person impacted, their families or friends, and their caregivers. Whether you are newly paralyzed or have been living with paralysis for many years, it's normal to have questions. Fortunately, there are free, high-quality resources that provide answers and information to help no matter the concern.

What causes paralysis?

Paralysis can occur for many different reasons. Some people are impacted by paralysis from birth and others have a medical condition or disease that causes it later in life. Accidents that cause spinal cord injuries can also result in paralysis. The most common cause of spinal cord dysfunction is trauma, including motor vehicle accidents, falls, shallow diving, acts of violence and sports injuries.

Resources for paralysis support

An estimated one in 50 people are living with paralysis, or approximately 5.4 million people in the United States. People living with paralysis, their family members and caregivers may have many questions. From applying for benefits and funding medical equipment to managing secondary conditions and mental health, these resources can help with these concerns and many more.

Information Specialists

The Christopher & Dana Reeve Foundation National Paralysis Resource Center (PRC) assists people as they navigate through the various stages of their recovery after the diagnosis of paralysis. Information Specialists are trained staff who help anyone — from newly paralyzed individuals and their family members to persons who have lived with paralysis and mobility impairments long-term. They provide free individualized support, information and referrals. English- and Spanish-speaking Information Specialists are available and certified. Other languages are accommodated through an interpretation and translation service. Send a paralysis-related question or schedule a call online at www.christopherreeve.org/Ask or call 800-539-7309.

Through a cooperative agreement with the Administration for Community Living, the PRC promotes the health, well-being and independence of people living with paralysis, providing free comprehensive information, resources and referral services assisting close to 110,000 individuals and families since its launch in 2002. There is no other program or agency that provides the same level of expertise and support for individuals living with spinal cord injury, MS, ALS, cerebral palsy, stroke and other forms of paralysis.

All of the Paralysis Resource Center’s educational materials are available at no cost, including a 410-page book “The Paralysis Resource Guide” as well as over 300 fact sheets, wallet cards and patient education booklets.

Support groups

Having support is important when navigating major life changes like paralysis. Support groups provide a safe, understanding environment where you can ask questions without hesitation. Support groups can help people who have paralysis as well as their families and caregivers. Ask your health care team or connect with a rehabilitation center to find support groups in your area as well as virtual support groups that eliminate barriers due to location and transportation.

The PRC offers free virtual support groups, which are led by professional facilitators and peer mentors living with paralysis or family members/caregivers of individuals living with paralysis. These groups answer questions and combat feelings of isolation, fostering greater connection among peers who understand the day-to-day challenges of living with paralysis. Groups are held for individuals living with quadriplegia, those living with paraplegia and family members/caregivers so that meetings can focus on the unique needs of each.

Peer mentors

Support groups provide a multi-person setting, but if you prefer an ongoing one-on-one relationship where you can connect and ask questions, consider participating in the PRC’s mentoring program. The PRC offers free mentoring to anyone seeking help. Peer mentors provide answers and support, share what they have learned and help you be your best. Caregivers of people living with paralysis also provide mentoring to fellow caregivers.

This article is available to download for free use in print and online publications. If you must edit the article, please include at least one brand reference. All articles must retain the (BPT) or Brandpoint byline.
Download this Article