CMSC Conference Recap • Planning for an Emergency · CMSC Conference Recap • Planning for an...

CMSC Conference Recap • Planning for an Emergency

Fall 2005MSAA

Bringing Information to People with Multiple Sclerosis

Feature ArticlesHighlights from the Consortium of MS Centers’ Annual Meeting ............ 22by Susan Wells CourtneyThe 2005 CMSC Annual Meeting provided five days of workshops, lectures, and presentations to healthcare professionals.

New Medicare Drug Program .................................. 25by Susan Wells CourtneyA quick overview of Medicare Part D is given.

Published by the Multiple SclerosisAssociation of America

Douglas G. FranklinPresident & CEO

Terrence McFarlandVice President for

Development & Corporate Affairs

Robert RappVice President for Programs & Eval.

Gary Wallace, CPAVice President for

Finance & Administration/CFO

Jack Burks, MDVice President & Chief Medical Officer

MSAA Board of DirectorsJoseph R. King, Chair

Paul Favorite, Vice-Chair

Francisco Ramirez, Treasurer

I. Ross Maclean, Secretary

Ila Bhatnagar

Jeri Canter, RPH

Tracey Edwards

James J. McGuinness

Sue Rehmus

Eric Simons

Mark L. Stine

The Motivator StaffAndrea Borkowski, Editor & Advertising Manager

Susan Wells Courtney, Senior Writer

Peter Damiri, Contributing Writer

Amanda Bednar, Contributing Writer

MSAA National Headquarters

706 Haddonfield RoadCherry Hill, NJ 08002

(800) 532-7667

www.msaa.comThe Motivator’s purpose is to inform andeducate those with MS and their families.MSAA does not endorse or recommend

any products, services, or items mentionedin articles or advertisements that appear

in The Motivator.

Cover StoryPlanning for the Future ...................... 7by Christine NorrisAdvance directives, which include appointing a healthcare representative and drafting a living will, areimportant instructions for everyone to have in place.

DepartmentsUp Front ...................... 2by Douglas G. FranklinMSAA President and CEO DougFranklin provides an update on thelatest MSAA news. This issue’sBoard sidebar (written by AmandaBednar) features Board memberRoss Maclean.

Ask the Doctor .......... 26by Jack Burks, MDMSAA’s vice president and chiefmedical officer answers questions.

Research News .......... 31By Susan Wells CourtneyTopics are: (1) Tysabri update; (2) interim results from Campath trial; and (3) highlights of important findings presented at the AAN’s annual meeting.

Program Notes .......... 34by Peter DamiriMSAA’s volunteers make a world of difference.

Symptom Awareness .... 36by Susan Wells CourtneySymptoms of depression and treatment options are presented.

Health and Wellness...... 38by Elizabeth ThompsonThe importance of preparing for an emergency is discussed.

Regional News ............ 52A listing of events, programs, andnewly-formed support groups fromthe MSAA regional offices.

Spread the Word ........ 56Three informative books fromMSAA’s Lending Library are outlined.

Breaking Down BarriersBuilding Up Hope

Copyright © Multiple Sclerosis Association of America, 2005. All rights reserved.No part of this publication may be reproduced, stored in a retrieval system, or

transmitted in any form or by any means, electronic, mechanical, photocopying,recording, or otherwise, without prior written permission from MSAA.

Planning for the Future, p. 7

s this editionof TheMotivator

goes to press, two major naturaldisasters have justoccurred in the Gulf region from Hurricanes Katrina

and Rita. Our hearts go out to everyoneaffected. In an effort to get information out as quickly as possible, we immediatelylisted emergency contacts on MSAA’s website. This included where to call tohave MS medications replaced if they werelost or damaged in the disasters. OurHealth & Wellness column also gives somehelpful information on how to prepare foran emergency and I encourage everyone toreview this timely piece.

During the summer, questionnaireswere sent to a small sample of clients aspart of our clients’ needs assessment project. Completed questionnaires continueto pour into MSAA, and for those whoreceived a survey, your input is instrumentalin helping both our Board of Directors and our Healthcare Advisory Council prioritize MSAA programs and services forthe future. The consensus will help usdetermine how MSAA might best meet themost critical needs that individuals withMS face. This information will be of significant importance in ensuring that ournew strategic plan in 2006 meets thoseneeds and that every dollar we raise is used

in the most effective way. Listening to youand learning your key priorities are the firststeps toward these goals.

This summer saw record numbers ofequipment issued across the country.While demands for cooling equipmenthave tapered off with the cooler fall weather, requests for assistive devices,home modification inquiries, and MRIapplications have continued to increase.Calls to our Helpline averaged more than1,300 per month over the last quarter, andour new website has had more than750,000 hits in just one year. Clearly,MSAA’s programs and services are makingtheir mark in the community!

Our Board of Directors met in October to review our progress to date and to discuss “life coaching” as a viableMSAA outreach project. Plans for the next meeting in January will focus on thefinal evaluation of the clients’ needs assessment project, with collaborative inputfrom the Healthcare Advisory Council. Ournew strategic direction can then begin totake shape. This plan will be finalized inJune when MSAA’s Board meets at theCMSC conference.

As the holiday season is fast approaching,I would like to extend our most sincere bestwishes for a happy holiday season fromeveryone associated with MSAA. We allhave much to be thankful for, and withyour inspiring support, we will continueour efforts to help more people in moreplaces than ever before. ◆

by Douglas G. Franklin

A

2 MSAA Motivator

Douglas G. Franklin joined MSAA as President& Chief Executive Officer in 1999 and hasstrategically guided its national outreach andcorporate partnership support to unprecedentedlevels. Mr. Franklin is a former national trainerfor the Drucker Foundation and is an interna-tionally published expert in the field of social

marketing who holds degrees from four universi-ties. He currently serves on the national boardof the Key Philanthropic OrganizationsCommittee of the American Society ofAssociation Executives and is a member of theExecutive Committee of Health First –America’s Charities Board in Washington, DC.

Up Front

Ross Maclean joined MSAA’sBoard of Directors in January of2002. With a friend who has MSand a brother diagnosed with adifferent autoimmune disease,Ross felt that MSAA was a goodfit. “I have always believed ingiving back to the community,” says Ross,who spent numerous years as a Boy Scoutleader. “MSAA’s mission to enhance thequality of life for individuals with MS,speaks loudly to me.” Currently, Rossserves as secretary of the Board and is thechair of the development committee.

Since 2002, he has observed tremendous growth in MSAA and isexcited about the direction that MSAA is going. “Over the past three years, Ihave seen our programs and servicesexperience great demand and be delivered on a much larger national basis. I have also watched the staff taketheir commitment to the client to another level.”

Ross is proud of all of the programsand services MSAA offers but is most

impressed by the Helpline andthe Home ModificationProgram. “The stories I haveheard about the Helpline andwhat they do for our clients issomething I find to be trulymoving,” he states. “These

stories give us a reason to be here atMSAA every day.”

For the past twenty-plus years, Rosshas worked in finance for both public andprivate institutions, including MerrillLynch and First Boston. He has beenmarried for 28 years to his wife MaryLynn and has two sons, Ian and Sandy.

As MSAA embarks on its 36th year ofservice to the MS community, Ross seesgreat things ahead. “MSAA is in a great position to grow right now. In additionto our wonderful volunteers and generousdonors, thanks also go to the staff,” hepoints out. “The staff is doing greatthings to make all these events and programs possible. The sky is the limitfor MSAA; there is nothing that we cannot accomplish.”

Fall 2005 3

Meet MSAA Board Member Ross Maclean

ow one’s life will progress over theyears is a mystery to us all. Few

things in life are guaranteed, but many ofus try to make an educated guess as tohow long we might be here and how tobest plan for our future. Medical decisionsare important concerns as we age, andmaking the decisions for your future earlyon, while still healthy (both mentally andphysically), will help to see that things goaccording to your wishes when you are nolonger able to make such decisions.

Putting plans together in advance is agood idea for anyone (age 18 or over),since no one knows what tomorrow maybring; the same holds true for people witha chronic condition or illness, such as MS,whose course is unpredictable. MS isespecially challenging, since the diseaseoften appears when individuals are young,usually in their 20s and 30s – which is adifficult age for many to plan their medical

decisions for a time so far in the future.This article presents some of the

urgent medical issues that everyoneshould be addressing – not just those withMS – in order to make decisions that areimportant to each person and his or herfamily. Planning for the future through“advance directives” takes the burdenaway from family members who wouldotherwise need to make these same difficult decisions themselves, should aloved one be unable to make such choicesat a later time.

Advance DirectivesWhile planning for today’s and tomor-

row’s healthcare needs, most people willmake sure their healthcare insurance,long-term care insurance, disability insur-ance, and life insurance policies are all inplace. But in addition to these importantplans, people also need to look at their

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Fall 2005 7

The Importance ofAdvance Directives

By Christine Norris

Co-authored by Gary L. Stein, Esq., MSW

and Susan Wells Courtney

Planning for the Future

H

end-of-life healthcare choices and preparefor these in advance.

Known as “advance directives,” thesewritten instructions provide specific direc-tions to doctors and family regarding a per-son’s end-of-life choices in advance, shouldthis person become unable to make thesedecisions on his or her own when needed.While advance directives can vary fromstate to state, in general, advance directivestypically include appoint-ing a healthcare represen-tative or proxy as well ascreating a “living will.”(Please note that somesources refer to a livingwill as encompassing bothinstruction as well as theappointment of a health-care representative. In thisarticle, we have kept thetwo separated, as itappears with many state-regulated forms.)

Appointing a HealthcareRepresentative

Referred to as a Medical Power ofAttorney, Durable Power of Attorney forhealthcare, or a healthcare proxy, this doc-ument allows an individual to name atrusted person as his or her healthcare rep-resentative (also known as a healthcareagent, healthcare surrogate, medical attor-ney-in-fact, or healthcare proxy). A health-care representative makes medical caredecisions when his or her family member,

friend, or associate is dying, unconscious,incoherent, or unable to communicate. Thepurpose of a healthcare representative(who is often a spouse, partner, familymember, or close friend) is to guide familymembers and physicians in deciding to useor refuse specific medical treatments whenthe patient can no longer communicate ormake informed decisions.

When individuals do not appoint ahealthcare representative,some states will create alist or hierarchy of indi-viduals close to thepatient to serve as deci-sion makers (a person acting in this role is some-times referred to as the“surrogate”) – dictatingwhich individual wouldbe asked first. For example, the list mightbegin with spouse, thenlist parent, followed by anadult sibling, and so on,until an appropriate

healthcare representative may be selected.Next-of-kin is not always top on certainstate’s lists. Individuals who do not name ahealthcare representative in advance (when able) are risking that someone lessreliable or less familiar with their wishes will make decisions on their behalf, shouldthey become too ill to think clearly and/or communicate.

When selecting a person to be yourhealthcare representative, choosing someone

Cover Story: Planning for the Future

8 MSAA Motivator


who is assertive and well spoken, as well assomeone who will be comfortable acting asadvocate on your behalf, is recommended.A person cannot just be named as yourhealthcare representative; he or she needsto agree to the position. Since the role ofhealthcare representative can be time-con-suming and emotionally draining, the personyou select should be given the right todecline from taking on the responsibility.The healthcare representative must be comfortable in the role in order to be effec-tive on the patient’s behalf.

What’s Involved with Being a Healthcare Representative

The healthcare representativeplays an important role in end-of-life care. Generally, the lawrequires the healthcare represen-tative to make the same decisionsthat the person they’re representingwould have made, if possible. To do this, the healthcare repre-sentative should fully understandand respect the person’s overallvalues as well as his or her religious and moral beliefs. If aparticular decision is not known, thehealthcare representative should make thedecision based on what is known about the patient's preference for care, versusthe representative's personal interests ordesires. The healthcare representative maychoose to discuss different decisions withthe healthcare team and family membersfor additional input.

The healthcare representative is authorizedto make all medical decisions (not justend-of-life decisions), when the patient isphysically or mentally incapacitated. Thisincludes arranging for aggressive palliativecare (pain treatment), if the care recipientneeds this type of assistance.

The healthcare representative’s job canbe quite demanding. As an advocate, he orshe will need to meet often with physiciansto obtain clear information on the carerecipient’s diagnosis (what is wrong withthe patient), prognosis (what will probablyhappen to the patient because of the disease

or injury), and the goals of care (the desiredoutcomes in light of the patient’s prognosis).

As an advocate, the healthcare represen-tative will be required to ask questionsregarding treatment in order to make thebest decisions possible. This is not alwayseasy, and the healthcare representative willneed to continue to ask questions and tospeak up on the patient’s behalf to ensure

Fall 2005 9

that he or she is receiving the proper care.The healthcare representative may benefitfrom the help of a social worker, patient rep-resentative, or nurse, especially if the physi-cians do not provide all necessary information.

Creating a Living WillFamily and friends may think that they

know what’s best for their loved ones. Butdoes anyone really know the choices thatanother would make at a time when variousmedical treatments could either be used toprolong life or withheld to allow for a morenatural death? End-of-life choices are verypersonal and require careful planning toensure that they are carried out in accordancewith the patient’s wishes. An advance direc-tive known as a living will provides specificinstructions for a person’s end-of-life choices.

Also known as a “directive to physicians,”a “healthcare declaration,” a “medical direc-tive,” or an “instruction directive,” a livingwill may specify a range of instructions.These may include such instructions as adesire to die at home with hospice care, ora request to withhold tube feeding. A livingwill goes into effect when this person canno longer make his or her own choices(when he or she is terminally ill, permanentlyunconscious, or dying).

A living will is best prepared before aperson is seriously ill, but may be drawn upwhen a person is diagnosed with a terminalillness or becomes permanently disabled.Many young and/or healthy people are alsodiscovering the importance of preparingsuch a document in advance.

Additionally, without evidence of apatient’s wishes, medical professionals maycontinue life-prolonging treatment. This isnot only because they’re trained to do so,but also to protect them from any liability.

Individuals are advised to includeinstruction for their wishes regarding pallia-tive care (which includes pain managementand hospice care), as well as other end-of-life issues in a living will. Some people maywant to discuss their end-of-life wisheswith a spiritual or religious advisor. When you decide what to include in yourliving will, sharing this information withclose family members and your doctor isimportant. Even if everyone doesn’t agreewith the decisions, they must be encour-aged to respect those decisions. Also, bydiscussing these delicate matters inadvance, disagreements among familymembers later on may be avoided.

Do-Not-Resuscitate OrderAccording to the American Academy

of Family Physicians’ website at www.familydoctor.org, a do-not-resuscitate(DNR) order is a request not to have car-diopulmonary resuscitation (CPR) if yourheart stops or if you stop breathing.Patients who are most likely not to benefitfrom CPR are those with advanced terminalconditions.

DNR orders are written by doctors.Those who would like to have a DNR orderin place are advised to discuss this withtheir doctor, either at the physician’s officeor at the hospital. Anyone wishing to have

10 MSAA Motivator


a DNR at home (an “out-of-hospital”DNR), should also speak with their physi-cian. An out-of-hospital DNR order mustbe signed by a physician to be valid andrespected by emergency medical service(EMS) professionals.

For an example of New Jersey’s out-of-hospital DNR order, readers may visit theNew Jersey Health Decisions’ website atwww.njhealthdecisions.org and select “out-of-hospital – do not resuscitate orders”from the options on the left side. Readerswithout internet access may call the organi-zation at (973) 857-5552.

Validating, Distributing, and Changing Advance Directives

Different states have different require-ments for making the documents legallybinding; these often require signatures fromtwo witnesses or the signature from anotary. This is explained on the sampleforms for each state.

Once your advance directives’ docu-ments have been completed and signed,several copies of these documents will needto be made and given to:

• the appointed healthcare representative• the care recipient’s physician• the hospital• the long-term care facility• the care recipient’s lawyer (if involved in

one’s care)Some individuals may choose to share acopy with another family member or theirspiritual or religious advisor.

Additionally, the healthcare representa-tive should keep the originals in a safety

deposit box and also keep one copy athome where it’s easy to find. Of course, thepatient should have a set of copies kept in asafe, easy-to-find location as well. As men-tioned in the earlier listing, if the patientgoes to the hospital or to a long-term carefacility, copies should be given to theappropriate staff and placed in the patient’smedical records.

Gary L. Stein, Esq., MSW, executivedirector of New Jersey Health Decisions,explains that advance directives (MedicalPower of Attorney, living will, etc.) may becancelled or replaced with new ones at anytime simply by informing all of those giventhe previous documents and destroying theold documents. All individuals with theprevious copies will need to be given copies

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of the new documents. (While this is thecase in most states, readers are advised toconfirm what laws apply in their own state;these are usually noted with the forms forthe individual state – mentioned later.)For many individuals, knowing that theymay change their advance directives is veryimportant. One’s condition or outlook, aswell as medical treatments available, maychange over the years.

Working with a Lawyer

Gary Stein notes that forms for advancedirectives in each state are usually self-explanatory and most families do not needto consult a lawyer unless one anticipatesproblems with their family, medical team,or healthcare facility. For those who chooseto use a lawyer, consulting one who is wellversed in elder or healthcare law is recom-mended. To find one locally, individuals

Fall 2005 13


Discussing end-of-life wishes with aloved one is not easy, but doing so willenable loved ones to know your wishes.Caring Connections at www.caringinfo.orgoffers the following advice on how to starta conversation about end-of-life wishes:

If you can begin to talk about the endof life while people are healthy, you willhave made a significant contribution toyour family, and will discover importantinformation for yourself. Communicatingwith family includes understanding hopesand fears around illness and dying.

There are many events and openingsthat can help you get started. If you wantto start the conversation, think aboutsome of the issues and then watch for agood opportunity. You will be surprised at how many possibilities you find.Conversation triggers include:• The death of a friend or colleague• Newspaper articles about illness and

funerals• Movies

• Sermons• Television talk shows, dramas and

comedies• Financial planning• Annual medical checkups• Family occasions such as baptisms,

marriages and (especially) funerals• Magazines and books

Both personal experience and currentevents, as well as art and culture, offertrigger points for conversations. Once yourealize how many “conversation triggers”there are in daily life, you will be ready tostart your own conversation. And startingis the most important part. Too often,these conversations don’t take place untilthere is no time left for honest discussion,reflection and planning.

Copyright © 2005 National Hospice and PalliativeCare Organization. All rights reserved. Reproductionand distribution by an organization or organizedgroup without the written permission of the National Hospice and Palliative Care Organizationis expressly forbidden.

Starting the Dialogue: A Guide for Family Members

Fall 2005 17


may contact their local Area Agency onAging (AAA), which may be found in theblue pages of the telephone book underHuman Services. Such lawyers may also befound by visiting the National Academy of Elder Law Attorneys website atwww.naela.org, which lists a registry ofspecialists in elder law.

If you need a lawyer but are unable toafford the legal costs of preparing advancedirectives, some elder law attorneys work atreduced rates for seniors or persons withdisabilities unable to pay their usual fees.Call your local AAA for information andreferrals. AARP also offers its members andtheir spouses reduced fees for work con-ducted by attorneys specializing in elderlaw, via its Legal Services Network atwww.aarp.org/lsn. The Consumers’ Guide toLegal Help on the internet (sponsored by theAmerican Bar Association) also has resourcesfor obtaining reliable legal assistance atwww.abanet.org/legalservices/findlegalhelp/home.cfm.

Resources for Forms andAdditional Information

Forms for healthcare representatives andliving wills are available through the internetand through various agencies. CaringConnections, a program of the NationalHospice and Palliative Care Organization(NHPCO), is a national consumer engage-ment initiative that seeks to improve care atthe end of life. By visiting their website atwww.caringinfo.org, individuals maydownload and print their state’s advancedirectives (including forms to appoint a

healthcare representative and make a livingwill). This website provides information onstate-specific guidelines and sample formsfor setting up advance directives.

While these forms for advance directivesmay have different names in differentstates, their overall purpose remains thesame – in general, to appoint a healthcarerepresentative and create a living will. Thewebsite mentioned lists each state separately,and once selected, the documents may bedownloaded to your computer, along withcomplete instructions for filling them outand distributing them in accordance withstate law.

Supported by a grant from The RobertWood Johnson Foundation, CaringConnections provides free information onend-of-life care. In addition to advance careplanning, they also offer free resources oncaregiving, pain, financial issues, hospiceand palliative care, as well as grief and loss.Individuals may also contact NHPCO forinformation and free publications by calling(800) 658-8898.

The American Bar Association (atwww.abanet.org) has published a guideentitled, The Consumer’s Tool Kit for AdvanceHealth Care Planning. This helpful publicationassists with creating advance directives andprovides information on such topics as: howto select your healthcare representative, per-sonal priorities and spiritual values, conversational scripts to promote familydiscussion of advance directives, guide forhealthcare representatives, and additionalresources. This guide may be downloadedand printed by going to www.abanet.org/elderly/toolkit/home.html. The phone number

for the American Bar Association’sservice center is (800) 285-2221.

The Division of Bioethics at theMontefiore Medical Center/AlbertEinstein College of Medicine has a guideentitled, Making Health Care Decisions forOthers: A Guide to Being a Health Care Proxyor Surrogate. This guide may be found bygoing to http://eph.aecom.yu.edu/web/division_details.aspx?id=3 and clicking onthe guide name at the lower portion of thepage. If unable to access the guide, a copymay be obtained from MSAA by calling(800) 532-7667.

Another good resource is AARP’s website at www.aarp.com. End-of-life information may be found by going to the section labeled “Family, Home andLegal” and then selecting “End of Life”from the options on the left. AARP may also be contacted by calling (888) 687-2277.

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Shown below are Healthcare Proxy and Living Willsample forms from New York. Forms may be foundfor every state on the Caring Connections™ website atwww.caringinfo.org. (Copyright © 2005 National

Hospice and Palliative Care Organization. All rights reserved. Reproduction and distribution

by an organization or organized group without the written permission of the National Hospice and Palliative CareOrganization is expressly forbidden.)

Fall 2005 19


The Eldercare locator may be found atwww.eldercare.gov, or you may also reachthem by calling (800) 677-1116. Here youcan find state and county area agencies on aging. The site also offers resource information on reputable lawyers in yourarea that may charge lower fees or work pro bono (at no charge) to help seniors orpeople with disabilities to draft living wills.Legal advice may also be found through the National Academy of Elder LawAttorneys at www.naela.org or by calling(520) 881-4005.

Conclusion Gary Stein states, “People may recall

highly publicized cases, such as those ofKaren Ann Quinlan from New Jersey orTerri Schiavo from Florida, who were kept alive for extended periods of timethrough artificial means. Many people inthis type of condition would not want tolive indefinitely on breathing machines orthrough tube feeding. This preference hasbeen supported through many public opinion polls. Additionally, many mayworry that disagreements can tear theirloved ones apart.

“This scenario may be avoided by planning ahead. I cannot overstate theimportance of appointing a trusted familymember or friend to advocate on your behalf. In addition, expressing your wishesfor your care and then documenting these wishes in your advance directives,best ensures that you get the kind of careyou want.”

About the AuthorA former editor of The Motivator, ChristineNorris is now a freelance writer specializingin health and wellness issues.

Helpful Resources Heffelbower, Ruth, D. What Happens AfterWe’re Gone? Estate and Life Planning forFamilies in Which a Dependent Member Hasa Disability or Mental Illness. MennoniteMutual Aid, Advocacy, and EducationResources, 1996.

Kalb, Rosalind, C. Ph.D. Multiple Sclerosis:The Questions You Have. The Answers You Need. Demos Medical Publishing, LLC, 2004.

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Palermo, Michael. AARP Crash Course inEstate Planning: The Essential Guide to Wills,Trusts, and Your Personal Legacy. SterlingPublishing, 2004.

Pond, Jonathan. Your Money Matters: 21Tips for Achieving Financial Security in the21st Century, The Berkley PublishingGroup, 1999.

Helpful Websites for More Informationwww.americangeriatrics.org/education/forumwww.bazelon.orgwww.kidney.orgwww.medicalalert.orgwww.neriscience.comwww.uslivingwillregistry.comwww.caringinfo.org ◆

In the next issue of :Many of you may remember that werequested inspirational stories to be mailedin by our readers for a future article in TheMotivator. We just want to let you knowthat our cover story in the upcoming

Winter 2006 issue of The Motivator willhighlight the many inspirational stories wehave received. Please do not send any addi-tional stories at this time. Thank you to allwho sent in their stories!

IntroductionThe Consortium of Multiple SclerosisCenters (CMSC) held its 19th annual meet-ing this past June in Orlando, Florida. Thisfive-day conference is a collaborative effortbetween the CMSC, the InternationalOrganization of Multiple Sclerosis Nurses(IOMSN), and the Latin AmericanCommittee for Treatment and Research inMultiple Sclerosis (LACTRIMS).

Using the theme of “Navigating theWorld of Multiple Sclerosis,” this year’smeeting provided information about the MSdisease process and the immune system;basic fundamentals of MS care as well asadvanced concepts in care and research;progress in diagnosis and MS treatment;strategies for addressing disease progres-sion; and symptom management as well as rehabilitation for individuals affected by the disease.

The CMSC is the largest professionalMS organization in the world, seeking todevelop and sustain a specialized teamapproach to meet the needs of those withMS. The CMSC promotes a comprehensivemodel of MS care, striving to address all ofthe different ways in which MS affects indi-viduals who are diagnosed with the disor-der. This includes the physical aspects ofdiagnosis, disease progression, symptoms,and treatments, as well as the psychologi-cal, emotional, and social impact. Thegroup also looks at other important factors,

including family and care partner issues;along with the need for advocacy.

Its members are professionals from allareas of MS care. The list includes neurolo-gists, nurses, physiatrists, counselors, reha-bilitation professionals, psychologists, neu-roradiologists, clergy, neuropsychologists,educators, social workers, and others. TheCMSC’s annual meeting gives everyone anopportunity to learn about the latest find-ings in research, treatment, and rehabilita-tion, while sharing new ideas for variousstrategies to help individuals to cope withand overcome some of the challengeswhich MS presents.

Presentations and AbstractsPresentations at this year’s meeting

included:

• Fundamentals of MS care and manage-ment, from diagnosis to rehabilitation,encompassing: an overview of MS; dis-ease-modifying treatments and manag-ing relapses; MS rehabilitation; cogni-tion, swallowing, and speech issues; thepsychosocial impact of MS; and hope forthe future

• Lectures on: whether or not MS is aneurodegenerative disease; if MS is dif-ferent in Latin America; and the poten-tial for remyelination in MS

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CMSC Annual Meeting Recap

The Consortium of Multiple Sclerosis Centers’ Annual Meeting

• Symposia covering: the focus and accu-racy of diagnosing MS in 2005; the evi-dence shown by MS rehabilitation(including the effectiveness of energyconservation education and the manage-ment of communication problems);pregnancy and MS; the diagnosis andprognosis of primary-progressive MS;neurocognitive retraining in MS; alterna-tive medicine and MS; the evolution ofMS lesions; the history of MS; neuroprotection and neurogeneration;MS research and care in Latin America;along with understanding and treatingpediatric MS

• Workshops and mini-courses covered arange of subjects, from sleep disorders,rehabilitation, and legal issues, to theAfrican-American perspective, mobilityaids, and cognitive therapy, along withseveral other relevant topics

In addition to these sessions, morethan 140 abstracts were presented. Thesetoo covered a full range of topics relating toMS research, treatment, and ongoing care.

The “Powerpoint” or slide presenta-tions from many of the sessions, as well asthe abstracts from the scientific platformand poster presentations, are available tothe public by going to the CMSC’s websiteat www.mscare.org. Visitors may find theseby clicking on the 2006 upcoming meeting,then clicking on annual meetings, and thenscrolling down to and clicking on the 2005annual meeting. The direct address is:www.mscare.org/members.cfm?doc_id=35.

The MS Coalition’s Workshopfor Nurturing Children

Of particular interest was the work-shop entitled, “Nurturing Children: Copingwith Chronic Illness.” This was presentedby Lara R. Krawchuk, MSW, LSW, MPH,from the Conill Institute for ChronicIllness, and Helen Link Egger, MD, fromthe Duke University Medical Center. Theworkshop was planned through the newlyformed “MS Coalition,” a group of threeMS organizations – the CMSC, MSAA, andthe Multiple Sclerosis Foundation (MSF) –whose mission, by working together, is toincrease opportunities for cooperation andto leverage the effective use of resources forthe benefit of the MS community.

Members of the MS Coalition hadidentified a problem reported by many MSprofessionals, including doctors, nurses,rehabilitation therapists, and others. Asthese specialists came in contact with theirclients who have MS, and went about theirwork, a number of clients would oftenexpress their concern for their children andthe problems they were encountering.While these particular MS professionalswere skilled in areas of disease and symp-tom management or rehabilitation, they didnot have the background to offer informedfeedback to their clients about family coun-seling and the problems that their childrenmay be experiencing.

The Coalition decided to offer a work-shop at the CMSC’s annual meeting thatwould provide information about childrenlearning to cope with a parent’s illness. This

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24 MSAA Motivator


would give MS professionals the facts theyneeded to talk with their clients and pro-vide valuable advice. To follow is anoverview of this workshop.

The workshop began with informationabout depression in individuals with MS. Itnoted how individuals with MS were at anincreased risk of both depression and suicide.Symptoms and causes of depression werenoted, along with a reminder that the carepartner (often the other parent) may be atgreater risk of depression as well.

Certainly depression not only impactsone’s quality of life and emotional as well asphysical health, but can also impact one’schildren. Depression can limit a parent’sphysical and emotional capacity to parentwith consistency and patience, which canhave a significant effect on a child’s cognitive, social, and emotional development.Getting the adequate treatment for depres-sion can greatly improve the situation anddiminish or avoid some of these issuesrelated to depression.

Emotional reactions that children mayexperience when a parent is sick includeguilt, anger, fear and anxiety, embarrassment,sadness, and feelings of helplessness andneglect. Unfortunately, few studies havebeen conducted to determine the effects ofparental MS on child adjustment. Theeffects of maternal depression, however, aredocumented; maternal depression can causeincreased rates of behavioral problems,social and emotional maladjustment, and adeficit in cognitive functioning.

Disorders that children may be experi-encing were explained. These includedsymptoms of childhood depression, psychi-

atric or anxiety disorders, attention deficitdisorder, and oppositional behaviors.Parents need to know that these occur inchildren whose parents have no illness –and MS is often not the cause. Any childexhibiting unusual behavior should be seenby a physician, evaluated, and given treat-ment if needed, to help improve the child’semotional, mental, and physical wellbeing.

Parents can help their children by: pro-viding a safe and loving home; developing agood relationship which encourages goodcommunication when upset; teaching theimportance of accepting limits; and seekinghelp when needed. Educating one’s childrenabout MS and depression (through age-appropriate conversation) and maintainingan honest and open relationship helps tominimize children’s worries and fears.

For More InformationThe workshop described above was

just one of many informative presentationsthat were held at the CMSC’s annual meeting.These were all aimed at helping the MSprofessional to understand all aspects of theillness, from research and treatments tosocial needs and family issues, enablingthese MS specialists to play an importantrole in providing comprehensive MS care.As mentioned earlier, slides of these presen-tations may be viewed by going to theCMSC’s website at www.mscare.org.

We were unable to include more infor-mation in this issue from the many presen-tations given at the CMSC's annual meet-ing. When possible, we will try to incorpo-rate some of this valuable information infuture articles of The Motivator. ◆

Fall 2005 25

Medicare Part D

The Medicare Part D Prescription DrugProgram officially begins on January 1, 2006.Anyone enrolled in Medicare is eligible. Thisprogram is voluntary for most Medicarerecipients. You do not need to participate ifyou have a better plan already in place oravailable to you, whether through youremployer or other health insurance provider.If you receive Medicare as well as Medicaid,you must enroll in the Medicare Part D planto keep your prescription drug coverage.

Individuals who enroll in Medicare PartD must choose one of the several privateprescription drug plans that Medicare hasapproved. These plans meet certain mini-mum coverage criteria, but vary in terms ofwhat drugs they cover and how much theypay – so individuals need to look at theiroptions carefully.

In general, participants will be requiredto pay a small monthly premium (approxi-mately $32) as well as a $250 deductible,although some plans will waive thatdeductible. Participants must then pay 25percent ($500) of the next $2,000 in eligibledrug purchases. A gap in coverage requiresthe participant to pay the next $2,850 (ifapplicable) in eligible drug purchases, beforethe plan kicks in again with 95 percent cov-erage (known as the Catastrophic Benefit).

Individuals who are on Medicaid willonly need to pay a small co-payment fortheir prescription drugs, and some states willprovide coverage through Medicaid to coverthe cost of that co-payment. Individuals who:are not on Medicaid, receive a limited income

($14,355 for a single person; $19,245 for amarried couple living together), and havelimited resources, may qualify for extra helpthrough the Social Security Administration.

Please note that Medicare Part D hasstrict deadlines that must be followed.Individuals who are eligible to enroll inMedicare Part D and wait to enroll after theMay 15, 2006 deadline may be given higherrates to pay as a penalty. This penalty may bewaived if you have prescription drug cover-age through an employer-sponsored plan.

Deadlines are:November 15, 2005: Enrollment beginsfor Medicare Part D.January 1, 2006: Drug coverage begins forthose who enrolled with the new program.May 15, 2006: Last day to enroll without apenalty, unless you qualify for an excep-tion; those who have yet to begin Medicaremay enroll in the new drug program whenthey initially sign-up for Medicare.

For more information, please visit orcall: AARP at www.aarp.org/medicarerx,(888) 687-2277; Medicare atwww.medicare.gov, (800) 633-4227, TTYat (877) 486-2048; Social SecurityAdministration at www.socialsecurity.gov,(800) 772-1213, TTY at (800) 325-0778;and State Health Insurance AssistanceProgram (SHIP) at www.shiptalk.org tofind the toll-free phone number for yourstate. Please call MSAA’s Helpline at (800)532-7667 if you need further assistance.

New Medicare Drug Program

Q: I am not able toundergo an MRIbecause of my claustrophobia. Ihave tried a varietyof sedatives whichhaven’t worked. Mydoctor won’t allowme to go totallyunder anesthesia,

but I don’t know why I couldn’t do this.What options are available that you wouldsuggest?

A: When doctors recommend a test (ortreatment), they must weigh two issues: thepotential benefits versus the potential risks.What are the benefits and risks of an MRI?While the MRI has been very helpful indiagnosing of MS, its role as a “routine” testto follow the progress of the disease is notuniformly accepted. In fact, one group ofMRI and MS experts did not recommend“routine” MRI’s for MS patients. Therefore,ordering an MRI may not be indicatedunless the doctor is considering a change intreatment and MRI results would influencethat decision.

Since the value of a “routine” MRI is notfully established, what are the risks? Whilethe risks of an MRI are minimal, the risksassociated with anesthesia are worrisome.Some MS patients do not tolerate anesthe-sia well. Therefore, why expose the patientto the risk of anesthesia unless the testresults are going to be extremely valuable?

Apparently, your doctor may not feel thatthe potential MRI value warrants your riskof anesthesia.

What are your options? An “open” MRI,which does not require being placed “in atube,” is an option. However, the MRIresults from “open” MRI’s are not asdetailed as the regular MRI results.Therefore, the limited value of “routineopen MRI” may not justify the test.

In my experience, sedatives are helpfulin reducing anxiety caused by claustropho-bia. I recommend that you have anotherdiscussion with your doctor (maybe in con-junction with an anesthesiologist), to assessthe potential value of the MRI and the risksof anesthesia. The result may be anothersedative that you have not yet tried (versusanesthesia) if your doctor believes that anMRI is crucial to your care.

Q: I was diagnosed with MS 13 years ago.Five years later, I suddenly developedsevere allergies, mainly to food, that resultin the itching of my eyelids; itching,swelling and welts all over my face andnow my chest; as well as itching and peel-ing of skin on my fingers to the point thatthey bleed. After seeing many specialists,none can determine the cause or cure.Can this be related to MS?

A: Multiple sclerosis does not “cause” aller-gies. However, MS and allergies, are bothautoimmune diseases and people with oneautoimmunity are at greater risk for a second

26 MSAA Motivator

by Dr. Jack BurksVice President & Chief Medical Officer for MSAA

autoimmune disease. As you have discovered,food allergies are a common cause of skinreactions. I assume that you have consultedan allergy specialist and discontinued anyof the foods that could aggravate your con-dition, and that you continue to monitorany other foods for possible reactions.

Environmental triggers are also common,and these may include pets, plants, molds,dust, laundry detergents, and soaps, toname a few. Through lab work (skin orblood-sensitivity tests) and sometimes test-ing each item separately (by removing andthen bringing back the potential allergen),individuals suffering from these types ofallergies need to make whatever modifica-tions necessary to limit their exposure tosuch allergens.

Medications can also cause allergic reac-tions in certain individuals. These includeboth the disease-modifying treatments forMS, as well as medications used to treat thedifferent symptoms of MS. If your physi-cian suspects that medications may be thecause, he or she may have you stop andlater restart each drug (if needed) to see ifany are causing the reaction. Please notethat any changes to one’s treatment regimenshould only be done under the advice and

supervision of his or her doctor.Lastly, when I evaluate MS patients with

skin allergies, I test for systemic lupus ery-thematosus (lupus), especially in women.Blood tests can usually diagnose lupus,which can mimic MS symptoms. ◆

Jack Burks, MD, is a neurologist who specializes in MS.

He is vice president & chief medical officer for MSAA, as

well as president of the Multiple Sclerosis Alliance.

Additionally, Dr. Burks is a clinical professor of medicine

in neurology at the University of Nevada School of

Medicine in Reno, Nevada, and a member of the

Medical Advisory Board of the National MS Society. He

has edited two textbooks on MS, and in the 1970s, Dr.

Burks established the Rocky Mountain MS Center in

Colorado, one of the nation’s first comprehensive MS centers.

To Submit Questions to Ask the Doctor…

Many of these questions were submitted byreaders. If you have a question that you wouldlike to ask, please submit your question to:

MSAAQuestions for Ask the DoctorAttn: Andrea Borkowski706 Haddonfield RoadCherry Hill, New Jersey 08002

Readers may also send in questions via emailto [email protected]. Please be sureto write “Ask the Doctor” in the subject line.

Ask the Doctor

Fall 2005 27

MSAA IS ONLINE!Visit MSAA’s website at

www.msaa.comfor resources, program information,

news updates, and much more!

Fall 2005 31

Tysabri® UpdateGood news for patients previously onTysabri… no new cases of PML

Biogen Idec and Elan Corporation, mak-ers of Tysabri® (natalizumab), have conducteda safety evaluation of patients who previouslytook Tysabri. Any unusual responses to thedrug are being investigated and reported to theFDA. Three cases of progressive multifocalleukoencephalopathy (PML) have resulted intwo deaths so far in patients on Tysabri. PMLis an often-fatal brain disorder thought to becaused by the activation of a virus known asthe “JC Virus.”

According to a press release from BiogenIdec and Elan, dated August 9, 2005, no newconfirmed cases of PML have been discovered.Almost 2,000 MS patients from clinical trialsparticipated in the safety evaluation. With noadditional cases of PML among patientsexposed to Tysabri, Biogen Idec and Elan aretaking preliminary steps to restart clinical trialsin MS.

For more information, please see “RecentNews” on MSAA’s website at www.msaa.com,or call MSAA at (800) 532-7667.

Interim Results fromCampath® TrialEncouraging results although some adverse events

In September 2005, GenzymeCorporation and Schering AG Germanyannounced the interim results of a phase II

trial comparing Campath® (alemtuzumab)with Rebif® (interferon beta-1a). These resultscame from an efficacy (looking at effective-ness) and safety interim analysis, following thecompletion of one year of treatment in aplanned three-year trial with active relapsing-remitting MS patients.

Campath is a humanized monoclonalantibody that binds to a specific target(CD52) on cell surfaces, directing the body todestroy potentially damaging cells withinthe immune system. For these studies,Campath is administered in annual intra-venous (directly into the vein) infusion reg-imens (a five-day course of doses is given thefirst year; a three-day course of doses isgiven during the second year and beyond).

According to the companies’ announce-ment, the one-year interim analysis showed a75 percent reduction in relapse rate and a 60percent reduction in the risk for progression ofclinically significant disability for individualstreated with Campath, as compared to thosereceiving Rebif. Serious adverse events, howev-er, occurred in two participants on Rebif, fourparticipants on the low dose of Campath, andfive participants on the high dose of Campath. Three documented cases of idiopathic throm-bocytopenic purpura (ITP) occurred in theCampath groups (causing a low platelet countwith the potential for abnormal bleeding). Oneof these three cases resulted in death; the othertwo individuals affected are responding totreatment. Two participants taking Campathdeveloped Graves’ Disease (a treatable thyroidcondition). The companies are not disclosing

details about the adverse events which wereexperienced by six other study participants,except to say that none of the adverse eventswere unexpected and that no cases of progres-sive multifocal leukoencephalopathy (PML)have occurred.

The companies are implementing safetyprovisions and have consulted with the UnitedStates Food and Drug Administration (FDA).The companies have temporarily suspendedthe dosing of Campath in this study. MSAA Vice President and Chief MedicalOfficer Dr. Jack Burks explains, “Campath isnot FDA approved at this time for the treat-ment of MS. While these early results areencouraging, patients needing treatment todayshould not delay being treated with currentlyavailable therapies, if advised by their treatingMS neurologist.”

For more information please see “RecentNews” on MSAA’s website at www.msaa.com,or call MSAA at (800) 532-7667.

Important Findings PresentedTo follow are highlights from some of theeducational and poster sessions given at theAmerican Academy of Neurology’s AnnualMeeting held earlier this year. This is a con-tinuation of the cover story on the sametopic in the Summer 2005 issue of TheMotivator. As space allows, additional summaries may appear in future issues.

Interferons and Pregnancy…Over the course of eight studies with

3,361 women and 69 pregnancies, interferonbeta-1a administration is still contraindicated

and not recommended for women who arepregnant or are trying to become pregnant.While the majority of pregnancies have thepotential to go full-term and deliver a healthybaby, this report showed a higher incidence oflost pregnancies (when receiving interferonwithin two weeks or less of conception). Untilmore data is available, patients are “stronglyadvised” to stop interferon treatment prior tobecoming pregnant.

MRI as an indicator of continued disease activity…

Through the OPTIMS multi-center trial,investigators concluded that a single activeMRI scan after six months treatment is the bestindicator of persistent disease activity in thosetreated with Betaseron. They found that apatient with an active scan at six months willprobably remain active for the entire first yearof treatment, and such patients should be con-sidered for a change in treatment, such as anadjustment in dose or drug selected. Increasingthe dose of Betaseron by 50 percent led to adramatic decrease in this MRI activity. (Readersare cautioned not to alter their treatment ordose unless under the guidance of their physi-cian.)

Treatments delay progression of MS…A French observational study of 1,609

individuals with RRMS suggests that disease-modifying treatments begun prior to reachingany noticeable disability (having an EDSS ofthree or less) may delay the progression oflong-term disability. The mean number ofyears for follow-up was 13, with some patientsbeing followed for more than 20 years.

32 MSAA Motivator

Research News

Copaxone restores immune function…A small study in Boston, Massachusetts

was conducted to see how glatiramer acetate(Copaxone) affected CD4+ and CD25+ T-cells,which help to regulate the immune system.Researchers hypothesized that individuals withMS may have a loss in terms of frequencyand/or function of these cells, which may con-tribute to a lack of immunoregulation observedin MS patients. Five of the seven MS patientsin the study showed impaired function of thesecells. Function was largely restored threemonths after beginning treatment with glati-ramer acetate, indicating that this therapy mayrapidly improve regulatory CD4+ and CD25+T-cell function early in the course of treatment.

New treatment for PBA…A study was conducted to assess the safe-

ty and efficacy of AVP-923 (Dextromethophan/Quinidine) for the treatment of pseudobulbaraffect (PBA) in MS patients. PBA is associatedwith some neurological disorders and is char-acterized by uncontrolled episodes of laughingand crying. Study results indicate that AVP-923is safe, well-tolerated, and highly effective intreating individuals with MS who experiencePBA.

Oral MS treatment trial encouraging…An open-label study was conducted to

evaluate the safety and effectiveness of oralfumaric acid in patients with RRMS. This drugis presently used for psoriasis, which may havea similar inflammation process to MS. Thedrug is thought to suppress inflammation bypromoting Th2-type cytokine profile (a chemi-cal produced in the body that works to sup-

press inflammation). According to theresearchers of this study, oral fumaric acid sig-nificantly reduced the number and volume ofgd-enhancing lesions in MS patients during the70 weeks (approx. one year and four months)of treatment; all patients in the trial remainedclinically stable. No adverse events werereported. These findings demonstrate that fur-ther studies of oral fumaric acid in the treat-ment of MS are warranted.

Bone marrow transplants help six patients…A three-year follow-up of a Canadian

phase II trial using bone marrow transplanta-tion showed clinical stabilization or improve-ments in the six patients who participated.These patients had aggressive MS and eachunderwent immunoablation (a complete eradi-cation of the immune system to halt ongoingMS immune-mediated damage) followed byautologous (self) stem-cell (bone-marrowderived) transplantation. Those patients whoexperienced improvement had increased visualand motor capabilities. MRI studies failed todetect any new disease activity in any of thepatients.

Ginkgo biloba may improve attention…In a pilot study, ginkgo biloba was given

to individuals with MS experiencing cognitivedysfunction. Participants received either120 mg of ginkgo biloba twice daily, or aplacebo, for 12 weeks. Results suggest thatginkgo biloba may be effective in improvingattention for those with cognitive dysfunctionas a result of MS. More studies are neededto confirm this finding.

Fall 2005 33

Research News

Continued on page 35

Volunteers Make a World of Difference

Each year MSAA strives to serve moreMS clients in more places than ever before.Greatly aiding our ability to meet thesechallenges are the thousands of supportiveand dedicated volunteers who have com-mitted their time and resources to helpthose with MS all across the country.

One of our proudest accomplishmentsover the past few years has been the con-tinued growth and development of newsupport groups. These talented and hard-working support group leaders and theiractive members have helped to buildstrong connections with fellow MS clientsand their families, raise public awarenessand understanding, assist with programsand services, coordinate therapy and exer-cise classes, and conduct vital fund raisers,including the “Sweeten the Season” cardcandy cane sales program – which is cur-rently underway and in need of volun-teers. More recently, numerous supportgroups have also taken an active role inhurricane relief efforts for those affectedby Katrina and Rita.

Four new volunteer programs havealso enjoyed great success this past year.Launched in January, Resource Detectivesis a group of volunteers who use theirskills and ingenuity to research (via theinternet and/or telephone directories) localagencies and organizations that provideresources which can assist the MS commu-nity. These beneficial resources often

include information on prescription assis-tance, housing, transportation, and otherlocal services. The information is main-tained in a growing national database andpassed on to MS clients and families, asrequested through our client servicesdepartment and regional offices. This vol-unteer program also enables our staff toquickly respond to client requests andhandle a larger volume of calls on the toll-free Helpline.

Another new volunteer opportunity isthe role of Public Education Ambassadors(PEA). A PEA volunteer represents MSAAat various public events, which includework place giving campaigns, health fairs,and regionally organized public educationevents. These ambassadors strive toinspire people’s compassion to make a gift to our worthy organization, as well as inform others about the programs andservices MSAA provides to individualswith MS and their care partners. As of this fall, we have enlisted volunteerambassadors in several large citiesthroughout the United States.

In addition to these new and excitingprograms, MSAA is extremely proud of thecontinuous support offered by our growingnetwork of professional volunteers. Thesevolunteers generated nearly 1,000 hours ofsupport through the summer, assisting withthe cooling, equipment, MRI, lendinglibrary, and home modification programs,as well as database support and otheradministrative activities.

34 MSAA Motivator

MSAA would like to take this opportu-nity to publicly thank all those who havegraciously and so admirably volunteeredtheir time, skills, effort, and support toindividuals with multiple sclerosis, theirfamilies and care partners, and our organi-zation. If you or anyone you know wouldlike to volunteer or learn more about theseopportunities, please contact MalcolmFriend, director of national volunteer services, at (800) 532-7667, ext. 8 orwww.msaa.com/volunteer.html. ◆

Fall 2005 35

Program Notes

Fall 2005 35

Methotrexate may help progressive MS…An open-label, 18-month, phase I trial of

the intrathecal administration (injectiondirectly into the spinal fluid) of methotrexate(ITMTX) was conducted with 100 patientswho had severe MS. Looking at safety and tolerability as the primary objective, andefficacy as a secondary objective, the trialenrolled 74 participants with RRMS or SPMSand 26 with PPMS. Each received a minimumof two pulsed doses via lumbar puncture;most received four doses. Results indicatedthat the treatment was well tolerated andsafe; no one discontinued treatments due toside effects; and 96 percent of the patientsstabilized or improved in terms of their EDSSscores. Four patients, all with PPMS, continuedto worsen in their EDSS scores. No MRIstudies were mentioned. Phase II, double-blind studies are needed to confirm the safety,tolerability, and efficacy of ITMTX. ◆

Research News

Continued from page 33

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36 MSAA Motivator

Dealing With DepressionWinter is fast approaching, and with

its long nights, cold temperatures, and grayscenery, some may find themselves suffer-ing from what many call “the blues.” Thisissue’s Symptom Awareness column is anoverview on depression, taken from thecover story in MSAA’s Winter 2003 issue ofThe Motivator.

If you tend to feel down, you are notalone! Depression can affect anyone,regardless of income, age, gender, nationali-ty, and lifestyle. Nearly 10 percent of theadult American population suffers from adepressive illness during the course of anaverage year.

Depression is a very treatable illness,and many can enjoy a far greater quality of lifejust by seeing a professional and getting thehelp they need. Depression is often besttreated through a combination of medicationand psychotherapy. In many circumstances,depression may be significantly reduced ina relatively short amount of time.

While anyone is susceptible to depres-sion, individuals with MS experience amuch higher incidence. The negativeeffects of depression on MS are compound-ed by the fact that depressed individualsmay not comply with taking their pre-scribed medications, and this could causetheir condition or other symptoms to wors-en. A portion of depressed individuals areat risk of suicide, and this too is greater forindividuals with MS.

SymptomsWhen diagnosing a major depressive

episode, physicians look for five or more ofthe following nine symptoms to be presentduring the same two-week period. Asnoted, a portion of the symptoms listed arealso symptoms of MS, which means theymay not necessarily indicate depression forsomeone with MS. These symptoms may bereported by the patient or observed by oth-ers, and in general, occur nearly every day.

Symptoms of depression only:• Depressed mood for most of the day • Greatly reduced interest or pleasure in

all, or almost all, activities most of the day • Significant weight loss or gain, or

change in appetite • Feelings of worthlessness or excessive

guilt • Recurrent thoughts of death or

thoughts/plans/attempts of suicide Symptoms of depression that are also symptoms of MS:• Difficulty sleeping or excessive sleeping • Significant restlessness or slowing down

as observed by others • Fatigue or loss of energy • Diminished ability to think, concentrate,

or make decisions

Treating DepressionThe first line of medications in treating

depression is a class of drugs known as“selective serotonin reuptake inhibitors”(SSRIs). These include Fluoxetine

Fall 2005 37

(Prozac®), paroxetine (Paxil®), sertraline(Zoloft®), and venlafaxine (Effexor®).Additional antidepressants that are consid-ered to be a “first line of treatment” fordepression are bupropion HCL(Welbutrin®), nefazodone (Serzone®), andtrazadone (Desyrel®). Other drugs, such asanticholinergics or tricyclic antidepressants,as well as monoamine oxidase inhibitors(MAOIs), may be options for people whodo not respond to the first line of medica-tions already mentioned.

All of these agents may be given alone,or various combinations may be prescribed.Antidepressants do not have an immediateeffect, and typically require between four toeight weeks before reaching their maximumlevel of benefit.

Sometimes individuals want to stoptheir antidepressant medication as soon asthey feel better, thinking they no longerneed it. This type of treatment should becontinued for at least four to nine monthsto prevent depression from returning, andmedication for more severe conditions mayneed to be continued indefinitely.Individuals taking antidepressant medica-tion should never alter their dose, stop tak-ing their medication, or combine it withany other drugs, without first consultingtheir doctor.

Studies are ongoing to determine if anextract of the herb St. John’s wort may havean effect on milder forms of depression. St.John’s wort, however, along with other herbalsupplements, can have dangerous sideeffects when taken with other medications.Individuals need to inform their doctor if

they are taking any type of herbal supplement.Psychological counseling is the second

and equally important component for treatingdepression. Individuals suffering from thiscondition need to work with a psychiatrist,psychologist, or social worker to discusstheir thoughts, behaviors, and outlooks.These medical professionals assist peoplewith their coping skills and help individu-als to better adjust to their situations andultimately feel better.

MSAA’s Vice President and ChiefMedical Officer Jack Burks, MD, specializesin the treatment of MS and stresses theimportance of treating depression. Dr.Burks explains, “What causes depression inMS is not an easy question to answer.Having MS certainly adds stress to one’slife, and depression can result from dealingwith stress. But depression can also resultfrom medications, and damage to myelincould be involved. Other medical conditions,such as thyroid disease and urinary tractinfection, can cause depression as well. Anindividual can even appear euphoric whenactually suffering from depression.

“For these reasons, I always look at thepatient’s entire picture. After making whateverchanges are necessary to existing medicationsand conditions, using a combination ofpsychotherapy and medication is the mosteffective means of treatment.

“Psychotherapy is an integral part oftreatment. Examples of therapy optionsinclude group, peer, family, couple, andindividual counseling. Educating familymembers is important so they understand

Symptom Awareness

Continued on page 45

he path of destructionHurricane Katrina imposedupon Alabama, Florida,

Louisiana, and Mississippi, causes meto wonder how individuals with mul-tiple sclerosis, or any disability, couldsurvive. I have MS, and watching people pushed through filthy water inwheelchairs, places the responsibilitysquarely on my shoulders to get serious.

My thinking is not fatalistic but realistic.I don’t live in a potential hurricane path,but in Washington State we have volcanoes which have erupted, earth-quakes, forest fires, and flooding. Otherstates live with the reality of tornadoes andhail storms, to name a few. We all mustconsider what resources we rely on regularlyand determine how they might be impactedby a disaster.

My heart aches for those affected byKatrina and it awakens my need to prepare.My experience with the Girl Scouts, whosemotto is “Be Prepared,” and my Red Crosstraining, along with my limited mobility,should all compel me to plan, yet I havenot. If you are like me, are dependent onmedications, have children and/or pets…how would you respond if you were told to evacuate?

Moving Past Fear to Take Control

“The act of planning for an emergencyor disaster can ‘paralyze with fear’ eventhose without unique planning needs,” saysElizabeth Davis, managing director of EAD& Associates, LLC in New York City. Thiscompany provides expertise in emergencymanagement and special-needs planning, toensure that people with disabilities are pre-pared for disasters and their consequences.

“It is assumed to be an uncomfortableprocess and, therefore, one often avoided. Itis our obligation, however, to plan for ourown survival to the best of our ability,”Davis adds. According to the NationalOrganization on Disability, America's com-munity with disabilities includes 54 millionpeople, so special needs are widespread.The sheer numbers should compel us all toplan, based on our needs.

Davis encourages us by saying, “When

38 MSAA Motivator

EMERGENCYPREPAREDNESSBY ELIZABETH THOMPSON

T

a person with a disability faces certain reali-ties, such as requiring a greater level ofreliance during extraordinary times, we alsofind that we have survival solutions that weuse every day, which can be transformedinto planning tools. Planning can empowerus to get past fear and find ways to takecontrol of our circumstances.” In additionto her professional experience, on a personallevel, Davis is well aware of some of thechallenges faced by individuals with MS.Davis has a strong bond with a close relative,who has MS and continues in an active career.

Unimaginable Disasters areSigns of the Times

No one expected the tragedy seen onSeptember 11, 2001, as high-jacked planesflew into the Twin Towers, the Pentagon,and a field in Pennsylvania. And amongstother natural disasters within our country,such as earthquakes, hurricanes, tornadoes,floods, and mudslides, the tsunami that hitIndonesia and surrounding countries inDecember 2004 – killing more than a quar-ter-million people – was beyond anythingwe ever imagined. Despite such disasters,many were not prepared, had no way toevacuate, or did not seriously heed warningswhen the powerful Hurricane Katrina hit.

Ed, 47, is the battalion chief of a fire sta-tion in Florida. Residing in Vero Beach,Florida, Ed has 25 years experience in fireservice. He was diagnosed with MS in 1996.

Ed says that he takes care of people attheir worst possible time and having MSgives him added sensitivity. “You can livewith this disease and contribute to society. I

am very fortunate because MS does notlimit what I can do.”

Last year, Ed was on duty during hur-ricane season. Not being home for twoweeks after each storm, along with the stress,takes its toll. “I am asked how I dealt withthe stress… I didn’t have time for stress. Iwas constantly on the go,” Ed recalls. Atone point, his crew finally put him to bedafter going for three days with no sleep.

Margaret, 59, has MS and has lived inMasaryktown, Florida for 20 years. “Lastyear there were four hurricanes. When theauthorities say to get out of here, I’m out ofhere,” states Margaret. “I have had my fillof hurricanes. I plan to move to myIndiana hometown within the year.”

Margaret’s advice for others with MS isto register with his or her Emergency

Fall 2005 39

Health and Wellness

Management Division of the Department ofPublic Defense and Homeland Security – ifthis service is available in your area. (Forcontact information, please refer to theresource section at the end of this article.)

“If you have medical needs, as soon asthings are looking bad, someone will cometo take you to a place of safety, where doc-tors, nurses, and medical equipment areavailable,” Margaret says. “Don’t be a hero.Get out of there and live.”

Residents should check with their localcommunity government to see where a des-ignated shelter is in the event of an emer-gency. Should a nearby shelter not be avail-able, residents may become part of thesolution by working with local officials toensure that a program is in place.

All Agree: Evacuate When Advised

When Ed visited special-needs sheltersafter the storms, many said they wouldnever stay for another storm. “Anyone whohas MS needs to prepare andhope such preparation is neverneeded. Listen to the expertsand leave. Make sure you takeall your meds,” Ed urgentlyadvises.

Will, 54, of Jackson,Mississippi, agrees with Ed andMargaret, stating, “When civilauthorities say, ‘take refuge,’you should take refuge. Weknow that some people whohave MS have limited resources,but most of us have a card list

to use when we need help.” Will is referringto a holiday card list that many of us haveand could access for our personal supportsystem of friends, neighbors, and relatives.

The center of Hurricane Katrina camewithin 60 miles of Will’s home beforechanging course. “We were hit with thesidewall of the storm,” Will explains. “Wesaw the worst of a category one’s 65-90mph winds for six-to-eight hours.”

Will’s family was without electricity forfour days. Will lost his ability to walk as aresult of heat and stress. His decision tostay home surprised him since he was for-merly the regional director of health andsafety for a communications company. “Theidea to ‘wait and see’ is not always the wayto do it,” Will concludes.

Knowledge is PowerThe Center for Disability Issues and

the Health Professions’ 44-page guide forpeople with disabilities, EmergencyEvacuation Preparedness: Taking

Responsibility for Your Safety,can be found at the followinglink: www.cdihp.org/ prod-ucts.html#eeguide and select-ing one of the four versions to download and view or print. Individualswithout internet access maycontact MSAA’s Helpline at(800) 532-7667 for moreinformation. This guide isextremely thorough andaddresses virtually every aspectof emergency planning for

40 MSAA Motivator

Health & Wellness

42 MSAA Motivator

Health & Wellness

individuals with disabilities and other activ-ity limitations. Through questions, explana-tions, and true stories of individuals withdisabilities who needed to evacuate, thisguide specifically instructs readers aboutthe importance of preparation; how to eval-uate their own needs; and exactly whatthey need to do to prepare. It also includes evacuation options, references, andresources, as well as directions for estab-lishing a personal support network andcompiling one’s complete emergency health information.

The Federal Emergency ManagementAgency (FEMA) offers free, online, inde-pendent-study courses. According to Davis,a course devoted to special-needs planningwill be available soon. (For contact infor-mation, please refer to the resource sectionat the end of this article.)

According to Web MD, a disaster kit should include the following:• A battery-powered radio • Flashlights with extra batteries• Three-days worth of non-perishable

food and water for each householdmember, plus a manual can opener

• One change of clothing and footwear foreach household member

• Blankets or sleeping bags • Sanitary supplies, such as toilet paper,

soap, disinfectant, bleach, personalhygiene items, and garbage bags

• Plastic sheeting and tape• Personal identification, cash (including

coins), traveler's checks, and/or a credit card

• Emergency contact information and familydocuments in waterproof containers

The American Red Cross offers the following tips for individuals who use mobility aids:• Store emergency supplies in a backpack

attached to your walker, wheelchair, or scooter.

• Store mobility aids close to you.• Keep heavy gloves in your supply kit for

wheeling or making your way over glassand debris.

• For a motorized wheelchair or scooter,have an extra battery. Check with yourvendor to learn if you can charge yourbattery by either connecting jumpercables to a vehicle battery or connectingbatteries to a converter that plugs into avehicle’s cigarette lighter. Caution:Charge only one battery at a time.

• Keep a patch kit to repair flat tires and/orkeep an extra supply of inner tubes.

• Store a lightweight, manual wheelchairif available.

• If you spend time above the first floor ofa building, plan and practice using alter-nate methods of evacuation.

• Wheelchairs may need to be left behindduring an evacuation. If you cannot usestairs, familiarize yourself with liftingand carrying techniques that work foryou. Be prepared to give brief instruc-tions on how others can move you.

• Create a list of your personal supportnetwork of friends, neighbors, relatives,and disability contacts/services; storethis information in a safe place (and

keep a copy in your “disaster kit,” men-tioned previously).

Other helpful tips:• Particularly for individuals who may

have communication or cognitive problems, wearing a medical ID braceletor necklace can be crucial should theybecome separated from family orfriends. For more information, readersmay visit www.americanmedical-id.com/home/?usersession or call (800) 363-5985.

• Laminate a card listing your full name,medications, allergies, special needs, acontact person, and physician namesand numbers; keep this in a place where friends, family, or emergency personnel could easily spot it in an emergency.

• Keep extra sets of important documents,i.e., insurance papers, birth certificates,financial information, etc., and possiblycopies of a few irreplaceable photo-graphs, in a fireproof box at home, aswell as in a different, secured location(such as a safety-deposit box at the bank).

• Arrange for a contact person who lives at a different location for familymembers to call if separated during an emergency.

• Make arrangements for your pets (seeaccompanying story on page 50).

Resources• For a state-by-state listing of links with

the Department of Public Defense andHomeland Security, EmergencyManagement Division, visit

www.dhs.gov/dhspublic/display?theme=14&content=3283 or call (202) 282-8000.

• For the National Organization onDisability’s links and information aboutdisaster information and people withdisabilities, visit www.nod.org/emergencyor call (202) 293-5960; TTY users maycall (202) 293-5968.

• The Department of Homeland Security'semergency preparedness informationwebsite may be found at www.ready.govor by calling (800) 237-3239(800-BE-READY); TTY users may call (800) 464-6161.

• To find your local Red Cross chapter, go to www.redcross.org. For animalsafety, visit www.redcross.org/services/disaster/beprepared/animalsafety.html.

• The International Committee of the Red Cross’ family links website helps toconnect those separated by conflict ordisaster to find information about theirloved ones in order to restore contact.To reach this committee, visit www.familylinks.icrc.org/home.nsf/home/webfamilylinks or call (877) 568-3317 (877-LOVED-1S).

• For information about planning for yourservice animal, visit www.hsus.org/hsus_field/hsus_disaster_center or call(202) 452-1100.

Fall 2005 43

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Fall 2005 43

44 MSAA Motivator

Health & Wellness

• For information regarding telecommuni-cations for the deaf, readers may go towww.tdi-online.org, or call (301) 589-3786 for voice service; TTY users maycall (301) 589-3006.

• The American Foundation for the Blindmay be found at www.afb.org or by call-ing (800) 232-5463 (800-AFB-LINE).

• For Easter Seals’ s.a.f.e.t.y. first program,please visit www.easterseals.com/site/PageServer?pagename=ntl_safety_first orcall (866) 237-2335 (866-BE-SAFE-5).

• For the ADA Guide for LocalGovernments’ document titled, MakingCommunity Emergency Preparedness and Response Programs Accessible to Peoplewith Disabilities, readers may visitwww.usdoj.gov/crt/ada/emergencyprep.htmor call (800) 514-0301; TTY users maycall (800) 514-0383.

• FEMA may be reached by visitingwww.fema.gov. To apply for assistanceduring a crisis, call (800) 621-3362(FEMA); TTY users may call (800) 462-7585.

• The website for EAD & Associates, LLC may be found by visitingwww.eadassociates.com or by calling(718) 330-0034 (both voice and TTY).

Davis adds, “We are in the best positionto know our own abilities and limitations.This is why we must take responsibility andplan. But this also means planning with astrong support network both in and out ofour region. Review the plan regularly,including any time it has to be activatedand if any condition changes. With practice,we increase our ability to survive exponen-tially. And a plan is only as good as the lasttime it was practiced.” ◆

Elizabeth Thompson is a freelance writer and a volunteer staff member on msworld.org.She was diagnosed with MS in December 1987after being symptomatic since 1970. A resident of Monroe, Washington, she can be reached at [email protected].

MSAA NeedsVolunteers!Volunteering assignments include:• Public Education Ambassadors

• Support Group Leaders

• Professional Volunteers (including lawyers, occupational therapists, and physical ther-apists)

• Independent Volunteer Fundraisers

• Resource Detectives

• Sweeten the Season Ambassadors

Please contact Malcolm Friend at MSAA Phone: (800) 532-7667, ext. 8Email: [email protected] Website: www.msaa.com/volunteer.html

(When sending an email, please include areas of interest for volunteer work and any contactinformation)

Fall 2005 45

Symptom Awareness

Fall 2005 45

MS and can provide support to the affectedfamily member. Stress management techniques such as bio-feedback, visualization, and self hypnosis, are otherviable options.

“The big hurdle for many people is toget over the stigma associated with coun-seling. Individuals need to know that theyare not ‘crazy.’ Depression is an illness thatneeds to be treated. Counseling helps indi-viduals learn how to cope and adjust toone’s changing situation. We all experience“dips” from time-to-time and we need tosmooth these out.

“Regardless of which medications andforms of therapy best suit an individualdiagnosed with depression, the important

thing is to get help. Depression greatlyaffects an individual’s quality of life; it can cause additional symptoms, and caneven direct a few individuals towardthoughts of suicide. Depression is a serious disorder, and no one should gowithout treatment.”

For more information or to obtain acopy of the original article on depression,readers may call MSAA’s Helpline at (800)532-7667 or log onto MSAA’s website atwww.msaa.com, click on “publications,”select The Motivator, and scroll down to theWinter 2003 issue of The Motivator. Includedin the article are various strategies on howto feel happier. ◆

— Susan Wells Courtney

Continued from page 37

¿Habla Usted Español?[Do You Speak Spanish?]

Helping Spanish-speaking MS clientsfind access to health care, information,and community resources are just a fewexamples of the support offered throughthe MSAA bilingual Helpline. HelplineConsultant Richard Palacio reports thatcalls from Spanish-speaking MS clientsand a growing network of social workersare steadily increasing as awareness ofservice expands throughout the UnitedStates and Puerto Rico. MSAA is offeringthis service in an effort to assist individualsin the Spanish-speaking community receiveinformation, referrals, and reassurance inthe fight against this disease.

Individuals requiring assistance maycontact MSAA’s Helpline at (800) 532-7667,

extension 108. This Helpline service isanother way MSAA strives to enhance thequality of life for individuals with multiplesclerosis.

Call the Helpline for:• MS Information• Disability/Insurance Issues• Reassurance and Support• Connect to Other MS Resources

La comunidad hispano-hablantepuede contactar la línea de ayuda (Helpline)de la MSAA marcando el (800) 532-7667,extensión 108.

This service has been made possible throughthe support of the Medtronic Foundation.

50 MSAA Motivator

Health & Wellness

EMERGENCYPREPAREDNESS:

Don’t Forget The Pets!Our pets are part of the family.The best way to protect yourfamily from the effects of a disaster is to have a plan. Serviceanimals assisting people with disabilities are the only animals allowed in Red Cross shelters.

The Humane Society of the UnitedStates, in cooperation with the AmericanRed Cross, has the following suggestionsfor the safety of your pets:• Do not leave pets behind.• Call in advance to confirm emergency

shelter arrangements for you and yourpets.

• Be sure your pet’s “disaster supplies”(listed later) are ready.

• Bring all pets into the house in case youmust leave in a hurry.

• Make sure all pets are wearing identifi-cation. Attach the phone number andaddress of your temporary shelter, or ofa friend or relative outside the disasterarea. You can buy temporary tags or putadhesive tape on the back of your pet'sID tag, adding information with anindelible pen.

• Have carriers for each pet, even “pocketanimals,” birds, etc.

• Prepare a list of boarding facilities and vet-erinarians who shelter animals in an emer-gency; include 24-hour phone numbers.

• Ask friends, relatives, or others outsideof the affected area if they could shelteryour animals. Try to house them togeth-er but be prepared to separate them.

• Ask local animal shelters if they provideemergency shelter or foster care for petsin a disaster.

No matter how long the disaster willlast, you'll need supplies. Keep items in anaccessible place, stored in sturdy containersthat can be carried easily (duffle bags, cov-ered trash containers, etc.). Your pet’s “dis-aster supplies kit” should include: • Medications and records (stored in a

waterproof container) and a first-aid kit. • Sturdy leashes, harnesses, and/or carri-

ers to transport pets safely and ensure

Fall 2005 51

Health & Wellness

Fall 2005 51

that your animals can't escape. • Food, potable (drinkable) water, bowls,

cat litter/pan, and can opener; keepnames and records all in one place withthe pet.

• Current photos of your pets in case theyget lost.

• Information on feeding schedules, med-ical conditions, behavioral problems,and the name and number of your vet-erinarian in case you have to foster orboard your pets.

• Pet beds and toys, if easily transportable.

For more information about pets, readersmay contact The Humane Society of theUnited States by visiting www.hsus.org orcalling (800) 486-2631 (800-HUMANE-1).

Readers may also contact The AmericanVeterinary Medical Association atwww.avma.org/disaster or call (847) 925-8070 ◆

For information on events and newlyformed support groups, please call the phonenumbers listed. When specific numbers arenot given, please contact the MSAA RegionalOffice appearing below each listing.Established support groups are held in manyother cities; please call the nearest MSAARegional Office for details. All activities are free of charge unless otherwise noted. Times listed are in the local time zone for the regionor location of the event.

Northeast RegionUpcoming Events:

• Tuesday, November 29th, EducationalWorkshop on “Intimacy &Relationships,” Promises to KeepRestaurant, Derry, New Hampshire, 6:00pm to 9:00 pm; speaker Christine St.Laurent, RN, Sturdy Memorial HospitalMS Center

• November 2005, Educational Workshop“Ask the Doctor,” sponsored by Serono,Toms River, New Jersey (date and time tobe determined); please visitwww.msaa.com for further details

• Wednesday, December 14th, HolidayLuncheon, Hilton at Cherry Hill, CherryHill, New Jersey; please visitwww.msaa.com for further details

Newly Formed Support Groups:• Columbia Falls, Maine; contact Dale

Smith at (207) 483-4646• Olean, New York; contact Debbie

Heysham at (716) 373-6752

• Westminster, Maryland; contact Dawn White at (410) 756-1033

Support Groups Coming Soon:• Antes Fort, Pennsylvania • Brookline, New Hampshire• Levittown, Pennsylvania • Syracuse, New York• Tamaqua, Pennsylvania

New Therapeutic Group• Tai Chi Class, Dunmore, PennsylvaniaThursdays, 11:30 am to 12:30 pmClasses began Thursday, September 8th

MSAA Northeast Regional Office:Helene Hoffman, Client Services Coordinator706 Haddonfield RoadCherry Hill, New Jersey 08002(856) 488-4500, ext. 149(800) 532-7667, ext. 149Email: [email protected]

MSAA New Hampshire Field Office:John RobinsonClient Services Coordinator13 Elwood RoadLondonderry, New Hampshire 03053(603) 434-0176(800) 532-7667, ext. 151

Southeast RegionUpcoming Events:

• January, “Children & Family Issues in MS Interactive Workshop,” Tampa,

52 MSAA Motivator

Florida, (date and time to be deter-mined); please visit www.msaa.com forfurther details

• November through January, “Sweeten theSeason” fundraiser; to participate, pleasecall the Southeast Regional Office or visitwww.msaa.com for more details

Newly Formed Support Groups:• Central Palm Beach, Florida; contact

Walt Larson at (561) 686-8018• Decatur, Georgia; contact Kim Schofield

at (404) 381-6731 • Greenville, South Carolina; contact

Octavius Arnold at (864) 220-2592• Salem, Virginia; contact Danny Huff at

(540) 798-4109

Support Groups Coming Soon:• Brandon, Florida• Charlotte, North Carolina • Mobile, Alabama• Montgomery, Alabama

Please note: MSAA’s Southeast RegionalOffice would like to welcome BrendaPreston to its staff as a client services coor-dinator. Brenda will be working out of theSoutheast Regional Office and can bereached at (800) 532-7667, ext. 154 or viaemail at [email protected].

MSAA Southeast Regional Office:Linda Chaney, DirectorPO Box 66565St. Petersburg, Florida 33736(800) 532-7667, ext. 154Email: [email protected]

Midwest RegionUpcoming Events:

• Contact the MSAA Midwest RegionalOffice or visit www.msaa.com for infor-mation on upcoming public educationprograms in your area.

• Readers may call their nearest MSAAsupport group or contact the regionaloffice for information about upcoming“Holiday Socials”

Newly Formed Support Groups:• Belpre, Kentucky; contact Susan

Courtney at (304) 235-8674

MSAA Midwest Regional Office:Renée Williams, Director13938A Cedar Road, #243University Heights, Ohio 44118 (216) 320-1838(800) 532-7667, ext. 140Email: [email protected]

South-Central RegionUpcoming Events:

• November and December, “MS: Behind theScenes,” Richard G. Pellegrino, MD, PhD;Dallas, Houston, and San Antonio, Texas;Baton Rouge, Louisiana; Kansas City and St.Louis, Missouri; Tulsa and Oklahoma City,Oklahoma; and Denver, Colorado; (datesand times to be determined); please visitwww.msaa.com for further details

• Saturday, December 3rd, “Mind, Body,Spirit: A Woman’s Journey through MS,”Dallas, Texas, (location and time to bedetermined); please visit www.msaa.com forfurther details

Regional News

Fall 2005 53

Newly Formed Support Groups:• El Dorado, Arkansas; contact Eve

Bradford, BS, MPA, at (312) 296-3916 or(870) 862-7093

Support Groups Coming Soon:• Breckenridge, Colorado • El Paso, Texas• Fayetteville, Arkansas• Hot Springs Village, Arkansas• Knoxville, Tennessee• Mansfield/Arlington, Texas

MSAA South-Central Regional Office:(800) 532-7667, ext. 153

MSAA Arkansas Field Office:Judith Bennie, Client Services Coordinator107 Avonshire TerraceHot Springs, Arkansas 71913(501) 262-9380(800) 532-7667, ext. 137

Northwest RegionUpcoming Events:

• Saturday, December 3rd, “HolidayLuncheon,” Grant Creek Inn, Missoula,Montana, 11:00 am to 2:00 pm

• Friday, December 16th, “VolunteerHoliday Party,” MSAA NorthwestRegional Office, Great Falls, Montana,1:00 pm to 4:00 pm

• Sunday, January 15th through Friday,January 20th, “TransMontanaSnowmobile Charity Ride;” starts at theCanadian border near Eureka, Montanaand ends at Raynolds Pass on the Idaho-Montana border near West Yellowstone,

Montana• Saturday, February 4th through Tuesday,

February 7th, “Wyoming/YellowstoneSnowmobile Charity Ride;” starts inAlpine, Wyoming and ends in WestYellowstone, Montana

Newly Formed Support Group• Bozeman, Montana; contact Linda

Crowley at (406) 856-3416

Support Groups Coming Soon:

• Hettinger, North Dakota

• Jamestown, North Dakota

MSAA Northwest Regional Office:

Sue Pencoske, Director

600 Central Plaza, Suite #13

Great Falls, Montana 59401

(406) 454-2758

(800) 532-7667, ext. 131

Email: [email protected]

Western RegionSupport Groups Coming Soon:

The Western Regional Office is starting

support groups in the following cities:

Los Angeles, California (both Spanish and

English-speaking support groups); San

Francisco, California; and Las Vegas,

Nevada. Those interested in joining a

support group in any of these areas or

starting one elsewhere may contact the

Western Regional Office.

Regional News

54 MSAA Motivator

MSAA Western Regional Office:

Amanda Montague, Director

1819 Polk Street, Mailbox #326

San Francisco, California 94109

(415) 260-6420

(800) 532-7667, ext. 155

Email: [email protected] ◆

MRI Program ExpandedThe MSAA MRI Institute has expanded

its coverage to include C-Spine scans inaddition to scans of the cranium. For more information, please contact MSAA at (800) 532-7667, ext. 120; you may alsosend an email to [email protected].

Regional News

Fall 2005 55

People with Multiple Sclerosis depend on MSAA as a…

LIFELINE FOR A LIFETIMEIncurable and unpredictable, MS is diagnosed earlier and earlier…even in pre-teens!

MSAA works with people as they cope with:• teen years, education, dating, career planning• marriage, family life, changes in MS

MSAA programs and services include:• Toll-free Helpline, Equipment Distribution, Publications• Home modification, Diagnostic and Follow-up MRI• Cooling, Networking, Lending Library, Support Groups

YOU CAN BE A LIFELINE FOR A LIFETIMEWhen completing your CFC form, please remember #9509 for MSAA

Multiple Sclerosis Association of America706 Haddonfield Road, Cherry Hill, NJ 08002

1-800-532-7667 www.msaa.com

Attention: Federal Employees

Travel ScholarshipIn our last issue of The Motivator (Summer

2005), we included an article on travel. On p.34 wasa sidebar about the late Kate Christie Zee, MD, PhD,who wrote a book about her travels and created ascholarship fund from the sales of her books to pro-vide travel opportunities for individuals with disabil-ities. Unfortunately, what proceeds were availablehave already been used to help individuals with dis-abilities pay for a small portion of their trip.

Accessible Journeys specializes in accessibletravel and oversees the scholarship and book sales.Anyone interested in purchasing a book or gettingmore information about accessible travel may go to www.disabilitytravel.com/windmills.htm or theymay call (800) 846-4537.

Please do not contact Accessible Journeys forfree travel. The scholarship has no funds available atthis time.

56 MSAA Motivator

The Seat of the SoulWritten by Gary ZukavPublished by Simon & SchusterMSAA Book #166

Author Gary Zukav is agraduate of Harvard University and previous-ly won an American Book Award for his writ-ten work in science. In this more recent book,Zukav explores the human spirit, providingthought-provoking concepts on topics suchas creation and evolution, responsibility andrelationships, as well as psychology and innerpower. (Please note that this book may con-tain religious or spiritual ideas that may notbe shared by everyone; while MSAA offersthis book to anyone interested, MSAA has noinvolvement with the material presented.)

The Official Patient’sSourcebook on Multiple SclerosisEdited by J.N. Parker, MDand P.M. Parker, PhDPublished by ICON GroupInternational, Inc.MSAA Book #226

Published in 2002, this massive refer-ence provides information and additionalresources on many topics relating to MS.These topics range from general informationon MS and finding a doctor, to drug research,alternative medicine, and nutrition.

Finding the Way HomeWritten by Gayle HeissPublished by QED PressMSAA Book #162

Living with achronic illness since1984, author GayleHeiss has been facilitating weekly support groups since 1988 while working as a hospice volunteer and companion to people withAIDS. Through her experience andaccounts of support groups, Heiss helpsindividuals living with illness find theirstrengths and forge their own path to amore fulfilling life.

MSAA Lending LibraryIf you would like to borrow any of the books

featured in this column or any other book inMSAA’s Lending Library, please send us yourname and address. We will send you an applica-tion and a list of books for the Lending Library.MSAA and its clients greatly appreciate any dona-tions made to help build the Lending Library. Ifyou would like to donate a book to the LendingLibrary you need only send it to us at the addressbelow. Please address all correspondence to:

MSAA Lending LibraryAttn: Woody Dyer

706 Haddonfield RoadCherry Hill, NJ 08002

(Please reference book number)

56 MSAA Motivator

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