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Spinal Cord Injury Paralysis Resource Center

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I Hate Fresh Starts

Saralee finds a new use for one of the YMCA’s fitness machines. Photo by Bob Perel.

Saralee finds a new use for one of the YMCA’s fitness machines.
Photo by Bob Perel.

By Saralee Perel

I said to my husband, Bob, "Even before my SCI, I always started new things without sticking with most of them."

We were looking around the gym at our local YMCA on Cape Cod. "This is horrifying," I said, as we passed the torture machines. "We're supposed to pay good money to put ourselves through this agony? That's like paying a dentist to stick a needle in our gums."

"We do."

"See? That's insane," I said. "AND LOOK AT THAT THING!"

"What?"

I pointed to the mirror. "They'll force us to look in that."

He ignored me. Denise, a gorgeous gal in charge, lovingly welcomed us as if we were family. She thought I was kidding when I said, "Where's the hot dog stand?"

We passed by many kinds of exercise equipment I knew I could never use. Denise, an expert, could tell I had already made no-can-do decisions. But she knew more than I did. Clearly I was not the only person with paralysis she had worked with. But she was cool. "You may be able to use a lot of these machines," she said gently.

I thought to myself, "Right. I don't think so."

Saralee on the Johnny G Krankcycle

Saralee on the Johnny G Krankcycle.
Photo by Scott Woodaman

She showed me 2 machines called Johnny G Krank Cycles, which are for people who are in wheelchairs or just have problems with their legs. "We have these because of a grant from the Reeve Foundation."

Actually, most of the equipment was accessible, because there were parts that could be moved aside so that wheelchairs could slide in.

However the most impressive pieces of machinery bowled me over way more than the wheelchair accessible gear. You won't believe what they've got. TVs IMBEDDED right in the machines so you can watch crap on television all day long! I LOVE THAT!

Heck, you don't even need to exercise.

Later at home I got discouraged. "Bob, I'm not joining. I'm tired of taking first steps."

"What exactly is wrong with doing that?"

Now that was one heck of a good question. Getting myself motivated to try something new has been a billion times harder, both physically and emotionally since I was spinal cord injured ten years ago. Because of that, I had been thinking that taking yet another first step would be equivalent to picking up a thousand pound boulder for the two hundred and twenty-seventh time -- hard, heavy and depressing.

The fact is, though, that it's just the opposite. What's depressing is not starting something new. And really, what's the difference how many first steps I've already taken?

"Sweets," I said, filling out the application, "it's the YMCA. I'm neither young, male, nor Christian."

He grabbed the pen. "Then find the OWJA."

"Huh?"

"The Old Women's Jewish Association."

I took the pen and finished the form.

For me, the Y is not just a gym. It's a salvation.

What makes it extraordinary? The people who work there. Each one makes me feel that I mean the world to them, and that every notch I progress on a machine is an Olympic achievement, even when it's as tiny an increment as a wave moving only one inch closer to shore.

Denise, of course, was right that there were many things I could do that I had been convinced would be impossible for me to ever do again.

Fitness trainer Lousie Sebra with Saralee. Photo by Bob Perel.

Fitness trainer Lousie Sebra with Saralee.
Photo by Bob Perel.

While I was exercising, a fitness trainer named Louise, who is too modest to think of herself as the remarkable inspiration that she is, asked, "Has this helped?" She was referring to my spinal cord injury but I pointed to my head and said, "It's helped up here."

I often say, "I can't bring myself to do this." But Louise has taught me that it's what I do in spite of that thought that matters. The harder it is to motivate myself to get dressed and do all the things I have to do to get out of the house and go, the greater the accomplishment it is of getting there.

The people at the Y are not determined to make me exercise; they're determined to help me be happy and loving, to myself and others.

I have faith in the team. I have faith in looking at only one moment without overwhelming myself with the whole picture. I have faith in first steps, even if I've tried the same ones before. But most of all, I've found new faith in myself.

As Martin Luther King, Jr. once said, "Faith is taking the first step even when you don't see the whole staircase."

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 Aquatic Therapy (PDF)

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

A Reeve Foundation Fact Sheet on Nutrition and Weight (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 Fitness and Exercise (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 FES Treadmill Information Sheet (PDF)

A Reeve Foundation Fact Sheet on FES Treadmill Information Sheet (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.

Aquaticnet.comTherapists. Instructors. Managers. To all in the Aquatics industry. This is your single online clearinghouse of aquatic therapy and fitness information. Why re-create the (aquatic therapy) wheel? We are The Aquatic Therapy Command Center.

Craig Hospital: SCI Health and WellnessWith 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.

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.

Cleveland FES CenterFES Resource Guide: First created through the generous support of the PVA organization, the FES Resource Guide lists a variety of international programs that deal with FES research and delivery.

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.

Centers for Disease Control and Prevention (CDC)Features numerous articles and resources on fitness, nutrition and healthy living.

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 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.

Clinical Trials: Ambulation ProgramsList of ambulation programs currently seeking volunteers.

Clinical Trials: Locomotor (treadmill) TrainingList of trials involving locomotor (treadmill) training.

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

Inclusive Fitness CoalitionAddresses the policy, environmental and societal issues associated with the lack of access to physical activity among people with disabilities.

ILRU: RRTC on SCI: Exercise InformationThe ILRU (Independent Living Research Utilization) program is a national center for information, training, research, and technical assistance in independent living. Its goal is to expand the body of knowledge in independent living and to improve utilization of results of research programs and demonstration projects in this field. It is a program of TIRR (The Institute for Rehabilitation and Research), a nationally recognized medical rehabilitation facility for persons with disabilities.

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.

International Functional Electrical Stimulation SocietyOffers a page on functional electrical stimulation.

High Hopes Head Injury ProgramThe High Hopes Head Injury Program was started in 1975, as a result of tough hard work and need of several families. This one-of-a-kind non-profit charitable organization was dedicated to the rehabilitation and retraining of their loved ones who had been devastated by traumatic head injuries.

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.

Lokomat at Sister KennyLokomat® is a robot-assisted treadmill that supports a patient in an upright position while moving the legs through a normal walking pattern – even if a patient is unable to move his or her legs independently.

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.

Lokomat Program at Rehabilitation Institute of ChicagoThe Rehabilitation Institute of Chicago (RIC) provides robot-assisted walking therapy using the Lokomat® to help people improve their ability to walk after disability caused by brain and spinal cord injuries, stroke or neurological and orthopedic conditions.

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 Information Center for Independence (NARIC)NARIC offers a range of services, from quick information and referral to extensive database searches of the latest disability and rehabilitation research. They also offer a number of publications, including directories, guides and statistical reports.

The National Center on Physical Activity and Disability (NCPAD)Resources promoting physical activity for people, and for health, fitness and exercise professionals.

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 (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 President’s Council on Physical Fitness and SportsInformation on making exercise an important part of your life

RT 300 FES BikeRTI designs and markets innovative electrical stimulation ergometers to help people with a neurological impairment achieve their full potential.

Reeve Foundation NeuroRecovery Network (NRN)The Reeve Foundation NRN is a perfect example of basic science being translated to the clinic and changing lives. Funded by the Reeve Foundation through a cooperative agreement with the Centers for Disease Control and Prevention, it is a network of cutting-edge rehabilitation centers whose staffs have been trained in intensive activity-based treatments.

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.

The Spinal Cord Injury Information Network: FESThe Spinal Cord Injury Information Network at the University of Alabama at Birmingham is funded through federal grants to the UAB Rehabilitation Research and Training Center on Secondary Conditions of Spinal Cord Injury and the UAB Model SCI Center. Use the link above, then search for information on skin care or any other topic in paralysis medicine, lifestyle or resource.

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

Sprint AquaticsOver the years Rothhammer International, commonly referred to as Sprint Aquatics, has been designing and patenting products that continue to revolutionize the aquatic industry. As the current owner, Laurel Maas's primary goal for Sprint Rothhammer was and continues to be creating products that meet the needs of those who use the pool as a form of physical therapy, training, and recreation.

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.

The Uppertone SystemIntroduced in 1990 by a C4-C5 quadriplegic, the Uppertone System allows people with C4-C5 paralysis and below to do upper body exercises necessary for rehabilitation and maintenance, without assistance.

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.

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.

The information provided in the Paralysis Resource Center was supported by Cooperative Agreement number 1U59DD000838-01 from the Centers for Disease Control and Prevention (CDC). Its contents are solely the responsibility of the Reeve Foundation and do not necessarily represent the official views of the CDC.