Information Specialist Helps Kim Get Her Life Back
By Nate Herpich
In October of 2010, Kim Carpenter was shot six times in the chest and abdomen and left for dead. She went into a coma, and doctors gave her little chance to live. When she awoke and it became clear that she'd survive, they told her she'd never walk again.
Today, less than three years later, Kim continues to defy the odds, and is living a full, independent life in a Binghamton, New York suburb. In the last six months she won a scholarship that will help her to go back to school, gave the first (of what she hopes to be many) motivational speeches, and has begun walking up to 500 feet with the help of her physical therapists.
She is, in her own words, on a path toward "returning to an active life again," a journey that began when she accepted that her life would now hold new challenges. Since then, she has continued to move forward by "finding anchors of hope."
Following Kim's incident, the Christopher & Dana Reeve Foundation provided such an anchor. This past spring, lost and looking for guidance, she called the Paralysis Resource Center and spoke with Information Specialist Donna Lowich. It was a conversation that would change her outlook, and her daily life.
"When I spoke with Donna, I immediately realized that there are people ready and willing to support me," says Kim. "What she does is remarkable -- people like me need people like her."
As Information Specialist, Donna's job is to assist callers and those who might reach out via email. She answers their questions, helps them to find resources in their local area, and makes suggestions on how to navigate certain activities in daily life.
"Every call is different," says Bernadette Mauro, a Director at the Reeve Foundation. "But the bottom line is, people with a new spinal cord injury have a real need for information, and we're committed to doing the research for them. And we're also committed to listening carefully, and to treating every caller as we would want our own favorite aunt to be treated."
Donna is able to combine a strong professional background in research (she holds a Masters in Library Science from Rutgers University) with a uniquely empathetic ear -- she has lived with a spinal cord injury for nearly 28 years.
"I'm able to provide my own experience, and let people know that spinal cord injury doesn't mean the end of life, only, that things will be a little different," says Donna. "You can still lead a productive and enjoyable life, even if it isn't what you had planned on." (Check out some of Donna's stories about living with paralysis.)
Donna still remembers when she became paralyzed following an unsuccessful surgical procedure, and how overwhelming the experience was.
"In a flash, your life is turned upside down," she says. "No one ever prepares to become paralyzed, so it can be an extremely difficult transition. I'm here to help navigate that period, and teach people to embark upon a new path toward self-empowerment."
When Kim first called Donna, she had specific questions regarding how to get information for her nephew, who became her caregiver after the incident, and who was at a loss at how to best provide care for his aunt. Donna sent her an informational package, the Paralysis Resource Guide (PRG), which Kim now calls her "Bible."
The Guide provides the contact information of "real people to contact who actually get back to you," explains Kim. "And while doctors and therapists sometimes talk in lingo that is hard to understand, everything in this book is clearly stated."
In short, the Guide has provided Kim with a "world of knowledge;" from information about a designer that provides clothes made specifically for people in wheelchairs, to a therapeutic horseback riding program near where she lives that she soon hopes to sign up for. "This guide should sit on every shelf of every therapist or doctor working with spinal cord injury," she says.
Donna also helped Kim to learn more about what programs were available in the Binghamton area: Proximity is important, and those with spinal cord injury don't always know what's available to them, especially in the days and months following their initial injury. But Reeve's informational specialists are happy to do the work to find out what's what. Thanks in part to Donna's guidance, and in large measure to Kim's unique determination, Kim was recently awarded a grant from a local firm that will provide for the installation of computer equipment into her home so that she can begin her studies.
"I am thankful for the support group that I do have, from family and friends, to Donna and everyone at the Reeve Foundation," says Kim. "Now, I truly live by the mantra, 'if you believe it, you can achieve it.' This is very different from where I was only a year ago."
Donna says that she and Kim share a unique connection, and that she has been continually impressed by her resolve. She also says that she is lucky to do what she does for a living:
"I love my job. If I can do anything to help someone with spinal cord injury such as Kim, it makes my day. That's more than enough thanks for me."
Contact an Information Specialist online or call 800-539-7309 (Mon.-Fri.,9 am to 5 pm ET). International callers should call 973-467-8270.
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Paralysis Resource Guide
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Agency for Health Care Research and QualityOffers information on antidepressants, especially on various side effects.
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 Association of SCI Psychologists and Social WorkersPromote research to improve quality of care and works to improve skills and techniques of members.
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.
Consortium for Spinal Cord Medicine, Clinical Practice GuidelinesThe Guidelines, available at no cost from the Paralyzed Veterans of America, are targeted to professionals. A consumer version is also available: Depression After Spinal Cord Injury, What You Should Know.
Determined 2 HealProvides helpful information for the newly spinal cord injured.
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.
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.
Mobile WomenArticles, resources, online forum for women with disabilities especially wheelchair users.
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 Suicide Prevention LifelineNational Suicide Prevention Lifeline is a 24-hour, toll-free suicide prevention service available to anyone in suicidal crisis. If you need help, dial 1-800-273-TALK (8255).
National Library of MedicineDiscussion of depression and treatment options.
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.
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.
NJ Self-Help Group ClearinghouseEnables people to help themselves with self-help groups.
Paralyzed Veterans of America (PVA): Spinal Cord InjuryFor more detailed information on the clinical practice guidelines on respiratory management with spinal cord injury you can request booklets from the Paralyzed Veterans of America. These booklets also provide guidelines on proper weaning from a ventilator.
The Spinal Cord Injury Information Network: DepressionResources and materials related to depression.
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 Information NetworkThe Spinal Cord Injury Information Center features clinical information about bowel management and all other medical issues of paralysis.
University of Alabama at BirminghamOffers an information sheet (Info Sheet #11) on bladder care and management.
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.
University of Washington/Department of Rehabilitation MedicineOffers a series of pamphlets: Staying Healthy after a Spinal Cord Injury; depression is covered.
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).
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.
Check out programs in your area on our one-of-a kind online searchable Quality of Life program database. You can search by location or topic. GO