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Depression: What You Should KnowA Guide for People with Spinal Cord Injury

CO

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GU

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S P I N A L C O R D M E D I C I N E

Administrative and financial support provided by Paralyzed Veterans of America

Consumer Guide Panel MembersJason Mask, LCSW (Chair)(Social Work)Edward Hines, Jr. VA HospitalHines, Illinois

Kimberly Arlinghaus, MD(Psychiatry)Houston VA Medical CenterHouston, Texas

Helen Bosshart, LCSW(Social Work)Augusta VA Medical CenterAugusta, Georgia

Lester Butt, PhD(Medical Psychology)Craig HospitalEnglewood, Colorado

Thomas Mobley, PharmD(Pharmacology)James A. Haley Veterans HospitalTampa, Florida

Barbara Simmons, MSN, RN(Spinal Cord Injury Nursing)James A. Haley Veterans HospitalTampa, Florida

Consumer Focus Group MembersFred Cowell (Chair)Paralyzed Veterans of AmericaWashington, DC

Frank AndersonPVA Buckeye ChapterEuclid, Ohio

Harlon CauthronPVA Arizona ChapterPhoenix, Arizona

Donald H. GerdomPVA Iowa ChapterDes Moines, Iowa

Ronald T. HoskinsPVA Delaware-Maryland ChapterChristiana, Delaware

Don HyslopPVA Cal-Diego ChapterSan Diego, California

Bruce KentPVA Bayou Gulf States ChapterMetairie, Louisiana

Del McNealPVA Florida Gulf Coast ChapterTampa, Florida

Ken WeasPVA Central Florida ChapterSanford, Florida

Consortium Member OrganizationsAmerican Academy of Orthopedic Surgeons

American Academy of Physical Medicine andRehabilitation

American Association of Neurological Surgeons

American Association of Spinal Cord InjuryNurses

American Association of Spinal Cord InjuryPsychologists and Social Workers

American Congress of Rehabilitation Medicine

American Occupational Therapy Association

American Paraplegia Society

American Physical Therapy Association

American Psychological Association

American Spinal Injury Association

Association of Academic Physiatrists

Association of Rehabilitation Nurses

Congress of Neurological Surgeons

Eastern Paralyzed Veterans Association

Insurance Rehabilitation Study Group

Paralyzed Veterans of America

U.S. Department of Veterans Affairs

Copyright ©1999 Paralyzed Veterans of AmericaThis guide has been prepared based on scientific and professional information found in Depression Following Spinal CordInjury: A Clinical Practice Guideline for Primary Care Physicians. Users of this guide should periodically review thismaterial to ensure that the advice herein is consistent with current reasonable clinical practice.

Some signs of depression are list-ed below. If you have any of thesesigns, don’t wait for a scheduledcheckup. Call your primary carephysician right away. If you knowsomeone with a spinal cord injurywho has any of these signs, encouragethat person to see a primary carephysician and get a referral to a men-tal health professional. Theseinclude psychologists, social work-ers, psychiatrists, psychiatric nursepractitioners, and family therapists.

Some Signs of Depression

Having one or more of these signsdoesn’t necessarily mean that you’redepressed. But they could mean thatsomething is wrong.• You think about killing yourself or have

tried to commit suicide

• You feel sad, or empty, or cry often

• You feel worthless, hopeless, or guiltyoften, or all the time

• You have trouble sleeping or sleepmuch more than you usually do

• You don’t care much about activitiesyou used to enjoy

• You’ve gotten careless about personalhabits like bathing, brushing yourteeth, changing your clothes

• You’re tired a lot or have much lessenergy than you used to

• You have problems concentrating ormaking decisions

• You have much less or much moreappetite than usual (people may havenoticed that you have either gained orlost weight)

• You feel slowed down, heavy, orsluggish

• You have so much nervous energy thatit’s hard to relax or keep still

• You avoid your friends and people youcare about

• You turn to alcohol or drugs whenfeeling angry or sad

• You have less interest in sex than usual

• You feel irritable or get mad more easily

Important: Depression is often related to amedical condition like spinal cordinjury, and it can be treated.Depression can ruin lives. Don’t let itruin your life or the life of someoneyou care about!

A Guide for People with Spinal Cord Injury i

Depression: What You Should KnowA Guide for People with Spinal Cord Injury

*Words in italics are explained in the glossaryon page 15.

Five years ago I had an accident in my all-terrain vehicle (ATV)that left me with a T7 complete spinal cord injury. At first, Iwas optimistic about my future and looked forward to beingable to do the things I loved to do before I was hurt. I gotadaptive equipment so that I was able to go camping, fishing,and kayaking.

After a while, I didn’t feel much like doing anythingor seeing anyone. I kept thinking, “No one reallyunderstands what my life is really like.” My bodyfelt like lead and I often stayed in bed until themiddle of the afternoon.

One day I wheeled out to my garage to get someice cream from the freezer and I happened to glance

up at my kayak hanging from the wall. Cobwebs had taken itover. I felt like someone had knocked me over the head.

Something was definitely wrong, but I didn’t know what itwas or how to fix it. I decided it was time to call my doctor. Ifelt comfortable talking to my primary care physician and told

him about how I just didn’t feel like doing the things that Iused to do.

The doctor was very understanding and told meI was showing signs of being depressed. Hesuggested that I seek some counseling beforehe prescribed any kind of antidepressant. Hegave me the name and number of a mentalhealth professional who accepted myinsurance and told me to call.

I thank goodness every day that I made that call.Counseling has really made a difference in my life.

Being able to talk openly and not feel like I’m being judgedgave me the opportunity to deal with my emotions. Right nowI’m planning a weekend whitewater rafting trip. I’m reallylooking forward to life again.

Being ableto talk openlyabout my emotions

helped me dealwith them.

CliffCliff

A Guide for People with Spinal Cord Injury iii

Contents

Who Should Read This Guide ........................................................................1

Why Is This Guide Important ........................................................................2

What Is Depression ........................................................................................2

What Causes Depression................................................................................3

Table 1. Checklist: Some Signs of Depression ............................................4

What Are Some Signs of Depression ..............................................................6

Why Do Feelings Matter ................................................................................6

Where Can I Get Help ....................................................................................7

How Is Depression Treated ............................................................................7

Suicide: Untreated Depression Can Kill..........................................................8

What Is Psychotherapy ..................................................................................9

What Is Psychopharmacology ......................................................................10

Are Side Effects a Problem ..........................................................................11

What Are Alternative Medications ................................................................12

Will My Insurance Cover Treatment ............................................................12

Get Involved ................................................................................................13

You’re Not Alone ..........................................................................................13

Help Is Available ..........................................................................................14

Glossary ......................................................................................................15

Appendix A. Resources for People with SCI ................................................16

Medical History............................................................................................17

Acknowledgements ......................................................................................19

Three years ago I had a spinal cord injury at C6. They sentme home from the hospital too fast. I wasn’t given

enough time to accept what had happened to mybody or how my new injury would affect my life. At

24 years old I was devastated!

At a time when I thought I’d be out on my own andindependent, I was back living with my parents. My

mother was doing all my attendant care. Thiscaused many conflicting emotions in ourrelationship.

I was feeling very depressed and down. I didn’t want toget up in the mornings. It seemed pointless for my mother tobother getting me dressed. I was over-eating and this causedproblems with my bowel routine. I was in a deep, dark,downward emotional spiral. I began thinking about endingmy misery.

In desperation, I shared my thoughts and feelingswith my home health nurse. She understood thehopelessness I felt. She had seen my symptomsof depression before in people with spinal cordinjury and she knew to refer me to my primarycare physician.

My doctor told me that I had a majordepression and that I should talk to a mentalhealth professional about my hopelessfeelings. She immediately started me on anantidepressant medication and referred meto a psychiatrist.

I started seeing a psychiatrist weekly. Talkingabout my problems has helped me and my family

cope with my disability. I am now planning for myfuture with a positive outlook on life.

I was feeling very depressedand down. Ishared my

thoughts withsomeone whounderstood thehopelessness

I felt.

BridgetBridget

A Guide for People with Spinal Cord Injury 1

Who Should Read This Guide

• People with spinal cord injury (SCI)

• Family, friends, personal care attendants, and other caregivers

• Health-care professionals, especially primary care physiciansand mental health professionals who treat people with SCI

• Health-care educators

Mood disorders like depression are common among peoplewho have chronic health conditions. That includes SCI. After anSCI, a person experiences major life changes. Adjusting tothose changes can take time and oftenrequires help. However, depression canstrike at any time in life—whether theperson is able-bodied or disabled.

For people with SCI, depression cancontribute to:

• Pressure ulcers

• Urinary tract infections

• How easily they get sick

• Chronic pain

• Longer or more frequent hospital stays

• Problems with personal relationships

• Problems with caregivers

• Substance abuse

• Higher medical expenses

People with SCI also have a higherrisk of suicide as a result of depression.(See Suicide: Untreated DepressionCan Kill on page 8.)

Special Note ForFamily, Friends, andCaregivers Depressive changes in behavior andmood can be gradual. Sometimes it’seasier for others to see such changesfirst. If you care for a person with SCI,learn about the signs of depression (seetable 1 on pages 4-5). If you see any ofthose signs:

• express your concern, and

• encourage the person to see a primary care physician or mentalhealth specialist right away.

It’s a good idea to watch for signs ofdepression in yourself, too. Although youcan’t “catch” depression from someoneelse, it can be depressing to be around adepressed person. If you’re feeling downor blue or helpless about helping some-one you care about, talk with someoneyou trust: a counselor, your primary carephysician, a friend. (See How Is Depres-sion Treated on page 7.)

“It’s all in your head.”

“You’re just feeling sorry for yourself.”

“People who talk about committingsuicide never really do it.”

“There’s nothing you can do.”

“Once you’re depressed, you’realways depressed.”

2 DEPRESSION: What You Should Know

Why Is This Guide ImportantDepression can ruin lives. But it doesn’t have to. People with

SCI are at special risk for depression and its effects, some ofwhich are listed on page 1.

There are three things that everyone should know aboutdepression:

1. It’s a common condition. Depression affects 7 percent to 12 percent of all men and 20 percent to 25 percent of all womenat least once in a lifetime—not just people with SCI.

2. It’s a serious problem. If you’re depressed, it can affect yourphysical and mental health, your quality of life, and the well-being of people around you.

3. IT CAN BE TREATED effectively. The vast majority of peoplewho are treated for depression have good results.

Depression can affect every part of a person’s life. It can alsoaffect the lives of those around a depressed person. It’s hard tobe with someone who’s always down or blue. Proper treatmentcan benefit everyone. It can improve or overcome the depres-sion. Treatment helps the person feel better and function better.That, in turn, helps family, friends, and co-workers.

Too many people have wrong ideas or impressions aboutdepression. That misinformation causes needless misery by pre-venting people with depression from getting help.

What Is DepressionDepression is a condition in which a person feels sad, hope-

less, or powerless. It can be brief or long term. And it can rangefrom a mild sense of feeling blue to more severe forms in which

Myths About Depression

Wrong! Depression is a real illnesswith real symptoms that can cause very realproblems—in your health, at home, and atwork. Because depression relates to mentalhealth, many people are ashamed to dis-cuss it. Even well-meaning family andfriends may tell you to get a grip, pull your-self together, tough it out, or learn to livewith it.

For all these reasons, many depressedpeople don’t know they can be helped. Orthey think they shouldn’t need help.

We can all do our part to dispel thesemyths about depression. We can learn torecognize the signs of depression. We canseek help if we’re depressed. And we canencourage loved ones to get the help thatcan improve—even save—their lives.


it completely disrupts a person’s life. Depression can feel like acloud that darkens everything and takes the joy out of life. For-tunately, in most cases it can be improved or cured.

What Causes DepressionMany things can cause or contribute to depression. These

include the effects of SCI, life events, personal circumstances,other medical conditions, some medications, alcohol, and drugs.

• Effects of SCI. Fatigue, loss of appetite, loss of energy, sleepproblems, chronic pain, pressure ulcers, other secondaryconditions of SCI, grief or blame related to the injury, loss of self-esteem, changes in body image, change from independence todepending on others for care, loss of hobbies.

• Life events. Divorce; loss of a loved one, a job, a home;retirement.

• Personal circumstances. Financial problems, inability to work,wheelchair access problems at home or at work, transportationproblems, lack of support from family or friends, loneliness andisolation, personal (or family) history of depression or bipolardisorder.

• Other medical conditions. A chemical imbalance in the brain,which may be caused by heart conditions or stroke, migraines,mild brain injury, renal dialysis. These are only some of themedical conditions that can be related to depression.

• Medications. Many medications that people with SCI take forother conditions, such as spasticity or pain, can affect theirmoods. If you’re taking any medications—nonperscription orprescription—make sure your primary care physician knowswhat they are, how much you take, and when.


Chec

k al

l that

apply.

I’ve thought about kill

ing m

yself.

I w

orr

y a

bout bein

g a

ble

to c

ontr

ol m

y thoughts

about suic

ide.

I’ve tried to c

om

mit

suic

ide.

I’m u

nable

to c

ope w

ith d

aily

activ

ities.

I fe

el m

ore

tired than I u

sed to.

I seld

om

leave the h

ouse.

I fe

el e

specia

lly tired in

the m

orn

ing, after

I w

ake u

p.

I fe

el l

ike a

burd

en o

n m

y fam

ily.

Bein

g d

ependent on o

thers

for

my c

are

makes m

e feel s

ad,

em

pty

, and w

ort

hle

ss.

I have tro

uble

falli

ng a

sle

ep a

t nig

ht (in

som

nia)

.

I often w

ake u

p e

arly in

the m

orn

ing.

I’m e

atin

g m

ore

than I u

sed to.

I’ve g

ain

ed w

eig

ht re

cently

: about _______pounds.

I’m n

ot hungry

very

often a

nym

ore

.

I’ve lo

st w

eig

ht re

cently

: about _______pounds.

I’ve lo

st w

eig

ht re

cently

, even though I’m

hungry

and e

at as

much a

s I u

sed to.

I don’t

care

much a

bout th

ings I u

sed to e

njo

y, li

ke h

obbie

s.

I’ve g

otten c

are

less a

bout pers

onal h

abits

, lik

e:

takin

g a

bath

or

show

er

usin

g d

eodora

nt

bru

shin

g m

y teeth

changin

g m

y c

loth

es

I ju

st don’t

feel m

otiv

ate

d to d

o m

uch.

ooooo

mmmmooooooooooooooTABLE 1.

Checklist: Some Signs of Depression

Use this

checklis

t to

help

identif

y if

you h

ave a

ny s

igns o

f depre

ssio

n. T

ake this

with

you w

hen y

ou v

isit

your

health

-care

pro

vid

er.

I have o

ther

medic

al p

roble

ms n

ow

or

have h

ad them

befo

re

(such a

s h

eart

dis

ease, epile

psy,

fib

rom

yalg

ia, cancer)

. T

hose

pro

ble

ms in

clu

de:

________________________________________________

________________________________________________

________________________________________________

________________________________________________

I’m

ta

kin

g n

on

pe

rscri

ptio

n (

ove

r-th

e-c

ou

nte

r) m

ed

icin

e

no

w.

He

re’s

wh

at

I ta

ke

:

Drug Name

How Much

How

Often

________________________________________________

________________________________________________

I’m takin

g p

rescriptio

n m

edic

ine n

ow

. H

ere

’s w

hat I ta

ke:

Drug Name

How Much

How

Often

________________________________________________

________________________________________________

________________________________________________

I’m h

avin

g p

roble

ms in

my m

arr

iage. M

y e

xam

ple

s:

________________________________________________

________________________________________________

I’m h

avin

g p

roble

ms in

my fam

ily. M

y e

xam

ple

s:

________________________________________________

________________________________________________

ooooo

A Guide for People with Spinal Cord Injury 5________________________________________________

I’m h

avin

g p

roble

ms a

t w

ork

. M

y e

xam

ple

s:

________________________________________________

________________________________________________

________________________________________________

I’m h

avin

g p

roble

ms w

ith m

y p

ers

onal c

are

attendant. M

y

exam

ple

s:

________________________________________________

________________________________________________

________________________________________________

I’ve h

ad s

om

e terr

ible

thin

gs h

appen the p

ast fe

w m

onth

s (

such

as d

ivorc

e, death

of lo

ved o

ne, lo

ss o

f jo

b).

My e

xam

ple

s:

________________________________________________

________________________________________________

________________________________________________

I drink, but I don’t

thin

k I h

ave a

pro

ble

m w

ith a

lcohol.

I drink:

What K

ind H

ow

Much H

ow

Often

________________________________________________

________________________________________________

________________________________________________

I re

cogniz

e that I have a

pro

ble

m w

ith a

lcohol.

I use d

rugs:

What D

rug H

ow

Much H

ow

Often

________________________________________________

________________________________________________

________________________________________________

o o oooo

I have tro

uble

concentr

atin

g a

nd m

akin

g d

ecis

ions:

som

etim

es

all

the tim

e

I fe

el l

ike m

y b

ody is

made o

f le

ad; lif

e s

eem

s to b

e in

slo

w

motio

n.

I fe

el r

estle

ss; I have s

o m

uch e

nerg

y that it’

s h

ard

to r

ela

x.

I fe

el h

elp

less; I can’t

seem

to g

et used to b

ein

g in

a w

heel-

chair.

I fe

el a

ngry

a lo

t.

I fe

el w

ort

hle

ss a

lot.

I’m h

ard

on m

yself.

I fe

el h

opele

ss; it

seem

s a

s if

thin

gs w

on’t

ever

get better.

I liv

e a

lone.

I don’t

have m

any friends.

I don’t

have a

ny fam

ily m

em

bers

nearb

y.

I w

orr

y a

lot about m

oney.

I’ve h

ad a

mood p

roble

m b

efo

re:

depre

ssio

n

bip

ola

r dis

ord

er

(man

ic d

epre

ssio

n)oth

er

______________________________________

Mood d

isord

ers

seem

to r

un in

my fam

ily. T

hese a

re m

y r

ela

-

tives w

ho’v

e h

ad a

mood p

roble

m a

nd the p

roble

m they h

ad:

Relation

Problem

exam

ple:

fath

erU

ncon

trolle

d cr

ying

________________________________________________

________________________________________________

________________________________________________

________________________________________________

ommm

oooooooooooomm

o


More complete lists of medical conditions and medicationsthat can have a role in depression appear in Depression Fol-lowing Spinal Cord Injury: A Clinical Practice Guidelinefor Primary Care Physicians. The guideline is available freefrom PVA (phone: (888) 860-7244, website: www.pva.org). Youmay want to give a copy of the guideline to your primary carephysician.

What Are Some Signs of DepressionTable 1 on pages 4 and 5 lists many signs of depression.

Having any of these signs doesn’t necessarily mean thatyou’re depressed. But you should discuss the signs with yourprimary care physician and/or mental health professional any-way. They’re good indicators that something may be wrong.And if something is wrong, you should find out so that it canbe treated.

Bring the checklist with you when you see your primarycare physician or any mental health professional. You can makecopies to take with you.

Why Do Feelings MatterThere’s no one “right” emotion for every person in every sit-

uation, whether it’s the shock of SCI or the loss of a loved one.In fact, there’s no such thing as a right or wrong way to feel.

But feelings have a lot to do with mind and body health.Your mind and body are all connected. Studies show thatdepression can play a big role in many health ailments. Similar-ly, feeling upbeat about life can improve your health.

Depression changes the way people feel about themselvesand their lives. When you’re depressed, it can seem as if every-thing is wrong and you can’t fix it. It’s important to pay atten-tion to your feelings. Feelings are signs that something in yourlife needs to be understood, addressed, and potentially changed.That means:

1. recognizing what you’re feeling

2. understanding why you feel that way

3. trying not to be too hard on yourself for feeling down

4. taking steps to address the source of your feeling


Talk to people you trust: family, friends, counselors, health-care professionals. Don’t wait for people to call you; reach outto them. Even a friendly word with a neighbor can brightenyour day. The more involved you become in fulfilling activities,the less you’ll focus on the problems in your life. And remem-ber: Help IS available.

Where Can I Get HelpA good place to start is with your primary care physician.

He or she can help you figure out if your problems are relatedto depression. (Be sure to fill in Table 1 on pages 4 and 5 andbring it with you to the doctor’s office.) Your primary carephysician can also refer you to someone who specializes intreating depression.

If you don’t have a primary care physician, talk to staff atyour rehab center. They can help you with treatment or find aspecialist in your area. Or see if the phone book lists a mentalhealth center in your community. Other places to get helpinclude the clergy, PVA, and national hotlines such as theNational Spinal Cord Injury Hotline at (800) 962-9629.

How Is Depression TreatedThere are two basic types of professional help for depres-

sion. Psychotherapy is the treatment of mental and emotionalconditions using talk therapy and counseling, without the use ofmedications. Psychopharmacology is the use of medications totreat these conditions. These two types of treatment may beused alone or together.

There’s no one standard treatment for depression. Treat-ment is based on each person’s needs. Your treatment will takeinto account many things. They include what may be causingyour depression, your personal situation, and aspects of yourpersonality, such as how you cope with problems. Your doctorwill then suggest one or more forms of appropriate counseling.

One form is individual counseling, which is just you and amental health professional. Other forms of counseling involveother people. For example, family problems can cause depres-sion, and depression can create family problems. When thathappens, marriage or family counseling may be suggested. If

Untreated Depression Can KillPeople with SCI are at much higher risk for suicide. The

risk is highest in the first five years after the injury.

Depression is the biggest risk factor for suicide. Other risk

factors include:

• Dependence on alcohol or drugs

• Lack of a spouse or close social network for support

• A previous suicide attempt. People who’ve tried to killthemselves before are likely to try again.

The most important factors in preventing suicide are spot-

ting depression early and getting the right treatment for it.

If you’re thinking about suicide, get help! Remember

that depression casts a shadow over everything. Your whole

world will look different when your depression is treated and

your spirits improve.

And if you think your family will be better off without you,

you’re wrong. Suicide puts a huge burden of guilt and grief on

loved ones. They never get over it. Ask anyone who has lost a

loved one to suicide. If you’re angry with someone and are

thinking of suicide as a way to get back at them, think

again! There are better ways of expressing your anger and

resentment.

If you or someone you know is suicidal, seek help right

away. Help is available through:

• 911 for emergency assistance

• Suicide hotlines

• Community mental health centers

• Mental health professionals

• Primary care physicians

You may have heard that people who talk about killing

themselves won’t try to do it. That’s not true! Many of them do

try—and succeed.

Suicide…Suicide…


you’re feeling that no one understands what you’re goingthrough, group therapy involving other people with SCI may behelpful.

What Is Psychotherapy

This approach is often called “talk therapy.” Sometimes justtalking about whatever is disturbing you can help. Many typesof professionals are trained to listen and guide you in sortingout your problems. These include psychologists, social workers,psychiatrists, psychiatric nurse practitioners, family therapists,and pastoral counselors. How they work with you depends onyour needs. They may see you alone, with your spouse or otherfamily members, or in a group of people facing similar issues.There are several forms of psychotherapy. No matter what formyou and your therapist choose, it’s essential for you to trust andbe open with the person you’re working with.

Important: For the best total care, keep your primary care physicianinformed about other health-care professionals that you see.That includes mental health professionals. And make sure yourprimary care physician knows about any medications you’retaking to help your depression.

What Is Psychopharmacology

Your primary care physician may suggest antidepressantmedication to improve your mood and outlook on life. This iscalled “psychopharmacology.” Only a medical doctor—some-one with an MD degree, not a PhD—can prescribe medica-tions. Your primary care physician may prescribe a medicationor may refer you to a specialist for a prescription. In eithercase, the doctor will work with you to find an antidepressantthat helps.

It’s important to understand several things about antide-pressants:

• Different types of antidepressants work differently in the body.Not every medicine works for every person. You may need to trymore than one before you find one that works well for you.

• Antidepressants often need time before they take full effect. Thismay be as long as 4 to 6 weeks. People sometimes stop taking amedication before it has a chance to help because they don’tthink the medication is working.

• Antidepressant doses often need to be adjusted over time. Youmay require blood tests or other tests regularly. These tests helpyour doctor check medication levels for safety and effectiveness.

• Some antidepressants have common side effects. You may not beone of the people who has those side effects. But if you are, tellyour doctor promptly. There are usually easy ways to manageside effects. Or your doctor may decide that it’s better for you totry another medication.

• Some antidepressants may react with other medications youare taking. Be sure to tell your doctor about all medications


Alcohol can cause depression or makeit worse. So can sedatives, drugs that aidsleep, and narcotics or street drugs.

Some people turn to alcohol or drugsto feel better when they’re depressed.This is called self-medication. It can leadto dependence or addiction. And likedepression, it can ruin lives. If you’re feel-

ing down about something specific orabout life in general, talk to someone: aclose friend who can be objective, yourprimary care physician, a member of theclergy, a counselor or therapist. It’s easierand safer than taking drugs or alcohol tosolve the problem.

Alcohol and Drugs: What You Need to Know


you are taking, including over-the-counter medications andherbal remedies.

Your doctor will discuss medication options with you. Askyour doctor the following questions to make sure you under-stand everything you need to know about your new medicine:

1.What medication do you recommend?

2.Why do you suggest it for me?

3.When should I expect to notice that it’s working?

4.What are the possible side effects?

5.What signs of those side effects should I watch for?

6.What should I do if I have any of those signs?

Are Side Effects a ProblemSeveral types of medications are used to treat depression.

People with SCI are at special risk for some side effects includ-ing weight gain or weight loss, urine retention, and constipation.

Important: If you want to stop taking or change your medication, talk withthe doctor who prescribed it first. No matter what, don’t juststop taking an antidepressant! That can cause medical prob-lems. To protect your health, you may need to reduce the dosebit by bit before you stop completely.

Alcohol and drugs can make it hardfor a doctor to find outwhether you have depres-sion and if so, how best totreat it. If you use alcohol ordrugs, tell your primary

care physician and/ormental health profes-

sional. That information will help themknow how best to help you.


Side effects can be managed safely. You can help by makingsure your doctor knows about them. Before you take any med-ication for depression, suggest that the doctor refer to Depres-sion Following Spinal Cord Injury: A Clinical PracticeGuideline for Primary Care Physicians, available free fromPVA (www.pva.org or (888) 860-7244).

What Are Alternative MedicationsAlternative medications are drugs that aren’t regulated by

the U.S. Food and Drug Administration. That means they haven’tundergone testing to make sure they’re safe and effective.

St. John’s wort is just one of several alternative medicationsthat’s claimed to be helpful for depression. Because these prod-ucts are unregulated, the public doesn’t have information aboutproper doses and side effects.

Before you try an alternative medication, for depres-sion or any other condition, talk with your primary carephysician. If you’re already taking any of these products, makesure all your doctors know.

Will My Insurance Cover TreatmentMedical insurance companies differ a lot in their coverage of

treatment for depression. Some companies cover only visits tomental health professionals in their official “network.” (You canget a list of providers in the network from your insurance com-pany.) Some limit the number of visits they will cover. EvenMedicaid and Medicare rules differ by state. That’s why it’s agood idea to find out about your insurance company’s rulesbefore you begin seeing a mental health professional regularly.

Sometimes insurance companies pay for treatment outsidetheir network. Your primary care physician, rehab center staff,or family members can be advocates with your insurance com-

Important: A serious side effect is autonomic dysreflexia. It is a medicalemergency. Everyone who has SCI needs to know the warningsigns of autonomic dysreflexia and what to do about them. Fora free copy of Autonomic Dysreflexia: What You ShouldKnow, visit the PVA website at www.pva.org.


pany. They may be able to get approval for you to see a mentalhealth professional outside the network who has expertise intreating people with SCI. It’s worth a try. (Be sure to get pre-approval in writing.)

Get InvolvedDo you live alone? Have you lost touch with friends and

family? Have you stopped working? Have you stopped partici-pating in sports, hobbies, or social outings? If the answer to anyof these questions is yes, you’re putting your health at risk.Loneliness and isolation are common signs of depression.They’re also possible causes of depression.

What can you do? You don’t need to rush out and get mar-ried or find a roommate. But you should think of ways to haverewarding contact with other people. You can do that throughwork, neighborhood groups, sports, and other recreational andsocial activities. Whether they’re able-bodied or in a wheelchair,people who are doing something worthwhile are less likely tofeel depressed and more likely to be satisfied with their lives.

Volunteering is another option. By volunteering your timeand talents, you can make a difference in your community andmeet people who share your interests. Churches, hospitals, vet-erans groups, civic clubs, and other nonprofit organizationsoften look for volunteers. It doesn’t matter what you choose.What matters is that you’re connecting with people and beingproductive.

You’re Not AloneSpinal cord injury is traumatic. It’s not unusual for people to

have strong feelings after a life-changing event like SCI. Grief,anger, frustration, depression, even despair—these are all natur-al reactions. It’s important to remember—you’re not alone.

Important: If you need help for depression, you can get it—even if youdon’t have insurance or your insurance doesn’t cover the treat-ment suggested by your primary care physician or mental healthprovider. Contact your local community mental health center.


There are groups around the country that can put you intouch with other people who have SCI. A good place to start isyour rehab center. Many rehab centers offer SCI support groupsor may be able to direct you to support groups or organizationsin your local community. Swapping stories and trading tips is agreat way to make friends and see things in a new light.

Sometimes solving other problems in your life relating toyour disability can ease depression. Appendix A on page 16 listssources of information and aid for people with SCI.

Another great resource is the Internet. Whatever you’reinterested in, the Internet can connect you with all kinds of peo-ple who share the same hobbies and interests. If you want tolearn more about the Internet and e-mail, call or visit your locallibrary. Computer access and assistance are available for peoplewith disabilities at public libraries.

Help Is AvailableIt’s OK to ask for help with depression. In fact, it’s the smart

thing to do. Depression is a medical condition, and it canbe treated. When you have other medical problems, you call adoctor. Accepting help for depression is no different from see-ing an optometrist for your eyes or a dentist for your teeth—orrehab center staff for the physical adjustment to SCI. Gettinghelp is part of taking charge of your life.

Help IS available. No matter how small your community,some people and agencies are available to help you with issuesrelated to SCI and depression.

When you find a treatment that works well for you, you’llfeel the difference. It’s unmistakable. Favorite things will giveyou pleasure again. The world will seem like a friendlier place.And people around you will notice the change. In obvious andsubtle ways, the quality of your life will improve.

Important: It may be hard to believe now, but when you feel better, yourlife will be better. So if you think you may be depressed, gethelp! You have nothing to lose, and everything to gain.


alternative medications—Products thatare not regulated by the U.S. Food andDrug Administration and are used withoutprescriptions to treat some medical condi-tions. These products have not undergonethe thorough testing for safety and effec-tiveness required for regulated medications.Consumers may not have information aboutproper doses and side effects.

antidepressant—A medication prescribedto improve a person’s mood and outlook onlife.

autonomic dysreflexia—An abnormaland dangerous response to pain or otherstimuli below the spinal cord injury, usually(but not always) one at or above the 6ththoracic vertebra (T6). The body, unableto react normally to the stimulus, respondswith increasing blood pressure, which canreach dangerously high levels, causingstroke or even death.

bipolar disorder—A type of depressioncharacterized by wide mood swings fromelevated or agitated to deeply depressedwith feelings of worthlessness (formerlycalled manic depression).

depression—A condition in which a per-son feels sad, hopeless, or powerless. It canbe brief or long term, and can range from amild sense of feeling blue to more severeforms in which it disrupts a person’s life.

family therapist—A mental health profes-sional trained to help with family problems.

health-care professional—An individualwho provides medical care, including doc-tors, physicians assistants, nurses, nursingassistants, therapists, and social workers.

insomnia—Trouble falling asleep and/orstaying asleep.

manic depression—See bipolar disorder

mental health professionals—Special-ists trained to help with mental health prob-lems. They include medical doctors, such aspsychiatrists, and other medical profession-als, such as psychologists, social workers,and psychiatric nurse practitioners.

pastoral counselor—A minister, priest,rabbi, or other religious affiliated personwith training and experience in mentalhealth counseling.

primary care physician—A licensedmedical doctor, usually a family physicianor internist, who provides and coordinatescare for patients’ medical needs, includingreferral to specialists.

psychiatric nurse practitioner—A regis-tered nurse with advanced practice trainingin evaluating and treating mental and emo-tional disorders.

psychiatrist—A licensed medical doctorwho is trained to deal with mental illness.

psychologist—A person who is trained toevaluate and provide therapy for mental,emotional, and behavioral conditions.

psychopharmacology—The use of med-ications to treat mental and emotionalconditions.

psychotherapy—The treatment of mentaland emotional conditions using talk therapyand counseling.

self-medication—Use of alcohol, drugs, oralternative medications to try to make bador unpleasant feelings go away.

social worker—A social services profes-sional usually with graduate training andcertified as a licensed clinical social worker.

Glossary


Housing*Assisted living; personal care homes;return to own home; independent livingcenters; state veterans homes; nursinghome placement; housing authority forsubsidized housing and rental aidprograms; local realtor; U.S. Departmentof Housing and Urban Development

Transportation*Local public transit authority; area agencyon aging; state division of rehabilitationservices; Medicaid taxi services; VA**;independent living centers; places ofworship (churches, synagogues, mosques);rental van services

Personal care assistance*Home health agencies; independent livingcenters; family members; training ofpeople who can hire and manage their ownemployees; Medicaid waiver programs;state funding options; VA

Home access*Independent living centers; civic groups;houses of worship; state departmentrehabilitation services; VA; workers’compensation

Jobs, vocational help*State employment agency; independentliving centers; state division ofrehabilitation services; VA

Leisure, sports, and recreation*Independent living centers; PVA**;National Spinal Cord Injury Association;houses of worship; YMCA/YWCA; localfitness centers; county parks and

recreation service; Chamber of Commerce;state sports associations; senior citizencenters

Peer support*Independent living centers; localrehabilitation hospitals; PVA; NationalSpinal Cord Injury Association; local SCIor PVA chapters; disability-specificsupport groups

Family support*Independent living centers; localrehabilitation hospitals; mental healthcenter or professional; local SCI or PVAchapters; disability-specific support groups

Finances*Supplement Security Income (SSI); SocialSecurity Disability Income (SSDI); VA forveterans who served in wartime or areconnected to a branch of military service;workers’ compensation; food stamps; Aid toFamilies with Dependent Children (AFDC);state department of rehabilitation services

Adaptive equipment*VA; independent living centers; PVA;National Spinal Cord Injury Association;Medicare; private insurance

Caregiver burnout*VA for respite for veterans; respite carethrough local hospitals and nursing homes;homemaker services through VA or statefunding; local support groups; mentalhealth center or professional

APPENDIX A

Resources for People with SCI

*Look in your local phone book to find federal, state, county, and local government agencies. Forinformation on local resources, call the National SCI Hotline at (800) 962-9629; the National Coun-cil on Independent Living at (703) 525-3406; or check the Internet http://www.spinalcord.uab.edu.

**VA = Department of Veterans Affairs; PVA = Paralyzed Veterans of America. References to VA areappropriate for veterans only.


Medical HistoryComplete the following. Share this information with your family and caregivers, aswell as your health-care professionals.

Name: ________________________________________________________________________________

Date of birth: ______/_______/_______ Sex: M or F

Date of spinal cord injury: ______/_______/_______

Level of injury: Complete_________________ Incomplete_______________

Primary health-care professional: ________________________________________________________

Phone number: ________________________________________________________________________

Allergies, including medications: ________________________________________________________

______________________________________________________________________________________

MEDICATIONS

List medications taken regularly (prescription and over-the-counter):

1. ____________________________________________ 4. ____________________________________

2. ____________________________________________ 5. ____________________________________

3. ____________________________________________ 6. ____________________________________

List medications taken as needed (prescription and over-the-counter):

1. ____________________________________________ 4. ____________________________________

2. ____________________________________________ 5. ____________________________________

3. ____________________________________________ 6. ____________________________________

Have you ever taken a medication for depression? Yes No

If yes, what drug?______________________________________________ When?_________________

EMERGENCY INFORMATION

In case of emergency, call: ______________________________________________________________

Relationship: ____________________________ Phone number: ( ) ______________________

INSURANCE INFORMATION

Name of insurance company: ____________________________________________________________

Identification number: __________________________________________________________________

Group number: __________________________ Phone number: ( ) ______________________

oo

My husband, Douglas, received a T5 spinal cord injuryin Vietnam. I met him while he was in rehab at theVA SCI center where I was a nurse. When facedwith serious problems, he always looked forsolutions. Instead of, “Why did this happen to

me?” he would ask, “What can I do about this?”

After Douglas was released from the hospital andgot a job, we were married. Things went great forseveral years. Then we hit a bad patch. Hebecame increasingly irritable and moody.Activities that he used to enjoy, like our mixed-doubles bowling league, became “too muchtrouble.”

He started to drink heavily several nights a week. He’d ratherstay home and drink by himself than go out with friends. Hehad frequent bowel accidents and stopped being carefulabout hygiene and skin care. This put him at serious risk forpressure ulcers.

One day when he was in a calm mood, I sat downwith him and told him he needed to see a doctorabout the changes in his personality. At first hedenied any change. But when I mentionedspecific behavior changes–quitting bowling,not doing his skin care—he said I might havea point. He agreed to schedule anappointment at the local VA SCI center.

Douglas came out of that appointment withsome changes to his bowel routine and a

prescription for antidepressant medication. Thebowel problems cleared up. He regained his interest

in life. Within a few weeks, it felt like I had myhusband back again.

DouglasDouglas

We talked about it

when we wereboth calm

and he agreed he needed

help.


The Consortium for Spinal Cord Medi-cine Clinical Practice Guidelines is com-posed of 18 organizations interested in thecare and treatment of people with spinalcord injury. The Consortium SteeringCommittee established a guideline develop-ment panel to make recommendations onthe management and rehabilitation of indi-viduals dealing with depression followingan SCI. The recommendations within thisconsumer guide are based on scientificresearch compiled from 1966 to 1998 andused in the Consortium’s clinical practiceguideline (CPG) Depression FollowingSpinal Cord Injury: A Clinical PracticeGuideline for Primary Care Physicians.The Paralyzed Veterans of America provid-ed financial support and administrativeresources for all aspects of guideline andconsumer guide development.

The consumer guide panel was chairedby Jason Mask, LCSW, and consisted of fivemembers with experience in the manage-ment and treatment of depression in indi-viduals with SCI. Meeting life’s demands inspite of a spinal cord injury requires muchadaptation. For many with SCI, depressionis a major life-limiting problem. Creationof a consumer guide that addresses theproblems required a diverse, experienced,and sensitive panel. The Consortiumwould like to thank all members of the con-sumer guide panel for providing the essen-tial ingredients of knowledge, experience,empathy, and practicality.

The Consortium is also appreciative ofthe outstanding work of the entire PVApublications staff. In particular, the Con-sortium would like to recognize the Con-sortium coordinator J. Paul Thomas; theconsumer guide writer, Barbara Shapiro;the graphic designer, Sarah Ornstein; thePVA senior editor, Patricia E. Scully; and

the PVA project administrator, Dawn M.Sexton.

In the end, those who are continuallyliving with and learning about their injuryare the best evaluators of a teaching toolsuch as this consumer guide. The Consor-tium would like to thank the consumerfocus group for their critical review of andcomments on the manuscript. Chaired byPVA’s Fred Cowell, the focus group includ-ed Frank Anderson, Buckeye PVA; HarlonCauthron, Arizona PVA; Donald H. Ger-dom, Iowa PVA; Ronald T. Hoskins,Delaware-Maryland PVA; Don Hyslop, Cal-Diego PVA; Bruce Kent, Bayou Gulf StatesPVA; Del McNeal, Florida Gulf Coast PVA;and Ken Weas, Central Florida PVA. Theirvaried life experiences with SCI providedwise perspectives that refined andimproved this consumer guide.

Finally, it is essential to recognize theinvestigators who are studying the effectsof depression and SCI. Research is thesource of solutions; there is still much tobe done in the future.

The Consortium will continue to devel-op clinical practice guidelines and con-sumer guides on topics in spinal cordinjury care. Look for consumer guides onother topics relating to spinal cord injury.All professional guidelines and consumerguides developed by the Consortium canbe found by visiting the PVA website atwww.pva.org.

Acknowledgments

Administrative and financial support provided by

PARALYZED VETERANS OF AMERICA801 Eighteenth Street, NWWashington, DC 20006-3517(800) 424-8200 • (800) 795-3427 tty • www.pva.org

(888) 860-7244 (toll-free distribution center)

September 1999

on depression: i s what you e r e should know€¦ · ers, psychiatrists, psychiatric nurse...

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