Focus on Employment (MS Society) - nationalmssociety.org · sure the blood is circulating so I know that when I ... ways to keep pace. When my boss asked why I suddenly ... about

Reprinted from InsideMS � February-March 2006, updated August 2007

A S p e c i a l R e p r i n t

2 MS on the Job

by Kenneth Bandler

5 The ADA and Employment

by Joanne Dickson

10 On the Job with Fatigue

and Cognitive Issues

by Jo Stratmoen

16 Can a Phone Line Make

Your Career?

by Chris Lombardi

21 Do you Have a Plan B

for Employment?

by Beverly Noyes, PhD,LPC, director of Programsand Staff Development

(Illustrations by William Stantonand Travis Stanton.)

FOCUS ON EMPLOYMENT

How to stay

in the game

InsideMSTHE MAGAZINE FOR MEMBERS OF THE NATIONAL MS SOCIETY

2 Reprinted from InsideMS � February-March 2006

The numbness always is there, in my feet andhands. Often I wiggle my fingers and toes to makesure the blood is circulating so I know that when Iget up, I will be able to walk, or when I take a penor open a laptop, I will be ready to write or type.

I’m in the middle of a business meeting. Sud-denly, the numbness spreads, up the legs, through the arms,quickly enveloping my face. No one in the room knows what ishappening just below my skin. If I am fortunate to keep a pokerface and not slur any words, my secret will continue to be safe.No one can tell that a surge in my MS symptoms is underway.

B Y K E N N E T H B A N D L E R

MS on the Job

Employment

Updated August 2007 3

Uncertainty unlimitedHow long this numbness will persistalso is impossible to predict. Will it bean hour this time, or the rest of the day?Does it signal the beginning of a realexacerbation, continuing for severaldays, or maybe a week or longer? It isonly 10:00 a.m., and I need to be cre-ative and responsive.

The majority of people with MS donot exhibit distinct signs of the disease.“You look much better than you should,”my neurologist declared when he con-firmed in May 2003 that the long dor-mant disease had advanced.

How to manage fatigue—an MSsymptom as unpredictable as exacer-bations—and stress—a factor thatcan impact adversely on MS—arecontinual, emotionally draining chal-lenges, especially when one is deter-mined to sustain secrecy while striv-ing to perform well at work andmaintain an active family life.

Do I tell or not? Only a few in my family knew about myMS. I was hesitant, fearing the reactionsof colleagues and friends. Besides, Ibelieved my condition would change forthe better, so why go public?

That illusion evaporated when mydoctor reminded me that currently thereis no cure for MS, that the interferon Iself-inject is used to contain its progres-sion. How I feel today would likely con-tinue indefinitely.

I continued to work hard as the pub-lic relations director for a national advo-cacy organization—not a stress-free job.

All would be fine as long as I foundways to keep pace.

When my boss asked why I suddenlywas seeing doctors so regularly, I toldhim there was nothing to worry about,that whatever I have is not life threat-ening, which was true. But to avoid fur-ther questions, I decided to not tell any-one at work again when I was seeing adoctor, and I tried to schedule appoint-ments during lunch time.

Yet, increasingly, I realized that Iwould need to tell my boss. Telling atleast would ease the emotionally taxingdebate in my head. But when would bethe right time?

Long talks with family and with staffat my MS center in New York convincedme that telling would be personallysalutary. I was reassured that since Ihad been in my position for more thanfive years, my record would speak foritself—and would outweigh any doubtsabout my ability to continue.

But who really knew? Could I trustthe advice? In the end, it came down toone person’s decision. Could I even trustmy own judgment?

When do I tell?There never was a right moment. Severaltimes I thought I was ready, but pulledback, worried about negative reactions.As I passed the first anniversary of start-ing on interferon, I decided I could waitno longer. On a Friday evening, whenthe busy workweek had quieted down, Ishared my situation with my boss.

My health is normally a private mat-ter, I explained, but something had


changed in the past year that needed tobe shared with him. Recalling our con-versation seven months earlier about myfrequent visits to doctors, when I statedthat what I have is not life threatening,I reaffirmed that was true. What I haveis MS, I’ve had it a long time, but sincethere has been a change in my conditionand the disease is totally unpredictable,I wanted him to know.

The immediate reaction was shock—and concern. “I always wondered whatyour secret elixir is,” said my boss, who,like many, had seen only a healthy andenergetic colleague. Since he knew littleabout MS, we continued the conversa-tion. I explained MS, my experiencedealing with it, and the uncertainty thatlies ahead.

“Will you be compelled to resign?” heasked, and I replied, “Of course not.”

I left him with weekend reading, anarticle I had written about the lonelinessof coping with MS. I wrote it severalmonths earlier, initially as a form oftherapy, but I had become eager to pub-lish it—indeed, the few who knew aboutmy MS were encouraging me to do so. A few weeks after our conversation, thearticle was published in the Interna-tional Herald Tribune, which actuallymade it easier to tell others.

Almost as quickly as an exacerbationcould hit, news of my MS permeated myplace of employment and beyond. Ityielded many calls and e-mails of empa-thy and admiration. But understand-ably, only a small percentage of my col-leagues came forward to say something.It certainly is not easy to figure out what

to say to someone you know who is deal-ing with a disease.

And now?Since going public, conversations at workhave showed no indications that thoseattitudes of empathy have changed.Months later, work is the same. I work.I travel. I attend and run meetings.

Adjustments persist, given the uncer-tainty of the disease. Are there difficultdays? Sure. What is essential is convey-ing honestly that the work can be done.When an opportunity came up for anoverseas business trip, my boss ques-tioned, out of concern, whether I shouldgo. Without hesitation I said I’d tell himwhen I’m not able to travel.

Significantly, the burden I carried forso long, struggling whether to tell or not,is gone. If I need to take a break, I cancomfortably say why. When somethingdeveloped suddenly that required takinga day off to meet with doctors, there wasunderstanding.

True, each person with MS mustevaluate his or her own personalemployment circumstances. But, as Ilearned, we need not necessarily feartelling others. Agonizing over whether totell or not definitely creates moreunneeded tension and stress—a thingwe people with MS do not need. �

Kenneth Bandler is director of communications for

the American Jewish Committee. A longer story

about his experiences, “Office Secrets: After Diag-

nosis, A New Dilemma” by Amy Dockser Marcus,

was published last spring in The Wall Street

Journal.


Agood-looking man rolled to the stop signas I rounded the corner on my scooter. Hegreeted me; I guess I looked bewildered.“You were my grade school counselor,” hesaid. I was pleased; I wondered whichchild he had been.

I had worked as a counselor at theMendocino Grammar School in 1995 as an intern. Ienjoyed great success with the children and had a goodrelationship with my peers. There was a job opening for a school psychologist for the following year. I applied;

Employment

B Y J O A N N E D I C K S O N

The ADA and Employment


I thought I was a shoo-in. My résuméwas impressive and I had been doing thejob for a year. I waited eagerly to hearwhen my interview would be. Three daysbefore school started, I received a callfrom the principal saying someone elsehad been hired. I was never even offeredan interview. I wanted that job!

According to the Americans with Dis-abilities Act (ADA), all pre-offer inquiriesabout an individual’s diagnosis or possi-ble future disability are prohibited.Interviewers can ask about current abil-

ities required by the job. However, I hadreadily disclosed; everyone knew I hadMS. It was no big deal. Or so I thought.Had I been more savvy, I might havethought I was being discriminatedagainst.

Instead, I decided to move on.

Does disclosure hurt?Pamela Hirshberg, programs managerat the National MS Society’s SouthernCalifornia Chapter, advises her clientsthat it might. She strongly urges peopleto think through how their peers andsupervisors might react and to practicewhat they will ask for with an employ-ment counselor or advisor.

“In my employment groups, I tell peo-ple not to disclose unless they need aspecific accommodation,” Hirshbergsaid. “Even then, they don’t need to telltheir diagnosis. They need to explainhow an accommodation will solve prob-lems caused by a medical condition,” shesaid.

Does ADA protect us?According to ADA attorney CharlesGoldman, who practices in Washington,D.C., enforcement issues are rarelyclear-cut. ADA provisions are a continu-ing process … open to interpretation.Employers who disobey the law can becited for non-compliance. But mostnever go to litigation according toPamela Hirshberg.

“To go to litigation an employerwould have to say you were refused ajob, or terminated, or not promotedbecause you have MS. Employers aretoo smart to do that nowadays,” shesaid. There are many more subtle waysfor employers to discriminate.

The best, most specialized attor-neys may know all the fine points. Ifyou decide to make a formal complaint,it is also very important to have your neurologist on board. You may becalled on to provide professional med-ical opinion about whether you can doa specific job.

Clearly fighting employment discrim-ination in court is difficult, expensive,time-consuming, and emotionally drain-ing. But ADA does offer us some protec-tion because it has helped change publicattitudes.

“To go to litigation an employer

would have to say you were

refused a job, or terminated, or

not promoted because you have

MS. Employers are too smart to

do that nowadays.”

—Pamela Hirshberg


Some backgroundI first heard the phrase “reasonableaccommodation” years before it becamethe cornerstone of the ADA. It appearedin the Rehabilitation Act of 1973, whichcovered federal employees, and itheralded a change toward peoplewith disabilities. Some very pro-gressive private employersadopted policies of this act longbefore ADA made them legallyobligated to do so.

The ADA was passed by Con-gress in 1990. It was the firstcomprehensive legislationpassed by any country to pro-hibit discrimination on thebasis of disability. It covers allaspects of the employment relationship,from recruitment to firing, and it goeswell beyond those issues to provide pro-tections in public facilities, includingtransportation, telephones, and more.

Historically, ADA is an extension ofthe Civil Rights Act of 1964, guarantee-ing full participation in American soci-ety for all people with disabilities, justas the Civil Rights Act guaranteed thisfor all people regardless of their race,sex, national origin, or religion.

The landscape for people with dis-abilities has changed dramatically inthe years since. Before that time itwas unusual to see disabled peoplewho were working. Today, attitudinalbarriers continue to break down asmore people with disabilities becomeemployed. Moreover, employers areaware that there are guidelines as towhat constitutes discrimination.

What to do if you experience disability discrimination

Contact your National MS Society’snearest office first. In addition to infor-mation and advice on negotiating withyour employer, your chapter may beable to refer you to a professionalmediator. If, ultimately, you want tofile a legal charge, shop around for alawyer. Don’t assume that the personwho did your real estate closingknows the ADA. Call your state orlocal bar association and ask forsomeone who is experienced inemployment law. Ask if he or she rep-resents management or employees.Don’t be afraid to ask the dirty ques-tion, “What are your fees?”—J.D.


How ADA redefined disabilityADA covers almost everyone with MS.It doesn’t apply only to those in wheel-chairs. It covers every person with animpairment that “substantially limitsone or more major life activities.” Invis-ible symptoms like MS fatigue or blad-der dysfunction clearly fit this defini-tion. Initially, people thought aboutADA making workplaces wheelchairaccessible. They weren’t thinking aboutpeople with MS who might require anadjusted schedule because of issues ofstamina. But an adjusted schedule canbe a reasonable accommodation basedon the “must do” functions of a job.

Suppose you are a toll taker on afreeway and MS fatigue leaves you tootired to get to work. You can’t expect

the highway department to keep youon. (You could ask for a different type ofjob.) But if you were an accountant forthe highway department, you mightsay, “Let’s adjust my schedule.” Avacant desk and a vacant tollbooth aretwo different stories. Adjusting anaccountant’s schedule could be consid-ered a reasonable accommodation,according to attorney Charles Goldman.

While the system is far from perfect,reasonable accommodations keep many

people with disabilities employed, andthat in turn slowly educates the publicabout us. The more visible we are, thebetter. For that reason I roll in theFourth of July parade in my townevery year. When I’m out in public, I’mhelping to raise public awareness aboutpeople who use wheelchairs.

Did ADA work for me?By 1990 my function was noticeablydeclining. I struggled more and morewith fatigue and with pain. I have anMA in Art History and was working asan art critic. I could no longer climbstairs or do the hustling necessary formy job. I agonized about what I shoulddo. With the help of my therapist, Idecided to study psychology and becomea psychotherapist. A friend told me thatCalifornia’s Department of Rehabilita-tion (DOR) would help people whoneeded to make career changes forhealth reasons, so I contacted them.

My DOR counselor was a wonderfulman named Stan White. He workedwith me for some time and had meattend workshops with other excellentcounselors. With their help I entered agraduate program and received my MAin Clinical Psychology in 1993. The DORhelped pay my tuition and subsidizedbooks and school supplies.

But then my career plans derailed. Mymarriage ended. I was on my own. Andmy MS was progressing. I had to moveto a rural community, and there I had todevelop my own counseling internships.I ended up working with many differentpopulations—from children to alcohol

Today individuals with

disabilities are far more likely

to be contributing their abili-

ties and their intellects to their

communities. And the world

gets something back.


and drug addicts. In all my internships,reasonable accommodations were madefor me without questions. I was grantedflexible work hours. The DOR purchasedan adapted van to carry me and myscooter. Driving instruction was provided.Occupational therapists (OTs) designedplans to minimize my fatigue and maxi-mize my function. It was done withgreat sensitivity. My life was on a roll.

Then came “The Driving Evaluation.”Here I got into some murky territory.The driving test was scheduled over athree-day period. It was grueling. Imight compare it to an able-bodied per-son having to climb a wall as part of adriving test. On the final day I was notallowed to drive when my energy was atits peak. The same OT who had taughtme to minimize the impact of my

fatigue by scheduling tasks for my besttimes, now insisted that I do severalextra transfers, and take the test after Iwas totally exhausted. I did not pass.

I appealed and was granted a newevaluation, but it had to be done in adistant city, where the three-day examwould be compressed into a single day. I tried to argue, but the OT insisted thatthey needed to see me “at my worst.”

Ultimately, I was advised to close myfile with the DOR. The hand controlswould be removed from the van and Iwould no longer be able to drive. I had noother options, so, reluctantly, I took theiradvice. I am still processing this loss.

Since that time I have been self-employed conducting therapy groups inmy home. This works well. There ismuch work to be done. With my back-ground, I feel well qualified to be part ofwhatever comes next.

Where we all are nowDespite ongoing problems, the world isvery different from what it was beforethe ADA. Today individuals with disabili-ties are far more likely to be contribut-ing their abilities and their intellects totheir communities. And the world getssomething back. Not to sound like aPollyanna, but as a therapist, my MS hasgiven me insights into the human spiritI couldn’t have imagined before dealingwith this disease. Of course, if theyfound a cure tomorrow, I would take it.After all, I’d still have the insights.�

Joanne Dickson is a freelance writer and a

therapist in Mendocino, California.

On our Web site

For more information on employment,cognition, and fatigue, go to: nationalmssociety.org/employmentnationalmssociety.org/spotlight-

cognitionnationalmssociety.org/spotlight-fatigue

www.nationalmssociety.org/employment

www.nationalmssociety.org/cognition

www.nationalmssociety.org/fatigue


Employment

On the Job with Fatigueand Cognitive

Issues

B Y J O S T R A T M O E N

Fatigue and cognitive issues—not physical disability—are the major reasons why many people with MSeventually leave the workforce. Up to 87% of peoplewith MS report significant fatigue. Cognitive dys-function affects 45%–65% of people with MS. Fatiguecan increase cognitive problems. So can stress. If not

addressed, they may combine into a downward spiral.

Strike one: fatigue If you have MS, you probably know what dragging yourself outof bed to get to work feels like. But, Susan Forwell, PhD, anoccupational therapist with the School of Rehabilitation Sciencesat the University of British Columbia in Canada, echoes most


experts when she says the causes offatigue in MS are poorly understood.

“Some researchers believe fatigue is adirect consequence of the disease processwhile others suggest that it is also a fac-tor associated with mobility problems,depression, and sleep disturbances,” For-well said. Moreover, research is hobbledbecause there are no truly objectivemeasures of fatigue. It is hard to teaseout the factors that go into a person’sperceptions of his/her fatigue—and justas difficult to verify the outcomes oftreatment.

Cytokines and axons: connections not provedOne mechanism of the disease process isthe elevation of pro-inflammatory pro-teins called cytokines. In experiments,these cytokines trigger fatigue and sleep-iness. Another mechanism is a loss ofaxons, the nerve fibers that conductimpulses through the central nervoussystem. Axon loss is associated withhigher levels of disability. But, so farresearchers have not been able to showthat either elevated levels of pro-inflammatory cytokines or higherdegrees of disability are always con-nected to higher levels of fatigue in MS.

Problems with mobility, sleep, or depression

Having any mobility problem increasesfatigue. People with disabilities spend alot of energy negotiating daily tasks.Depression shares some common attrib-utes with fatigue, such as lack of energyand decreased motivation. “And sleepproblems result in some of the samesymptoms,” Forwell said.

But once again, researchers cannot becertain that depression or sleep problemscorrelate strongly with the level offatigue.

What to doClearly, getting a han-dle on fatigue is anongoing process. Eachperson has to uncoverthe strategies that helpher or him. Moreover,the degree to which aperson can manage

fatigue in the workplace depends on thetype of work the individual does.

“Those who work in offices have abetter chance of being able to reconfig-ure their workspace and workload toaccommodate their fatigue,” Forwellsaid. “Avoiding stairs, taking regularbreaks, and having a comfortable placeto rest from time to time can help a lot.”Energy conservation techniques, shownin the table on page 12, may be essen-tial. Maintaining physical fitness alsodecreases fatigue so an exercise programis equally important.

“Unfortunately, some jobs requirepeople to be on their feet all day. They

‘‘The more tired I get, the more stressed Iget and the more I find it hard to concentrate and the more tired andstressed I get. It’s a vicious circle.’’


cannot practice energy conservation,”Forwell noted. “I advise them to try andswitch to a job within the same industrythat allows them to sit and take regularbreaks.”

First seek medical helpCheck with your doctor if you habituallystart the day feeling unrested or havesymptoms of depression. Ask if any ofyour medications could be contributingto your fatigue. Ask about any herbs ordietary supplements you use as well,because some of them increase fatigue.

Then seek therapists who specialize in job retentionAn occupational therapist can helpdevelop strategies for performing dailyactivities at work and at home.

A vocational rehabilitation specialistcan offer solutions such as redesigning aworkspace or identifying other moresuitable jobs. The Rehabilitation Ser-vices Administration, a federal agency,supports vocational rehabilitation pro-grams in every state. Services mayinclude funding for training, home orworkplace modifications, and assistivetechnology to help people with disabili-ties obtain or maintain work. To contactyour state’s vocational rehabilitationprogram, go to www.jan.wvu.edu/sbses/vocrehab.htm or telephone 800-526-7234 toll-free.

Do medications help?This is a controversial area as no onemedication clearly works well for every-one. According to Dr. Forwell, modafinil

(Provigil®) is the most useful agent avail-able at the moment. This conclusion hascome under scrutiny, as indicated in thebox on page 15. Amantadine (Symme-trel®) has demonstrated a modest benefiton MS fatigue and is much less expen-sive than modafinil. Both fluoxetine(Prozac®) and bupropion (Wellbutrin®)may be helpful.

Strike two: cognitive problemsYou’re at your desk working on aspreadsheet program and someone stopsby to talk about last night’s baseballgame. This brief interruption is enough

Energy conservation techniques

� Prioritize tasks� Plan ahead (schedule strenuous

tasks throughout the week, not all atonce)� Perform the most strenuous task

during the part of the day when youhave the most energy� Take a 10-minute break every hour� Pace yourself� Perform activities while sitting,

when possible� Organize your workspace to avoid

reaching, bending, carrying, and climb-ing� Use labor-saving techniques (for

example, if you need to get a file fromsomewhere else try to wait until youhave several files to collect)� Plan on 10 to 12 hours of daily rest� Use correct body mechanics (your

physical therapist will help you identifyand implement these)


to derail your entire train of thought.You have to go back and start again.The impact of MS on cognition canmake the simplest task into a compli-cated mental hurdle.

According to neuropsychologist Lau-ren Caruso, PhD, people with MSexhibit varying degrees and types of cog-nitive problems depending on wherelesions are seen in their brains andwhether atrophy, or loss of volume inthe brain, has occurred. Magnetic reso-nance imaging (MRI) studies havehelped clarify why many people withMS experience cognitive dysfunction.

“The most common problems to affectperformance on the job are problems withattention, concentration, and short-termmemory,” Dr. Caruso said. It may be-come difficult to concentrate on twothings at once. The ability to multi-taskor think on your feet may diminish. Pri-oritizing thoughts, moving smoothly fromtopic to topic, or controlling the expres-sion of emotions may become impaired.

In addition, some cognitive problemsaffect vision or communication. Dr.Caruso noted, “It is sometimes difficultfor people with MS to recognize the rela-tionship between objects that they see,

or to find the right word toexpress what they want tosay.”

While these are correctlycalled cognitive problems,they don’t affect intellectualfunction. Most people with MSare able to reason, learn, drawfrom their knowledge andexperiences, and make appro-

priate conclusions and judgments.

What to doGeneral tips for cognitive issues are listedbelow. These ideas may also help:

For better concentration, ask to havea private office or a workstation sepa-rated from the rest of the gang.

Cognitive strategies

�Write everything down: diaries,loose-leaf organizers, and hand-heldcomputer/organizers are helpful. � Have a particular place for every-

thing and always put things backwhere they belong; encourage oth-ers to do the same.� Repeat things that need to be

remembered. And write them down. � Try not to get hung up on recall-

ing a word. People are often happy tochime in with the right one. Let them. � Take your time. Plan your work

and don’t be rushed by anyone.� If you find cognitive problems

crop up at a particular time of day,reorganize activities so you have themore demanding things done beforethat time.


When working on a complicated task,switch the phone to voicemail and turndown the volume on the computer tolimit interruptions or disturbances.

Avoid situations where quick mentalprocessing is required. Help your employ-ers and colleagues to understand thatyou might not think as quickly as youused to but this doesn’t mean that youcan’t think effectively when given time.

Work on being well organized. Accord-ing to Dr. Caruso, this can go a long way

to dealing with cognitive problems in theworkplace.

Get adequate sleep. “Cultivating reg-ular sleep patterns is one of the mostimportant things to do to moderate cog-nitive problems,” Dr. Caruso believes.

Professional help can make a differ-ence. Neuropsychologists are experts inevaluating cognitive problems anddeveloping compensating strategies forthem. Occupational therapists andspeech/language pathologists also haveexpertise in cognitive problems. YourMS health professional or Society chap-ter can provide referrals.

Alternatives?People try a variety of complementarytherapies to alleviate cognitive problemsor to address side issues, such as stress,that make the problems more intense.Discuss any herbal or dietary supple-ment or other alternative treatmentsuch as acupuncture with your MShealth professional first. You shouldexpect your MS professional to listen toyour ideas and give you valuable in-sights. Practices such as yoga and medi-tation are known to help many people.

You’re still in the gameWhile fatigue and cognitive problemscaused by MS can have a major impacton the ability to work, every individualis different. Explore what works for youin order to learn what accommodationscould contribute to your personal job per-formance. Look for strategies that com-pensate for your particular problems.

Keeping your job may feel like a full-

Two ways to protect your future

One: Act early to protect your job if youknow you are developing cognitiveproblems. Carefully prepared disclosuremay be in your best interest. Peoplewith hidden cognitive problems mayend up fired—and people who are firedare not eligible for unemployment bene-fits or disability insurance coverage.

Two: Be aware that flexible schedulesare not the same as reduced workhours. Flextime should add up to a fullwork week. If you opt for part-time workand retire altogether at a later date,your disability benefits will probablyreflect your most recent earnings. Bevery sure you know how your benefitswould be affected should you reduceyour hours or accept a lower paying,less stressful job. Have a candid con-versation with your benefits managerbefore telling your employer what youplan to do.


time job initself. Only you can

know if the effort con-tinues to be worth theresult. You should know

that many people with MS continue towork for many years, thanks to theirdetermination, some good luck, and thehelp of knowledgeable professionals.

Jo Stratmoen wrote about myelin repair and pro-

tection research for InsideMS Oct.-Nov. 2005.

References for your health-care professional

1. Tartaglia MC, Narayanan S,Francis SJ, et al. The relationshipbetween diffuse axonal damage andfatigue in multiple sclerosis. ArchNeurol 2004; 61:201–7.

2. Bagert B, Camplair P, Bour-dette D. Cognitive dysfunction inmultiple sclerosis: natural history,pathophysiology and management.CNS Drugs 2002; 16:445–55.

3. Schwid SR, Covington M, SegalBM, Goodman AD. Fatigue in multi-ple sclerosis: current understandingand future directions. J Rehabil ResDev 2002; 39:211–24.

4. Rao SM. Cognitive function inpatients with multiple sclerosis:impairment and treatment. Int J MSCare 2004; 1:9–22. �

Provigil® is a registered trademark of Cephalon, Inc.Prozac® is a registered trademark of Eli Lilly and Co.Symmetrel® is a registered trademark of Endo

Pharmaceuticals.Wellbutrin® is a registered trademark of GlaxoSmith Kline.

Mixed messages aboutProvigil® for MS fatigue

Provigil has been used to treatexcessive sleepiness caused by cer-tain sleep disorders since 1999. In2000, the manufacturer, Cephalon,conducted a study to evaluate itseffect on fatigue in MS. The findingsstated that people taking Provigilreported less fatigue compared topeople taking a placebo. Two small,subsequent studies reported similarfindings.

Physicians began prescribingProvigil, off-label, for MS fatigue.Since there were no serious sideeffects, it seemed safe to give it a try.However, a rigorous controlled trial in115 people with MS, published in theApril 2005 issue of Neurology, con-cluded that there was no improve-ment of fatigue in people treated withProvigil compared to people taking aninactive placebo.

The investigators suggest that“placebo effects” may have con-tributed to the positive results ofearlier studies. But many respectedclinicians who treat people with MS,including several who reviewed thisarticle, are impressed with the posi-tive effects of Provigil on MS fatigue.They are mainly dismayed by its highcost. The researchers acknowledgethat further studies are needed beforefirm conclusions can be made aboutthis drug.

—Rochelle Kraut


Employment

Hearing Denise Veazey, Linda Tucker, andKaren Jackson describe their schedulesis exhausting—no matter how much of acapable, Type A person you might con-sider yourself.

“I’m up at 6:00 AM,” Veazey said,“and I’m on the go until 8:00 PM.” When

she’s not on the phone with her customers at Mary KayCosmetics, she’s working on her first novel, getting heressential hours of exercise, or helping organize WomenAgainst MS events with the Society’s Mid South Chap-ter—all from her wheelchair.

B Y C H R I S L O M B A R D I

Can a Phone LineMake Your Career?


Linda Tucker‘s workalso has her on the phone

for much of the day, talkingto people all over Tennessee

about long-term care insur-ance. “I’m a living, breathing example ofwhy that’s important,” she said. Theslow progressive course of Tucker’s MShas left her quadriplegic.

Karen Jackson works five days aweek for a surgeon. Three days she’s atthe office in Washington, DC, answeringcalls and consulting with the doctor; twodays she’s at home in Fort Washington,Maryland, where she can work as herMS fatigue allows.

While all three of these women arespecial, they’re far from unique. Peoplewith disabilities—including many withMS—are finding ways to keep working,or start working again, by telecommut-ing, or doing “telework.” Technology,whether it’s the Internet or an old-fash-ioned telephone, helps create the mostaccessible office of all.

A “reasonable accommodation”Telecommuting is recognized as a possi-ble “reasonable accommodation” underthe Americans with Disabilities Act(ADA). The federal government encour-ages it for people with disabilities, mostrecently through its “New FreedomInitiative.” Still, getting started isn’t assimple as it sounds.

What is often most successful is per-suading your current employer to offer aschedule like the one Karen Jacksonhas: part on site, part from home.

“Most employers will allow a personto work at home at least one day aweek—especially if the person hasalready demonstrated themselves as avalued employee,” said Steve Nissen,director of Operation Job Match at theSociety’s National Capital Chapter.

Nissen, who directed a special tele-work initiative from 1997–2002, hasfound that some fields are more con-ducive to working from home than oth-ers: “Web design, computer program-ming, college and university counseling,writing, editing, and even teaching atthe college level, where the prep workcan be done at home, are all acceptablechoices.”


“We’re moving rapidly toward a moreflexible workplace for all employees,”said Jane Anderson of the MidwestInstitute for Telecommuting Education(MITE) in Minneapolis, Minnesota.

The bridge to the right job Operation Job Match and MITE bothwork with employers to help createplacement options. For example, Nissenfound work for former floor nurses,whose MS-related fatigue made thosejobs impossible, with hospitals thatneeded help processing radiologyreports. Anderson’s agency worked withthe United Way of Minnesota to developits “First Call for Help” hotline. All callsare answered by people with disabilitiesfrom their own homes.

For Linda Tucker, a former girls’ bas-ketball and softball coach, the bridge

was Jeanne Brice, director of Programsat the Society’s Mid South Chapter.Brice noticed Tucker’s “strong voice andwinning personality” and put her intouch with Gail Lesby, a local insurancebroker who was looking for a friendly,outgoing person to help her.

Now, Tucker helps keep Lesby busyby setting appointments for Lesby’ssales calls. Tucker makes 20 to 30 calls aday, depending on her energy level. Ather desk is a holder that puts a mouthstick and a cell phone within her reach.She uses the stick to dial, then speaksthe results to her computer: voice-recog-nition software enables her to updatethe database. Tucker’s personal aide,Princess Rhae, types any extra notes,and faxes the resulting call lists toLesby. “A fair percentage of the people Italk to become clients,” Tucker said.

Cutting out the commuteIn late 2003 Karen Jackson was goingthrough some major transitions. Coach-ing had become too fatiguing and Jack-son realized that she had to make achange. A surgeon she knew from herathletic work needed some help. Today,Karen takes dictation, schedules surger-ies, and makes sure each procedure is“pre-authorized” by the patient’s insur-ance. Her experience negotiating withinsurance companies on her own behalf,she said, “certainly didn’t hurt.”

On Thursdays and Fridays, whenJackson works from home, she doesn’thave the fatiguing effect of a commute inthe nation’s capital. “I leave my office at5:00 PM and sit in traffic. At home, I’m

Equipping the home office

Linda Tucker adapted her home tomake telework possible. It’s oftencostly: A home office probably needsan extra phone line or broadband Inter-net service, as well as office chairs thatwill sustain a workday, a hands-freetelephone, and other aids. Steve Nis-sen often negotiates with employers toprovide the right environment. Statevocational rehab agencies can oftenprovide funds and assistance. The U.S.Office of Personnel Management’sWeb site, www.telework.gov, housesa wealth of information, including tele-work resources and laws pertaining toworking from home.


often still at the computer at 7:30 PMand I get a lot more done.”

“This increased productivity is quitecommon among teleworkers with MS,”said Kim Cordingly, of the national JobAccommodation Network (JAN). Cord-ingly is currently studying women withMS in “alternative employment” for herdoctoral dissertation. “These women canbe so much more productive if they elim-inate that commute,” she said.

Start slowly and carefullyIs telework right for you? Cordingly and Nissen both emphasize a carefulstart. You can go directly to agencieslike JAN (800-526-7234, www.jan.wvu.edu), or your local and state employ-ment and vocational rehabilitation agen-cies. “But you can’t make an immediateswitch,” Nissen said. “You need to lookat yourself and see what you have tooffer, not just what you need.”

What not to do, both agree, is tojump on any random offer that promisesriches for at-home work. Many arescams. They exploit workers, often usingthem and their computers to send bor-derline-illegal bulk e-mail (also knownas “spam”).

The ultimate work athome: starting a business

Some people flourish by becomingself-employed.

Kim Cordingly, who has been atJAN for 20 years, coordinates theagency’s Small Business and SelfEmployment Service (SBSES).SBSES helps with business plans,

office equipment needs, andpayroll and benefits systemsfor people embarking on thisroute. Cordingly has workedwith farmers and truck driv-ers, lawyers and psycholo-gists. She refers her clientsto business developmentgroups and vocational reha-

bilitation agencies that provide verysmall business loans to people whonormally aren’t eligible for financing.

“The average start-up loan is about$10,000,” said Patti Lind of The Abili-ties Fund, a national group that pro-vides both capital and assistance toentrepreneurs with disabilities. Thefund works with a mosaic of private,federal, and state programs. Manystates have “individual developmentaccounts,” where every dollar you’reable to put into your business ismatched by the state. Some busi-nesses are eventually profitableenough to take the place of full-timeemployment, which is the explicit goalof The Abilities Fund.


How will you know?“Just. Be. Informed,” Nissen empha-

sized. “If an employer wants any moneyup front, say no. Make sure you’re onthe payroll of an actual company.”Check with the national Better BusinessBureau, www.bbb.org, to make sure.And remember, if an offer sounds toogood to be true, it probably is.

Telework and benefitsDenise Veazey, the Mary Kay associate,is acutely aware of the need for benefitsplanning. Veazey was once a specialistin private disability insurance before shestarted having paresthesia in her arms,and was diagnosed with progressive MS.

Veazey moved back to her hometownin Tennessee, where she knew peopleand where her benefits, from SSDI andfrom the private disability insuranceshe’d purchased, would stretch further.When she wanted to return to work,she knew she would still need Medicare

and other support. Mary Kay Cosmet-ics, with its flexible schedules, allowsher to work “about three hours a day”and earn a significant income, withoutexceeding the maximum allowed underSocial Security’s “work incentives”—currently $829 a month.

Karen Jackson is also careful to dothe same: “I’m actually part time. Idon’t put in more than 64 hours in apay period,” she said.

Nissen, Anderson, and Cordingly allemphasize the crucial nature of benefitsplanning. Understanding the eligibilityrules is important, even if you’re notreceiving SSDI or Medicare and are rely-ing on your job’s disability insurance orare hoping to start a business. Most pri-vate insurance companies take theirguidance on eligibility from the SocialSecurity Administration’s rules. �

Chris Lombardi is a regular contributor to

InsideMS.

The loneliness of the long-distance teleworker

Working at home gives you the flexibilityto work when you can, and at your ownpace. But it can also be lonely, especiallywhen the only voices you hear comethrough the telephone. Keeping face-to-face connections with the outside worldis important.

Linda Tucker never misses a Univer-sity of Texas football game and looks for-ward to her grandchildren’s visits, as wellas the gatherings where she meets theclients she’s found for her friend andemployer. Still, she allowed that “it’s hard

some days.”Karen Jackson, who said she some-

times feels she is “too attached to beinghome,” thinks her on-off commuteschedule gives her just enough of otherpeople to keep her sane, especiallysince her husband travels a lot for work.

Denise Veazey keeps herself busy inaddition to her job: She participates inWomen Against MS events; volunteersat a local hospital and the Boys & GirlsClubs; and meets regularly with a writ-ers’ group.


Employment

B Y B E V E R LY N O Y E S , P H D , L P C , A S S O C I A T E V I C E

P R E S I D E N T O F P R O G R A M S A N D S T A F F D E V E L O P M E N T

Do you Have a Plan B for Employment?The Society wants to help you hope for the best and plan for the worst

APlan B is something everyoneneeds—not just people with MS.This isn’t pessimism. It’s justbeing realistic about life. An

employment crisis could be a major MSexacerbation or a recurring symptomthat shoots a hole in a former ability. Itcould also be industry slowdown, com-pany downsizing, a family emergency.You need to ask yourself tough “what if ”questions and answer them with con-crete plans.

How do you get started? Assess your current situation. How is

your job performance? Don’t wait for areview from your supervisor. Reviewyourself as if you were your employer.You may conclude you’re doing fine. Thenext step still needs to be taken.

Assess future possibilities. What ifyou have a change that affects yourstamina or your abilities? What kinds ofadjustments could you make? Would youneed training? New skills?

What resources do you have for thesechanges? Do you understand youremployment benefits, including anytraining or tuition programs and whenor how they can be used? Do you knowwhat benefits your spouse has? What

kind of tax hit would you take if you hadto access your retirement money? Whatwould happen to your disability orhealth-care benefits if you cut back topart-time employment?

What legal protections can you claim? The National MS Society can help

you find your answers. Today, everychapter has a trained employment advi-sor or an expert volunteer. If you havefinancial questions, the chapter can con-nect you to an advisor from the Societyof Financial Service Professionals. Theyhave agreed to provide free consultationto people with MS. Your chapter hasbooklets and fact sheets on the Ameri-cans with Disabilities Act, negotiationtechniques, disclosure, and insuranceissues. Staff members can refer you tothe vocational rehabilitation programsin your state and to occupational thera-pists, neuropsychologists, or speech/lan-guage pathologists should you need theirservices.

The Society’s Career Crossroads edu-cation program is designed to help youwork through issues involved in keepingyour job or getting a new one.

How do you get started? Call yourchapter at 1-800-344-4867.


The National Multiple Sclerosis Society is proud to bea source of information about multiple sclerosis. Ourcomments are based on professional advice, publishedexperience, and expert opinion, but do not representindividual therapeutic recommendations or prescrip-tion. For specific information and advice, consult yourpersonal physician.

The Society publishes many other pamphlets and articlesabout various aspects of MS. To ask for these, or forother information, call the National MS Society at1-800-344-4867.

All our publications are on our Web site, along with hand-outs called "Basic Facts" on various topics. For a list, clickthe bar on our home page called “Library”. If you have noaccess to the Internet, just call your chapter and ask for acopy of the latest Publications List.

Some of our popular pamphlets include:

� A Place in the Workforce� ADA and People with MS� Should I Work? Information for Employees� The Win-Win Approach to Reasonable Accommodations

ER4325 9/07 $3.50

The National Multiple Sclerosis Societyis dedicated to ending the devastating

effects of multiple sclerosis.

� � � �

Programs and Services DepartmentPublications Program

National Multiple Sclerosis Society700 Broadway, Suite 810

Denver, CO 80203Tel: (303) 813-1052Fax: (303) 813-1513

National Web site: nationalmssociety.org

For Information: 1-800-344-4867Web site: nationalmssociety.org

www.nationalmssociety.org

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