msc mi vol 3 iss 2

8/6/2019 MSC MI Vol 3 Iss 2

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Volume 3 Issue 2 Michigan Chapter, Inc.

April/2006

Because the uture ace o MS is everyones business....This is why were here.

Research, p. 3Fundraising & Awareness, p. 7

Advocacy, p. 11

News, p. 14

Wellness, p. 16Regional News, p. 20

Self-Help Groups, p. 22

Equipment Corner, p. 24

How Doctors Know Its MS: The

McDonald Diagnostic Criteria

Diagnostic, continues on p. 2

The amous trickiness and

variation o MS is part o thedisease rom

the very beginning.There is no singleexamination or testthat positively proves a

person has MS. Insteadphysicians rely on a seto diagnostic criteriaagroup o results. Takentogether, they ruleout any other possibleexplanation or MS-likesymptoms and provideacts consistent with

MS.

A new need for speed

Many people with MS tell a storyo seeing doctor ater doctor, and arustrating period o conusion beoretheir disease is nally named.

Today, the time between initialsymptoms and a diagnosis may be a

medical as well as a personal crisis.All the treatments available to help

control relapsing ormso MS work best theearlier they are started.

A long delay betweensymptoms and

diagnosis may representlost opportunity as wellas painul uncertainty.

The National MSSociety has takenthe lead in helpingphysicians arrive at adenitive diagnosis byorganizing meetings

where experts hammerout standards.

The International Panel onDiagnosis o MS, organized in 2001by the Society with support rom theMS International Federation (MSIF),brought experts together to agree

GHT Ms!

sented by

ee page 8r details!


2/24Toll Free Number: 1-800-FIGHT-MS

A publication of the National Multiple

Sclerosis Society, Michigan Chapter

21311 Civic Center Dr., Southeld,

48076-3911

Ph: 248-350-0020 800-243-5767Fax: 248-350-0029

E-mail: [email protected]

Chapter Chair

Jeff Bell

1st Vice Chairman

Peter Burton

Chapter President

Patricia A. McDonald

Newsletter Editor

Joseph Mead

The Michigan Chapter of the National

Multiple Sclerosis Society is proud to be a

source of information about multiplesclerosis. Our comments are based on

professional advice, published experience

and expert opinion, but do not representtherapeutic recommendations or prescrip-

tions. For specic information and advice,consult a qualied physician.

The Michigan Chapter of the National

Multiple Sclerosis Society does not

endorse products, services or

manufacturers. Such names appear (in

this publication or here) solely becausethey are considered valuable information.

The chapter assumes no liability

whatsoever for the contents or use of any

product or service mentioned.

Copyright 2005 National MS Society

2

F R O M C O V E R P A G E

on what combinations o acts can onlymean this is MS. The panel created theMcDonald Criteria, named in honor oDr. W. Ian McDonald, who chaired the2001 panel.

new In 2005

The work did not stop then. In 2005,the 14-member panel was reconvened,chaired by Dr. Chris Polman. The groupreviewed new research and sought inputrom leading MS practitioners worldwide.

The 2005 Revisions to the McDonaldCriteria was published in the December2005 Annals o Neurology.

Most o the changes refect recent dataabout MRI results. The changes meanthat some people who will be asked tohave two MRIs may know their resultsin about a month, rather than a muchlonger time. Most people may orgo aspinal tap, provided other ndings clearlypoint to MS. And, as in the original

criteria, some people with crystal clearsigns and symptoms may need no MRIat all. The revisions rame the questionsso that doctors can get clearer answerssooner.

One major aspect has not changed:objective, measurable evidence o MShas to be interpreted. No general practiceneurologist should be oended i

individuals or insurance providers ask ora second opinion by an MS expert.

GeTTInG THe word ouTNew criteria wont speed diagnosisunless physicians know about them.

The Society is aliated with 150 MSclinical centers in the United States, andthrough reerral programs is in contact


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Visit us online at www.nationalmssociety.org

R E S E A R C H

with thousands o other proessionalswith an interest in MS. As soon as therevisions were available, the ProessionalResource Center prepared a proessionalstip sheet, mounted it on our website

(nationalmssociety.org/dx-tipsheet), andnotied all chapters.

A laminated pocket card was publishedthis January and oered to all chaptersor distribution.

Finally, the Proessional ResourceCenter provides one-on-one consultationto proessionals via e-mail on a range oMS questions, including diagnosis.

MAIn Types of evIdence Medical historyFrom medical recordsand questions the doctor asks about youand your amily.

Clinical examSome are simpleobservations; or example, how easilyyou move or respond. Other parts o aclinical exam involve direct examinationand on-the-spot tests.

Laboratory resultsThese may includeinormation rom MRI scans, spinal taps,blood work, evoked potential tests, andpossibly more.

MS isnt well understood yet, so there isplenty o misinormation about it. Here issome o what we do know:

n MS is not atal. Statistics showthat most people with MS have anear normal lie span. Most deathsassociated with MS are due tocomplications in advanced, progressivestages o the disease. Early treatmentshould help to prevent thosecomplications.

n MS cannot be cured, but it can bemanaged. In addition to disease-

modiying drugs, there are a numbero treatments or MS symptoms. Goto nationalmssociety.org/Brochures-SpecicIssues.asp or ree brochures onsymptom management, or call us.

n The decision to tell anyone youhave MS is yours. Our act sheet,Disclosure: The Basic Facts, discusses

both personal and work situations.Download a copy at nationalmssociety.org/Brochures-Disclosing.asp, or callus.

n Sel-help groups and amily counselingcan help. Sel-help groups bringtogether people who share a commonlie experience, or support, education,and mutual aid. Contact us orreerrals.

KnowledGe Is power

This at-home study program providesa basic education in MS, including

symptom management, treatmentoptions, disclosure, amily issues, andemployment. Sign up to receive the six

weekly mailings (e-mail or mail) onlineat nationalmssociety.org/Knowledge, orcall us.

Just been diagnosed? Start with the basics

Just Diagnosed?, continues on p. 4



R E S E A R C H

Just Diagnosed?, continued from p. 3

InforMATIon And

referrAl

The National MS Society is proudto be your comprehensive source

for MS Information and Referrals.

To receive information on multiplesclerosis, the latest research, or for

referrals to programs and resources

in your area, please

call our Information

and Referral

line at 800-243-5767 ext.

235 or send a

request by e-

mail to: [email protected].

Please note that

due to our condentiality

policy, we will not say we

are calling from the National MultipleSclerosis Society, Michigan Chapter,when we return a call or leave a

message. Also, if you have Privacy

Manager or Caller ID our phone

number will show up as 1111111.

If you need MoreOther ree publications are on our

website at nationalmssociety.org/NewlyDiagnosed. Or call us to request alist.

we Also recoMMend:

nThe First YearMultiple Sclerosis: AnEssential Guide or the Newly Diagnosed,by Margaret Blackstone. Marlowe &Company, 2003, 232 pp., $15.95.

nMultiple Sclerosis: A Guide or the NewlyDiagnosed, 2nd Edition, by NancyHolland, RN, EdD, T. Jock Murray,MD, and Stephen Reingold, PhD.Demos, 2002, 160 pp., $21.95.

nMultiple Sclerosis: The Questions YouHaveThe Answers You Need, 3rdEdition, by Rosalind C. Kalb, PhD.Demos, 2004, 640 pp., $39.95.

Books rom Demos are discountedwhen you order rom their website:demosmedpub.com.

The mission o the National MultipleSclerosis Society is to end the devastating

eects o multiple sclerosis.

Multiple sclerosis is a devastating disease.This is why the National MS Society unds

more research than any other voluntaryhealth organization in the world. Moreprogress has been made in the last 10 yearso research than in the previous 100 years.

vIsIT us onlIne AT

www.nationalmsociety.org/mig

4


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R E S E A R C H

People with MS have known all

along that there are huge variations inMS. Among other things, some peoplerespond very well to certain treatments,

while others get little benet. Arethese variations due to basic biologicaldierences in the disease?

Since 2000, the MS Lesion Projecthas coordinated an international teamo researchers ocused on this question.

Scientists in the United States, Germany,and Austria are examining tissue romMS lesionsareas o brain where myelinhas been stripped rom nerve bersandcomparing what they nd with recordso the persons actual symptoms anddisabilities. The project is scheduled to becompleted with $1.2 million to be raisedin the next our years by the Societys

Promise: 2010 Campaign.Preliminary ndings underscore the

promise: There may indeed be severaltypes o MS and these types may havedierent immune-related causes, wroteDr. Claudia Lucchinetti o the MayoClinic, Minnesota, who is the leadinvestigator.

The group has identied our distinct

lesion patterns in MS. The tissuesstudied in the project come rom autopsyspecimens and rom brain biopsies,usually perormed when a brain tumor

was suspected.

Data rom the 280 tissue samplesanalyzed by the end o 2005 indicate that

each alls into one o our patternsandthat no one person had lesions matchingmore than one pattern. However, thecommon types o MS (relapsing remitting,primary progressive, relapsing progressive,and secondary progressive) do not appearto correlate with these lesion patterns early

in the disease. Dr. Lucchinetti stresses thatlonger ollow-up is needed to determinei the patterns help predict the diseasecourse over time. Here is a sample o otherndings o the MS Lesion Project:

People with one lesion pattern thatincludes specic antibodies respondbetter to plasma exchange therapythan those with the other threepatterns.

One lesion pattern is associated withloss or damage to one particularmyelin protein while other proteinsremain intact.

Learning from the MS Lesion Project

Lesion Project, continues on p. 6


6/24Toll Free Number: 1-800-FIGHT-MS6

People with neuromyelitisoptica (also called NMO or

Devics syndrome) can be clearlydistinguished rom those with MS bythe presence o a specic antibody.NMO is oten conused with MS.

A novel mechanism called tissuepreconditioning appears to beresponsible or a pattern o tissuedamage in Bals concentric sclerosis,another rare, severe disease similar to

MS.* Tissue damage ound in areas o

the brain where lesions are not seenon conventional MRI may play acritical role in the development odisabilities.

People with MS who were diagnosedby brain biopsy have clinical

courses similar to people diagnosedthrough conventional means. Thisis important because it suggests that

whatever is learned about MS rombrain biopsies can be applied to more

typical MS. And, one o the our lesion patterns

has distinguishing aspects that showup on MRI.

This last nding has ueled the hopethat it will be possible to identiy all ourpatterns through non-invasive scanning.

The project investigators are pushing hardor methods that will make it easible totype a persons lesions beore selectingtherapy. Dr. Lucchinetti puts it simply:This project may get us to the very coreo nding better ways to treat MS.

* The National MS Societys programs andservices are open to anyone aected by theserarer conditions, as well as by possible MS

or clinically isolated syndrome called CIS.

Lesion Project, continued from p. 5

Sylvia Lawry wanted to help her brother,who was diagnosed with MS. Lookingor inormation, she placed a classied ad

in the New York Times and ound manyother people desperate or answers. Sixty

years ago this March, she organized whatwould become the National MS Societyand later the international MS move-ment. Here she is with the rst Medical

Advisory Board in 1946.

fAce-To-fAce wITH Ms: foundInG THe socIeTy

R E S E A R C H


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F U N D R A I S I N G A N D A W A R E N E S S

several o our TeamMS teamcaptains are so committed tothe mission o the National MS

Society that they go beyond the duties oorganizing and motivating their teams toraising additional unds. These individualsare creative in their approach andrepresent their employers to help leveragesponsorship dollars, as well as securespecial unding through grants.

The Frankenmuth MS Walk Committeeis ortunate to have two team captains onits committee who also take an active rolein securing local businesses to sponsorthe MS Walk. Available sponsorshipopportunities include, start/nish linesponsor, rest stop sponsors, and projectmile sponsors. Lynne Kindy, team captainor Team One Credit Union, and Christine

Davis, team captain or Champagne &Marx Excavating, Inc., along with theircompanies recognize the importance ogiving back to the communities they serve.

Approaching local businesses to supportthe MS Walk not only positively positionstheir companies as good corporatecitizens, but oers sponsors visibility withthe event, while raising the unds neededto keep event expenses to a minimum.

Kindy secured $3,975 in sponsorshipsupport or the 2005 Frankenmuth MS

Walk, while her team raised $9,146. Davisrecruited $750 in sponsors and her teamraised $17,412.

Another shining star is Ed Rightor, teamcaptain or the Dow/TCC MS 150 Bike

Tour team. A participant o the MS 150

Captains Go Beyond Duties to RaiseMoney for the Society

since 1993 Rightor has independentlyraised nearly $90,000. Rightor workedto secure a grant o $15,000 rom theGerstacker Foundation, which allowsthe National MS Society to provideprograms like Circles o Hope. This uniqueprogram was oered to residents in Dowshometown o Midland and is a direct

result o the teams eorts and Rightorscommitment. In 2006 the grant supportedthe Chapters Gateway to Wellness. TheChapter oers eight Gateway programs a

year statewide. The Dow/TCC team raised$117,590 in 2005.

Team captains Kindy, Davis, and Rightorare truly leaders or the National MS Societyby organizing very successul teams with

impressive team totals and also by securingsponsors or grants or the MichiganChapter.

By sponsoring a TeamMS event,companies receive visibility that varies bylevel o commitment. I you are interestedin securing local sponsorships, pleasecontact the Society at (248) 350-0020.Together we are closing in on a cure.

2005 Team Dow/TCC




What if every day you woke up not knowing if youwould be able to get out of bed or hold your child?For many people with multiple sclerosis, this is their reality.

THIS IS WHY WE CARE.Multiple sclerosis (MS) usually strikes adults in the prime of life between the ages

of 20 and 50. MS is a chronic disease of the central nervous system affecting the

brain and spinal cord. One new case of MS is diagnosed every hour. It comes and

goes unpredictably, leaving those with MS to wonder, Will I become paralyzed, blind

or have trouble walking? Will I be able to raise my family and continue my career?

APRIL

22 Detroit,GrandRapids,

Midland

23 Dearborn,Lansing

29 AnnArbor,Holland

30 Marquette

MAY

6 Warren

7 Birmingham,Grosse Pointe,Jackson

13 Frankenmuth,Kalamazoo

JUNE

24 TraverseCity

JUNE

10-11 GrandRapids

JULY

15-16 MetroDetroit

16 MountainBikeTour

PresentedBy

PresentedBy

MAY

1-31 Statewide


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each year the National MultipleSclerosis Society, Michigan Chap-ter, holds a variety o undraising

events throughout the state, through ourTeamMS program. TeamMS an individu-al serving as a Team Captain to recruit atleast three other people to participate inthe National Multiple Sclerosis Societys

TeamMS events, including the MS Walk,

MS 150 Bike Tour, MS Longest Day oGol, and MSAMS.

Here Are A few HIGHlIGHTs

of wHATs GoInG on wITH

THe 2006 evenTs:

The 2006 Christopher & Banks MSWalks Approaching Fast - RegisterToday!

Time is fying and the rst o our 15 MSWalks will be here beore you know it.Have you registered yet? The Midland,Grand Rapids, and Detroit MS Walks willstart our season on April 22nd. Werereally excited about our new Detroitstart/nish location at Comerica Park.

We hope you will bring your riends andamily, and help us celebrate our own

Opening Day!The 2006 General Motors MS 150 BikeTour Million Dollar Goal!We want you to join us in the eort toreach a million dollars this year by rid-ing, volunteering or being a power part-ner at Grand Rapids on June 10-11, 2006or Metro Detroit on July 15-16, 2006.

Our two-day bike tours oer route op-tions o 150, 175 or 200 miles in a ullysupported environment with energizingsnacks, rest stops, technical help, and

medical support throughout your ride.I you choose, you can test yoursel byriding one day through scenic orests andchallenging dirt trails by joining us orour Mountain Bike Tour on July 16, 2006.

All o our tours end with a barbecue andspecial celebration in your honor. What-ever your preerence the GM MS 150 Bike

Tour oers a great opportunity to supporta great cause!

Time to Hit the Links or the 2006Huntington MS Longest Day o Gol!

The Huntington MS Longest Day o Golis a month-long, statewide event to raiseawareness and unds to ght multiplesclerosis (MS) through the National MSSociety, Michigan Chapter. Back or its16th year in 2006, this unique golng

experience gives you the opportunityto play as many holes as you wish inone day on one o our many great hostcourses without paying greens ees! Or-ganize your team and select one day inMay when you will hit the links and putt

with a purpose. More inormation anda complete listing o courses is availableonline.

I you or someone you know is in-terested in participating in one o ourundraising events, or serving as a teamcaptain, please call 248-350-0020 or visitus online at nationalmssociety.org/mig.




H

ow did Barbara Underwood getinvolved with a play that would

eventually raise $3,550 or theNational MS Society?

It all started with a group o threeriends who shared a deep passionor the perorming arts. In the earlyto mid 90s, riends Dennis Rosh andBarbara Underwood were diagnosed

with multiple sclerosis. Unortunately,today their perormances are limited

due to lack o memory and mobility asa result o MS. This sparked their riend/colleague Soa Malynowskyj to suggestthey perorm the playLove Letters by A.R.Gurney. Love Letters is a comical play thattraces the 50-year love aair betweentwo riends whose relationship and livesare observed through letters that passbetween them rom youth to maturity.

Soa elt this was a perect t becausethe entire perormance is the reading oletters sent between the two characters

Andrew Makepeace Ladd III, a dutiullawyer, and Melissa Gardner, an unstableartist. Not so great memory, no problem.

You are reading letters, there is nothing toremember. Have a hard time on your eetmoving rom one side o the stage to the

next? No problem, sit down as you read.And so it was meant to be.

Soa, a member o the Village Playersin Birmingham took the idea to theboard where it was accepted. There

were three perormances. A Fridaynight opening, Saturday perormanceaccompanied by a gala and silent auction

Play Earns $3,550 to Fight Against MSand a Sunday matinee. Local businessesdonated items or Saturdays silent

auction, which included ood baskets,fower arrangements, paintings, quiltsand many other remarkable pieces.

The Village Players o Birmingham iscurrently in their 83rd season. It is theoldest continually operated communitytheater with its own building in thecountry. Barbara is a third generationmember and ormer president o the

Village Players.Barbara, Dennis and Soa all have

very extensive theater backgrounds/educations. Whats so remarkable isthat this is a hobby i you will, orthem now. Dennis is the Principal atCornerstone East Middle School, Barbarais a speech language pathologist orDetroit Public Schools, and Sophia is an

academic advisor at Wayne State BusinessSchool. Truly remarkable!

The Michigan Chapter would like tothank Barbara, Dennis and Soa or theenormous amount o eort that was putinto each one o these perormances, as

well as the Village Players o Birminghamor its support. Events like Love Letterswillmake it possible or us to achieve our goalo ending the devastating eects o MS.

We cant thank you enough!

A copy o this perormance oLoveLetters in available at the SoutheldOce Library.



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A D V O C A C Y

There are many legal issues that

have particular impact on thelives o those diagnosed withMS. While the local chaptercannot provide legal services,it does try to provide general

inormation and reerrals to resources. Ina C.Cohen is an attorney and member o the Boardo Trustees, National Multiple Sclerosis Society,

Michigan Chapter, Inc.

Q:I am applying or long termdisability benefts. Thecompany keeps requesting

more documentation. I have beenreviewing the pamphlet my employerprovided to me and it seems like I havecomplied with all o the requirements.

What should I do?

A:Employment related benets

(disability, retirement/pension,lie insurance, etc.) are based

on specic contracts (policies). Usually,employers provide a summary o theplan and not the controlling documentto employees. The summaries are usuallyshortened versions simpliying theexplanations. They can become conusingor unclear or dicult to understand

because o the precise terms used in thecontracts. An employee has an absoluteright to get a copy o the pension plan, longterm disability contract, or other benetdocuments. To be sae, you should requestthe complete contract and not rely on thecompany quoting specic portions when

you are making a claim.

Legal BriefsBy Ina Cohen

All employment provided benets are

now covered and regulated by ERISA,the Employee Retirement Security Acto 1974 which went into eect as oJanuary 1, 1975. At that time, employees

were discovering that many employerspromises o pension benets were notbeing honored. Problems occurred whenpensions were not suciently undedor available or they required too many

years beore they were vested or otherdiculties occurred. Employees who hadexpected to receive these types o benetsand have security were being abandoned.

The ederal government enacted ERISAto protect employees and assure themthat there benets would be properlyadministered.

While ERISA provides regulations

that require employers to comply withvarious conditions to assure employeeso those benets that are promised1, italso establishes the rights o employeesto challenge the denial o benets or theapplication o the plan, etc.

Thereore, in the case o long termdisability benets, the insurance company(the plan administrator) determines

what satises the policy and whether itwill provide benets. I you disagree, youare given an opportunity to appeal thedecision within the company. However,

1 ERISA doesnt require employers to provide ben-ets. It only controls those benets that employersactually oer.

Legal Briefs, continues on p. 12



news you cAn use

12

Legal Briefs, continues from p. 11

A D V O C A C Y

i you are still dissatised, you mustthen pursue your claim in ederal court

pursuant to ERISA. You are not permittedto le in a state court. The standard orthe ederal court when reviewing yourclaim is whether the determination o theadministrator o the plan was arbitraryor capricious. In the law, this is a verydicult and high standard. I there is any

view o the evidence and the policy tosupport the administrator, the denial o

the claim will be upheld.The most important thing to

understand is that the ederal court willonly look at the evidence that was beorethe administrator o the plan and notconsider new evidence. Thereore, youmust understand what is required andmake certain that you have providedabsolutely all o the documentation in

support o your claim. I you are initiallydenied, you might be best o consultingan attorney to assist you in the initialappeal beore the administrator. In that

way, you will be in a better position i youneed to appeal it urther in ederal court.

It is dicult to nd attorneys amiliarwith ERISA claims who representemployees. Most o the attorneys who

specialize in ERISA are involved inadvising employers. I you nd yoursel inneed o assistance, make certain that anyattorney you consult is well inormed andknowledgeable about ERISA.

looKInG for A few

new volunTeersLocating and updating local community

resources has become a top priorityfor the Michigan Chapter. Having these

resources organized and available will

help us to provide accurate, up-to-date

information to individuals who call forreferrals, regardless of where they live in

the state.

We need a few volunteers across the

state who enjoy solving puzzles anduncovering buried information to help

us gather resources we can use. These

individuals must have excellent computer

skills (i.e. internet search engines,

e-mail, Word) and access to a computerto conduct and report their research.

We will be accepting applications from

those individuals who would like to beconsidered for the position. Contact Sueat 800-243-5767 ext. 232 or Sue.Arnot@

mig.nmss.org to receive an application

and job description. This opportunity is

open to people who would like to come

into our ofces in Southeld or GrandRapids or even work from home.


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Visit us online at www.nationalmssociety.org16

You Need to be Involved to Make a ChangeBy Ruth Linnemann, Advocacy and Programs Director

It is critical to have many people speak

up to alleviate the impact o MS. Westrengthen our impact by ocusing ourattention on key issues. Listed below arethe issues the Government RelationsCommittee o the Michigan Chapterselected or advocacy eorts in 2006.

1. Federal unding or MS research

2. Long Term Care Reorm & Systems

Changepreserve state unding orMI Choice, the Medicaid Home andCommunity Services Program, andthe Medicaid Home Help Program,and support the implementation osingle points o entry or long termcare inormation 3. Passage o the Inclusive Home Design

Act, which would require that publiclyunded housing in Michigan have oneaccessible entrance and bathroom

4. Standards or re saety and airconditioning in nursing homes

The Detroit Metro Advocacy Committee(DMAC) works to impact public concernso people with MS in the six metro counties.One o their key issues in 2006 is toinorm municipalities o the emergencypreparedness needs o people withdisabilities.

Look in the chapter program section othe Chapters website or more inormationon advocacy, www.nationalmssociety/migor call 517-339-6002. Join us!

State, local and national issuesneed your voice. There is strength

in numbers. Some o the simplest

ways to get involved are:

Join the Action Alert network

Serve as an advocacy contact or

a sel-help group

Get involved with DMAC thatmeets the second Saturday o the

month at the Chapter ofce

A D V O C A C Y



N E W S

proTecTInG TeeTH

froM Ms

MS aects teeth?Yes, it

can, indirectly. Numbhands or atigue maymean less eectivebrushing and fossing.Medications may aecttooth health. Some

cause dry mouth, or example. Periodicsteroids or MS attacks can increase therisk o tooth decay. And MS can absorb

so much room on a personal health-carecalendar that regular dental visits dropby the wayside.

Protect yoursel rom utureproblems. Smile and download a copyo Dental Health: The Basic Facts atnationalmssociety.org/dental.

No Internet? No problem. Call us andwell mail you a copy.

MedIcAre rX enroll-

MenT deAdlIne MAy 15

I you need help making a decisionabout prescription drug coverageunder Medicare, the Society has a listo resources at nationalmssociety.org/medicare. You will nd:

Tips on Choosing a Medicare RxPlan

The webcast Medicare DrugBenets: Understanding The Facts,Understanding Your Options

A link to Medicares website whereyou can compare plans (click on

Compare Medicare Prescription DrugPlans)

A link to your State Health Insurance

Assistance Program (SHIP), whichoers one-on-one counseling andassistance

Enroll by May 15 to avoid having alietime penalty added to your monthlypremium. For help with problems, contactus at 1-800-FIGHT-MS (1-800-344-4867).

reAdy To volunTeer?

The National MS Society has joinedVolunteerMatch, a national database thatmatches people who want to volunteer

with volunteer openings at more than35,000 nonprot organizations across thecountry.

The Society is now one o them. Usingthe service is easy. Go to volunteermatch.org on the web. You can select

organizations by their type, who theyserve, the distance rom your home,the training oered, and the positionscurrently open. More than two millionpeople have used this service.

Some chapters previously listedvolunteer opportunities withVolunteerMatch. As o February 1, 2006,the entire national network o Societychapters and divisions is participating.

VolunteerMatch will not only help usrecruit the volunteers we need, it willhelp anyone interested in volunteeringto match their personal skills andrequirements to a range o choicesavailable in our area.


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Mountain MS Center in Colorado, toldMSConnection that many o the people shesees report positive benets.

My patients use massage to relievespasticity and pain,Kennedy said. Massage

can also provide a chanceto relax, helping torelieve anxiety and ear.

The simple act o touchconveys comort, caring,and acceptance, she said.

A ew cautions

Massage therapy is

generally sae. However,consult a physician i youhave:

n Pain. Get arecommendation or the

best type o massage therapy or you.

18

cHAMpIons Buddy up

Anythings more un when you pair upwith a buddy. Thats the idea behindPower Partners, the program thatconnects people with MS to an MS

Walk, MS Challenge Walk, or Bike Tourparticipant. All it takes is a letter,e-mail, or phone call to acknowledge

your Power Partners involvement beorethe event. The Power Partner also signs a

wrist band which is worn by the walker orrider during the event. This highlights the

N E W S

Massage therapy has been practiced orthousands o years, rom ancient Greeceand Egypt to India and China.

In the U.S. today, more than 150kinds o massage therapyare used but most are

variations o Swedishmassage, which wasinvented in the 19thcentury.

What massage cando or you

Most o what we knowabout massage is

anecdotal. In one smallscientic study o 24people with MS, massageappeared to improve sel-esteem and body image.

Patricia Kennedy, RN, CNP, MSCN,a nurse practitioner at the Rocky

hope that together well eradicate MS.

Every year, thousands o people walk,ride, and undraise or research andchapter programs and services. By joiningPower Partners you put a ace on MS.

The personal touch osters MS awarenessin your community and inspires us all tohelp wipe MS o the map. To learn more,go to nationalmssociety.org/mig or callus.

The Medium is the Massage

Massage, continues on p. 16



W E L L N E S S

n Pressure sores. While massage may behelpul in preventing pressure sores, itshould be avoided i pressure sores or

reddened areas o infammation arepresent on the skin.

n Edema. Swelling caused by a build-upo fuid can have many causes. Get adiagnosis beore beginning massage.

n Osteoporosis. People with MS tendto have lower bone mass and havea greater risk or ractures. Whenosteoporosis is present, massage

therapy should be given only with theadvice o a physician.

Write it o

Forget your insuranceew plans covermassage, and never long-term. But youmay be able to write it o on your taxesas a medical expense. Kennedy said thatmany people get prescriptions rom their

doctors, which they save with their tax

records. Consult with a qualied taxspecialist.

People who knead peopleReady or a massage, but not sure how tond a masseuse? The American Massage

Therapy Association can supply names oapproved therapists. Most states also havelicensing programs. Call us or massagetherapists on our reerral lists.

n American Massage TherapyAssociation, 820 Davis Street,

Suite 900, Evanston, IL 60201www.amtamassage.orgPhone: 877-905-2700

n Touch Research Institutes, Departmento Pediatrics, University o MiamiSchool o Medicine, P.O. Box 016820,Miami, FL 33101

www.miami.edu/touch-researchPhone: 305-243-6781

Massage, continued from p. 15

We are proud to announce that The Heuga Center, a leader in the eld of exercise

and MS, will bring its world-renowned CAN DO Program to Dearborn, September 20-24, at the Dearborn Hyatt Hotel. This program includes ve days with a team of 45

MS specialists from diverse elds, 45 hours of education, evaluation, goal setting and

learning the tools and strategies you need to live a healthier life by focusing on what

you can do instead of what you cannot. The CAN DO Program includes a completesupport partner program and is limited to 25 couples.

People are encouraged to apply early as this program is sure to ll and the applica-

tion deadline is August 18. Applications can be downloaded from www.heuga.org or

requested by calling The Heuga Center 800-367-3101.


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As recently as 20 years ago, people

with multiple sclerosis (MS)were advised to avoid physical

activity/exercise because it could increasesymptoms or possibly even increasedisease activity. Today it is well acceptedthat exercise is benecial in maintainingor increasing ones health, decreasingsecondary complications and improvingpsychological well-being. There is notsucient evidence that exercise aects the

disease process, however, this is an area ogreat interest, but there is ample evidenceo the eects o exercise on overallphysical and psychological health.

The Surgeon Generals 1996 Reporton Physical Activity and Health outlinedthe importance o exercise. The reportstressed that physical activity need notbe strenuous to achieve health benets

and signicant health benets canbe gained with moderate amounts ophysical activity. These are importantactors or people with MS because o theproblems with atigue. The benets ophysical activity include reducing the riskor coronary heart disease, high bloodpressure, colon cancer and diabetes. Inaddition, it can help improve staminaand muscle strength. These ndingsemphasize the importance o physicalactivity in improving health and reducingthe risk or premature death. In addition,an article published by Petajan, et. al. in1996 demonstrated the positive eects oa 15-week aerobic exercise program orpeople with multiple sclerosis. (1)

Exercise is generally separated into

Exercise for People with MSBy Brian Hutchinson, President o the Heuga Center and the Consortium o MS Centers

three dierent categories: Aerobic or

Cardiorespiratory Endurance, Stretchingand Strengthening. Other orms o exercisemay ocus on balance, coordination ormobility. These exercises are designedto address very specic decits that mayexist and oten can be classied in one othe three general areas mentioned earlier.Exercise is usually prescribed with specicrecommendations o: type (what exercise?),requency (how oten), the duration (how

much time), and the intensity (how hard)o the exercise. It is important to get someinitial guidance, rom your physician,physical therapist or exercise physiologist,

when starting your exercise program. Thisguidance will allow you to address yourindividual needs. Exercise groups are abenecial way o improving adherence to

your exercise program.

One method o dealing with the dicultsymptom o atigue while exercising is touse the rate o perceived exertion scaleto monitor exercise intensity. In general,maintaining a moderate level o exerciseintensity will allow a person to exercise

without increasing the symptoms o atigue,so commonly seen in people with MS.

Exercise can be a positive therapeutic

ritual. The use o exercise as a therapeuticritual provides people with chronic diseasean activity around which they can organizetheir day and ocus on a healthy activity.

1. Petajan, et.al., Impact o Aerobic Training on

Fitness and Quality o Lie in Multiple Sclerosis

Annals o Neurology. Vol. 39 No. 4. April, 1996.

432-441.

W E L L N E S S



W E L L N E S S

Young with MS...You are not alone!

A

s technology advances anddiagnostic procedures improve,

the heart-wrenching diagnosiso MS is being received by younger andyounger people. Typically, MS is diagnosedbetween the ages o 20 and 50, but it haslong been known that MS symptoms canbegin at any age. Currently, it is estimatedthat more than 400,000 people in the U.S.have MS, including 8-10,000 children (18years and younger). Initial symptoms havebeen seen as early as 13 months old, with

diagnosis as young as two years o age.Another 10-15,000 people under 18

have experienced at least one symptomsuggestive o MS. Some o these will go onto develop MS, although in most cases,they will not actually be diagnosed untilthey are adults.

The challenges o being diagnosed withMS as a teenager or young person are

dierent than those or an adult. Thesechallenges include coping in school andmaintaining relationships.

Kaley Zeitouni, who writes a columnor Teen InsideMS, was diagnosed whenshe was 12. She reports that a teenagersrelationship with amily is very dierentater a diagnosis o MS. A lot o teens gothrough a rebellious stage in which they

hate their parents. I could not aord tohave this stage. I appreciated (and continueto appreciate) everything my parents did. Iace the challenge o fnding a balance withmy parents so that I can grow up and live anormal lie.

She goes on to say that a teenagerwith MS also has to choose riends verycareully. My riends had to be able to take

care o me almost as much as my parents.I needed riends who could keep an eye

on me and whom I could trust. But I alsoneeded riends who, at the same time,treated me as an equal.

Stacey Helewski rom Bad Axe, MI,who is now a senior at Michigan StateUniversity, was diagnosed when she was18. She says that initially her diagnosis wasa huge blow emotionally and it beganto aect other areas o her lie includingrelationships. She began to dwell on itmuch more than was healthy. Staceysought out psychological help whichhelped me greatly improve my outlook.

School can also be a major issue or ayoung person with MS. Problems withmemory, concentration and readingability become real issues. Stacey Helewskilaments, I desperately need to leave myselnotes and lists o things to do and get

since I have an awul time rememberinganything. I also fnd mysel strugglingwith language and speakingespecially when I am tired oroverexerted. This was a hugerustration to me since Iwould like to think I am wellversed and since I have hadextensive public speaking

experience. These werethings that use to be secondnature to me and now I haveissues fnding the right wordand making the words comeout right.

Both Kaley and Staceyrecognize that it is important


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W E L L N E S S

or a young person with MS to keep ondreaming and setting goals.

Kaley says, Embrace the hardships andlive every moment to the ullest. Now in

college, Kaley has aspirations to becomea doctor who specializes in alternativemedicine and a motivational speaker.Kaley already speaks to teens and adultsrom around the world about her personalexperiences in living with MS.

Stacey Helewski is still living her dreams.Ater graduation rom Michigan thisMay, she will go to Australia or a month-long study abroad. While there she willbegin working on her Masters Degree inCurriculum and Teaching and teach in alocal school. When she returns, she willbegin a year-long teaching internship andcontinue to work on her MA. She hopesto fnd a teaching position and eventuallywork toward her doctorate. Then she hopesto be back on a college campus teachingaspiring teachers about teaching. Marriage

and a amily are also part o her dream.The National MS Society recognizes

that teens and young people with MShave special needs. Several programs havebeen set up especially or them by YoungPersons with MS: A Network or Familieswith a Child or Teen with MS. This is asupport network that provides multipleprogram options or amilies living with a

child or teen who has been diagnosed withmultiple sclerosis. The network targets twodistinct populations:

Children with MS (18 years & younger)

Parents o a child or teen with MS

The Network currently oers the ollowingto teens with MS and their parents:

Parents HandbookKids Get MS Too: A Guide for Parents WhoseChild or Teen has MS, is an inormationalhandbook containing a wide range oinormation pertaining to pediatric MS.The handbook was written by specialistsin childhood MS.

TeleconferencesTeleconerences, eaturing specialists inthe feld o pediatric MS, are oered orparents. Topics typically relate to research,treatment, cognitive issues, and rightswithin the school system.

E-mail Group for ParentsThe Network connects parents throughan e-mail list serve group where they canshare concerns and inormation, anddevelop a support network.

E-mail Group for TeensThe Network also connects teens throughan email group especially or them. Thegroup allows teens to meet other teens,share concerns and inormation, and

develop a support network. The group ismoderated by a National MS Society stamember.

Telephone Support Group for TeensIn February 2006, the Network beganoering a time-limited telephone supportgroup or teens with MS. This is not acounseling group, but provides teens witha sae environment to share their thoughts

and concerns about living with MS. Thegroup is led by a young person with MS,and moderated by a National MS Societysta member.

To learn more about the Network or Familiesprograms or services, please call 1-866 KIDS-W-MS (1-866-543-7967) or send an e-mail [email protected].



R E G I O N A L N E W S

MAy

May 13 Are You Curious aboutComplementary and AlternativeMedicine? in Traverse City. Localpractitioners will discuss their use o theintegrative approach to the managemento MS at the Munson Community HealthCenter. Registration at 9:00 a.m.; programbegins at 9:30 a.m. For more inormationcontact, Barbara at 231-348-7992.

May 13 Jumpstart in DearbornTo learn more, call The Heuga Center at800-367-3101.

May 16 What to do When YourLoved One is Experiencing CognitiveChallenges in Southfeld. Thisprogram or caregivers will be held rom6:00 9:00 p.m. A light dinner

will be served. The cost is $5. The speakerwill be Steanie Sinks, MSW, Counselor/Care Manager at the Alzheimers

Association. For more inormation contactSue at 800-243-5767 Ext. 232.

May 20 Lets Talk a FamilyProgram held at the Fith ThirdBallpark at Comstock Park in GrandRapids. MS aects the entire amily andsometimes its hard to talk about it. Joinus or a program including a discussionabout MS or adults and on a kids level,special activites, dinner, and a ball game!

Cost is $5 or adults and $3 or children.Call Karen at 877-242-3784 or morinormation.

The 2006 North American EducationConerence, MS: The GeneticConnection

This program will be held in severallocations. A video presentation eatures,David Hafer, MD, Stephen Hauser, MD,

Dessa Sadovnick, PhD, and John Rickert,MD. A question and answer session willollow the video at each site. The cost orthe program at all sites is $5. Watch ora brochure listing details or each o theollowing sites:

May 2 at the Burnham Brook Centerin Battle Creek. Registration is at 6:00p.m. For more inormation, contact Karentoll-ree at 877-242-3784.

May 4 at St. Marys Education CenterAuditorium in Saginaw. Registrationis at 5:30 p.m. For more inormation,contact Christy at 810-953-1966.

May 20 at Marquette GeneralHospital (Conerence Rooms 2 & 3) in


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R E G I O N A L N E W S

Marquette. Registration is at 9:30 a.m.Video Conerence sites or this programheld at :

War Memorial in Sault St. Marie

Alpena General Hospital (EducationCenter)

May 22 - at Memorial Health CareAuditorium in Owosso. Registrationis at 5:30 p.m. For more inormation,contact Christy at 810-953-1966.

JuneJune 3 Circles o Hope in East

Lansing. This three-hour workshop withDoug Schwentor, LMSW, will teach youhow to increase your hope and create anew vision or your lie. It will be held atUniversity United Methodist Church rom1:00 4:00 p.m. For more inormation,contact Christy at 810-953-1966.

June 3 Proactive Approach toLiving with MS in Sterling Heights.

This program will be held at Utical UnitedMethodist Church rom 9 a.m. noon. Formore inormation, contact Sue at800-243-5767 Ext. 232.

June 17 Circles o Hope in Flint.This workshop with Doug Schwentor,LMSW, will teach you how to increase ourhope and create a new vision or your lie.

It will be held at First Presbyterian Churchrom 11:00 a.m. 2:00 p.m. For moreinormation, call Christy at 810-953-1966.

JulyJuly 8-Aug. 26 Aquatics in Kalkaska.Free aquatics program rom 11 a.m. -Noon. For more inormation call, Barbaraat 231-348-7992.

AuGusTAug. 24-25 Inspiration, Motivation,Celebration a training or sel-helpgroup leaders in Lansing. All MS

Society sel-help group leaders are invitedto an overnight training eaturing timeor learning, sharing and celebrating their

years o service. For more inormationcontact Karen toll-ree at 877-242-3784.

Aug. 12 Young Peoples Program inLansing. Teens and college age people

with MS are invited to meet others anddiscuss the unique opportunities and

challenges that young people with MSace. For more inormation, call ChristyParker at 810-953-1966.

Aug. 16 Family Day at Bay CliHealth Camp in Big Bay. Come join thecampers or a picnic or persons with MSand their amilies. Watch your mail andour website or details. Call Rose at 800-243-5767.

Aug.15-Sept. 19 Gateway toWellness in Bay City. For moreinormation contact Karen toll-ree at877-242-3784.

4

MsconnecTIon

MIssIon sTATeMenT

Empowering through information

This is accomplished by providing: Information on research updates in

multiple sclerosis

Articles by professionals in the eldrelated to multiple sclerosis

Information on activities that benet

the National Multiple Sclerosis

Society, Michigan Chapter, Inc.



S E L F - H E L P G R O U P S

Try A self-Help

Group!A ew sel-help group leaders romaround the state recently shared the

reasons they love being involved withtheir groups. The reasons they lead theirgroups are the same reasons or you and

your amily members to attend a group. Helping others live well with MS Developing close riendships Giving people accurate inormation Letting people know there is lie ater

MS

Helping people see that MS does nothave to be the dominating orce intheir lives

Giving people an opportunity to turnto each other or help

Connecting people who are scaredand think their lie is over with peo-ple who are coping with the sameproblems.

Here are the contact people or NationalMS Society sel-help groups in Michigan.

Why not give someone near you a callabout their group? Then check it out andsee i it works or you!

Michigan chapterSelf-help groupS

(w) indicates that the phone number

is the contacts work number

Benzie County(Benzonia)Rose: 231-882-5246

Berrien County(Watervliet)Diane: 269-463-5620

Cheboygan County(Cheboygan)Jeannette: 231-627-2960

Chippewa County(Rudyard)Marie: 906-478-4263

Clare County(Harrison)Greg: 989-386-3698

Delta County(Escanaba)Lynn: 906-428-3050

Emmet County(Petoskey)Mary: 231-439-0973Margaret: 231-348-9044

Genesee County(Flint)Jackie: 810-733-2642

Gladwin County(Gladwin)Kathy: 989-426-1704

Grand Traverse County(Traverse City)Michelle: 231-947-7203Nancy: 231-946-3253

Gratiot County(Alma)

Dan: 989-775-8475

Hillsdale County(Hillsdale)Bob: 517-849-5066

Ingham County(Lansing)Kimberly: 517-663-8150 (caregivers)Donna: 517-663-4990

Iron County(Iron River)

Jill: 906-265-6275Nancy: 906-265-3714

Isabella County(Mt. Pleasant)Cathy : 989-866-2682

Jackson County(Jackson)Bob: 517-782-7640


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S E L F - H E L P G R O U P S

Kalamazoo County(Kalamazoo)Diann: 269-382-4991Dave: 269-668-4248

Kalkaska County(Kalkaska)

Doni: 231-258-5337Kent County(Grand Rapids)Mary Lou: 616-459-5543

Lenawee County(Adrian)Valerie: 734-475-6332

Livingston County(Brighton)Wendy: 248-446-9592

Macomb CountyKaren : 586-731-4200 (online)

Angela: 586-247-8729 (Clinton Twp.)Nancy: 586-598-8614 (Warren area)Josie: 586-228-3628 (caregiversSterling Hts.)

Mason County(Scottville)Marty : 231-757-3271

Midland County(Midland)

Gene: 989-631-2804Monroe County(Monroe)Linda: 734-242-5919

Muskegon County(Muskegon)Laurie: 231-780-2539

Oakland CountyTeri: (w) 248-269-4003 (Troy)Paul: 586-752-6425 (Rochester Hills)

Ronna: 248-737-2328 (W. Bloomeld)Jane Marie: 313-278-3660 (Southeld)Dayna: 248-205-7842 (Pro.Birmingham)

Ottawa County(Zeeland & Hudsonville)Brenda: 616-399-8402

Roscommon County(Roscommon)Erin: 989-366-1864

Saginaw County(Saginaw)Wanda: 989-865-9162

Shiawassee County (Owosso)Brenda: 989-288-5241

St. Clair County(Port Huron)Peter: (w) 810-364-9811

Tuscola County(Caro)Betty: 989-761-7479

Washtenaw CountyJody: 734-663-0785 (Ann Arbor)or Kathy: 734-475-9991Marylee: 734-662-9325 (Ypsilanti)

or Deborah: [email protected]

Wayne CountyMichael: 313-921-0905 (Detroit)Darrell: 313-964-9959 (Detroit)Celaine: 313-921-1342 (Detroit)Charles: 313-366-4696 (Detroit)Nancy: 734-676-6320 (Wyandotte)Karolyn: 734-459-9715 (Livonia)

Joyce: 313-565-2085 (West Wayne)Mary: 734-455-1944 (Plymouth)Michelle: 313-934-8541 (womenDetroit)


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2004 IMC Heartbeat Elec. wheelchair, blue,like new, oot rest, leg rest, batt. charger, andextras included, $1,700. Call Dave at 989-236-5230.

Jazzy 1143 pwr. wheelchair, heavy duty,

made or trails and indoors, like new, takingbest oer. Call Al Dewitt at 989-762-9027.

Aspire motorized wheelchair, paid $4,700new, asking $2,000 obo. Call Connie at313-274-7517.

Hoveround wheelchair, needs batt., comesw/ chair lit or van, $2,500. Call Nancy at734-449-8090.

Stand up wheelchair, like new, olds up or

easy transportation. Call Arthur at 248-269-9575 (day) or 248-620-1919 (ater 5 pm) ordetails.

2005 Pride mobility scooter, designed orlarge person, red, breaks down into 5 piecesno tools necessary, built-in charger, used by aGrannie, $850. Call Linda at 734-961-6667.

Amigo, brand new, never used, blue, 310lbs. weight cap., three wheeler, paid $3,800,

sprInG2006E Q U I P M E N T C O R N E R

asking $1,800. Pronto M61 outside/insideelec. wheelchair, new, SureStep pwr. lit seatin black leather, blue body, joystick speedcontrol, adjustable back and arm rest. Call989-922-4111 or either item.

Uplit Power Seat, elec. liting cushion,new, never used, asking $149. Air-Condi-tioner wall unit, 9900 btu, like new, usedonly a ew mths, $300. Call Maryann at 248-722-0848 or either item.

Invacare Phoenix lit, includes two extradocking devices, $600. Call 248-515-9913.

Handicap accessible vacation rental, 3 bed-room, 2 bath home on Glen Lake in Leelan-lau County, $1,000/wk. Call 231-995-9336 ore-mail [email protected] or details.

I you are interested in listing an advertisementor equipment that will beneft people with MS,please send your ad to [email protected], withEquipment Corner as the subject. You can alsocall 800-243-5767 ext. 205, with your ad or axit to 248-350-0029. No commercial ads please.

National Multiple Sclerosis SocietyMichigan Chapter, Inc.

21311 Civic Center Drive

Southfeld, MI 48076-3911

Closing in on a cure

msc mi vol 3 iss 2

Documents