MSConnection Summer 2013

MS CONNECTION MOVING TOWARD A WORLD FREE OF MS | SUMMER 2013

CENTRAL VIRGINIA CHAPTER

INSIDE THIS ISSUE

STORY CONTINUED ON PAGE 8

WALK MS A LIST OF CHANGES PROGRESS ON DMDS SCHOLARSHIP WINNERS PAGE 2 PAGE 7 PAGE 8 PAGE 12

FEATURE STORY

2013 BIKE MS: RIDE VIRGINIA

On June 1-2, the Central Virginia Chapter of the National MS Society held its annual Bike MS ride, an event that takes cyclists from Rich-mond to Williamsburg in a display of athleticism and to spread awareness of multiple sclerosis.

The event hosted 451 riders who raised a total of $342,041.70. This year’s group of riders included WTVR CBS 6 anchor, Bill Fitzgerald. Fitzger-ald, a first-year-rider, whose mother-in-law passed away due to complications related to MS said, “This is kind of a no brainer for me, I can do this for her, for research and for the people who

have MS. It is a perfect coming together that we can do as a station that is deeply personal to me. It’s something that I know I am going to sweat to-day and I am going to be tired, but I am going to raise money and achieve something for my mother-in-law and those with MS.” Fitzgerald explained that the uniqueness of the bike ride really pushes you, “This event and this chapter, really goes so far to make you feel like you

AND THEY’RE OFF! On a beautiful June morning, 2013 Bike MS: Ride Virginia, presented by Page Auto Group, had 451 cyclists raising over $340,000 to find a cure for MS!

Bill Fitzgerald from CBS 6 hosted the awards ceremony

MSCONNECTION Central Virginia Chapter 4200 Innslake Dr., Suite 301 Glen Allen, VA 23060 804.353.5008 www.moveVA.org

BOARD OF TRUSTEES Chairman: Frank N. Cowan Chairman Elect: Matthew L. Austin Treasurer: James E. Sok

Sharon Barcalow John O’Connor Gregory Bishop Unsong Oh, MD Jennifer L.D. Bittmann David Saunders Susan Bodin Richard Schoepke David Carminucci Daniel B. Shoop Charlie Colpo Alan Shulman, MD Brandon Haushalter Alexander H. Slaughter Mark Householder Robert A. Vallejo Ashley Johnson James VanNess Glenn Nunziata Philip J. Wallin John O’Bannon, MD Kyle Yocom

STAFF Sherri Ellis Chapter President - (804) 591-3030 Robert McKoy VP of Operations - (443) 641-1206 Kathryn Zapach Director of Programs & Services - (804) 591-3039 Rick Holzbach Director of Development- (804) 591-3031 Tiffany Epley Development Manager - (804) 591-3036 Jessica Ramirez Programs & Services Manager - (804) 591-3038 Clare Lorio Development Manager, Teams Specialist - (804) 591-3037 Matt Gregory Systems Administrator - (804) 591-3041 Diana Oakley Manager of Finance - (804) 591-3042 Deborah Richards Finance Assistant - (804) 591-3034

Ashley Chapman Senior VA Statewide Advocacy Manager - (804) 591-3048 * Please Note: these are direct phone numbers for staff. The Main Office phone number is still (804) 353-5008 or 1-800-FIGHT MS.

If you or Someone You Know Has MS… Studies show that early and ongoing treatment with an FDA approved therapy can reduce future disease activity and improve quality of life for many people with Multiple Sclerosis. Talk to your Health care professional or contact the National MS Society at www.MoveVA.org or try our office phone at (804) 353-5008 to learn about ways to help manage Multiple Sclerosis and about current research that may one day reveal a cure.

MS CONNECTION: SPRING 2013 2

Dear Friends,

“One is not born in the world to do everything but to do something.” When I think about these words by poet, writer and philosopher, Henry David Tho-reau I think of our vision to Create a World Free of MS. Inside this issue of MS Connections, you will read about incredible volunteers that have impacted our Chapter. Without their tireless dedication, we would not be able to accomplish all that we do. Our Walk and Bike events were successful be-cause of those who offered their time to set fund-raising goals, cheer people on and commit to truly making a difference. Volunteers help with our vision in a variety of ways and on a variety of levels. Beyond our events, our Board of Trustees is a group of dedi-cated volunteers that guide our chapter in its vi-sion of a world free of MS. I would like to invite you to see where you might be able to spend a few minutes or hours each week and become a volunteer with us. The possi-bilities are endless, as will be your reward. Decide today what your “something” will be.

Warm Regards,

Sherri

FROM THE CHAPTER PRESIDENT...

2013 WALK SEASON

BE BOLD! WE NEED YOUR HELP! Volunteer at the walks or at other chapter events. To learn about the opportunities available, contact Deborah Richards at 804.591.3034

or [email protected]

WALK TO CREATE A WORLD FREE OF MULTIPLE SCLEROSIS

WALK MS: TAPPAHANNOCK Be Inspired. Get Connected. WALK MS.

Saturday, September 14, 2013 Tappahannock Memorial United Methodist Church, 345 Earl Street

Join us for food, music, time with the community and of course, a one or three mile walk through the beautiful town of Tappahannock. Our goal is

$20,000! We can do this with your help!

For sponsorship opportunities, contact Tiffany Epley.

Register and start fundraising today at:

www.iwalkforMS.org Questions or need more details?

Contact Tiffany Epley at 804.591.3036 or [email protected]

MOVEVA.ORG | 1.804.353.5008 3

WALK MS: FREDERICKSBURG Our Fredericksburg walk had 537 walkers and raised

$78,498.17 Thank you to our sponsors:

HealthSouth Rehabilitation Hospital of Fredericksburg, Presenting Sponsor PermaTreat Pest Control Team Slick Chicks Rappahannock Rotary Club Aaronal Homes Assist 2 Sell EMD Serono Luck Stone NOVEC Helps Mary Washington HC Cici’s Pizza Wegman’s Giant Utz Crown Trophy

WALK MS: KILMARNOCK Our newest walk in Kilmarnock had 129 walkers and raised

$17,909 Thank you to our sponsors: Chesapeake Bank Coldwell Banker Hanley Electrical Service Med-Air Homecare Revere Gas Main Street Pharmacy Sara Brown Salon

National Day of Dance Saturday, July 27th 2013

FREE Dance Classes 10:00 AM at Saxon Shoes, Short Pump Town

Center 1 PM at Saxon Shoes, the Village at the

Spotsylvania Towne Centre

Instructor: Kemel Patton Saxon Shoes Short Pump General Manager

Hip Hop Line Dance Instructor

Living with MS since 1995

Wear orange to help dance

our way to a cure for MS

Live · Love · Dance – with MS


28th Annual

[ÉÇÉÜ|Çz Charles S. Luck, III, Luck Companies


LIVING WITH MS

MS, THE AFFORDABLE CARE ACT AND YOU

HOW THE HEALTHCARE LAW WORKS FOR YOU On June 28, 2012, the Supreme Court of the United States upheld the Af-fordable Care Act (ACA). The bill, which was originally signed into law in 2009, and will be completely implemented in the winter of 2014, has many stag-es and many advantages for those who are currently unable to receive healthcare due to a pre-existing condi-tion or those who are unable to pay the prices of their insurance due to expensive medications. Historically, many people with MS face challeng-es with finding and keeping adequate, affordable health care coverage. People with MS are more likely to be unemployed, thus 30 percent put off seeking healthcare because they cannot afford it. A recent estimate has the average yearly cost of living with MS at seventy-thousand dollars per year, with a lifetime cost of roughly two-million dollars. Due to lack of coverage, twenty percent

of people living with MS could not fill, or refill prescriptions dosses because they did not have access or could not afford it. For those living with MS, the ACA has key provi-sions that will improve their lives. The ACA has already slowly phased in a process that will pro-hibit denying coverage due to a pre-existing con-dition, starting with a special high-risk pool. Starting in 2014, the law will prohibit discrimi-nation on pre-existing conditions. Along with that, insurance companies will no longer be al-lowed to issue lifetime caps on benefits, and an-nual benefits will be limited. Already, 2,974,000 people in Virginia, including 1,121,000 women and 817,000 children, are free from worrying about lifetime limits on cov-erage. The Affordable Care Act also fills in gaps in cov-erage for the poorest Americans by giving states

the option to expand Medicaid to individuals under 65 years of age with income below 133 percent of the federal pov-erty level (FPL) (approximately $14,000 for an individual and $29,000 for a family of four) beginning in January 2014.

The Affordable Care Act is also removing barriers for people with Medicare. With no deductibles or co-pays, cost is no longer a barrier for seniors and people with disabilities who want to stay healthy by detecting and treating health prob-lems early. In 2012 alone, an estimated 34.1 mil-lion people with Medicare benefited from Medi-care’s coverage of preventive services with no cost-sharing. In Virginia, 757,195 individuals with traditional Medicare used one or more free preventive service in 2012.

Continued on page 19

“FOR THOSE LIVING WITH MS, THE ACA

HAS KEY PROVISIONS THAT WILL IMPROVE

THEIR LIVES.”

MOVEVA.ORG | 1.804.353.5008 7

A BIG LIST OF SMALL CHANGES Small changes that can have a tremen-dous impact on daily living with MS.

Ban the TV for better Z’s. Don’t leave the TV on at bedtime. Both light and sound disrupt sleep rhythms and a TV produces both. The sound will keep your brain

activated and the light can trick the brain in-to thinking it’s time to wake up.

Make a list of people you could reach out to for help . Post the list where you can see it every day (by the phone or on the fridge) and add to it. Use it.

Take four or five deep breaths when you are feeling sluggish. This increases your oxygen intake and gives you energy, making you feel more alert.

Cool down before you exercise to increase en-ergy. Cooling accessories or a cold bath are one way. But research has shown that drink-ing a frozen slushy also improves endurance.

If you have MS and bladder is-sues, it is likely that you are al-so more at risk for a UTI. Drinking eight ounces of cran-berry juice more than doubled the protection against infec-tion compared with drinking four ounces, according to a recent study. So double up and cut your risk.

Stimulate your brain a little bit each day. The internet provides may opportunities for con-tinuing education. In fact, you can now take online courses for free (you won’t get credits though) at universities such as Princeton, Stanford, and Duke. Go to www.coursera.org for more information.

Instead of carrying clean-ing supplies from room to room, store a small set of cleaning supplies in each room where they will be used.

If you’ve been fumbling with opening doors in your home, a simple change of hardware can make it easier for you to manage. Levered handles are better for opening doors than rounded door knobs.

If making the bed is difficult, buy sheets a size larger than the mattress size.

To conserve your energy if you battle fatigue, sit on a chair or stool instead of standing to do some tasks. This in-cludes tasks that are fairly quick, like brushing your teeth in the morning, to those that take longer, such as washing the dishes. Put chairs or stools in those locations ahead of time to make it more likely that you will use them.

Trouble with coordination and tremor can be helped by raising the height of a table or desk. This can improve your sitting posture and the higher top may help stabilize your arms. Add wheels (which makes the furni-ture easier to move, but may be too unsta-ble) or place the furniture on blocks that have been designed for this purpose. Make sure the legs fit far enough down into the blocks to provide stability.

A noisy environment can work against you when you are having trouble communicating with someone, either in person or on the phone. Turning off the television or music allows you to better focus on being under-stood and on understanding others. Silence can be golden as well when you are concen-trating on a difficult task.

Excerpted from the article Getting to the Next Level One Step at a Time: Small Changes Equal Big Improvement (p.7-9) of the Winter 2013 Edition of MSFocus Magazine. To view the full article, please visit www.MSFocus.org.


can do this, that you can raise the money and make a difference, you can finish this ride, even if you have never ridden before. Seeing all these people committed, the sense of community and camaraderie is what brought me here.”

Camaraderie seemed to be a common theme with riders throughout the day. Jesse Raben, the top fundraiser with $12,201 said, “We feel so welcomed down in VA, there is much

more camaraderie, it seems that the money here will go much further than in other areas. It is al-most like a family atmosphere … They make me feel like family.” The ride didn’t just include your typical bike en-thusiast; it also included participants of all ages. The youngest rider was 11 years old and the old-

est was 84 years old. Not only did humans par-ticipate, but so did one of our four legged friends. Chester, a two-year-old Lhasa Apso also joined on this ride, riding in a basket for all 150 miles of the ride. With the help of all the participants, Bike MS, again was successful. It has become one of the more well-known bike events in Central Virginia. We here at the Central Virginia Chapter of the National MS Society would like to say thank you to all of our sponsors: Page Auto Group – Pre-senting Sponsor, McGuire Woods, Miles of Scarves, Cowan Gates, UPS, Invescopowershares, Agee’s Bicycle, Martin’s Food Store, Heartwood Wealth Advisors, EMD Serono, The Family of Nancy Monson, Team MM JR., Atlantic Bay Mortgage Group, New Horizon Security Ser-vices, WaWa, Costco, Sam’s Club, City Ice, VA State Police, CBS 6, Crown Trophy, DJ Eric Lee, Road Safe, Manchester Volunteer Rescue Squad, HAM Communication Operators, Cycle Ed’s, Performance Bike, Pete’s Bike, Pibby’s Bicycles, Contes.

Interested in riding in next year’s Bike MS: Ride Virginia? Register and begin fundraising at www.irideforMS.org or call 804.591.3041.

FEATURE STORY 2013 BIKE MS: RIDE VIRGINIA (Continued from the front page)

“…[Y]OU CAN RAISE THE MONEY AND MAKE A

DIFFERENCE, YOU CAN FINISH THIS RIDE, EVEN IF

YOU HAVE NEVER RIDDEN BEFORE.”

David Jones and Chester enjoying the ride.

Jesse Raben, 2013 Bike MS Top Fundraiser accepting his leader bike jersey.

MOVEVA.ORG | 1.804.353.5008 9

Congratulation to the 2013 Bike MS top fundraisers and teams

2013 Top Fundraisers Day of Event and fund-raising deadline (6/30/13): 1

st Jesse Raben - $12,201

2nd

Mike Hull - $10,681.91 3

rd Darma Bennett-Hull - $8,763.69

4th

Jonathan Coleman - $7,275 5

th Matthew Cheek – $6,070

2013 Top Teams Day of Event: 1

st Capital Ale House at $42,589

2nd

Team Coop $22,764 3

rd B&R Road Warriors $20,807

4th

Williams Mullen $20,222 5

th Team Davenport raising $15,340

2013 Top Teams as of 6/30 fundraising dead-line: 1

st Capital Ale House - $49,411.27

2nd

Team Coop - $23,289.14 3

rd Team Williams Mullen - $23,132.10

4th

B&R Road Warriors - $23,096.60 5

th Team Davenport - $17,759.69

2013 Top Teams based on $/member Day of Event: 1

st Team Coop - $4,553 per team member

2nd

B&R Road Warriors - $4,161 per team member

3rd

Unknown Yellow - $979 per team member 2013 Top Teams based on $/member as of

6/30 fundraising deadline: 1

st Team Coop - $4,658 per team member

2nd

B&R Road Warriors $3,849 per team member 3

rd Team Stelliza - $1,172 per team member

Register for 2014 Bike MS:

www.irideforMS.org or call 804.591.3041

MOVEVA.ORG | 1.804.353.5008 11


PROGRAMS 2013 SCHOLARSHIP WINNERS Since 2003, the Central Virginia Chapter has been awarding scholarships to highly qualified high school seniors who have a diagnosis of MS or a parent/guardian living with MS. We are proud to honor the following students for their academic efforts:

Congratulations Class of 2013 - we wish you much luck and success!

Interested in honoring a loved one by sponsoring a 2014 scholarship? Contact Kathryn Zapach

for more information ([email protected]).

EMILY BROCKENBROUGH, Ashland VA Patrick Henry High School $1000

CAMPBELL HEESE, Richmond, VA Mills Godwin High School $1000

LANDON JAY BECHTEL Chesterfield, VA Cosby High School $1000

KATHRYN BUNGARDEN Chesterfield, VA Thomas Dale High School $1000

KATI JUSTICE, Fredericksburg, VA Faith Baptist School Miles of Scarves Scholarship $3000

COURTNEY JONES Richmond VA Elijah House Academy $1000

NOT PICTURED:

ELEXISS ALLISON, Henrico VA Henrico High School $1000

MOVEVA.ORG | 1.804.353.5008 13

EVERY CONNECTION COUNTS: WHY DO YOU CONNECT?

Visit www.MSConnection.org to share why you connect.

FEATURE STORY

WORLD MS DAY 2013

On May 29, 2013, over 75 countries joined together to celebrate World MS Day. This global effort challenged people to share the words and mottos that give them strength on www.worldMSday.org. There are over 2 mil-lion people living with MS worldwide and this “share your motto” campaign helped connect people to one another not only in their own communities, counties, and states, but also across countries! In order to help celebrate and recognize the awareness this day brings to the MS community, the Virginia Executive Mansion, located in Richmond, lit up in orange!

Did you participate in World MS Day or do have ideas for 2014 World MS Day? Email [email protected] with your pictures, stories and suggestions!

A group of staff, volunteers, clients and supporters showed up for the lighting of the Executive Mansion.


Kilmarnock, September 18 | Richmond, September 19 | Fredericksburg, September 20

Join us for a silent auction, lunch & guest entertainer, David Osmond. Ladies, be ready to swoon as David sings and shares his personal story of challenge, triumph and love. David has music running through his veins, literally. He's the 4th son of Alan Osmond, oldest of the performing Osmond Brothers, and began performing as the lead singer with his own brothers when he was only four years old, a group that evolved into the admired The Osmonds 2nd Generation.

He was forced to put music on hold for several years shortly after receiving a diagnosis of MS in 2006. Then, taking his father Alan as his model, who also lives with MS, David set his sights back on making music acknowledging that he may have MS, but MS does not have him. Now whether recording a song that stirs your soul while getting your toes tapping or rousing partici-pants at a Women on the Move luncheon or speaking out with passion on a broad spectrum of plat-forms such as The Today Show to raise awareness and resources for the MS community, David in-spires people whether or not they personally have MS themselves. In recognition of his support of the MS movement and work of the Society, he received the Society's Spirit of Life Award. The honor was made even more special because he had presented his father with the inaugural Spirit award in 2000.

Please come see David at one of our three Women on the Move events!

For table sales and ticket information, contact: Tiffany Epley at [email protected]

To benefit the Central Virginia Chapter of the National Multiple Sclerosis Society

mailto:[email protected]

MOVEVA.ORG | 1.804.353.5008 15

2 Days, 50K Join the Central Virginia Chapter for Challenge Walk MS:

Chesapeake Challenge 2013 hosted by the Maryland Chapter on Sept. 7-8, 2013

Once in a while, a challenge calls that you simply must answer. Challenge Walk MS is your opportunity to answer that call. The National MS Society, Maryland Chapter is excited to offer one of the premier walking events in the country and 2013 will be no exception. Participants can continue to expect the same great route support, well-stocked rest stops and plenty of camaraderie along the way!

For more information & to register visit: www.moveVA.org and click on the Challenge Walk

button or call Rick Holzbach at 804.591.3031

REGISTER

TODAY!


PROGRAMS SUPPORT GROUP LEADER TRAINING HELD AT CHAPTER OFFICES On May 15

th, the Central Virginia Chapter of

the National MS Society partnered with Virgin-ia Commonwealth University Parkinson’s and Movement Disorders Center and the Southeast Parkinson’s Disease Research, Education and Clinical Center at the Hunter Holmes McGuire VA Medical Center to host a support group leader training session.

Support group leaders facilitate monthly sup-port or self-help groups for those people and their family members living with and affected by multiple sclerosis, Parkinson’s disease, Hun-tington’s disease and essential tremors. “Support groups are an important tool to help people cope with these complex diseases that impact more than a person’s ability to move – cognitive and mood changes, medication side effects, changing roles in the household, leaving the workforce,” said Sarah Lageman, Ph.D., as-sistant professor of neurology and neuropsy-chologist in the VCU Parkinson’s and Move-ment Disorders Center. “Groups also give peo-ple an outlet to share challenges with others who may have had similar experiences and be

able to share coping strategies.” (Dumenci, 2013) Participants not only learned about topics such as patient-centered care, recognizing overload, coping strategies, engaging and motivating oth-ers and information on helpful resources—but also had the opportunity to network with other leaders and exchange personal experiences and anecdotes, best practices, and contact infor-mation. “This program offered leaders the op-portunity to glean support from others facing similar challenges, in a sense a support group for support group leaders,” said Lageman. “The day was motivational and participants reported leaving the training re-energized with practical skills to implement with their groups.” (Dumenci, 2013) Participants traveled from around the state of Virginia to attend the training program held at the Central Virginia Chapter’s offices located in Glen Allen, Virginia.

See the full listing of self-help groups on the adjourning page or contact Jessica Ramirez for more information on Chapter support groups ([email protected]). Dumenci, Frances (2013, May 20). VCU Parkinson’s and Movement Disorders Center Co-Hosts Training Session. VCU News Center. Retrieved June 20, 2013, from http://www.news.vcu.edu/news .

“THIS PROGRAM OFFERED LEADERS THE OPPORTUNITY TO GLEAN SUPPORT FROM OTHERS FACING SIMILAR

CHALLENGES [.]”

Sarah Lageman, Ph.D., from the VCU Parkinson’s and Movement Disorders Center, addressed recognizing overload and coping strategies during the training program.

MOVEVA.ORG | 1.804.353.5008 17

PROGRAMS CENTRAL VIRGINIA CHAPTER SELF-HELP GROUPS The National MS Society recognizes that self-help groups play a role in helping people affected by MS. They provide an avenue for connection, optimism, education, personal change, advocacy and friendship. Self-help groups are led by trained volunteers and the members determine the group’s purpose and meeting agendas. The groups view the Society as a source of information and support. Below is a listing of the official self-help groups sponsored by the National MS Society. Please contact a group leader in advance if you would like to attend as groups are sometimes cancelled or meeting times changed. If you do not find a group that is convenient to you, and you think you might like to start one, contact Jessica Ramirez at 804.591.3038 or [email protected].

Hanover Group 4th Thursday - 7-8:30pm Church of the Redeemer 8275 Meadowbridge Rd. Mechanicsville, VA 23116 Leader: Dana (804)550-2280

Petersburg Day Group 2nd Thursday - 10-11:30am River View - 201 Epps St. Hopewell Leader: Melanie (804)526-9129

Petersburg Evening Group 3rd Thursday - 6-8:00pm Southside Regional Hospital 3rd Floor Classroom Leader: Quennette (434) 246-6007 (804) 731-9069

Chesterfield Day Group 3rd Wednesday - 12-1pm Johnston-Willis Hospital Board Room Leaders: Sheila (804)739-8488 Sharon (804)794-7589

South Hill Empowerment Group 3rd Wednesday - 5:30-7:30pm Community Memorial Health Ctr (125 Buena Vista Circle) Leader: Starr (434) 378-2031

Richmond Day Group 2nd Monday - 10:15-11:30am Tuckahoe YMCA (9211 Patterson Ave.) Leader: Barbara (804)747-0298

Richmond Evening Group 2nd Thursday - 7:15-8:30pm HealthSouth - Classroom 5700 Fitzhugh Ave. Leader: Lorenzo (804)921-9712

Richmond (VA Home) For people with advanced stages of MS Every Monday - 11am 1101 Hampton St. Leader: Judy (804)359-4093

Tappahannock Neuromus-cular Support 2nd Monday - 10:30am Call for location Leaders: Margaret(804)472-4781 Pat (804)443-9657

The Invincibles 3rd Tuesday - 7-8:30pm HealthSouth-Fredericksburg (300 Park Hill Drive) Leader: Belinda (540)373-4377

My Solutions—Online, Facebook Support Group for Young Adults in their 20s & 30s

To sign up, visit: http;//bit.ly/MySolutions or Contact Jessica at (804) 591-3038

Chronically Awesome Call for dates Bank of Lancaster –NorthSide(432 N. Main St., Kilmarnock,Va) Leader: Teri (804)436-4750

GROUP TIMES AND LOCATIONS VARY, SO BE SURE TO CHECK WITH GROUP LEADERS PRIOR TO ATTENDING!

LIVING WITH MS DISCLOSURE IN THE WORKPLACE PLANNING AHEAD IS KEY

Disclosing one’s MS diagnosis to your em-ployer is one of the most difficult decisions people with MS face. You need to consider carefully before making the decision to do so, as it has legal and job-related implica-tions that can be ongoing. When disclosing to an employer, there are many issues to consider. There may be good reasons to dis-close and benefits from doing so. Once infor-mation is given, however, it can never be taken back; so it’s important to make certain that tell-ing does benefit you. If you require an accommo-dation or need to take medical leave, these are reasons that require some level of disclosure. However, some people choose to disclose just for the sake of disclosing. This may reduce their

stress level or make them feel more comfortable asking for accommodations in the future when or if their symptoms change. The decision will differ from one person to another depending on symptoms, accommodations needed, and per-sonal preferences. There are several key issues to consider: who at work needs to know; when does your employer need to know; why would your employer need to know; and what do they need to know? Dis-closing your MS to your employer is something that might need to be revisited throughout your time working with MS, whether with the same

employer or a new one. Planning ahead is key as knowledge is power and this should help protect you should you decide to disclose. Under the Americans with Disabilities Act (ADA), if you work for a private employer with 15 or more employees, an employee is required to disclose if he or she needs an accommodation. The accommodation can be requested during the interview process or over the course of your em-ployment. You need to be able to perform the essential functions of your job, with or without accommodations, but in order to get the accom-modations needed, you must first disclose. Some of the practical or emotional reasons for disclo-sure include reducing stress, being able to more freely examine insurance and benefits, and it simply may make you feel more comfortable in case there is a change in your symptoms in the future. It is also important to be proactive and not delay until you have a poor performance evaluation. Once it has gotten to that point, it may be too late. Be sure to consider both the legal and practical sides of disclosure, the advantages and disad-vantages of disclosure, and explore the compo-


“ONCE INFORMATION IS GIVEN, HOWEVER, IT CAN NEVER BE TAKEN BACK [.]

MOVEVA.ORG | 1.804.353.5008 19

nents of a disclosure script. Some general sug-gestions on how to disclose include: Your disclosure should be brief, concise,

nearly devoid of technical medical terms, and end with how you manage your symp-toms so you are able to get a job done.

Show how the disability is just one aspect of your life.

Assume that the employer either knows nothing about your disability or perhaps has misconceptions. A big part of disclosing is educating your employer.

Write out your disclosure script and practice it on friends and family. Ask if it is too tech-nical, medical, or scary.

There are many resources available to help you navigate this important decision. The Job Ac-commodation Network (JAN) is a free service of the U.S. Department of Labor Office of Disa-bility Employment Policy and can be reached at http://askJAN.org or by phone at 1-800-526-7234. The National MS Society offers a disclo-sure tool online at www.nationalMSsociety.org/

DiscloseWork. The National MS Society also offers several publications that cover disclosure and other employment issues: The Win-Win Approach to Reasonable Accommodations, Dis-closure (Basic Facts Series) addresses disclosure issues in both personal and professional rela-tionships, A Place in the Workforce includes an article entitled “Disclosure or Not, ” and ADA and People with MS. These publications can be obtained online at http://www.nationalmssociety.org/multimedia-library/brochures/employment-issues/index.aspx. The National MS Society can provide assistance and support regarding your employment ques-tions. Call 1-800-344-4867 to speak with an MS Navigator. You can discuss disclosure is-sues and accommodation strategies, as well as obtain referrals to other employment resources. Whatever you decide, don’t do it alone. Re-member that no two situations are the same and you want to be the one in control.

LIVING WITH MS

MS, THE ACA AND YOU (Continued from page 6) Under the new health care law, insurance companies must provide consumers greater value by spending generally at least 80 percent of premium dollars on health care and quality improve-ments instead of overhead, executive salaries or marketing. If they don’t, they must provide con-sumers a rebate or reduce premiums. This means that 686,738 Virginia residents with private in-surance coverage will benefit from $43,127,639 in rebates from insurance companies this year, for an average rebate of $115 per family covered by a policy. Overall, there are many structural changes in the healthcare system, some immediate, others on a schedule. The National MS Society will continue to analyze how new provisions will impact peo-ple and families living with MS. For general questions about the healthcare reform, we encourage you to visit: www.healthcare.gov. If you have any questions about how ACA will impact your MS treatment call the National MS Society at 1-800-344-4867 or visit online at www.nmss.org.

http://askJAN.org

http://www.nationalMSsociety.org/DiscloseWork




http://www.nationalmssociety.org/multimedia-library/brochures/employment-issues/index.aspx
















http://www.healthcare.gov

http://www.nmss.org

4200 Innslake Dr., Suite 301 Glen Allen, VA 23060

www.moveVA.org

Find us on Facebook MSCentralVA Follow us on Twitter @MSCentralVA

UPCOMING PROGRAMS & EVENTS

THURSDAY–SUNDAY, AUGUST 15-18 2013 Kids Camp

SATURDAY & SUNDAY, SEPTEMBER 7 & 8 2013 Challenge Walk

SATURDAY, SEPTEMBER 14 2013 Walk MS: Tappahannock

WEDNESDAY, SEPTEMBER 18 Women on the Move: Kilmarnock

THURSDAY, SEPTEMBER 19 Women on the Move: Richmond

FRIDAY, SEPTEMBER 20 Women on the Move: Fredericksburg

TUESDAY, OCTOBER 1 Dinner of Champions

To register for or to get more information about these or other

events, visit www.moveVA.org and click on the calendar.

MSConnection Summer 2013

Documents

Transcript of MSConnection Summer 2013