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Spinal Cord Injury Paralysis Resource Center

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Life after SCI

Sue and Emily

Emily (right) and
her mom, Sue.

By: Shana Hurley

Name: Emily Potter
Injury: T11 Asia A complete
Mechanism of injury: Car accident
Date of injury: January 1, 2002

"I tell my patients all the time, don't feel like you have to take it all on yourself."

This is just one piece of advice Emily Potter, an occupational therapist (OT) at the Institute of Rehabilitation and Research Memorial Hermann (TIRR) in Houston, Texas gives her patients.

Potter, who is living with a T11 Asia A spinal cord injury (SCI) since 2002, specifically works with individuals living with SCI.

"We work with anybody who has had any sort of life changing event or diagnosis," Potter says of occupational therapists. "Our goal is to help someone who is having a problem performing a daily task, an occupation, to help them get back to doing that as independently as possible."

Sue Spencer, Emily's mother, notes that Emily's injury allows her to connect with patients on a unique level.

"These patients have told Emily many times that other therapists tell them how life can be," Spencer says, "and how hard this will be, but they see her and know they can do it."

Totally different life
Potter was 19-years-old when she was involved in a car crash. She is now living with paralysis from the waist down.

The accident forced Potter into rehab at TIRR with Spencer accompanying her for support. The next few weeks the family dedicated their time to Potter's inpatient recovery before making the nearly three hour trip home to Round Rock, Texas.

"The amazing part of this was that after her rehab, she changed her major in college to be an occupational therapist," Spencer says of the ordeal. "She fell in love with what they did and the people that were there because they were awesome."

Potter used the experience to focus on her future aspirations, but "it threw us into a totally different life," Spencer says. "It's just something I've got to live with and learn how to live with better." Still, through her struggles, Spencer remains proud of the perseverance Emily has displayed over the years.

"She's self-sufficient," Spencer says, "six months after rehab she got her car adapted and drove. She has a titanium wheel chair. She can tear that thing down and get in the car before I can get out the door and get into the passenger's seat."

Life as an OT
"January of 2012 was the tenth anniversary of my accident," Potter says, "and I think I've just kind of come to terms with my injury and become comfortable with the cards I've been dealt. I'm just making the best of it."

Potter faced multiple roadblocks on her road to recovery, including battling depression, undergoing surgeries for pressure sores, and dealing with the side effects of pain medication. Now, she uses her experience and expertise to help others through the process.

"I tell my patients that I want to be an open book for them," Potter says. "Even if I'm working with someone who doesn't have the exact same injury as I do, we've been through a traumatic situation and we share that. I want them to be able to learn from things that I've learned along the way and if it makes their lives easier, then I've served my purpose."

Typically, Potter sees around five to six patients a day."We work hand in hand with physical therapy, whose goal is to exercise, strengthen, and regain mobility," Potter explains. Potter also leads the Ready Group, which specifically focuses on preparing individuals for living their lives in a wheelchair. "Leading this group gives me a chance to teach the tricks of the trade that I have learned over the past 10 years while living life from a chair," she says. Potter instructs patients on how to complete specific tasks like making the bed, getting dressed, showing them how to grocery shop, drive, and much more.

Perseverance and patience
Properly preparing the patients for the lives they go on to face can be difficult in some instances. "Depending on length of stay with insurance companies these days," Potter says, "we'll have maybe three or four weeks to work with a patient."

That, however, is not always the case. Sometimes patients' funding or insurance runs out, leaving Potter and her colleagues little time to prepare patients for their return to post rehab life.

"We're teaching them how to go out and live their lives after they leave here," Potter explains. "When these length of stays get so much shorter, it's very hard to teach them everything that they need to know to be functional the rest of their lives."

Challenging patients
Potter says that working with her own patients can be challenging at times, as well.

"I can teach them all of the skills, I can tell them that there's life out there," she says. "I can try and show them that there is life after a spinal cord injury, but I can't make them choose to move forward and make this life for themselves. I think the hardest part is when someone cannot find the motivation to do that."

Potter cannot persuade all of her patients to follow a path like hers, but she continues to stay by them and support them. She gives her contact information including her office number and email address to all her patients when they leave therapy.

"If they ever need anything," she says, "or if they need advice, or have questions, they're more than welcome to contact me."

What's next?
Potter is currently working on a project to further provide support and service to SCI patients following discharge from TIRR and other facilities by creating a resource center in the Houston area through the National Spinal Cord Injury Association. It will focus on providing education, resources, and organizing community outings to encourage individuals to get out and carry on with their lives.

Emily on her graduation night with her mom, Sue and stepfather Terry.

Emily on her graduation night
with her mom, Sue
and her stepfather Terry.

"There's a need out there for patients after they leave the hospital," Potter adds, "some sort of local source to check in with and connect to."

Her mother agrees, acknowledging that there is no follow-up for patients once they leave the hospital. "If a patient doesn't have a support system or anyone to go home to, most times, they go to a nursing home," she says.

Spencer hopes that her daughter's story will inspire other individuals and families struggling with a loved one's disability to keep moving forward.

"I want people to know that you're going to be thrown into a world that you have never known and your life will change. Your family's life will change," Spencer says. "But with a good support system and Emily's fortunate enough to have that, you can overcome the injury. You can have a life. You can go to school. You can even work as an OT. Don't give up. There is life after SCI."

From honors graduate to occupational therapist, Potter has proven time and time again she is a survivor.

Potter's last piece of advice for individuals living with a disability is to be confident.

"What I learned worked best," Potter says, "was the more confident I was in myself and my abilities the more comfortable everyone seemed around me."

TIRR and the NeuroRecovery Network
With dedicated therapists like Potter, the Institute of Rehabilitation and Research continues to provide SCI patients with some of the best therapy made available. TIRR is one of the specialized member centers of the Christopher & Dana Reeve Foundation's NeuroRecovery Network (NRN). The NRN is a cooperative network of cutting-edge rehabilitation centers designed to provide and develop therapies to promote functional recovery and improve the health and quality of life of people living with paralysis.

"I've had many patients go through that program," Potter says, "and it's amazing to see how that continuous practice and repetition on the treadmill makes a huge difference in muscular recovery."

Tell us your story 
Telling your story is one way to let anyone touched by paralysis know that they are not alone. We've created a place where you can share your journey for your benefit, and the benefit of others. Your story matters. Share it!

A Reeve Foundation Fact Sheet on Pediatric SCI (PDF)

A Reeve Foundation Fact Sheet on Adjustment to SCI (PDF)

A Reeve Foundation Fact Sheet on Aging with SCI (PDF)

A Reeve Foundation Fact Sheet on Caregivers PCAs Respite (PDF)

A Reeve Foundation Fact Sheet on SCI Autobiogs or Biogs (PDF)

A Reeve Foundation Fact Sheet on SCI Chat Rooms (PDF)

A Reeve Foundation Fact Sheet on SCI Research (PDF)

A Reeve Foundation Fact Sheet on SCI Tutorial 101 (PDF)

A Reeve Foundation Fact Sheet on SCI Videos (PDF)

A Reeve Foundation Fact Sheet on Rehabilitation (PDF)

A Reeve Foundation Fact Sheet on Rehabilitation - Choosing facility (PDF)

A Reeve Foundation Fact Sheet on Brain and Spinal Cord Tumors (PDF)

A Reeve Foundation Fact Sheet on Deep Vein Thrombosis (PDF)

A Reeve Foundation Fact Sheet on Mindfullness (PDF)

A Reeve Foundation Fact Sheet on New Injury Top 10 Questions (PDF)

A Reeve Foundation Fact Sheet on Umbilical Cord Blood Banking (PDF)

Arkansas Spinal Cord CommissionThe mission of the Arkansas Spinal Cord Commission is to administer a statewide program to identify and meet the unique and lifelong needs of people with spinal cord disabilities in the state.

American Academy of Physical Medicine and RehabilitationAs the premier medical society for the specialty of physical medicine and rehabilitation, AAPM&R is the only organization exclusively serving the needs of practicing PM&R physicians. With more than 7,500 members, the Academy represents more than 87 percent of US physiatrists and international colleagues from 37 countries.

American Physical Therapy Association (APTA)Main membership organization for the PT profession, furthering the prevention, diagnosis and treatment of movement dysfunctions.

American Therapeutic Recreation Association (ATRA)ATRA is the largest, national membership organization representing the interests and need of recreational therapists. Recreational therapists are health care providers using recreational therapy interventions for improved functioning of individuals with illness or disabling conditions.

American Speech-Language-Hearing AssociationASHA is the professional association for audiologists, speech-language pathologists, as well as speech, language and hearing scientists.

The American Congress of RehabilitationServes people with disabling conditions by promoting rehabilitation research and the transfer of technology.

Association of Rehabilitation NursesPromotes and accredits rehab nurses and promotes the philosophy of care of the nursing professional.

American Occupational Therapy Association (AOTA)Advances the field of occupational therapy through standard-setting, advocacy, education, and research.

CaringRoad.comCaringRoad.com is dedicated to helping family caregivers obtain information, locate services and find support so they can make informed decisions about the care of their loved ones. An online community of family caregivers.

CareCure CommunityCareCure Community features a SpinalNurse bulletin board with informed comments on matters of the bowel, and all issues of paralysis.

Canadian & American Spinal Research OrganizationPromotes and supports funding research to ultimately find a cure for paralysis. Also publishes journal of latest research they fund. Call (800) 361-4004 or use the link above.

Canadian Paraplegic AssociationAssists people with spinal cord injuries and other disabilities to achieve individuality, self-reliance and full community participation. Call (613) 723-1033 or use the link above.

Craig HospitalWith funding from the US Department of Education's National Institute on Disability & Rehabilitation Research, has developed educational materials to help people with spinal cord injuries live in the community maintain their health. Topics include skin care, exercise, heart disease, weight control, alcohol abuse and conditions related to the aging body. Use the link above and click on SCI Health and Wellness.

Center for Research on Women with Disabilities (CROWD)Dept of Physical Medicine and Rehab Services at Baylor College of Medicine.

Caregiver.comOffers a directory of support groups for caregivers.

The Centre for Ambulatory Rehabilitation Research and Education (CARRE)Based in Alberta, Canada, CARRE is a research translational facility that examines various treatments for walking after spinal cord injury.

The Caregiver InitiativeA project of the Johnson & Johnson Consumer Products Company to help family caregivers provide care to their loved ones and reduce their own stress. Includes information on caregiver needs, and training materials for family caregivers.

Determined 2 HealProvides helpful information for the newly spinal cord injured.

Family Caregiver AllianceCaregiver Media Group is a leading provider of information, support and guidance for family and professional caregivers.

Family Caregiving: It's Not All Up to YouNFCA and the National Alliance for Caregiving launched a public education campaign to give information and support to caregivers.

FacingDisability.comFacing Disability is a web resource with more than 1,000 videos drawn from interviews of people with spinal cord injuries, their families, caregivers and experts. I know that this is a lot to ask, but we'd be so grateful for your help. I'm looking forward to discussing this link with you, and to answering any questions you may have.

Kosair Charities Center for Pediatric NeuroRecovery at the University of LouisvilleThe Kosair Charities Center for Pediatric NeuroRecovery provides activity-based therapies to promote recovery from neurologic injury in children; conducts research to enhance recovery; and trains families, practitioners and scientists to maximize recovery and improve the quality of life for children and their families. In short, we are here to help kids kick paralysis and through science have every reason to hope.

Model Systems CentersA federally funded program of 14 specialty medical and/or rehabilitation centers across the US. The SCI Care System collects and submits acute, rehabilitation and follow-up (annual, long-term post-discharge) data on SCI patients who received care in the these centers following injury.

The Miami Project to Cure ParalysisThe Miami Project to Cure Paralysis has studied functional electrical systems for exercise.

Model Systems Centers for Spinal Cord InjuryA federally funded program of 14 specialty medical and/or rehabilitation centers across the US. The SCI Care System collects and submits acute, rehabilitation and follow-up (annual, long-term post-discharge) data on SCI patients who received care in the these centers following injury.

Mobile WomenArticles, resources, online forum for women with disabilities especially wheelchair users.

National Family Caregiver Association (NFCA)The National Family Caregivers Association educates, supports, empowers and speaks up for the more than 65 million Americans who care for loved ones with a chronic illness or disability or the frailties of old age. NFCA reaches across the boundaries of diagnoses, relationships and life stages to help transform family caregivers' lives by removing barriers to health and well being.

The National Spinal Cord Injury Statistical Center (NSCISC)NSCISC supervises and directs the collection, management and analysis of the world's largest spinal cord injury database. Headquartered at the University of Alabama, Birmingham.

National Rehabilitation Association (NRA)Not long after Congress passed the National Rehabilitation Act of 1920, the National Rehabilitation Association (NRA) began its commitment to persons with disabilities. As the oldest and strongest advocate for the rights of persons with disabilities, NRA's mission is to provide advocacy, awareness and career advancement for professionals in the fields of rehabilitation. Their members include rehab counselors, physical, speech and occupational therapists, job trainers, consultants, independent living instructors and other professionals involved in the advocacy of programs and services for people with disabilities.

National Spinal Cord Injury Association (NSCIA)At NSCIA, we educate and empower survivors of spinal cord injury and disease to achieve and maintain the highest levels of independence, health and personal fulfillment. We fulfill this mission by providing an innovative Peer Support Network and by raising awareness about spinal cord injury and disease through education.

National Alliance for CaregivingThe Alliance was created to conduct research, do policy analysis, develop national programs, increase public awareness of family care giving issues, work to strengthen state and local care giving coalitions, and represent the US care giving community internationally.

New York Online Access to Health (N.O.A.H)Offers information and links related to spinal cord and head injury treatment, rehabilitation, and children. Materials in Spanish.

Neuroscience for KidsOffers an understandable look at the segments of the spinal cord; from University of Washington.

Paralyzed Veterans of America, in support of The Consortium for Spinal Cord Medicine, offers authoritative clinical practice guidelines for bladder management. Consumer guides are available to download.

Red Cross Family Caregiving ResourcesInformation for caregivers.

SpineUniverseAt SpineUniverse our goal is to help patients and their families understand their back or neck problems. In clear, straightforward language we aim to explain what causes spinal problems and how they can be treated. We are committed to ensure that all of the information we present is trustworthy and of the highest quality.

Spinal Cord Injury CaregiversYahoo Internet Forum is a place to share information and to support other caregivers who are caring for people with SCI.

Spinal Cord Injury Information NetworkThe Spinal Cord Injury Information Center features clinical information about bowel management and all other medical issues of paralysis.

United Spinal AssociationOur mission is to improve the quality of life of all Americans living with spinal cord injuries and disorders (SCI/D), including multiple sclerosis, spina bifida, Lou Gehrig’s Disease (ALS), and post polio.

U.S. Department of Veterans Affairs Fact Sheet: VA and Spinal Cord InjuryOf the more than 250,000 Americans with serious spinal cord injuries and disorders, about 42,000 are veterans eligible for medical care and other benefits from the Department of Veterans Affairs (VA).

Well Spouse AssociationA national, not for profit membership organization that gives support to wives, husbands, and partners of the chronically ill and/or disabled. Through information and support groups, the organization address issues common to family caregivers: anger, guilt, fear, isolation, grief, and financial threat.

Paralysis Resource Center The Reeve Foundation Paralysis Resource Center Information Specialists are reachable business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9:00 am to 5:00 pm ET. You may also schedule a call or send a message online.

Reeve Foundation Online Paralysis Community Connecting people living with paralysis, families, friends and caregivers so we can share support, experience, knowledge, and hope.

Quality of Life Grants DatabaseFind resources within the PRC Quality of Life Grants Database. Search by Zip Code, State or an Entire Category.

Library Books and VideosFind resources within the PRC library catalog.

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The Reeve Foundation Paralysis Resource Center Information Specialists are reachable business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9:00 am to 5:00 pm Eastern U.S. Time. International callers use 973-467-8270. You may also schedule a call or send a message online.

This project was supported, in part by grant number 90PR3001, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.