SCI First 90 Days

CHOOSING A REHABJune, 2014. Wanstreet has a masters ty-based research program set upin kinesiology; Salic has a sports med- by the Reeve Foundation. “They wereicine degree. The Strides method the only place that gave us hope,”works on functional movement, says Kouri.strength, cardio training, load bear-ing, stretching, etc., along with emo- He stayed in Kentucky for a year.tional, psychological, and nutritional “After about four months of five-coaching. The shop features a body- days-a-week of locomotor [tread-weight supported treadmill, and has mill] training, I was able to wiggle myplans to add an FES ergometer bike big toe,” Kouri said. “But the moreand a Lokomat – that’s a robotic meaningful results were better mus-system to support ambulation on a cle tone, cardiovascular health andtreadmill. Strides has an affiliation improved blood pressure.”with NeuroRecovery Technologies,a company that makes spinal cord Kouri found no locomotor trainingstimulation devices. The company sites back home in California – thissays it hopes Strides clients will be was especially frustrating since theable to participate in testing the stim locomotor program in Louisville wasdevices. See stridessci.com invented at UCLA. “I wanted to live here and I wanted to get better. SoNextStep Fitness, Lawndale my wife and I decided to build ourJanne Kouri, then 31 , was playing vol- own center.” In 2008, Kouri openedleyball in Manhattan Beach, in 2006. NextStep Fitness, based in Lawndale,He got hot so he dove into the surf; he operating as a non-profit. It’s basedhit a sandbar. Kouri was paralyzed at on a fitness club model, not on med-C5/6. He got some rehab but it wasn’t ical rehab. A member fitness center inenough. He wanted to at least hear the NRN now. See nextstepfitness.orgthe word recovery. “I wanted to goto a proactive, progressive place, not VIP NeuroRehabilitation Center,one where you just learn how to live San Diego VIP was founded in Sanyour life in a wheelchair.” Kouri saw Diego by Bradley Marcus, an osteo-nothing in California, but discovered path specializing in physical medicineFrazier Rehab Institute in Louisville, and rehabilitation. VIP, the nonprofitKY, the lead center in the NeuroRe- evolution of the lab, is managed bycovery Network (NRN), an activi- David Charbonnet. He is a former Navy SEAL, spinal cord injured, L1, in a parachute accident in 2011.www.SCI.first 90 days.com 89

CHOOSING A REHABD­ avid wasn’t getting the intensity 3294 E Spring St, Long Beach, CAof rehab he wanted from the VA. He 90806, precisionrehabilitation.comchecked out Project Walk but thencame across Dr. Marcus, who hap- Movement Performance Institute,pened to have a Lokomat machine, a also known as [re+active] Physicalquarter-million dollar robotic device Therapy and Wellness, specializes inthat facilitates patterned walking sus- neurologic disorders, including brainpended over a treadmill – locomo- and spinal cord injury, and offerstor training but without the need for personalized one-on-one treatmentthree or four therapists. VIP also fea- guided by evidence-based physicaltures FES bikes (ergometry), Giger therapy practice. Also offers seatingtables (moves all four extremities at and positioning wheelchair evalua-once) and even a climbing wall. See tions, Pilates, yoga, dance and box-vipneurorehab.com ing. 8830 S. Sepulveda Blvd., Los Angeles, CA 90045, reactivept.comOTHER SOUTHERN CALIFORNIAFITNESS PROGRAMS The Mobility Center is a low-cost therapeutic exercise facility on theEvery Body Fitness is a subscription campus of Cal State LA. Exerciseonline fitness program, including programs are tailored to the client.strengthening and cardio classes, Included is a locomotor training pro-and adaptive yoga, tailored to peo- gram. calstatela.eduple with all levels of ability, includingcaregivers, starting at $25 a month. Center of Achievement at Cal Stateebfitnessonline.com Northridge provides advanced long- term adapted exercise programsPrecision Rehabilitation aims to max- focused on quality of life and func-imize function using a comprehen- tional independence for people withsive therapy program that stresses physical impairments. Very robustmobility, balance and gait. The facility aquatic program with four pools,offers a seating and mobility clinic, including one with movable floor.body-weight supported treadmill Doctor release required; fees vary.training, FES bike program, ReWalk 18111 Nordhoff Street, Northridge, CAexoskeleton training, occupational 91330; 818-677-1200, csun.edu/cen-therapy, massage. There’s a full-fea-tured gym for use by former clients. •ter-of-achievementwww.SCI.first 90 days.com 90

SCI: 90FIRST DAYSSPINAL CORD INJURY IN CHILDREN •PEDIATRIC BASICS www.SCI.first 90 days.com 91

SPINAL CORDINJURYINCHILDRENSPINAL CORD INJURYIN CHILDRENS pinal cord injury in children injury among children can be far is challenging across the more dramatic and devastating. Ser- spectrum from trauma scene vices to treat pediatric SCI require to acute care, to rehab and a family centered approach, with a beyond. In this brief over- large dose of education and care di-view of pediatric SCI, it’s important rected toward parents. Getting kidsto remember that children are not out of the hospital and back into thethe same as little adults. Their care community is really up to mom andrequires a unique, specialized ap- dad; therefore, pediatric rehab inproach. This subspecialty in spinal large part is about training parentscord injury is complex medically, to take care of their child’s needs.psychologically, in rehabilitation, inprescribing assistive equipment, in With good medical care and ap-terms of long-term follow-up, in the propriate rehab, kids survive and liveschools and community settings, and long and healthy lives very close toof course, in the family. the nondisabled norm. Traumatic injuries almost always Note to moms and dads: don’taffect entire families, but spinal cord overprotect. Kids are resilient. They grow up and can live active andwww.SCI.first 90 days.com 92

SPINALCORD INJURY IN CHILDRENi­ndependent lives, if you let them of the cord, causing paralysis. That’s Fortunately, spinal cord injury is called SCI without radiological ab- normalities (SCIWORA); this almostrare in children; the incidence is usu- never occurs in adults, whose spinalally stated as about 5 percent of all bones are more prone to break.traumatic SCI. In Southern Califor-nia, that would predict in the neigh- Males are more commonly af-borhood of 50 new pediatric SCI fected than females during the teencases a year. These kids face many years; at younger ages, the numberof the same issues as adults with of females with SCI is equal to thatSCI, including loss of function, pain, of males. Two in three children in-Note to moms and dads: Don’t overprotect. Kids areresilient. They grow up and can live active andi­ndependent lives ­— if you let them.breathing issues, bowel and blad- jured prior to age 12 are paraplegic,der management, pressure wounds, and about two-thirds have completespasticity, osteoporosis, and auto- lesions, a figure much higher than innomic dysreflexia. the adult-onset population. Because of continued growth About half of kids with SCI wereand development of a young body, involved in motor vehicle accidents.pediatric SCI can also lead to other Forty percent of cases are related tocomplications that require unique medical/surgical events, including in-expertise. Issues that have to be care- juries at birth. Sports injuries, violencefully monitored include scoliosis and and falls make up the rest.hip dislocation. There is a very highrate of developing scoliosis if a child It’s important to stress that be-is injured before puberty. cause of their young age at injury and long anticipated lifespan, kids with Diagnosis of SCI in kids can be SCI are likely at risk for a variety oftricky: assessment has to consider aging-related complications, includ-that the flexibility of the backbone ing overuse of arms, hands and shoul-may resist breakage, yet there can ders, cardiovascular disease relatedstill be damage to the nerve tissue to inactivity, and metabolic issues,www.SCI.first 90 days.com 93

SPINAL CORD INJURYINCHILDRENdecreased bone density and thus in- call learned helplessness. That meanscreased risk of fracture, and muscle the child may become passive, neveratrophy. Regular follow-up visits are feeling in control, retreating from so-important, every 6 to 12 months, by cial interaction, avoiding decisions oran interdisciplinary SCI team. problem solving. Injured kids grapple with “why Pediatric therapists fit kids asme” issues, and with feelings of iso- soon as possible with wheelchairs orlation, loss of control, and sadness. in some cases, braces, to keep themThey benefit from psychological involved in daily life, interacting withcounseling; so do parents, who may friends and family, and especiallybe dealing with anger and guilt. But with other kids their own age. Chil-studies show that kids with SCI are dren r­ equire special attention when itStudies show that kids with SCI are no more or less­depressed or anxious than kids in general. The kids whoadjust the best have strong family and social supports.no more or less depressed or anxious comes to customizing mobility gear.than kids in general. The kids who ad- Seating and positioning experts mustjust the best have strong family and accommodate the growing body;social supports. It’s been reported changes in bone and muscle canthat kids learn to deal with SCI better greatly affect overall function, muchthan those who are injured as adults. more so in kids than in adults. Experts in pediatric disability The rehab field is evolving beyondstress how essential it is to get kids just supplying devices to compensatemoving. Mobility, even for very young for lost function. Research is emerg-kids with SCI, is important for the ing that intensive activity-basedgrowth of the brain, for cognition therapies, such as weight-supportedand learning, and for socialization. A treadmill training, can improve mo-delay in mobility and motor develop- bility. For more about an innovativement can delay overall development. research group conducting pediat-If a child lacks independent mobility, ric clinical trials (in Kentucky), seehe or she may acquire what clinicians v­ ictoryoverparalysis.org.www.SCI.first 90 days.com 94

SPINALCORD INJURY IN CHILDRENA PEDIATRIC DOCTOR ON by way of peer-to-peer networksCHOOSING A REHAB CENTER (see pp. 9 - 10).FOR A CHILD WITH SPINALCORD INJURY What makes a great rehab center is the SCI team: physical,By Lawrence Vogel, M.D. occupational and speech ther- apists, the social workers, psy-It’s hard to imagine a worse chologists, child-life specialist,s­ cenario than having to face a recreational therapists, dietitians,myriad of decisions after your nurses, and the doctors. Doctorschild has sustained a spinal cord are important, of course, but theinjury. Once the child has been truth of the matter is what makescared for in a trauma center, or breaks the experience is thehopefully in a pediatric facility, team, their experience, passionthe next choice a parent needs and commitment.  to make is where their loved oneshould be transferred for intensive The rehab should embrace therehabilitation. So what factors child with the SCI and his or herneed to be considered? parents as a critical component of the treatment team. Location: close to home is soimportant for the needed support Equipment is also an importantof family and friends. Familiarity is part of a pediatric rehab programa key factor. and should include a therapeu- tic pool, locomotor training, and The rehab facility must be pe- functional electric stimulationdiatric-focused and just as impor- equipment for both the lower andtantly, have extensive experience upper extremities.with pediatric spinal cord injuries.Unless your child is a very mature Lawrence Vogel is chief ofyoung adult, all kids 18 years and ­pediatrics at Shriners Hospitalsyounger should be cared for in a for Children, Chicago; he is alsopediatric-focused rehab center. medical director of the spinal cord injury program. The best judges of a pediatricSCI rehab center are former pa-tients and their parents. You maybe able to tap into this expertisewww.SCI.first 90 days.com 95

SPINAL CORD INJURYINCHILDRENPEDIATRIC TRAUMA CARE CHOOSING A REHAB FOR PEDIATRIC SCIEmergency responders are trainedto transport seriously injured children A general rehab setting may not beup to age 16, sometimes 18, to a Level appropriate for a child with spinalI or II trauma center that specializes cord injury. Parents should seek ain multidisciplinary pediatric care. ­facility that offers comprehensiveTreating a child requiring ventilator care in a kid-friendly environment,support, for example, must occur in a staffed by professionals skilled intop-notch trauma setting; the child’s working with children. Refer to thelife depends on the skills and exper- narrative on choosing a rehab fortise on hand. adults starting on on p. 49. Level I pediatric trauma centers Here are the acute inpatient re-in Southern California include Chil- habs most suited for treating kidsdren’s Hospital LA; Ronald Reagan with SCI in Southern California:UCLA Medical Center; Loma LindaUniversity Medical Center; and Rady Shriners Hospitals for ChildrenChildren’s Hospital, San Diego. (Northern CA) is an 80-bed pediatric (to age 18) medical rehabilitation cen- Level II pediatric trauma centers ter for children with complex medicalinclude Northridge Medical Center; needs, with a unique specialization inCedars Sinai Medical Center, Los An- spinal cord injury. All kids are treatedgeles; LA County-USC Medical Cen- regardless of ability to pay. Locatedter; Harbor-UCLA Medical Center, in Sacramento, and affiliated with theTorrance; Long Beach Memorial; and UC Davis School of Medicine, Shri-Riverside County Medical Center. ners offers full continuum of care for pediatric SCI, including acute care, primary rehabilitation and special reconstructive surgical services. Pa- tients come there from all over the Western U.S., Canada and Mexico. While Shriners may not be ideal for SoCal families for acute rehab, due to distances and logistics, the hospi- tal should be considered, especially for ­outpatient services, and for sit-www.SCI.first 90 days.com 96

SPINALCORD INJURY IN CHILDRENuations involving longer term care. Minimum age of SCI patients is 14.See s­ hrinershospitalsforchildren.org See p. 72. c­ aliforniarehabinstitute.comValley Children’s Hospital: Families Miller Children’s & Women’s ­Hospitalin Santa Barbara, San Luis Obispo is a large facility that’s part of the Longand Kern Counties are within the Beach Memorial system. Inpatientcoverage area for Valley Children’s pediatric rehab includes medical careHospital, near Fresno. This is a large, and the full array of therapies, plus apediatric specialty center with 358 school re-entry program. Miller alsobeds, 550 doctors and 3000 staff. maintains a robust outpatient clinic,It is a teaching hospital for Stanford with expertise in scoliosis. millerchil-medical students. Valley Children’s drenshospitallb.orgis the only free-standing center inCalifornia accredited in the pediat- Rancho Los Amigos Hospital inric rehabilitation specialty by CARF. Downey, is part of the LA Countyv­ alleychildrens.org medical system. Rancho has a storied past in taking care of polio patients,Children’s Hospital Los Angeles many of them children. The rehab unittreats thousands of kids every year in has a pediatric department as part of350 pediatric specialty programs. It its nationally recognized Model Sys-is a Level I Trauma Center. The Margie tems comprehensive SCI program.and Robert E. Petersen Foundation A new Wellness & Aquatic TherapyRehabilitation Center, a 22-bed acute Center just opened on the campus,inpatient facility, treats complex diag- expanding Rancho’s commitment tonoses, including brain and spinal cord the outpatient community. See p. 70.injuries. The small but specialized unit dhs.lacounty.govopened in 2015. Most rooms are pri-vate and accommodate parents with Rady Children’s Hospital is dedi-beds and showers. chla.org cated exclusively to pediatric health- care, serving San Diego, ImperialCalifornia Rehabilitation Institute, and southern Riverside counties.Westside Los Angeles, is a new, Rady has 551 beds and is the larg-full-service inpatient rehab, a partner- est children’s hospital in the state,ship between UCLA and Cedars-Si- based on admissions. Rady’s inpa-nai, managed by Select Medical. tient ­rehab unit includes spinal cordwww.SCI.first 90 days.com 97

SPINAL CORD INJURYINCHILDRENinjury care. The hospital, a Pediatric GETTING FINANCIAL HELPLevel I Trauma Center, provided care FOR KIDSto 700 patients in 2016. A full range ofoutpatient services is also available. Each state receives funds from therchsd.org federal government for early inter- vention programs to coordinate ser-Sharp Hospital in San Diego is the vices for infants and toddlers fromonly CARF accredited program in ages 0 to 3, and their caregivers.Southern California with a compre- After the age of 3, children may behensive system of care specialty in eligible for services from physical,pediatric spinal cord injury. See p. 71. occupational, and speech therapysharp.com through the public school system.OUTPATIENT OPTIONS FOR The federal Individuals with Dis-­PEDIATRIC SCI SERVICES: abilities Education Act (IDEA), Part C, supports kids with disabilities andMattel Children’s Hospital is on the their families. In California, the EarlyUCLA campus, located on the third Start system is intended to enhanceand fifth floors of Ronald Reagan the capability of every family withUCLA Medical Center. guclahealth. an infant or toddler with a disabilityorg/mattel to meet the child’s developmental needs. dds.ca.gov/earlystartOrthopaedic Institute for Childrentakes care of kids at the downtown All school districts in California areLos Angeles Campus or on the responsible for providing early inter-Westside (The Renee and Meyer vention and education services toLuskin Children’s Clinic) at the Santa eligible infants and toddlers youngerMonica-UCLA Medical Center. Visit than 3. The school district must de-o­ rtho-institute.org velop an Individualized Family Ser- vice Plan (IFSP) within 45 calendar days of the date it receives a referral for early intervention services. Specially designed instruction is available to children with disabilities at no cost to parents. This allows kids be educated with their peers as much as possible, in the least restrictive en- vironment. cde.ca.govwww.SCI.first 90 days.com 98

SPINALCORD INJURY IN CHILDREN Navigating the special education Easter Seals services includesystem can be complicated but par- rehabilitation, physical therapy,ents should know that there are dis- occupational therapy, speech andability rights laws and programs, and hearing therapy, job training, em-experts who will help. An excellent ployment, child care, adult day ser-SoCal reference is TASK (Team of vices and much more. easterseals.Advocates for Special Kids), a fed- com/southerncalerally funded nonprofit for parents,teachers and schools to make sure Family Voices offers resourceskids have the accommodations and and advocacy for family-centered,resources they need to suceed in community-based, care for childschool and community. The vision: and family. familyvoices.org“to ensure that all children with dis-abilities receive a high quality edu- Parent Advocacy Coalition forcation, are included in the world, and Educational Rights (PACER) ad-adequately supported so that they dresses special needs for all stagesacquire the necessary skills, experi- of childhood and all disabilities, andences and accommodations to be identifies resources and servicessuccessful, contributing members available to help families learn andof society and as self-sufficient as grow. www.pacer.orgpossible.” Variety Children’s Charity See taskca.org; for Spanish speak- ­delivers medical equipment anding parents, see fiestaeducativa.org services, healthcare and well-being to individual children and children’sOTHER RESOURCES FOR KIDS health organizations. LA office: 323-AND FAMILIES 954 -0820; usvariety.orgAbility Tools, part of California fed- Wheel to Walk Foundation helpserally funded Children’s Services, children up to age 20 with disabil-provides physical therapy and occu- ities obtain medical equipment orpational therapy, and medical ther- services not provided by insurance.apy conference services for childrenwith neurological or musculoskele- •wheeltowalk.comtal disorders, including spinal cordinjury. abilitytools.orgwww.SCI.first 90 days.com 99

Stay Strong I know what you’re thinking. This is the absolute worst thing ever. No one plans on getting paralyzed, but it’s not the end. I was 19 when I had my motorcycle accident, leaving me a paraplegic. They didn’t think I would make it. But with God’s help, family, and friends, I have been able to have an unbeliev- ably productive life. I own a company that specializes in urological supplies, and I sell real estate. I know if I was not using the most advanced catheters on the market that I might not be where I am today. Contact me if you would like more information. —Anthony [email protected] IN UROLOGICAL SUPPLIES WheelieMedicalSupply.com 661-510-4443

SCI: 90FIRST DAYS BODY AND MIND •SECONDARY CONDITIONS•PSYCHOSOCIAL ISSUES & COPING •SEXUALITY www.SCI.first 90 days.com 101

BODY AND MINDSECONDARYCONDITIONSS pinal cord injury affects nu- the nervous system responds in a merous body systems. Here confusing way. are some of the health issues you must manage over the For most susceptible people, long term. Note: this is bare- AD is easily treated, and easily pre-bones information; three good places vented. The key is knowing what theto learn more are the Reeve Foun- symptoms are, knowing your base-dation website (christopherreeve. line blood pressure, and knowing theorg), the Model Systems Knowledge sorts of triggers that set it off.Translation Center (msktc.org), andthe CareCure message boards (sci. AD requires quick and correct ac-rutgers.edu). tion; there is a possibility of stroke if misdiagnosed or untreated.AUTONOMIC DYSREFLEXIA (AD) This is important to know: ManyThis is a potentially life-threatening health professionals are not familiaremergency that affects people with with AD, so it becomes essential thatinjury levels at or above T6. AD is a those at risk for AD, and people closeblood pressure regulation condition to them, must recognize the symp-triggered by an irritant below the toms and know what to do.level of injury. Of course one cannotfeel this pain or discomfort, and thus Symptoms of AD vary but may include high blood pressure, pound- ing headache, flushed face, sweating above the level of injury, goose flesh,www.SCI.first 90 days.com 102

BODY AND MINDnasal stuffiness, nausea, and a pulse the brain can’t send messages be-slower than 60 beats per minute. low the level of injury, BP there is not controlled. Your body is dysreflexive Triggers for AD vary too, but most – confused and unable to balance outoften are related to the bladder. Uri- the blood pressure.nary tract infection, blocked catheteror overfilled collection bag can be the So, what do you do? At the firstcause. Other causes: tight clothing; sign of AD, check your blood pres-ingrown toenails; bowel issues (con- sure against your baseline read (if youstipation or gas); skin sores; broken are at risk for AD, keep a home bloodbones; burns; cuts; and abrasions. pressure monitor handy.) Sit upright.Sexual activity can cause AD, as can Loosen tight clothing. Check if blad-menstruation in women. der is too full. Look for other things, e.g., a skin or bowel issue. Remove AD is complicated. You need to the cause and AD will almost alwaysunderstand how the workings of the calm down.autonomic nervous system – this isthe part of the nervous system that If an episode of AD continues evenworks without us thinking about it. after the cause has been removed,It controls blood pressure, heart rate, and if your systolic blood pressurebody temperature, sweating, diges- is greater than 150 mmHg, considertion, etc. A noxious stimulus (pain you applying nitropaste to the skin abovecan’t feel) tries to send a message to the level of injury. Other BP drugsthe brain but it doesn’t get past the such as hydralazine, mecamylamine,site of injury. The pain signal does, diazoxide, and phenoxybenzaminehowever, activate a reflex in another might also be used.part of the nervous system, a sub-set of the autonomic system called AD can be prevented but mostthe sympathetic system. This causes people with a T6 level of injury orblood vessels to narrow, which in turn above will experience it. This may becauses blood pressure (BP) to rise. scary the first few times it happensOnce BP goes up, this gets detected but you will learn to recognize symp-by nerve receptors in the heart and toms and to know your particularcirculatory system, which gets a mes- triggers. Keep your catheters clean,sage to the brain. The brain slows the stick to a regular bowel program andheartbeat and opens the blood ves- watch out for skin irritations.sels above the level of injury. Since If you ever go to a clinic or hospital with AD, be prepared to school thewww.SCI.first 90 days.com 103

BODY AND MINDmedical personnel on what is hap- bladder, running some tests measurepening and what needs to be done. pressures, volume, etc. A manage-Many ER doctors don’t know any- ment program will be prescribed,thing about it and may try to treat with the goal of keeping you dry andyou improperly. You can get a wallet your kidneys healthy.card from the Reeve Foundation de-scribing AD and its treatment to use Intermittent catheterization (IC)in an emergency. See Christopher- is the most common type of bladderReeve.org, search “wallet card.” management. This means that a cath- eter, a thin plastic tube, is insertedBLADDER (by you or someone else) by way of the urethra (the opening where peeSpinal cord injury knocks out the passes to the outside) to drain thecircuits that control your ability to bladder on a regular schedule, usuallypee. Either you can’t stop urine from four to six times a day. You may needflowing, or you can’t get it to flow to keep track of your fluids so yourat all. Learning how to manage the bladder doesn’t overfill and get over-bladder is an essential part of rehab, stretched, especially at night. IC helpsand keeping the bladder healthy is a to maintain your normal bladder size.task that lasts a lifetime. You may need to take anticholinergic drugs (e.g. Ditropan) to keep your Early after injury the bladder is bladder from being too overactive,affected by spinal shock: the detru- which could lead to leakage.sor muscle, which causes the blad-der to squeeze, is relaxed. It won’t Indwelling catheterization is anempty. This shock will wear off, usu- option that uses a catheter that staysally within a week or two after injury. inserted in the bladder for about aAt that point, depending on level and month at a time, with a urine collec-extent of injury, the bladder will either tion bag. Sometimes the indwellingsqueeze on its own (spastic), or stay cath is routed to the bladder thoughloose (flaccid). The bladder outlet, the abdomen, by way of a port madethe sphincter, is also either tight or by a surgical incision. This so-calledrelaxed. A closed sphincter will create suprapubic indwelling catheter al-bladder pressure – not good for the lows easier access and may be prefer-kidneys. A loose sphincter will leak – able to a urethral indwelling catheternot good for your lifestyle. for sexuality activity: the catheter is not in the urethra and not in the way. Your rehab doctors will assess thewww.SCI.first 90 days.com 104

BODY AND MIND Advantages of any indwelling cath BOWELinclude unlimited fluid intake. Somepeople get bladder stones using an A spinal cord injury knocks out theindwelling cath; these can block the bowel, which leads to problems mov-catheter and create backpressure ing waste through the intestines andthat’s bad for the kidneys. colon, or constipation. Stool may not move at all without some help, or it Reflex voiding is an option for might pass at the wrong time, themen with spastic bladder and relaxed dreaded involuntary, when you’re outsphincter; it uses an external cathe- in public. Bowel management won’tter affixed to the penis by a condom completely control the bowel but it­device, and drains to a collection bag. can retrain the body to have a regularNo one has come up with an equiva- movement, and therefore remove alent reflex voiding system for women, lot of the anxiety.Early after injury the bladder is affected by spinal shock:the detrusor muscle, which causes the bladder to squeeze,is relaxed. It won’t empty.other than diapers. As with the bladder, SCI can cause Urinary tract infection is a chronic tightness (spasticity) or looseness (flaccidity) in the rectum, sphinc-issue for almost any bladder man- ters, and pelvic floor. Those with in-agement program. It’s all the more complete injuries have more muscleimportant to avoid a UTI because strength and sensation and thereforethere are few antibiotics available to fewer bowel issues.treat it. There are catheters on themarket that allow a sterile drainage, The goals of a bowel program arebut even that is not a foolproof way to to pass a soft, formed stool on a dailyprevent infection. Meticulous hygiene or every-other-day basis. A programis essential. Some people swear by involves eating a good diet, drinkingcranberry extract to keep bladder lots of fluids, using any bowel medica-i­nfection away; some take D-man- tions recommended by your doctor,nose, a type of sugar. and using techniques that ­activatewww.SCI.first 90 days.com 105

BODY AND MINDthe reflex to empty the rectum. BONES Diet recommended for better Bone loss post-SCI is dramatic, es-bowel care includes natural fiber from pecially in the first two years afterfruits and vegetables to increase the injury; at that point you will lose halfbulk of stool, making it easier to move your bone density, just the same asit through the colon. Drink lots of occurs in a non-injured 70-year-oldwater so you won’t get constipated. woman. This matters because weakBowels move better after a meal. Be- bones break more easily.ing active is good for overall health,including bowel function. Bones melt away in anyone who is inactive or stuck in bed. But SCI Your doctor may prescribe stool breaks down bone at a much fasterYou can’t cure bone loss but you can do some things tokeep bones healthy. Increase physical activity — especiallyweight-bearing or resistance exercises.softeners, stimulant laxatives (bowel rate, due to metabolic issues that arebullets) for the colon or bulking lax- not fully understood. You can’t cureatives to prevent diarrhea and add bone loss but you can do some thingsshape to stools. Also, rectal laxatives to keep them healthy. Increase physi-may help with rectal emptying. cal activity, especially weight-bearing or resistance exercises. Techniques you can do at homeor with help from a caregiver include Biphosphates, e.g. Fosamax,digital rectal stimulation to remove work in the general population forstool. Enemas, flushing warm water osteoporosis and are sometimes pre-into your rectum, help to empty it. scribed in SCI. Calcium supplements may be recommended. FDA-approved bowel irriga-tion devices such as the Peristeen Get some sun, and if you can’t,(­ coloplast.us) and PIE (Pulsed Irriga- take vitamin D. Don’t smoke, limit al-tion Evacuation, piemed.com) have cohol and try not to fall. Some use vi-been shown to help with some diffi- bration machines for bone health butcult bowel programs. there little evidence to support this.www.SCI.first 90 days.com 106

BODY AND MINDHEART as an alert to move your finger from the flame, or to stay off an injuredHeart disease is the leading cause ankle. But chronic pain is a worthlessof death in the U.S. and this includes friction wearing away your quality ofthose with SCI. Sedentary living plus life. To some degree it can be treated,a series of metabolic changes in the or perhaps made peace with, but painbody combine to elevate your risk is difficult to eliminate altogether.for cardio issues. What can you do?Physical activity. Diet. Weight man- The treatment arsenal for man-agement. aging pain is limited, moving quickly, and mostly by trial and error, fromIMMUNE SYSTEM aspirin to opiates, with a few antisei- zure or antidepressant medicationsSCI does a number on the immune in the mix. While complete relief askssystem, right from the beginning. too much of modern medicine, livingThat’s not good because of the better with pain is a reachable goal.constant risk for infection. There is­evidence that the immune system is Doesn’t seem fair, does it, whenclosely related to the gut and to the pain occurs in the paralyzed lowercentral nervous system. Managing part of your body where there is littlethe health of the gut, for example or no other sensation? That’s whatwith a probiotic supplement, may nerve pain, or neuropathic pain, is.confer benefits to the whole body. Research scientists do not fully un- derstand nerve pain. It is apparentlyMUSCLE ATROPHY the result of crossed-up messages between nerves damaged by yourDon’t use them you’ll lose them. You spinal cord injury and the brain. Thewill lose a lot of muscle tone. Exercise brain, your body’s central switch-is good; for the muscles you can’t board, misreads the messages anduse on your own, functional electrical turns up the volume on signals in areastimulation (FES) builds muscle. of injury – so you feel pain where you feel nothing else.PAIN Musculoskeletal or mechani-The majority of people with spinal cal pain can be caused by overuse,cord injuries deal with chronic pain, stress and strain of muscles, jointsthe relentless kind of burning, stab- or bones. It is a common problembing or tingling that keeps hanging for everyone, especially as we getaround. Normally, pain has a purpose,www.SCI.first 90 days.com 107

BODY AND MINDolder. Upper extremity (shoulder, el- neuropathic pain. Side effects includebow and hand) pain can be aggra- dizziness and sleepiness. Lamotrig-vated by doing transfers or pressure ine is another drug in this categoryrelief maneuvers, or from pushing a that works for some people with in-wheelchair. Back and neck pain may complete injuries; side effects includebe a problem for a paraplegic who skin rash, fever, and fatigue.had spinal fusion surgery. Neck painmight occur in quads who use chin- Antidepressant medications usedor mouth-operated joysticks. for chronic pain include venlafaxine (Effexor), and amitriptyline (Elavil). Visceral pain is often described as Side effects include dry mouth,cramping and/or aching. It is usually sleepiness, and dizziness.located in the abdomen and can beset off by constipation, a kidney or Some people get pain relief usinggall stone. cannabis, legal for medical purposes in more than half the states in the U.S. There is no ideal way to treatchronic pain; it varies greatly between Narcotics (opiates) such as mor-individuals, and people don’t all re- phine, codeine, tramadol, hydroco-spond the same way to treatments. done and oxycodone are veryYou and your doctor may need to try effective against neuropathic andcombinations of drugs, therapy and musculoskeletal pain. Side effects areother treatments, including psycho- considerable, include constipationlogical treatments. It’s never as easy and sleepiness, and of course theseas ‘take this pill’ for relief. You may can be addicting. You may develophave to try a number of things before dependency and have unpleasantfinding something that helps. withdrawal symptoms if you sud- denly stop taking them. Non-steroidal anti-inflammatorydrugs (also known as NSAIDs) in- A few options for chronic pain re-clude aspirin, ibuprofen (Motrin, quire surgery: Some neurosurgeonsAdvil) and naproxen; these are com- may recommend snipping certainmonly used to treat general muscle nerve roots: The dorsal root entrypain. Side effects may include stom- zone (DREZ) procedure destroysach upset, liver damage, or bleeding. specific sensory fibers where they enter the spinal cord. Nerve cutting Antiseizure medications such as would be a last resort, consideredgabapentin (Neurontin) and prega- perhaps after trying an implantedbalin (Lyrica) work for some people’s spinal cord stimulator (common forwww.SCI.first 90 days.com 108

BODY AND MINDback pain), or maybe an implanted the lungs are. Spinal cord injury, es-intrathecal pump to deliver morphine pecially in the cervical area, C5 andor baclofen directly to the spinal cord. above, usually means weakness in breathing function. Some higher in-PAIN MANAGEMENT STRATEGIES juries will require a tracheostomy (an airway through the neck) with a ven-Keep yourself healthy; this will help tilator (an air pump) to make sure youreduce pain. get the oxygen you need to survive. Those with C3 or lower injuries have •Physical activity can reduce pain; the potential to wean from the trach,.exercise can also improve mood. There are electrical stimulation de- •Physical therapy or massage can vices on the market that help somehelp with musculoskeletal pain. quads breathe off the vent (averylabs. com or synapsebiomedical.com). •Deal with depression: it can makepain worse. People with high thoracic and lower cervical injuries won’t need •Transcutaneous electrical nerve mechanical assistance but due tostimulation (TENS) may help muscu- abdominal muscle loss, may haveloskeletal pain. to work harder to breathe. This may mean it’s harder to get a good cough, •Deep brain stimulation may help and thus trouble clearing sticky mu-some cases of chronic pain. cus from the lungs, and thus at an increased risk for respiratory health •Botox or chemical nerve blocks problems. Quads and their caregiv-work for some people. ers are taught some techniques to encourage cough. There are also ma- •Relaxation techniques and/or chines available to facilitate a pro-biofeedback can teach you to modify ductive cough (e.g. coughassist.com)muscle pain. Those with respiratory weakness •Self-hypnosis (mindfulness, or have to be very careful to avoid infec-meditation) helps many people to tion, either bronchitis (infection in thereduce chronic pain. tubes that deliver air to the lungs), or pneumonia (infection in the air sacs •Distraction, when all else fails, in the lungs). These infections cre-may help with chronic pain. Do fun ate extra mucus, which can result inthings, find meaningful activities. Thepain is still there but at least it is notdominating your life.RESPIRATORY HEALTHThe lungs are not affected by pa-ralysis but the muscles that controlwww.SCI.first 90 days.com 109

BODY AND MIND­atelectasis (a collapse of the lung). ease who can’t feel pain or discom- Sleep apnea, a type of breath- fort. Skin wounds are stubborn; they can result in long, boring, expensive,ing obstruction, is an issue for some non-productive stays in the hospital.quads: this may require use of a Skin issues not only interrupt yournight-time ventilator mask (BiPAP, life, but can also lead to more seriousbilevel positive airway pressure). health issues. Advice to keep breathing: Avoid Sores begin with the force of thesmoking, and secondhand smoke. body against a sitting surface – oftenClear secretions in the lungs. Drink on the bony part of your butt or hips,plenty of water, watch your weight; or heels. This happens when you re-overweight or obese people may main in a single position long enoughhave problems with their lungs, andCheck your skin! Every day. Be relentless. Use a mirror, orhave someone else check. Pressure sores don’t become­dangerous overnight – they form in stages.are at higher risk for sleep apnea. to pinch off blood flow (ischemia), Be aggressive about prevention. which then leads to cell death (ne- crosis). Another type of force is sheer,Avoid people who may have a cold the stretching and folding of skin,or flu. Get vaccinations for flu and which can also restrict blood vesselspneumonia. Get some exercise. leading to tissue damage.SKIN CARE Check your skin! Every day. Be re- lentless. Use a mirror, or have some-The thing to know about skin sores, one check. Pressure sores don’taka pressure injuries or decubitus ul- become dangerous overnight – theycers: no pressure, no ulcer. form in stages. The earlier you spot one, the easier it is to get rid of. It’s really easy to say that pressuresores are entirely preventable – with Stage I is the most superficial: red-few exceptions, they are – but they ness with hot or cold skin that doeshappen, quite commonly, among not go away after pressure is relieved.people with spinal cord injury or dis-www.SCI.first 90 days.com 110

BODY AND MINDThese usually vanish soon just by you are using the most appropriatekeeping the pressure off. protection. See p. 137 for more on seating and positioning. Stage II involves actual damage tothe skin surface, similar to a blister or Watch out for hot water. Don’tabrasion. See your doctor; this type sit too close to the fireplace. Don’tof wound will heal without much in- get sunburned. Don’t forget cold-tervention other than pressure relief, weather protection, too; frostbite canbut it may take a few weeks. happen very fast. Wear clothing that won’t bunch-up and cause a sore. Stage III sores, difficult to heal, go Eat well – you need protein to keepdeeper into skin tissue. At this point skin healthy. Drink lots of liquids (beeryou and your wound specialist doctor and wine don’t count). Don’t smoke.need to get very aggressive, espe- Stay active.cially if there is fever, or if the woundstarts to smell foul. SPASTICITY Stage IV goes even deeper, form- Spasticity, the uncontrolled tighten-ing a deep cavity in the skin, perhaps ing or contracting of the muscles, isinvading muscle or bone, and mak- part of the experience for most peo-ing you vulnerable to life-threatening ple with spinal cord injury. It is the re-spread of infection to other parts of sult of damage to nerve reflex circuitsthe body. A deep sore may require that no longer have a direct connec-surgery or skin grafting – very expen- tion to the brain. It can happen on itssive and a serious crimp in your life- own, or because of a trigger, such asstyle. These nasty wounds can take as stretching a muscle or moving a limb.long as two years to clear up. Irritations such as pressure sores or urinary tract infections can aggravate Advice: Keep skin dry and clean, spasticity.watch your weight (too skinny, nopadding; too heavy, excess pressure), Spasticity is not a medical risk,do those weight shifts, just as they per se, but it can be annoying andteach you in rehab (every 15 to 30 limiting, sometimes painful, and oc-minutes for 30 to 90 seconds). Use casionally, dangerous. Some peo-an appropriate seating surface, a ple with SCI can experience spasmscushion that offers pressure protec- strong enough to jerk them out oftion. Therapists can map the pressure their chair.on your buns to spot the most sen-sitive areas, and therefore make sure Spasticity does not always havewww.SCI.first 90 days.com 111

BODY AND MINDto be treated. Sometimes it is helpful UPPER EXTREMITY PRESERVATIONto maintain muscle tone, and can beuseful for functional activities such as Arms were not made to be your legs,standing or transferring. so it’s common to overuse the u­ pper extremities, including the wrists. Physical treatments to mute Preserve your upper body! Avoid ex-spasticity include regular stretching treme positions on the shoulders or(range of motion). Weight bearing, in wrist during transfers, or when reach-a standing frame, can help too. ing. Manual wheelchair pushers, use the lightest one possible. Consider a Your doctor may prescribe drugs power assist device to make going upfor managing spasticity: baclofen, hills easier. Consider going to a powervalium, dantrolene, and tizanidine are chair if pushing is getting too hard.most common. The effectiveness of Exercise is good, including flexibilitythese drugs varies with the individual. and stretching routines.Each has side effects, including fa-tigue or drowsiness, weakness, nau- WHAT YOU SHOULD KNOW GUIDESsea, or low blood pressure. The Consortium for Spinal Cord If spasticity can be localized, an- Medicine offers a series of Whatesthetic drugs, e.g. phenol or botox, You Should Know guides, derivedmight be useful. Since the benefits from the Consortium’s authoritativeare only temporary, injections must clinical practice guidelines for healthbe repeated. care professionals. • Sexuality/Reproductive Health A fairly common surgical treat- • Bladder Managementment for severe spasticity involves • Respiratory Managementsurgical implantation of a bat- • Upper Limb Preservationtery-powered pump with a cathe- • Autonomic Dysreflexiater to deliver medication directly to • Pressure Ulcersthe spinal cord (called the “intrathe- • Expected Outcomescal” space). Intrathecal baclofen has • Depressionfewer side effects than taking the • Neurogenic Boweldrug orally, but of course surgery has Guidelines are free from the Para-its own potential complications. lyzed Veterans of America, www. pva.org, click on publications. Rhizotomy, the surgical cutting ofnerves, is another treatment for spas-ticity. This option needs to be care-fully considered – it is not r­eversible.www.SCI.first 90 days.com 112

The Bridge to aMeaningful RecoveryFor over 35 years Centre for Neuro Skills has been recognized as anexperienced and respected world leader providing intensive postacutecommunity-based brain injury rehabilitation. With facilities in Californiaand Texas, the highly-trained CNS staff offers outcome driven medicaltreatment, therapeutic rehabilitation and disease management servicesfor individuals recovering from acquired and traumatic brain injury.

BODY AND MINDPSYCHOSOCIAL ISSUESAND COPINGT here is no recipe, or timeline, for gracefully emerging from always handled problems. Well, not the scary darkness of the spi- exactly. You may be having a hard nal cord injury experience. It time looking at yourself in the mirror. probably won’t be graceful You worry that you are broken, thatat all. Spinal cord trauma is not for you will be a burden to your family,sissies; it’s a long slog into an alter- that no one can possibly love younative reality. There’s all the medical ever again. Everybody you know hasstuff, and the many ways the body amplified your catastrophe all overno longer works the way it used to. social media; they all know aboutBut there’s also the noise inside your your situation and the last thing youhead. Why you? You might as well ask want is their pity. You feel totallywhy not you. Who knows. This much alone but without a shred of privacy.is true: No two people process theintensity of SCI quite the same. We have said this before and it bears repeating: it gets better. You It’s generally the case that your have more capacity to cope with thispersonality survives intact; you’re the than you can possibly imagine. It willsame person after SCI as you were take time.before, which suggests that you’lldeal with this much the way you have Adjustment happens, and you must expect that it will happen, al- though seldom in the first 90 days.www.SCI.first 90 days.com 114

BODY AND MINDYOU ARE NOT A TRAGIC CHARACTER DATA: IT GETS BETTERThere’s actually quite a bit of research Data from the U.S. Model Systemsabout the psychology of spinal cord SCI program, which tracks 32,000injury. A key message from the med- people living with spinal cord injury,ical literature is that quality of life for shows that a measurement of satis-people living with paralysis is not dra- faction with life increases after onematically lower than what is found in year post-injury and keeps risingthe general population. Ever see a for every year data is tracked, up toperson on the street in a wheelchair and beyond 40 years post-injury.and think, oh that poor guy, I don’tknow if I could possibly live like that? Also, a measure called “Per-Guess what? That person is not a roll- ceived Health Status by Post-Injurying tragedy or the object of pity. He Year” indicates that at one yearor she has more than likely figured post-injury, 62 percent of SCI sur-things out, has a job, a family and a vivors report their overall health asfuture. You will experience people good, very good or excellent. Atmisjudging your situation and soon year five, that number goes up toenough you will know it isn’t so much almost 70 percent, at year 25 it isthe disability that’s the problem as reported at 77 percent.much as it is other people’s attitudesand responses to it. You will figure this thing out. You won’t believe how much stronger Besides an uncertain future and you will be and how far you willthe full range of health issues that have progressed a year from now.come with SCI, e.g. pain, spasticity, You know what they say, patienceincontinence, other factors confound is a virtue. Stay strong, and push on.the adjustment process. Someonehurt taking a known risk, say a mo- very bad time with major life-chang-torcycle racer, may deal with paral- ing injuries.ysis differently, maybe better, thansomeone plagued by guilt for doing Someone with a wide network ofsomething really stupid, say crashing family and friends will usually dealthe car while texting. And someone with SCI better than the lone wolf onvictimized in a random accident or his own. Women, as a rule, are bet-surgical error may be full of blame ter prepared for the consequencesand resentment, therefore having a of SCI than are men. Research has shown that people who see set- backs as temporary and changeablewww.SCI.first 90 days.com 115

BODY AND MIND– ­optimists – do much better in reduc- Ross inventory of feelings that wereing the stress of trauma than those first applied to death and dying. Firstwho are more negative, or passive – there is denial, then anger, bargain-pessimists. People who are assertive ing, depression and, finally, accep-participants in rehab are usually less tance. Those stages might still holddepressed and better at social inte- for discussing death, but stage the-gration, compared to passive people ory suggests a sequence of mentalwho gladly accept being nurtured. states. But these reactions rarely fall in to any order, and don’t really pre- In this section we’ll review some of dict how people will deal with suddenthe psychological aspects of spinal onset of spinal cord injury. In the verycord injury. There may be a helpful early days post-injury, before denialmessage here, or a tool to discover a and way ahead of anger, you may feelglimmer of hope to hang on to. The gratitude. You and your family maypoint is to find ways to live your life feel anxious, and helpless, but gladas a functioning human with a man- you’re alive. It’s scary, it’s insane. Butageable future – without dismissing you survived. That’s where emotionalthe facts. You may not fully accept recovery has to begin.your new reality but it’s importantto recognize the implications of this Anybody around an SCI rehabreality, and to make the necessary knows that denial is almost alwaysadjustments to get reorganized. part of the picture. It’s not always a bad thing; denial is an important Rehab psychologists are an im- coping mechanism, a place to hideportant resource if you’re lucky out. You may have an exaggeratedenough to have a good one avail- optimism and a distinct vision ofable. These professionals will tell you walking out of that trauma hospitalit is possible to teach optimism and or rehab. You don’t want to talk toresilience, and therefore better cop- the peer counselor because you can’ting skills. They can help reset your relate to that dude rolling into theperspective so you can see up the room in a wheelchair. That’s not yourroad; they may be able to help you destiny! That’s fine, it’s a way to staybreak through your isolation. So, by hopeful, and it may help you throughall means, if it is offered, take advan- the turmoil and uncertainty of thetage of counseling. early days. Distorting reality in the long-term, living your life in the fog of Early on, you may hear aboutmodels of grief, such as the Kübler-www.SCI.first 90 days.com 116

BODY AND MINDd­ enial, will not serve you well. What’s the plan? Generally, the rehab Anger is common with SCI (ask a team mobilizes against depression by providing a sense of realistic hope,spinal cord injury nurse, who often supporting you to take small stepsbears the brunt of the aggressive, toward self-reliance and indepen-pissed off patient). dence, using education and perhaps assisted technology to facilitate your Guilt is a type of anger, directed in- ability to make choices, to reintegrateward. This is a major factor for some, with family or community.especially with injuries related to in-judicious behavior. There are visual Your rehab docs may also pre-imagery tools the rehab psychs may scribe prescription drugs.use to channel some of this angryenergy into something less toxic. Speaking of medicating angst, people with SCI are at some risk for Sadness, powerlessness, and loss becoming substance abusers, or forof control are also part of the acute continuing to be abusers, since drugsSCI inventory, but it’s good to know or alcohol may have been at the rootthat these are generally not perma- of the injury in the first place. Drugnent states of being. use won’t cut it in rehab, and certainly won’t help your body return to its Depression – not just having the maximum efficiency.blues but lack of appetite, insomnia,hopelessness, existential dread – can On the far end of depression andbe a side effect of trauma but maybe sadness, some have suicidal feelingsnot the dominant one many peo- (more common in SCI than in theple, including professionals, assume. general population, but rare and not(­According to Model Systems data, considered a normal response, de-more than 25 percent of people with spite what some Hollywood moviesSCI had difficulties with depression may show about the futility of lifebefore they were injured; the post with paralysis).injury incidence isn’t much different). Suicide is a difficult area – ulti- Most people with SCI do not get mately it is your existential choice todepressed, and therefore passing end it all, and as of 2016 in California,through depression is not a required you have the right to ask for physi-stage to reach the promised land of cian assistance. But even if you areacceptance. fully competent and cognizant, the rehab team will do everything they If depression lingers, it becomesa clinical issue that may be treatable.www.SCI.first 90 days.com 117

BODY AND MINDcan to talk you off the ledge, hoping THE SOCIAL SIDEto offer tools to allow you to pauseand reflect, and perhaps to reframe Self-renewal is part of your adjust-your outlook. ment but it isn’t the whole story. Yes, successful rehab involves being moti- The goal of rehab is to get you vated. It helps to have a fighting spirit.ready to return home with some But that might suggest succeeding insense of control, with some balance this process is all on you. Not so. Youbetween life now and life as you knew cannot discuss the rehabilitation ex-it, and able to make choices in the perience outside of its social context.world you live in. There is a school of thought that Rehab psychologists sometimes believes folks with new spinal corduse easy-to-learn techniques for re- injuries are not defined by uniquelaxation. Learning to be mindful, or to psychological issues, per se. It’s moremeditate, benefits almost everybody that they have problems coping withdealing with stress (including family a world designed for non-disabledand loved ones of SCI folk). people. Therefore, part of the rehab process needs to arm you with infor- Someone in rehab may help you mation and skills to cope with this en-discover the value of mindfulness – a vironment. The kind of non-personalgreat way to quiet the barking dogs variables that might impede yourin your head. Check out the many progress toward self-determinationresources at the Mindful Awareness include lack of money, limited accessResearch Center at UCLA, marc.ucla. to health care, or quality equipment,edu; Mindful USC, mindful.usc.edu; or or accessible housing, or education,the UC San Diego Center for Mind- recreation or work.fulness, health.ucsd.edu/specialties/mindfulness Spinal cord injury comes with a social stigma, and sometimes out- Another tool psychologists might right discrimination. These are so-use is called cognitive behavior cio-environmental stressors and havetherapy, a technique to listen to pa- nothing to do with motivation, at-tients and then help isolate negative titude or coping strategy. You can’tthoughts and patterns, and to teach fully control these social barriers butstrategies to identify and solve prob- you need to be informed about them.lems. This therapy has been success- The rehab experience should includeful one-on-one and in groups to ease resources and education about dis-anxiety and to relax fear.www.SCI.first 90 days.com 118

BODY AND MINDFIVE STYLES OF COPING Walking Mind to Wheeling Mind. W­ e all seek to feel OK about ourselvesSherman Gillums, paraplegic, as we are; over time our attentionexecutive director for the Para- naturally shifts to what’s possiblelyzed Veterans of America: rather than what we’ve lost.Learn from those who’ve beenthere, then challenge yourself to Karen Hwang, C3-4 quad: Disabil-exceed expectations. Limitations ity doesn’t change us into saints orcannot define you without your s­ uperheroes. Most of this comespermission. from bad luck or bad judgment. Don’t look for meaning in your dis-Ellen Stohl, paraplegic, teacher, ability, just appreciate the absurdity.mom: Working through the painmakes us stronger, more creative. Jeff Cressy, C6 quad: Don’t beatYou can let this stop you dead in yourself up over what you can’t do.your tracks or you can accept that It takes a while to come full circle, tothis is the way it is. the point when you quit comparing yourself to what was, and are satis-Gary Karp, paraplegic, author, fied with what you have.speaker: Make the transition fromability legal rights, public benefits, job means sports, travel, school or work.options, funding assistance, assistive Here’s an evergreen from the annalstechnology, transportation, and per- of rehab advice: don’t think about thesonal care resources. 10,000 things you can’t do; just con- centrate on the 9,000 you still can do. Rehabilitation is about making This is another good one, about get-adjustments so you can get back ting up and getting going, from theinto circulation in the community, as late Christopher Reeve: “Either youmuch on your own terms as possible. decide to stay in the shallow end ofIt may seem impossible but people the pool or you go out in the ocean.”do it all the time. You will hear many atta-boy pep You may get lots of advice on how talks about the power of the humanto handle getting slammed with spi- spirit. There are those in the SCI worldnal cord injury. Many say the best who go on about their triumph overadvice is to get active, whether thatwww.SCI.first 90 days.com 119

BODY AND MINDadversity, and how meaningful that LIVE THE LIFE YOU HAVEwas. Or you might meet people whosay they learned patience, or gained a Dan Gottlieb is a practicing psy-fuller appreciation for others, only by chologist and a spinal cord injuryjoining the SCI club. You may have a survivor (C5/6 quad), the result ofhard time believing it, but some peo- an automobile accident that wasple with SCI say the experience has not his fault. He didn’t do too wellbeen so profound that they would with paralysis, describing years ofnot turn the clock back to their un- despair, compounded by more andinjured state. more pain and loss. He says he was filled with self-loathing, insecurity, You don’t have to be a Pollyanna shame and depression. He came toto make peace with spinal cord in- hate his body, which he describedjury. One day, however, if you happen as a “terrorist.”to look back and remember tappinginto a deep resilience inside that After his injury, says Gottlieb, hecarried you through this, feel free to was absorbed in self-pity. He feltshare that with those who have re- victimized. And the school of life kept dishing it out. His parents and•cently arrived on Planet SCI. sister died; his marriage broke up and his ex-wife later died of cancer. Please read the following article His grandson was born with a typeby Dan Gottlieb. He is a clinical psy- of autism. His own health took manychologist who has a cervical spinal unpredictable spirals.cord injury. He has found resilience,and more, to manage his terrible loss Eventually, Gottlieb says, he quitwhile living a meaningful life. The fighting with his life. He discov-article appeared in slightly different ered a powerful resilience. Tappingform in the Paralysis Resource Guide, into his reserves of compassion,reprinted by permission of the Reeve he armed himself to ride out theFoundation. storms. Gottlieb found peace in the wake of suffering. “There is no relationship between disability and happiness. Don’t spend so much of your energy pursuing the life you want or avoiding the life you fear. Have the faith to live the life you have – and live it fully, with greatwww.SCI.first 90 days.com 120

BODY AND MINDlove and gratitude.” Foundation website (christopher- “Yes, there’s a great deal of suf- reeve.org, search for “Dr. Dan.”)fering out there. And there are ways “If we take ownership of our lives,to diminish suffering. But we all we can teach that we can be vulner-have a certain narrative in our head able and strong. We can be depen-how to fix this, how that will hap- dent without losing dignity. We canpen. It’s either when we walk again, have lives that may be difficult butor when our bladder starts working, we can live our lives with grace andor when we lose those pounds, or gratitude.”when our spouse wakes up andbecomes human, or when the in- One technique Gottlieb encour-surance company comes through ages is mindfulness, the “in the– we get a picture in our head of the moment” feeling that people whocircumstances we need to make meditate describe. “Being mindfulourselves happy.” takes you out of your narrative. The only thing we know for sure – the Says Gottlieb, “Live the life you only truth we have – is what wehave instead of waiting for the life experience. Other than that, it’s allyou want, or longing for the life narrative.”you had.” The “big secret,” says Gottlieb, Gottlieb often encounters people is that none of us really wants towith disabilities whose hopes and change. “And yet we keep demand-happiness hinge upon a specific ing of ourselves that we change.outcome. “They live their lives wait- That we’ll be okay when we change.ing for tomorrow, telling themselves We really don’t want to change.‘that’s when I will be happy.’ To me, And I think the most profoundhope is all about believing that to- change we can make in our livesmorrow can bring joy regardless is when we stop trying to changeof today’s circumstances. Hope is ourselves. And live, not just in thethe belief that tomorrow can be body we have, but the person webetter than today, without a picture, have. Imagine feeling compassion,without a photograph in your head, kindness for the person that we are.about what it should look like, or Imagine that. And there is amplewhat it must look like.” research out now about how that changes life profoundly, profoundly. Gottlieb, a teacher at heart, freely That’s the secret.”dispenses advice on the Reevewww.SCI.first 90 days.com 121

HAVE YOU SUFFERED A SPINAL CORD INJURY? ARE YOU LOST IN A WORLD YOU NEVER DREAMED YOU’D BECOME A PART OF? DO YOU NEED RESOURCES?  LOOKING TO GET CONNECTED WITH OTHERS? PROGRAMS: · Resource Care Baskets · SCI Support Groups · Keep Moving Forward Grants · Adaptive Recreation · Peer CounselingCONTACT TRIUMPH FOUNDATION TO HELP YOU REBUILD YOUR LIFE www.Triumph-Foundation.org

SCI: 90BODYFIARNSDTMIND DAYS SEXUALITY pinal cord injury doesn’t cancel out sex, it redefines it. ParalysisCS AREGIVINGaffects arousal, orgasm, and fertility, depending on your level and severity of injury. It also takes a psychological toll on your•CAREGIVINGsexual persona and body image. You Viagra or Cialis, are effective for sex- ual activity. Can you feel it? Depends. In most cases, no. Besides drugs, there are other ­options for getting hard: vacuum devices, implanted pumps, and even implants. See a urologist familiar withmay feel less attractive or desirable, SCI to run down the choices, and theat least in the early days. precautions.Let’s start with men (since there Are orgasm and ejaculation possi-are four times as many males as ble? Maybe. Most guys with complete­females living with SCI). Can you injuries are not able to experience or-still get it up? Yes, most guys injured gasm, although when it does occur itabove the lowest part of the back is sometimes the case that the sperm(the sacral area) can get what’s called go backwards, toward the kidneys.a reflex erection, the response to di- Ejaculation, though, can be accom-rect stimulation. Some men, usually plished by most men; sometimes vi-those with i­ncomplete injuries, are brators or electrical probes are used.able to get a psychogenic erection – How about making babies? Nothe result of thinking about or seeing doubt. Most men with SCI are ablesomething sexy. to father children; sperm volume re-The hard-on may not be hard mains pretty normal, although theenough for penetration but some degree of motility, or movement, canguys find that erectile drugs, e.g. drop. Some special low- and perhaps www.SCI.first 90 days.com 129 www.SCI.first 90 days.com 123

BODY AND MINDhigh-tech stimulation techniques new pathways for sensation andmight be required for collecting the pleasure. There’s something clini-sperm, and introducing it to the egg. cians call phantom orgasm, a way to mentally reassign sensation to- Women’s sexuality is affected by ward parts of the body one can feel.SCI, but not in the desire depart- Keep an open mind, be flexible andment or in the ability to conceive a wiling to experiment. Communicatechild. Vaginal lubrication is typically your needs. It’s not always easy toreduced. Orgasm is possible if some talk freely and honestly about sexfunction remains in the pelvic area. but take your time to explore ways to make both partners comfortable. Some women may miss their pe-riod after injury, but menstruation Relationships: can a couple sur-usually becomes regular again after vive if a partner is paralyzed? Yes,a few months. Getting pregnant is many do, especially if communica-not usually a major issue, nor is vag- tion has always been open and hon-inal delivery. Autonomic dysreflexia est. Some don’t.(see p. 102) during childbirth mustbe considered for women with higher Safe sex: better not ignore this iflevel injuries (T6 and up). Obviously, you want to prevent pregnancy. Con-you want an obstetrician who under- doms are considered the best choice.stands pregnancy, labor and delivery Women should avoid intrauterinefor women with SCI. devices and diaphragms; the pill is not usually recommended because The number one issue many it increases your risk for developingwomen with SCI report is the dif- a blood clot (deep vein thrombosis).ficulty in finding a sexual partner;that is a real barrier, reinforced by Dating: This is a challenge forthe well-ingrained social stigma that ­everybody. First you have to getpeople with disabilities are asexual. yourself in circulation. No ask, noNot much you can do except resist date. If you’re online, should you dis-the stereotype by being your sexy close that you have a disability? Gen-self, and by putting yourself out there erally, yes, it’s a good idea to avoidto meet potential partners. the surprise factor. There’s a couple in SoCal who met online, both are Can sex still be pleasurable? Sure. wheelchair users, and both declinedSex can be fun even when not de- to disclose this. They hit it off anywayfined by orgasm. It’s common that and are married with children now.men and women with SCI discoverwww.SCI.first 90 days.com 124

BODY AND MINDMORE RESOURCES ABOUT SEX AND Of course there are videos to ex-SPINAL CORD INJURY plore. Here’s one from the University of Washington, “Conversations from “Sex and the Single Guy” is one the Bedroom: Sex after Spinal Cordof many essays published online by Injury.” vimeo.com/35081069Stanley Ducharme, a sex therapistwho works with SCI folks. His a­ dvice: Here are a pair of videos fromsex is not performance, it’s a shared Mitch Tepper, a quadriplegic for 35experience. That means creativity years, a successful therapist and sex-and humor must come into play. uality advocate. “Sexual Positions forSome random thoughts: Men with Spinal Cord Injury: Creativ- ity, Adaptability and Sense of Hu- “Establishing a relationship mor” vimeo.com/65527980.­requires that we put ourselves onthe line and face uncertainty as well There’s a companion position-issues regarding attractiveness and ing video for women, same tagline:appeal to another person. There is be creative, adaptable, and neverjust no easy and painless way to meet lose your sense of humor: vimeo.a potential partner .... com/64496090. “As difficult as it can be to discuss Says sexologist Tepper, “If youthe mechanics of sex and personal is- think your disability is limiting yoursues about your body, it is absolutely sexual potential and you want moreessential that some of these issues be out of life, if you are looking for a sexshared. If not, anxiety is a sure bet .... and relationship coach who has been there and has overcome every obsta- “I often encourage men to take cle to succeeded in all areas of life,things slowly as they initially become you came to the right place ... Yousexually active after injury. I would don’t have to break your neck to betypically encourage men to avoid a great lover, but you can learn a lottrying to have intercourse during from someone who has!”those first few intimate encountersfollowing an injury. Instead, enjoy the Tepper’s tagline, and the core ofsensations of being touched, kissed his clinical practice, is “regain thator licked.” feeling.” That’s also the title of a book he wrote in 2015 about the path to- Ducharme offers lots of other es- ward his own self-discovery.says and resources to explore sex-uality after SCI, and to keep it fun: For more good stuff from Tepper,s­ tanleyducharme.com •visit drmitchelltepper.comwww.SCI.first 90 days.com 125

Introducing a new soft, easy-to-use coudé catheter for men Hygienic The soft-squeeze grip makes it easy to guide the tip into the urethra safely without touching it. The dry sleeve means the catheter can be inserted without having to touch the tube itself. Flexible The flexible tip enables easy guidance through the curves and bends of the urethra while the soft catheter ensures easy handling and gentle passage. Discreet For tidy, discreet and hygienic handling and disposal, SpeediCath Flex Coudé is reclosable and features non-medical, practical packaging.Every detail makes it easyThe newest member of the award-winning range of SpeediCath®catheters, SpeediCath® Flex Coudé, is a standard length catheter ina compact package, designed to make every step of catheterizationeasy. With SpeediCath® Flex Coudé, Coloplast continues to set thestandard for quality catheter design and performance.Request your free sample today!Call 1-866-266-6362 or visitwww.coloplast.us/FlexTodaySpeediCath® Flex Coudé is prescribed for use by catheter users who require bladder drainage due to chronic urine retention or post void residual volume(PVR). Before use, carefully read all of the instructions. Call your doctor if you think you have a UTI or can't pass the catheter into the bladder. For moreinformation regarding risks, potential complications and product support, call Coloplast Corp. at 1-866-226-6362 and/or consult the company website atwww.coloplast.us.Coloplast Corp. Minneapolis, MN 55411 / 1-800-533-0464 M7558N 03.17www.coloplast.us The Coloplast logo is a registered trademark of Coloplast A/S.© 2017 Coloplast Corp. All rights reserved.

SCI: 90FIRST DAYSCAREGIVING www.SCI.first 90 days.com 127

CAREGIVINGCAREGIVINGI t doesn’t take long to see that spi- a common feature of life on Planet nal cord trauma sweeps up whole SCI. And indeed, it can be a burden. families, and even networks of But this is an essential job; it is often friends, into the confusion and fulfilling and rewarding. dread. Once they graduate from rehab, But just as the injured person asks,many people living with SCI still re- you ask: “Why me?” Same answer:quire help – usually this comes from a Why not you? Nothing fair about it.member of the family. Being a family At some point, you have to make acaregiver is a tough job, both phys- turn from feeling victimized to ac-ically, and emotionally. Caregivers cepting and choosing the role ofnever ask for this job; the job asked caregiver. If you don’t embrace it atfor them. You don’t get paid. You some level you’re going to have amight even have left a paying job to tough time dealing with anger andtake on this new one. You can’t dele- even resentment.gate. You can’t just take a day off. Acaregiver has to be a sort of executive So, if caregiving has a sort of pas-director for the injured party. He, or sage to acceptance, it’s importantmost often, she, must deal with med- to recognize that caregivers mourn.ications and homecare details, meals, They mourn what their loved one istransportation, bill paying, and keep- going through, the loss of indepen-ing the household from falling apart. dence. Caregivers have their own is- sues, too. Isolation, loss of personal Yes, taking care of a loved one is time, exhaustion, plus feeling like no- body gets what you’re dealing with.www.SCI.first 90 days.com 128

CAREGIVINGHOW TO DEAL WITH THIS? your loved one’s situation. This is im- portant: You need to think of yourselfThe first rule is take care of your- as a member of the healthcare team.self. Keep some balance in your life, That way you can speak with doctorsas much as possible. Take time for or therapists with greater confidenceyourself. You can’t be an effective and ease, and with greater impact.caregiver if you’re a sleep-deprived, You will also be well-served by gain-burned-out mess. Surveys have ing knowledge of the system: theshown that caregivers are more de- insurance and benefits details thatpressed and anxious than the general never seem to get fully sorted.population; 40 percent of caregivershave back problems, three in four do Speak out. You may be the onlynot go to the doctor as often as they one to advocate for your loved one’sshould, and the majority of caregivers best interests. That includes financialreport not eating very well. planning, or perhaps managing legal affairs. How does a family caregiver geta break? Start by learning how oth- Don’t forget how to ask for help.ers manage what you’re trying to do. If a neighbor says, can I do some-Connect to other caregivers. It’s easy thing, the answer is yes. How aboutto find an online support group (try you have someone watch the homethe Caregiving forum at CareCure, for front while you take a two hour breakexample (sci.rutgers.edu), or visit the to meet a friend. Have a friend runReeve Foundation blogs and forums an errand, or fix a meal. If you have(christopherreeve.org). People use a network at church, or work, theythe forums to learn, but also to vent, may want to help. Let them. There’sor whine – that’s OK, it’s better than no shame in admitting your caregiverstewing in self-pity. role is consuming your life. Don’t let it. Find a local resource (see list be- Learn to manage stress. Medi-low). By sharing your experiences tation, or mindfulness, can be veryyou can learn some problem solving effective in dealing with the noisestrategies from other caregivers, and and distractions running throughmaybe help someone else along the your head. This is easy to do: startway. Resist being all on your own; get by setting aside 10 or 20 minutes,on the same bandwidth with others breathe slowly and deeply, focus yourin your situation. attention on an object, or a mantra if you want. Visualize your tension Learn as much as you can aboutwww.SCI.first 90 days.com 129

CAREGIVINGreleasing, your body and mind relax- out a job description. Do you requireing. Many communities, schools and special training or experience? Dohospitals offer classes. There are also you need a driver, somebody wholots of mediation and relaxation apps can lift? Once you find someone whoavailable online. fits the bill, and who seems simpa- tico with the care recipient, draft a Can you get a break? There are contract, or at least a letter of under-caregiver respite services in some standing, to formalize the agreementcommunities; there are also a number between you, the employer, and theof agencies that provide respite care employee.services for a fee (see for example,the respite locator at the National You could of course hire an at-Respite Coalition, archrespite.org; torney to draft an agreement butsee also resources below for regional that may not be necessary. Therecaregiver support centers. Some pro- are guidelines for what to includevide no-cost respite services. available from the Family Caregiver Alliance (caregiver.org). Include theHIRE AN OUTSIDE CAREGIVER? following: wages and benefits (mile- age, meals, vacations, etc.), hours ofFamilies sometimes can’t do it all, work, detailed description of duties,especially for people with high-level things you don’t want (smoking, forinjuries who are unable on their own example) and the terms by which youto get out of bed, or bathe, eat, can both terminate the arrangement.or take care of personal hygiene.Finding good caregivers is difficult. RESOURCESSome places to look include internetservices such as care.com, or even In California, a network of CaregiverCraigslist. Some people find good Resource Centers offers help to fam-caregivers on college campus bul- ily caregivers. Services are free orletin boards. There are quite a few low cost, and include specialized in-agencies in California that screen formation, consultation, counselingpotential caregivers. There are ad- and planning, respite care, supportvantages to using an agency but cost groups, legal and financial help, andsavings is usually not one of them. training. Each center provides un- paid caregivers with support so they Before you start doing interviews, can provide competent care to theirthink of this as if you were running a loved ones at home.business, which in fact, you are. Writewww.SCI.first 90 days.com 130

CAREGIVING Coast Caregiver Resource Center OTHER RESOURCES:(a program of Cottage Rehabilita-tion Hospital) based in Santa Bar- Caregiver Action Network,bara, serves San Luis Obispo, Santa caregiveraction.orgBarbara and Ventura Counties. 2415De La Vina Street, Santa Barbara, CA Family Caregiver Alliance,93105; 805-962-3600, coastcrc.org caregiver.org Caregiver Resource Center National Alliance for Caregiving,of ­Orange (a program of St. Jude caregiving.orgMedical Center in Fullerton) serves­Orange County. 130 W. Bastanchury The Rosalynn Carter Institute forRoad, Fullerton, CA 92835; 714-446- Caregiving, rosalynncarter.org5030, caregiveroc.org National Respite Coalition and Inland Caregiver Resource National Respite Locator Service,­Center serves Inyo, Mono, Riverside, archrespite.organd San Bernardino Counties. 1430East Cooley Drive, Suite 124, Colton,CA 92324; 909-514-1404, inlandcare-givers.com Southern Caregiver ResourceCenter serves San Diego and Impe-rial Counties. 3675 Ruffin Road, Suite230, San Diego, CA 92123; 858-268-4432, caregivercenter.org USC Family Caregiver SupportCenter, serves LA County (formerlyLos Angeles Caregiver ResourceCenter), is a program of the USCSchool of Gerontology, 3715 McClin-tock Ave., Los Angeles, CA 90089;•855-872-6060, fcscgero.orgwww.SCI.first 90 days.com 131

CALL 800.570.1778 FOR FREE SAMPLES Only Cure Medical DONATES 10% OF NET INCOME TO RESEARCH for a cure for spinal cord injuries and central nervous system disorders Cure Catheter® MANY CATHETER OPTIONS Closed System Cure Medical® Cure Medical offers a broad selection of catheter styles, tip Pocket Catheter designs, coating options, sizes, and lengths for men, women, Cure Catheter® with and children – all designed to meet a variety of requirements. Straight or Coude tip Regardless of which Cure Medical catheter you select, you can Cure Catheter® with experience all these exceptional benefits: hydrophilic coating • All Cure Medical catheters feature smooth, polished eyelets for added comfort • Cure Medical products are not made with DEHP*, BPA, or natural rubber latex • Use of all Cure Medical products helps support research for a cure for SCI and CNSD CONTACT CURE MEDICAL TODAY CALL 800.570.1778 for personal assistance with product selection. VISIT www.curemedical.com for information on products and research advancements.December 2016 • 900,082 - A2 REQUEST FREE SAMPLES by phone or online. Cure Twist® for * See CA EPA Office of Env. Health Hazard Assessment List of Chemicals Known to the State to Cause Cancer or women on the go! Reproductive Toxicity, Dec. 8, 2006.

SCI: 90FIRST DAYS GETTING MOBILE •WHEELCHAIRS•UROLOGICAL SUPPLIES•HOME MODIFICATION •CARS & DRIVING www.SCI.first 90 days.com 133

GETTING MOBILEGETTINGMOBILET his section is about tools, gear, THE WHEELCHAIR medical supplies and cars. You wouldn’t know most of this First chair: People don’t often leave stuff existed until you wake rehab in their very own set of wheels; up on Planet SCI. It all seems they go home in a loaner or rentalpretty complicated. It’s not, but op- chair. That’s because wheelchairs aretions vary all over the place, depend- not one-size-fits all; they have to being on your exact specifications and custom fitted and special ordered,preferences, and of course, funding. which can take a month or two. Also, if your injury is new, your body may be Every year there’s a three-day changing over the first few months;disability trade show in Los Angeles this could delay prescribing yourcalled the Abilities Expo. You should chair (you do need a prescription).go, first because almost all the stuff At some point, though, you’ll be as-in this chapter is there to see and try sessed by a seating specialist, usuallyout. Second, because the Expo is a an occupational or physical therapist.good place to meet the community, Besides your weight and height, it’sthe dealers and vendors, the SoCal important to know how strong youagencies and programs that serve are, what you can do functionally andyou, and your fellow wheelie poppers how that might change, how well you– the folks who know the ropes about can transfer in and out of a chair, howwhat gear works best, and perhaps much trunk stability you have, etc.how to get it paid for. Your wheelchair spec ought to takewww.SCI.first 90 days.com 134

GETTING MOBILEinto account where you are going to MEDICAL NECESSITYbe using the chair (e.g., will you bedriving a car from the chair? Is there is the name of the game ina lot of carpeting at home, are you reimbursement. To get yourlikely to play sports, will you use the supplies or equipment paid for,chair on rough terrain?). you have to justify the expense; you must supply your insurance Unless you are familiar with all the company, Medi-Cal or Medicareoptions, the first chair will be selected with a letter of medical necessityfor you. This may not matter now, (LMN). Rehab doctors writebut it will. You can try to steer the these all the time; vendors ofprocess toward better style and func- reimbursable products are oftention. Even if your first chair is a ge- willing to help with advice and evenneric model, at least make sure it fits. LMN templates.Maybe your next one can be moresporty or colorful, and more suited ern lightweight chairs come in a rigidto the way you want to roll. frame model, which offers more tor- sional stability and better handling,MANUAL CHAIRS or a folding frame, which offers more portability.It takes a fair amount of effort butmost people below about C6 are The durable medical products in-able to push a manual wheelchair. dustry offers several categories ofManual wheelchairs are built like bi- manual wheelchair: there are somecycles – easy to transport and sturdy, good only for temporary use. Forand they offer riders a bit of exercise long-term users, there are light-(careful though, overuse of the shoul- weights and ultra lightweights. Light-ders, arms and wrists can also lead weight frames are usually steel; ultrasto repetitive injuries, which makes it are aluminum, magnesium or tita-critical to get the right fit, and to learn nium, or carbon fiber. There is a clearefficient technique). case to be made for the medical ne- cessity of an ultralight – they are not Forty years ago, the standard only easier to push but adjustable.wheelchair was a clunky chrome The authoritative SCI clinical prac-commodity that weighed twice tice guidelines (Consortium for Spinalwhat a manual chair does today, Cord Medicine, pva.org), addressingand there is simply no comparison preservation of arms, shoulders andin handling and performance. Mod-www.SCI.first 90 days.com 135

GETTING MOBILEwrists, recommend a “high-strength, and the durable medical equipmentfully customizable manual wheel- (DME) vendors they like to work with.chair made of the lightest possible Get as involved in the process as youmaterial.” can. Explore your options. Go lightly: Titanium chairs can Chairs come in lots of colors now,weigh under 10 lbs., without wheels; and there are many ways to custom-aluminum chairs can weigh under 13 ize your ride. The wheelchair compa-lbs. Magnesium is light and strong, nies try to out-hip each other when itbut not cheap (see lashersport.com). comes to naming their products – youA bare carbon fiber frame can weigh have the Spazz, the Aero Z, the GT,less than 5 lbs. (see panthera.se, or Ballistic, Veloce, or Terminator. CheckTitanium can weigh under 10 lbs., without wheels; aluminumchairs can weigh under 13 lbs. Magnesium is light and strong,but not cheap.motioncomposites.com). Some rid- out many of the brands at websitesers say carbon chairs are too stiff. like spinlife.com or s­ portaid.com Request that your seating special- Chair mods: many people need toist set up you up in an ultralight; these put a back on their lightweight chairmay be more expensive than some to maximize fit and trunk stability.steel frame chairs, but the medical You can get trick suspension systems.literature also points out that they are The Shockblade from SoCal-basednot only better for long-term arm and Colours Wheelchair (colourswheel-shoulder health, but are also more chair.com) offers a four-wheel sus-cost-effective – they last 13 times lon- pension system; the company claimsger than the so-called depot chairs it helps reduce spasms and fatigue,you see at the airport. and thus may be justified as med- ically necessary. Aftermarket front Unless you have an experienced casters (see froglegsinc.com) alsoadvocate onboard, the choice of smooth the ride and can be very im-chair will come down to the prod- portant to minimize spasms in newuct preferences of the rehab team,www.SCI.first 90 days.com 136

GETTING MOBILEinjuries. These add-ons can also be PUSH TECHNIQUE:medically justified. There are optionsfor strong, lightweight rims (spinergy. Long smooth strokes are bettercom is a good place to start). The than short strokes; your handlighter the rim the easier it is to push should drop below the push rimthe chair, and the easier it is to load at completion of push. Adjust theit in the car. There are many types rear axle as far forward as possibleof tires, with an eye on off-roading, (easier to push), without makingor sports. There are choices for the the chair too tippy. Learn how topush rims, too, taking into account pop and hold a wheelie. This willergonomics with comfort and func- help you across choppy terrain andtion (see out-front.com). over curbs. Special chairs: there are many op- ber of choices, including foam, air ortions, including chairs for racing or gel. Your seating therapist will makesports (topendwheelchair.com), for the recommendation based on yourvery large users (up to 1000 lbs.), for body, level of activity and perhaps agoing to the beach (beachwheelchair. map of your seating pressure points.com), playing golf (solorider.com), ROHO is a popular air cushion forfor riding across streams and down good reason; they work (roho.com).mountains (www.reactiveadapta- Jay (sunrisemedical.com) cushionstions.com), or for crossing mud and are filled with slow-flow gel, whichsand (actiontrackchair.com). molds to the body and offers pro- tection (can be a bit heavy). Aquila Box Wheelchairs: you probably (aquilacorp.com) features a dynamicwon’t get one as a first chair but you system that alternates pressure.might want one; they’re built by handin Southern California ­— comfortable, POWER WHEELCHAIRSdurable and custom fit. Box makeschairs for extreme sports, including Can’t push a manual chair? Get mo-the ones the top rugby and WCMX torized. Power wheelchairs startguys use; boxwheelchairs.com with a base – the motors, batteries, drive wheels, casters and electron-CUSHIONS ics, to which a seating system is at- tached. There are rear-wheel drives,You have to use a cushion on a wheel- front-wheel drives (more maneu-chair to protect the skin, and for a verable than rear-wheel), and mid-firm sitting base. There are a num-www.SCI.first 90 days.com 137

GETTING MOBILEwheel drives (may turn on a dime BATTERIESbut are less robust outdoors). Yourchoice will depend on your specific Battery life is a crucial issue for powerneeds and abilities, and where the chair users. Power chair batterieschair will be used. A model fairly must be of the 24-volt deep-cyclenew to the market called Whill of- variety, discharged over long periods,fers an all wheel drive “personal as opposed to a car battery used forelectric vehicle.” It features a sleek, short bursts of power. There are threenon-medical design (whill.us). types of batteries: old school wet/ lead-acid batteries that may require Several considerations regarding special handling, especially whenpower: the drive control can be oper- you fly; gel batteries, which are moreated using various kinds of joysticks expensive; and absorbent glass mator switches (such as sip-n-puff). (AGM) batteries, best for flying butMany quads rely on recline and/or most expensive.tilt-in-space technologies to relievepressure. Recline flattens the back; POWER-ASSISTStilt moves the seat and back as a unit,reducing stretching of fragile skin. These are add-ons to manual wheel- chairs to provide a burst of power Power wheelchairs can also be fit- when you need it. They are extrated with elevating seats or a mech- practical if you live in a hilly area.anism to stand the user upright. Using a minimal push, a user can goElevating seats can help with trans- faster and up steeper terrain. Plus,fers, as it is easier to transfer from they don’t change the low-profilea higher position. The SCI clinical look of a basic manual chair.practice guidelines (Consortium forSpinal Cord Medicine, pva.org) rec- If you’re a low level quad whoommend that anyone with SCI who won’t consider a full-on power chair,uses a power wheelchair and who power assist may be the ticket. Ifhas good arm function should be pro- you’re a para with weak arms orvided with seat elevation, or at least shoulder issues, this option will re-standing functionality. ally ease the strain and add to your mobility. The power-assists are not Scooters may be an option, espe- cheap and they do add quite a bit ofcially if you don’t need one full-time. weight to the chair – a major consid-Scooters come in three- and four- eration if you plan to transfer fromwheel rigs. wheelchair to car without someonewww.SCI.first 90 days.com 138