ARKANSAS
SPECIAL EDITION
M OV I N G TO WA R D A W O R L D F R E E O F M S
AUGUST 2011
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
Rest stop volunteers, LaDonna Clark and crew.
Team Out Spoke’n at last year’s Bike MS Arkansas ride.
Ride the Rock PAGE 3
Participate in Exercise/ Depression Study PAGE 4
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. Continued page 2
Tips for Hiring Home Help PAGE 8
Meet the Staff PAGE 10
THE MSCONNECTION is published by the National Multiple Sclerosis Society, Arkansas, 1100 N. University, Suite 255, Little Rock, ARK 72207. Little Rock Office 501-663-8104 Outside Little Rock 800-344-4867 Little Rock Fax 501-666-4355 Arkansas E-mail staff’s first name.last name@nmss.org Website www.msarkansas.org Vice President • Paula H. Cortner Development Manager • Lisa Brown Programs & Services Manager • Brooke Teeter Programs & Services Coordinator • Jessica Fisher Special Events Executive Asst. • Lindsay Wiley Strategic Philanthropic Coordinator • Jillian Briggs Newsletter 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.
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 Deanna Duplanti, Bike participants, MS Arkansas cyclist experience our
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
Team CVC members 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
Bike MS: Ride the Rock Team Finds Inspiration to Boost Fundraising Efforts
news
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 Members of Team CVC 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.”
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.
In the wake of the news, Chenal Valley Church rallied around Brandon and his family. One way TOLL FREE NUMBER 1 800 344 4867
I 3
research
MS Trial Alerts
Investigators Recruiting for Study of Less Frequent Dosing of Glatiramer Acetate South 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.
Participants Needed for Study on Exercise and Depression Study 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.
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 UStevatrials@teva.co.il.
4 I JOIN THE MOVEMENT: nationalMSsociety.org
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 agerrtc@uw.edu.
Research Teams Report Progress from First Six Months of CCSVI Projects Six-month progress reports from seven multidisciplinary 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.
Research
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.
Jon Temme, senior vice president of research and • Dr. Fiona Costello, Hotchkiss Brain Institute, programs for the MS Society of Canada, said, “The University of Calgary, Calgary, Alberta: Her grants were selected for having the greatest team received Research Ethics Board approval in potential to quickly and comprehensively determine the fall to begin recruiting a cross-section of the significance of CCSVI in the MS disease process. people with MS compared to other neurological It is very encouraging to see how effectively the work diseases and healthy volunteers. They also has advanced among all groups.” recruited two ultrasonography experts who have begun ultrasound scanning. Dr. Costello’s The funded investigators, which include an team slowed recruitment briefly to upgrade to a integration of MS and vascular experts, reported new 3T MRI machine – twice as strong as progress in establishing their teams, putting their standard clinical MRI – that will be used to protocols in place, recruiting participants and perform MR venography scans to compare beginning their studies: against the ultrasound tests. • Dr. Jerry Wolinsky, The University of Texas Health Science Center at Houston: His team Continued page 6 applied in advance and obtained Institutional TOLL FREE NUMBER 1 800 344 4867 I 5
research
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.
From Page 5
• 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. Anthony Traboulsee, UBC Hospital MS Clinic, UBC Faculty of Medicine and Dr. • Dr. Robert Fox, Cleveland Clinic, Cleveland: Katherine Knox, Saskatoon MS Clinic, His team has received Institutional Review University of Saskatchewan: Teams at both Board approval for using MR venography, sites received Research Ethics Board approval ultrasound, MRI and clinical measures in and have begun to recruit and scan people with MS or who are at risk for MS and participants. They are also using catheter comparison groups, and recruitment is ongoing. venography and MR venography to investigate The team has obtained a new ultrasound the prevalence of CCSVI in people with MS machine previously used in other CCSVI studies. and controls without MS. The radiologists on the teams of Drs. Traboulsee and Knox met in • Dr. Carlos Torres, The Ottawa Hospital, February to ensure consistency of protocols University of Ottawa, Ontario: His team across sites. Teams are on-target for accrual of obtained Research Ethics Board approval in recruits and completion of the study. the winter and began the first phase of
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!
RID
E . VO
L U N TE E R . D
KANSAS.O R A S RG EM K I .B W W W E. T A ON
AN UNFORGETTABLE RIDE. AN UNBEATABLE DESTINATION. A WORLD FREE OF MS.
6 I JOIN THE MOVEMENT: nationalMSsociety.org
Study: Risk of First Neurologic Event Decreases with Sun Exposure and Vitamin D Higher 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.
Research
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, Robyn Lucas, Ph.D., and Anthony McMichael, including by participant reports on how much Ph.D., with The Australian National University in time they spent in the sun during different Canberra and colleagues across Australia periods of life starting from age 6, and also by reported their findings in this study supported by examination of the skin for sun damage and the National MS Society, the National Health measurements of skin pigment. The latitude and and Medical Research Council of Australia, the longitude of participants’ residence were also ANZ William recorded as an indicator of ambient ultraviolet Buckland light. Vitamin D levels were measured by a blood Foundation, and sample taken at entry into the study. MS Research Results showed that higher recent or lifetime sun Australia. exposure and higher blood levels of vitamin D at In all parts of the study entry were independently linked with a world, MS is more reduced risk of CIS. Investigators reported that common at people with the highest levels of vitamin D at entry latitudes farther were less likely to have a CIS than those with the from the equator lowest levels. Taken together, differences in sun and less common in exposure, vitamin D levels and skin type accounted areas closer to the equator. Previous studies have for a 32.4 percent increase in CIS incidence from found evidence suggesting that higher lifetime the low to high latitude regions of Australia. exposure to sunlight – through which the skin makes vitamin D – and higher blood levels of vitamin The findings provide additional support for previous suggestions that sun exposure and D may reduce a person’s risk of developing MS. vitamin D may help protect against developing The Ausimmune Study investigated whether MS. It remains to be seen whether safe and increased exposure to sunlight in those living effective strategies can be developed that utilize closer to the equator and the resultant vitamin D this potential protection without the risks may be protective against MS. The team involved in overexposure to the sun or overdoses investigated sun exposure and vitamin D levels in of vitamin D supplements, and whether these people who had not yet been diagnosed with findings have relevance for individuals who MS, but who had experienced a CIS, which often, already have MS. but not always, leads to a diagnosis of MS. TOLL FREE NUMBER 1 800 344 4867 I 7
MONEY MATTERS
TEN TIPS FOR HIRING HOME HELP BY AL TAINSKY
3. Have him or her agree to give one month’s notice—and do the same. 4. Don’t hire an alcoholic. (I expect my caregivers to be clean and sober in my home.) 5. Keep food separate. (Sometimes we eat together, sometimes we don’t.) 6. The caregiver’s room should hold all the caregiver’s goods. (I have no room for storage and nothing should hinder my movement in my home.) 7. No sleepovers and no inviting friends over without permission. (I need night coverage and that is non-negotiable.)
Respect, honesty, compassion, compatibility and civility are core ingredients of a successful caregiving relationship. But a sense of humor and a soupçon of soul don’t hurt either. I was diagnosed with MS in 1987, but I trace the disease back to the 1950s and a summer so hot it melted the tar on Anderson Avenue in the Highbridge section of the Bronx. For nigh on 20 years, I have hired, fired and lived with caregivers. I call my current live-in caregiver Mr. Wizard. His technical and computer skills are remarkable. He has a sense of humor and he taught Sunday school for about 14 years. His younger sister is developmentally disabled and the 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, addresses and phone numbers of three personal or work references. 2. Hire someone with a clean driving record. 8 I JOIN THE MOVEMENT: nationalMSsociety.org
8. Keep your computer and printer for your personal use only. 9. If a caregiver steals, lies or cheats, make a plan for coverage before firing the miscreant, so you’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 the Society, call the closest Independent Living Center and if necessary call the police. Al Tainsky was a professional journalist and sometime writer of comedy for television when he was diagnosed with MS 24 years ago. He continued to live independently and to write articles for Momentum magazine, Real Living with MS, and other disability publications. He died of a heart attack in February shortly after completing this article. We will miss his smarts and his spirit.
Wondering how to afford a caregiver? Call 1-800-344-4867 to talk to an MS Navigator®. Also go to nationalMSsociety. org for the brochure, “Hiring Help at Home.”
NEWLY DIAGNOSED
THE BENEFITS OF DENIAL
motivation, and makes us less likely to adhere to treatment,” he said. “I encourage people to let go of the worst-case scenario and continue to live life, go to work, enjoy relationships and take some time to get used to having MS. Loved ones can help by giving their diagnosed friend or family member permission to deny and therefore Denial is not a river in cope.”
Egypt. And it actually has a place in helping people absorb a diagnosis of MS. Denial allows people to take time to get used to a new situation and not focus on fears of what might happen down the road. “Denial gets a bad rap,” said David Rintell, EdD, a psychologist at Partners MS Center at the Brigham and Women’s Hospital in Boston, Mass., “but it can bevery useful and is sometimes necessary.” Denial is avery basic defense mechanism, explained Barbara Giesser, MD, clinical director of the UCLA MS Program. “In the process of adapting to chronic illness, denial can be a useful first step in the process of acceptance.” In fact, said Dr. Rintell, people who are unable to use denial may become disabled by anxiety. “Hopelessness is destructive—it reduces
However, said Dr. Giesser, denial doesn’t work long-term. “You have to move past denial in order to treat and make plans,” she cautioned. “If instead of accepting your diagnosis, you believe the doctors made a mistake, you might not avail yourself of appropriate therapy for both disease and symptom management.” To develop a sensible perspective, it’s important to get as much information as possible. “Find a neurologist you can work with, who allows you to be active in your own care,” Dr. Giesser advised. “It’s less scary when you feel empowered.” Dr. Rintell also suggested speaking with other people with MS or a professional with relevant experience. “After the initial shock, most people learn that MS can be a difficult illness, but they realize that they will be OK with it. Being optimistic turns out to be realistic.”
TOLL FREE NUMBER 1 800 344 4867
I 9
SAM’S CLUB RAISES NEARLY $1.2 MILLION DOLLARS 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 tournament at 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
The Arkansas Staff at the National MS Society
From left to right: Lindsay Wiley, Lisa Brown, Jessica Fisher, Jillian Briggs and Brooke Teeter 10 I JOIN THE MOVEMENT: nationalMSsociety.org
Live Fully, Live Well: A Wellness Program for People with MS and Their Support Partners Managing 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
Groups & Leaders Batesville Area – Looking for a co-leader!! Jamie 870-834-3604 Hot Springs Area Charles & Theresa 501-624-6033 Greater Little Rock Area Stuart 501-835-6776 Merten 501-223-8427 Northeast Arkansas Susan 870-239-2561 Springdale Area Jan & Hilde 479-445-6776 Rogers Area Susie 479-633-6694 Sandra 479-685-4383 Pine Bluff Area MyKenya 870-592-0055 Van Buren Area Byna 479-650-6415 Doug 479-462-9024
Oct. 20 – Planning For Your Future Nov. 17 – How Does Exercise Fit Into Your Life With MS? Dec. 1 – Eating Well, Eating Easy
TOLL FREE NUMBER 1 800 344 4867
I 11