msconnection arkansas special edition

This Year, We Are Bringing the Bike MS Event To You!By Kelly Tullberg

For years, cyclists and volunteers from across the state have come together for a weekend of fundraising in the Bike MS event. It has always been an inspirational weekend, but the one thing we have probably been missing is YOU! That is why this year, we are bringing the event closer to home.

The Bike MS: Ride the Rock 2011, presented by Toyota, will take place in Central Arkansas for the first time, starting, overnighting and ending

in North Little Rock. It will be a weekend getaway within the city, allowing friends, family, and MS supporters to come out and cheer on the cyclists and be a part of the festivities.

M OV I N G TOWA R D A W O R L D F R E E O F M S A U G U S T 2 0 1 1

A R K A N S A S

Ride the Rock PAGE 3 Participate in Exercise/ Depression Study PAGE 4

CONTINuED pAGE 2Team Out Spoke’n at last year’s Bike MS Arkansas ride.

Tips for Hiring Home Help PAGE 8

Rest stop volunteers, LaDonna Clark and crew.

S P E C I A L E D I T I O N

Meet the Staff PAGE 10

FROM pAGE 1

For cyclists, it will be an amazing route, as we are the first ride ever to be allowed to ride across both the Big Dam Bridge and Two Rivers Bridge.

And if you aren’t riding, we would still love for you to come and be a part of the weekend. If you’ve never been to a Bike MS event, you are missing a truly inspiring experience. Come cheer on the event participants, experience our

Saturday dinner festivities, or if you are up to the challenge, sign up to volunteer.

To learn more, visit bikeMSarkansas.org, or contact Lisa Brown at 501.663.8104 ext 35304.

2 I JOIN THE MOVEMENT: nationalMSsociety.org 3TOLL FREE NUMBER 1 800 344 4867 I

THE MSCONNECTION is published by the National Multiple Sclerosis Society, Arkansas, 1100 N. University, Suite 255, Little Rock, ARK 72207.

Little Rock Office 501-663-8104Outside Little Rock 800-344-4867Little Rock Fax 501-666-4355Arkansas E-mailstaff’s first name.last [email protected] www.msarkansas.org

Vice president • Paula H. CortnerDevelopment Manager • Lisa Brownprograms & Services Manager • Brooke Teeterprograms & Services Coordinator • Jessica FisherSpecial Events Executive Asst. • Lindsay WileyStrategic philanthropic Coordinator • Jillian BriggsNewsletter Editor • Brandi Davidson

Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician.

The Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The Society assumes no liability for the use or contents of any product or service mentioned.

©2011 National Multiple Sclerosis Society, Arkansas

Deanna Duplanti, Bike MS Arkansas cyclist

Team CVC members

By Kelly Tullberg

When Roger Williams began riding in Bike MS rides in 1996, he had no way of knowing that he would end up riding for any reason other than personal enjoyment. He rode because he was getting into cycling, MS put on a well-run event, and he knew it was all going to a good cause.

However, in 2009, his church family at Chenal Valley Church in Little Rock learned that one of their young members, Brandon Hughes, had been diagnosed with MS. Brandon was 18 when diagnosed and had just started his freshman year of college at the University of Arkansas.

“My two girls were in the youth group with Brandon before he left for college. The news was a big shock

for all of us, but especially for Brandon and his family,” said Williams. “This gave me a whole new purpose for participating in this event.”

In the wake of the news, Chenal Valley Church rallied around Brandon and his family. One way

they decided to help was by forming a team in the Bike MS event. Williams, Brandon’s family, and members from the church all signed up to ride under the team name Team CVC. A Hughes family friend from Tennessee even drove in to participate in the ride.

Williams said, “The Bike MS event was just one way we could support and honor Brandon. Not only did we have cyclists from Chenal Valley Church on the team, but our youth group and many other members helped as volunteers during the ride. It was great to see the involvement of so many people.”

With a new reason to ride, Williams also saw a dramatic increase to the fundraising he was bringing in. Team CVC raised more than $10,000 in 2010, and they have their sights set on doing even more in 2011.


NEWSBike MS: Ride the Rock Team Finds Inspiration to Boost Fundraising Efforts

Members of Team CVC

RESEARCH MS Trial AlertsInvestigators Recruiting for Study of Less Frequent Dosing of Glatiramer AcetateSouth Central study site locations: Lubbock, Round Rock and San Antonio, Texas; Shreveport, La.; Oklahoma City, Okla. and Albuquerque, N.M. Investigators are recruiting 1,350 people with MS to study the safety and effectiveness of glatiramer acetate (Copaxone, Teva Pharmaceutical Industries, Ltd.). The current approved dose for glatiramer acetate is 20 mg per day delivered subcutaneously. This study is investigating the effectiveness of a higher dose – 40 mg – given less frequently (three times a week). The one-year study is funded by Teva Pharmaceutical Industries and is also called the GALA study.

Glatiramer acetate is a synthetic protein that simulates myelin basic protein, a component of the myelin that insulates nerve fibers in the brain and spinal cord. This therapy seems to block myelin-damaging T-cells through a mechanism that is not completely understood.

Participants should be 18 to 55 years of age with a confirmed diagnosis of relapsing-remitting MS. Participants must be in a relapse-free, stable neurological condition for a minimum of 30 days, but have experienced at least one documented relapse in the past 12 months, two documented relapses in the past 24 months, or one documented relapse between 12 and 24 months with disease activity on MRI. To learn more about eligibility requirements for this GALA study, visit the study listing on clinicaltrials.gov. If you believe you may qualify and want to participate, e-mail [email protected].

participants Needed for Study on Exercise and DepressionStudy site locations: Nationwide

Investigators at the University of Washington in Seattle are recruiting 108 people with all types of MS nationwide for a study comparing the effects on depression of two telephone-coordinated exercise programs. The study, also called the inMotion study, is funded by the National Institutes on Disability and Rehabilitation Research.

Depression is common during the course of MS. Studies have suggested that clinical depression is more frequent among people with MS than it is in the general population. Some research has indicated that exercise can improve depression in people with MS.

Participants in this study should be at least 45 years old, have MS, and should meet the criteria for major depressive disorder or chronic depression. Participants will be reimbursed for their time and for phone expenses up to $120.For more details and to find out if you are eligible to participate, contact The inMotion Study at the University of Washington at 1-866-928-2114 or via e-mail at [email protected].



Research Teams Report progress from First Six Months of CCSVI projectsSix-month progress reports from seven multi-disciplinary teams investigating chronic cerebrospinal venous insufficiency (CCSVI) in MS indicated that they have established rigorous protocols, are successfully recruiting participants, and are on-track to evaluate and deliver important data when the two-year projects are completed.

All seven studies are two years in length, but will be closely monitored while in progress to expedite clinical trials should data show they are warranted. The studies were launched July 1, 2010 with more than $ 2.4 million from the National MS Society and the MS Society of Canada.

Owing to the significant interest in the MS community about CCSVI, the Society is providing six-month updates rather than the more standard 12-month reporting cycle. The studies employ rigorous blinding and controls designed to attain objective and comprehensive data. Full research results will be available after significantly more scans have been completed and evaluated, involving more than 1,300 people representing a spectrum of MS types, severities and durations.

Jon Temme, senior vice president of research and programs for the MS Society of Canada, said, “The grants were selected for having the greatest potential to quickly and comprehensively determine the significance of CCSVI in the MS disease process. It is very encouraging to see how effectively the work has advanced among all groups.”

The funded investigators, which include an integration of MS and vascular experts, reported progress in establishing their teams, putting their protocols in place, recruiting participants and beginning their studies:

• Dr. Jerry Wolinsky, The university of Texas Health Science Center at Houston: His team applied in advance and obtained Institutional

Review Board approval in the spring, and the team’s neurosonographer has received intensive training for intracranial and extracranial ultrasound scanning techniques. The team has already scanned a significant number of participants, which include people with different types of MS, people with other conditions and people with no known health problems. One challenge that Dr. Wolinsky’s team is addressing is the difficulty of recruiting non-MS control subjects who don’t have a personal interest in the purpose of the trial. The team is testing whether other imaging methods can confirm the ultrasound findings, while identifying the most reliable technique to screen for CCSVI.

• Dr. Brenda Banwell, The Hospital for Sick Children, Toronto, Ontario: Her team received Research Ethics Board approval in the fall. The team has begun enrolling participants and studying vein abnormalities in children and teenagers with MS, and healthy controls of the same age, using non-invasive MRI measures of vein anatomy and novel measures of venous flow, as well as ultrasound.

• Dr. Fiona Costello, Hotchkiss Brain Institute, university of Calgary, Calgary, Alberta: Her team received Research Ethics Board approval in the fall to begin recruiting a cross-section of people with MS compared to other neurological diseases and healthy volunteers. They also recruited two ultrasonography experts who have begun ultrasound scanning. Dr. Costello’s team slowed recruitment briefly to upgrade to a new 3T MRI machine – twice as strong as standard clinical MRI – that will be used to perform MR venography scans to compare against the ultrasound tests.

RESEARCH

CONTINuED pAGE 6

• Dr. Aaron Field, University of Wisconsin School of Medicine and Public Health, Madison: His team will be using MR venography and ultrasound techniques to investigate CCSVI in people with early and later MS, controls with other conditions and healthy volunteers.

• Dr. Robert Fox, Cleveland Clinic, Cleveland: His team has received Institutional Review Board approval for using MR venography, ultrasound, MRI and clinical measures in people with MS or who are at risk for MS and comparison groups, and recruitment is ongoing. The team has obtained a new ultrasound machine previously used in other CCSVI studies.

• Dr. Carlos Torres, The Ottawa Hospital, University of Ottawa, Ontario: His team obtained Research Ethics Board approval in the winter and began the first phase of

scanning using MR venography in people without MS, which will be used to compare with various scans in people with MS. Team members are slated to be trained using ultrasound techniques and are on-track to recruit more participants for the study.

• Dr. Anthony Traboulsee, UBC Hospital MS Clinic, UBC Faculty of Medicine and Dr. Katherine Knox, Saskatoon MS Clinic, University of Saskatchewan: Teams at both sites received Research Ethics Board approval and have begun to recruit and scan participants. They are also using catheter venography and MR venography to investigate the prevalence of CCSVI in people with MS and controls without MS. The radiologists on the teams of Drs. Traboulsee and Knox met in February to ensure consistency of protocols across sites. Teams are on-target for accrual of recruits and completion of the study.

ReSeARCH


FROM PAge 5

RIDE. VOLUNTEER. DONATE. WWW.BIKEMSARKANSAS.ORG

AN UNFORGETTABLE RIDE. AN UNBEATABLE DESTINATION. A WORLD FREE OF MS.

New Name! New Route! Same goal ... a world free of MS!

Accept the Challenge and Ride the Rock September 10-11, 2011. Join as a cyclist,volunteer, Champion, or cheerleader!


Study: Risk of First Neurologic Event Decreases with Sun Exposure and Vitamin DHigher levels of sun exposure and higher blood levels of vitamin D were both associated with decreased risk of having a first demyelinating event that can be the first indicator of multiple sclerosis, according to a comprehensive study in Australia called the Ausimmune Study. A first demyelinating event is also known as clinically isolated syndrome (CIS), a first neurologic episode caused by inflammation/demyelination in the brain or spinal cord.

Robyn Lucas, Ph.D., and Anthony McMichael, Ph.D., with The Australian National University in Canberra and colleagues across Australia reported their findings in this study supported by the National MS Society, the National Health and Medical Research Council of Australia, the

ANZ William Buckland Foundation, and MS Research Australia.

In all parts of the world, MS is more common at latitudes farther from the equator and less common in

areas closer to the equator. Previous studies have found evidence suggesting that higher lifetime exposure to sunlight – through which the skin makes vitamin D – and higher blood levels of vitamin D may reduce a person’s risk of developing MS.

The Ausimmune Study investigated whether increased exposure to sunlight in those living closer to the equator and the resultant vitamin D may be protective against MS. The team investigated sun exposure and vitamin D levels in people who had not yet been diagnosed with MS, but who had experienced a CIS, which often, but not always, leads to a diagnosis of MS.

Investigators recruited participants who were between 18 and 59 years of age, and who lived in four geographic regions of Australia between Nov. 1, 2003, and Dec. 31, 2006. The four regions were characterized by differing distance from the equator. A total of 216 people were enrolled who had experienced a CIS. A total of 395 controls were randomly selected and matched to the CIS cases in age, gender and study region.

Sun exposure was measured in several ways, including by participant reports on how much time they spent in the sun during different periods of life starting from age 6, and also by examination of the skin for sun damage and measurements of skin pigment. The latitude and longitude of participants’ residence were also recorded as an indicator of ambient ultraviolet light. Vitamin D levels were measured by a blood sample taken at entry into the study.

Results showed that higher recent or lifetime sun exposure and higher blood levels of vitamin D at study entry were independently linked with a reduced risk of CIS. Investigators reported that people with the highest levels of vitamin D at entry were less likely to have a CIS than those with the lowest levels. Taken together, differences in sun exposure, vitamin D levels and skin type accounted for a 32.4 percent increase in CIS incidence from the low to high latitude regions of Australia.

The findings provide additional support for previous suggestions that sun exposure and vitamin D may help protect against developing MS. It remains to be seen whether safe and effective strategies can be developed that utilize this potential protection without the risks involved in overexposure to the sun or overdoses of vitamin D supplements, and whether these findings have relevance for individuals who already have MS.

RESEARCH


MONEY MATTERS

TEN TIPS FOR HIRINGHOME HELPBY AL TAINSKY

Respect, honesty, compassion, compatibilityand civility are core ingredients of a successfulcaregiving relationship. But a sense of humor anda soupçon of soul don’t hurt either.

I was diagnosed with MS in 1987, but I tracethe disease back to the 1950s and a summer sohot it melted the tar on Anderson Avenue in theHighbridge section of the Bronx.

For nigh on 20 years, I have hired, fired and livedwith caregivers. I call my current live-in caregiverMr. Wizard. His technical and computer skillsare remarkable. He has a sense of humor and hetaught Sunday school for about 14 years. Hisyounger sister is developmentally disabled andthe love he feels for her shows a man of substance.

Here are a few of my tips to finding your own Mr.Wizard.

1. Have applicants supply the names, addressesand phone numbers of three personal or workreferences.

2. Hire someone with a clean driving record.

3. Have him or her agree to give one month’snotice—and do the same.

4. Don’t hire an alcoholic. (I expect my caregiversto be clean and sober in my home.)

5. Keep food separate. (Sometimes we eattogether, sometimes we don’t.)

6. The caregiver’s room should hold all thecaregiver’s goods. (I have no room for storageand nothing should hinder my movement in myhome.)

7. No sleepovers and no inviting friends overwithout permission. (I need night coverage andthat is non-negotiable.)

8. Keep your computer and printer for yourpersonal use only.

9. If a caregiver steals, lies or cheats, make a planfor coverage before firing the miscreant, soyou’re not left on your own.

10. Don’t surrender control of your life to anyone.Need help? Call a friend, call a relative, call theSociety, call the closest Independent LivingCenter and if necessary call the police.

Al Tainsky was a professional journalist andsometime writer of comedy for television when hewas diagnosed with MS 24 years ago. He continuedto live independently and to write articles forMomentum magazine, Real Living with MS, andother disability publications. He died of a heartattack in February shortly after completing thisarticle. We will miss his smarts and his spirit.

Wondering how to afford a caregiver?

Call 1-800-344-4867 to talk to an MSNavigator®. Also go to nationalMSsociety.org for the brochure, “Hiring Help at Home.”


NEWLY DIAGNOSED

THE BENEFITS OF DENIAL

Denial allows people to taketime to get used to a new situation and not focuson fears of what might happen down the road.“Denial gets a bad rap,” said David Rintell, EdD, apsychologist at Partners MS Center at the Brighamand Women’s Hospital in Boston, Mass., “but it canbe very useful and is sometimes necessary.”

Denial is a very basic defense mechanism,explained Barbara Giesser, MD, clinical director ofthe UCLA MS Program. “In the process of adaptingto chronic illness, denial can be a useful first step inthe process of acceptance.”

In fact, said Dr. Rintell, people who are unableto use denial may become disabled by anxiety.“Hopelessness is destructive—it reduces

motivation, and makes us less likely to adhere totreatment,” he said. “I encourage people to let goof the worst-case scenario and continue to live life,go to work, enjoy relationships and take some timeto get used to having MS. Loved ones can help bygiving their diagnosed friend or family member

permission to deny and thereforecope.”

However, said Dr. Giesser, denialdoesn’t work long-term. “Youhave to move past denial in orderto treat and make plans,” shecautioned. “If instead of acceptingyour diagnosis, you believe

the doctors made a mistake, you might not availyourself of appropriate therapy for both diseaseand symptom management.”

To develop a sensible perspective, it’s importantto get as much information as possible. “Find aneurologist you can work with, who allows you tobe active in your own care,” Dr. Giesser advised.“It’s less scary when you feel empowered.”

Dr. Rintell also suggested speaking with otherpeople with MS or a professional with relevantexperience. “After the initial shock, most peoplelearn that MS can be a difficult illness, but theyrealize that they will be OK with it. Being optimisticturns out to be realistic.”

Denial is not a river in Egypt. And it actually has a place in helping

people absorb a diagnosis of MS.


SAM’S CLUB RAISES NEARLY $1.2 MILLIONDOLLARS TO BENEFIT PEOPLE LIVING WITH MS.

After six short weeks of fundraising in over 600 clubs across the country,and at the conclusion of an intense MS-themed dodge ball tournamentat their annual meeting, Sam’s Club presented a check to the Society for nearly $1.2 million. Making the most of grass roots fundraising techniques that included donation jars, caramel apple and hot chocolate sales, and MS bracelet and sneaker sales in club parking lots, Sam’s Club employees rallied together to make a significant financial contribution to the MS movement.

On behalf of the National MS Society and people with MS everywhere—thank you Sam’s Club! Sam’s Club Dodge Ball Tournament

From left to right: Lindsay Wiley, Lisa Brown, Jessica Fisher, Jillian Briggs and Brooke Teeter

The Arkansas Staff at the National MS Society

Live Fully, Live Well: A Wellness program for people with MS and Their Support partnersManaging your health and wellness is an integral part of “living well” with MS. Live Fully, Live Well is a comprehensive wellness program from the National MS Society and Can Do MS, designed for people living with MS and their support partners. Live Fully, Live Well covers topics affecting the whole family living with MS in order to strengthen relationships, increase understanding and promote improved health and quality of life for the person with MS and their support partner. All four areas of this program can be integrated together or enjoyed separately to provide you with the resources, knowledge and tools to create a personalized wellness plan.

Register today for upcoming Live Fully, Live Well webinars. Next scheduled webinar is August 25 on fatigue related challenges. Visit nationalMSsociety.org and click on Living with MS and then on Live Fully, Live Well.

Aug. 25 – Fatigue-Related Challenges

Sep. 22 – Recreational Activities & Travel

Oct. 20 – planning For Your Future

Nov. 17 – How Does Exercise Fit Into Your Life With MS?

Dec. 1 – Eating Well, Eating Easy

Groups & Leaders

Batesville Area – Looking for a co-leader!! Jamie 870-834-3604

Hot Springs AreaCharles & Theresa 501-624-6033

Greater Little Rock AreaStuart 501-835-6776Merten 501-223-8427

Northeast Arkansas Susan 870-239-2561

Springdale AreaJan & Hilde 479-445-6776

Rogers AreaSusie 479-633-6694Sandra 479-685-4383

pine Bluff AreaMyKenya 870-592-0055

Van Buren AreaByna 479-650-6415Doug 479-462-9024


msconnection arkansas special edition

Documents

bike ms event

rock page

bike ms rides

years bike ms arkansas

ms supporters

little rock office

little rock fax

north little rock