Spring 2013rHode iSland cHapter

MS connection newSletter

Walk MS on April 7th will be here soon but it’s not too late for you to form a team and start fundraising! Our most successful Walk MS fundraisers either have MS or love someone with MS. They know the money raised from this signature event helps Rhode Islanders with MS and funds research to find a cure. Without the funds raised at Walk MS, our Chapter couldn’t offer popular programs like scholarships and financial assistance.

Our goal for Walk MS, which will be held in Narragansett, Bristol, and Providence, is to raise $235,000 and we need your help. Register and fundraise! For every walker who doesn’t fundraise, it actually costs our Chapter approximately $25! So raising money is critical to our success. Showing up is not enough. We want to thank sponsors ABC6, EMD Serono, Centreville Bank, and JF Morgan for their generous support.

If walking isn’t your favorite activity we encourage you to bring your bike and cycle in the MS 25 Quick Ride in Narragansett, run in the MS 5K Rhode Race in Bristol, or volunteer at any of our three Walk MS locations on April 7! Visit www.walkmsrhodeisland.org or call 401.738.8383, Option 2, to learn more.

walk MS iS april 7You Make tHe difference – Start a teaM & fundraiSe

top 10 individual fundraisers for walk MS 2012!1 LoriNunes $6,5022 JohnPereira $5,7503 AshleyMorrissey $3,3164 RobertTetreault $3,0555 RobinKettle $3,0206 Renee Holder $2,1957 RhondaO’Donnell $1,7558 BrianCallahan $1,7079 BeckyRussell $1,62010 SusanTerhune $1,375

top 10 team fundraisers for walk MS 2012!1 OneStepCloser $9,7632 4Josh $8,8423 Rhonda’sRoadrunners $6,2254 TeamBailey $5,3075 Footprints $4,7006 Sisters $4,5007 Walkin’Myelin&Myel-out $3,9368 PrayingPacers $3,3859 KettleFullSteamAhead $3,33010 Mario’sMiracles $3,145

02 MS connection: Spring 2013

walk MS april 7 - narragansett, providence, & Bristol

MS 25 Quick ride - 25-mile bike rideapril 7 - narragansett

run MS 5k rhode raceapril 7 - Bristol

Boston Muckfest MS5-mile obstacle course with mud

april 27

MS after dark wine and Beer tastingMay 9 - providence art club

Bike MS: ride the rhode150-mile bike ride

June 22-23 - r.i. and Massachusetts

MS challenge walk - 50-kilometer walkSeptember 7-8 - cape cod

MS Jet pullteams of 25 people pull a fedex 757

october 5 - warwick

2013 calendar of Special eventSall eventS are in rHode iSland unleSS otHerwiSe Specified.

to learn More, viSit www.nationalMSSocietY.org/rir

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unleaSH Your inner poet at our new workSHopS To help tap into your creative side, teacher and poet Brian Callahan will offer a series of poetry workshops at our Warwick office for clients and caregivers. A member of the Ocean State Poet Group, Callahan is an active supporter of our Chapter and we are pleased to present this new program.

The workshops will be held on April 10, 24, and May 8 from 6-7:30 p.m., and he hopes to conclude the series with an open mic night. Participants should plan to attend all of the workshops in the series and Callahan welcomes clients who use assistive technology. To register, contact Programs & Advocacy Manager Meredith Sheehan at Meredith.Sheehan@nmss.org or 401.738.8383, Option 2.

OFFICERSTheresa MolloyChairMichael CaronVice ChairPeter G. LambertonSecretaryWilliam DeRitaTreasurer

PRESIDENTKathy Mechnig

BOARD OF TRUSTEESKimberly ButlerValerie ChanouxMark McKiernanDouglas R. MooreJohn D. MulattieriJames J. Rubovits, Ph.D.Renee St. John

STAFF Megan CoteDevelopment CoordinatorCatie FauvelleDirector of DevelopmentKaren MandevilleDirector of Finance & AdministrationChristina RocheAdministrative AssistantMeredith SheehanManager of Programs & AdvocacyEricka TavaresDirector of Marketing & Communications

The National Multiple Sclerosis Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The National Multiple Sclerosis Society assumes no liability for the use of contents of any product or service mentioned. 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. We mobilize people and resources to drive research for a cure and to address the challenges of everyone affected by MS. ©2013 National Multiple Sclerosis Society, Rhode Island Chapter

04 MS connection: Spring 2013

aQuidneck iSlandNewport Hospital, Community Room 11 Friendship St., Newport 6:30 – 8:00 p.m., last Monday of each month Call Tom at 401.682.1128

tHe QuaHog group A social group for people with MS South Kingstown Public Safety Complex 1790 Kingstown Road,Wakefield 10 – 11:30 a.m., first Saturday of each month Call Joan at 401.539.2084 or Laure at 401.789.9173

poSitive perSpectiveS Social group for Young people witH MSGregg’s Restaurant, back room 1359 Post Road, Warwick 7 – 9 p.m., 2nd Thursday of each month Call Sharon at 401.738.3423

in toucHA professionally facilitated tel. support group11 a.m. – 12 p.m., 2nd Monday of each month Call the MS Society at 401.738.8383, Option 1 for more information

dare to dreaM MS Dream Center Peter T. Pastore Youth Center, Cranston YMCA 166 Gansett Ave., Cranston 11 a.m. – 12 p.m., 1st & 3rd Wednesdays of each month Call Marie at 401.944.3949

keY cluB - Social groupGreenwood Community Church 805 Main Ave., Warwick 11:30 a.m. – 1:30 p.m., first Thursday of each month Call Laurie at 401.737.2767 or Coleen at 401.228.7837

peer-to-peer groupS

connect online!We provide a variety of online tools and we invite you to be a part of them! MSconnection.orgFind and share meaningful updates, posts, videos, and articles about MS and the topics you care about most.

MSworld.orgMSWorld®, Inc., provides support and infor-mation about living with MS. It offers chat, message boards, a resource center, and more. perSonal StorieSLocated on www.nationalmssociety.org, Person-al Stories tells inspiring stories of people living with MS or committed to the MS community.

“we MoBilize people and reSourceS to drive reSearcH for a cure and to addreSS tHe cHallengeS of everYone affected BY MS.”

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March 8, 7:05 p.m.National MS Society Night with the Providence Bruins!

The P. Bruins take on the Wilkes-Barre Scranton Penguins at the Dunk! Tickets are only $16 each, a savings of 50 percent.

March 10, 9 a.m.-2 p.m.Bake Day Fundraiser & Book Signing at Great Harvest Bakery, 6670 Post Road, North Kingstown

Mrs. Rhode Island Tonya Hurteau, volunteers, and staff will be baking goodies and selling them! Every cent from a variety of baked goods will be donated to our Chapter. From noon to 2 p.m., authors will be signing copies of their books: Bet-ty J. Cotter, author of The Winters and Rober-ta’s Woods; and M.E. Reilly-McGreen, author of Rhode Island Legends: Haunted Hallows and Monsters’ Lairs and Revolutionaries, Rebels and Rogues of Rhode Island.

March 11, 6 p.m.Social Security Disability 101

Join Donna Nesselbush, founding partner of Marasco & Nesselbush, a law firm specializing in SSDI claims, and Dianne Flaherty, LICSW, a community liaison with the same firm, as they breakdown the SSDI process. Location TBA.

March 14, 3-5 p.m. MS Advocacy Day at the State House

Join us as we let our elected officials know how they can support the mission of the Society. At 4 p.m., hear Senate and House resolutions recog-nizing MS Awareness efforts.

March 26 - april 30, tuesdays, 1-2 p.m. Adaptive Tai Chi for people with MS! Register for this 6-week series with Allan Knight, a Tai Chi teacher for 16 years. To be held at our Warwick office.

March 27, 6 p.m.Managing spasticity talk and book signing for The Man With the Bionic Brain by Dr. Jon Mu-kand, Medical Director, Southern New England Rehabilitation Center, and Clinical Assistant Pro-fessor, Rehab Medicine, Brown University, Tufts University. Dr. Mukand will read from his up-coming book on the cultural history of disability, which includes a chapter on MS. Location TBA. To register, call 401.738.8383, Option 1, or visit www.nationalmssociety.org/rir.

Help uS Make everYone aware of MS!to raiSe awareneSS aBout MS, we’re Holding eventS in MarcH. pleaSe Join uS!

06 MS connection: Spring 2013

Bike MS: Ride the Rhode raised a record-shattering $880,000 last year and our amazing teams made that happen.

diprete engineering’s pt riders – $200,000+For the past 10 years, this team has raised more than $200,000 at Bike MS. Our Chapter presented team members with a special award for raising more than $22,500 for last year’s 25th anniversary of Bike MS in Rhode Island.

Dennis DiPrete, a principal at DiPrete Engineering, said the award was a tribute to his firm’s commitment to fighting MS. “Our goal is to always try and get the best results for our clients, and the same has been true for our teams that participate in Ride the Rhode,” he said. “We know our training and fundraising can help those impacted by this disease get the best support – and we want to try and keep them one step ahead of MS.” DiPrete’s sister-in-law, Pegi Thibaudeau, who has MS, was the inspiration for the team name. “We are constantly amazed by the courageous

spirit and optimism of Pegi, so we decided to ride for her and call ourselves the PT Riders,” DiPrete said.

pedal pushers - $375,000Susie McNamara and a friend cycled in their first Bike MS 15 years ago. That experience led to the McNamara family creating team Pedal Pushers, which has raised $375,000 to date.

“My mother will do just about anything for this illness,” Susie said of Mary McNamara.

In the late 1990s, Susie and her brother Patrick were both diagnosed with MS. While Susie said the disease has not really had an impact on her health and she’s never missed a day of work, Patrick is in a wheelchair.

“My mom sends a letter to every human

long-laSting SucceSS:

Bike MS teaMS raiSe Significant fundS

07nationalMSSocietY.org | 1-800-344-4867

Bike MS:ride tHe rHode

June 22-23, 2013regiSter todaY!

www.BikeMSrHodeiSland.org

being she meets,” Susie said of Mary, an All Star recruiter and fundraiser. “She has gone on airplanes and into restaurants and walked away with checks for the MS Society.”

Her determination made her the top Bike MS fundraiser for many years. But Susie said it’s a title her mother would happily relinquish.“She challenges people to raise more money than she does, that is what she wants,” she said.

Break the cycle - $100,000When Mike Caron formed the Break the Cycle team, his daughter Nicole was in high school and had recently been diagnosed with MS. That was seven years ago and Nicole has since graduated from college and is working as an RN at a hospital while pursuing her doctorate in nursing.

“She loves the job and is adjusting to the hours,” Mike said of Nicole. “Over the seven years, she is on her fourth MS drug and we are lucky to have that many options.”Break the Cycle has raised more than $100,000 since it was formed, right around the time Mike

became a member of our Chapter’s Board of Trustees. He currently serves as vice chair. “With Nicole getting diagnosed I wanted to do something to make a difference rather than sit back passively,” he said. “And I’ve had a lifelong passion for bike riding. I love it. It was a natural way for me to get involved.”He has been touched by the generosity of friends, colleagues, and family. The first year, he raised $14,000 as an individual. Creating the team helped him share the fundraising responsibility. “It’s an important aspect in doing this in a sustained way,” Mike said, noting that Nicole and his son both cycle, as do their friends, and his wife Judy volunteers. “I had to create a bike team and get other people to help to continue to bring in the amount I brought in that first year.”

08 MS connection: Spring 2013

reSearcH

progreSS on MS tHerapieSBY MEGAN WEIGEL, CNP, ARNP-C, MSCN

In 1993, Betaseron was released to market as the first disease-modifying therapy for multi-ple sclerosis. With the approval of oral teriflu-nomide (brand name Aubagio®) by the FDA in October, 2012, we now have nine disease-modifying therapies to treat relapsing forms of MS—and more on the horizon. The MS Emerging Therapies Collaborative, which includes the Society, provides downloadable information sheets at www.ms-coalition.org/emergingtherapies to facilitate communica-tion between doctors and people with MS about newly approved treatments.

Research on potential treatments for progres-sive forms of MS is also underway and the In-ternational Progressive MS Collaborative, of which the Society is a member, plans to do all it can to speed the development of those treat-ments.

Here are the therapies to keep an eye on as we move forward into 2013.

BG-12 is an oral fumarate that has been used in Europe for over a decade to treat psoriasis. Although its exact mechanism of action is not known, it is thought to inhibit immune cells ac-tive in MS and may even be protective against damage to the brain and spinal cord.

Two large phase III studies (the DEFINE trial and the CONFIRM trial, respectively) found that BG-12 significantly reduced relapses and disease activity as detected by MRI. The most common side effects were flushing of the skin and gastrointestinal upset. In 2012, Biogen Idec applied to the FDA for approval of BG-12 to treat relapsing MS, and the review process is now underway, with the FDA’s decision ex-pected within the year.

Alemtuzumab, a monoclonal antibody that depletes circulating immune (T and B) cells thought to be responsible for MS attacks, would be administered by IV infusion for five days and then for three days one year later.

Genzyme applied to the FDA for approval of alemtuzumab to treat relapsing MS, based on positive results from several clinical trials, in-cluding one that showed a 55% decrease in re-lapses compared to interferon beta 1a (Rebif ); however, the FDA asked the company to re-submit its application, so a timeline has not yet been established. While this therapy is

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powerful against MS, there is concern regard-ing adverse events, such as immune thrombo-cytopenic purpura (ITP, a bleeding disorder), and autoimmune thyroid disorders.

Laquinimod is a once-daily oral immune modulator that proved in phase III studies to statistically significantly decrease relapse rates, though not as robustly as investigators had hoped. This drug is about to be tested in an-other phase III study in 1,800 people with re-lapsing-remitting MS.

Daclizumab and ocrelizumab are two other monoclonal antibodies currently under study, with favorable results thus far. A highly con-centrated liquid formulation of daclizumab is under study in relapsing-remitting MS. Ex-perimental ocrelizumab, given intravenously, significantly reduced disease activity on MRI scans in a study of 218 people with relapsing-remitting MS. One person died due to brain edema; however, the relation of this death to the medication is unclear. Additional research, now going on in primary-progressive MS and relapsing-remitting MS, is needed to further determine ocrelizumab’s safety and benefits.

Clinical trials of treatments for progressive forms of MS are currently underway: these include natalizumab (Tysabri), fingolimod (Gilenya) and ocrelizumab.

Making cHoiceSWhen we consider treatment now, in particular the possibility of switching therapies, we weigh the safety and efficacy of our older, injectable disease-modifying agents against the seeming convenience and perhaps superior efficacy of

newer agents. The sequencing of therapies is a new consideration, as well, as the effects of medications like natalizumab and fingolimod on the immune system may be prolonged. Questions about new therapies may mean lon-ger or more frequent appointments with neu-rologists to discuss their risk-benefit ratios.

Additionally, people with MS may choose to see an MS specialist, or be referred to one by a general neurologist, for treatment recommen-dations.

However, the most encouraging part, in addi-tion to the fact that treatments for MS may be getting more effective, of course, is that the re-search pipeline is full. Thanks to those who are committed to research funding, science is able to continue searching for the cure, and on that search, discover medications that will keep this disease as quiet as possible.

To follow progress on potential MS therapies, sign up for MS eNEWS at www.nationalMSsociety.org/signup, or visit www.nationalMSsociety.org/research.

Megan Weigel is a Doctor of Nursing Practice and MS Certified Nurse who has been caring for people with MS for 12 years. This article was originally published in the North Florida Chapter’s MSConnection newsletter.

MS connection: Spring 201310

HealtHY living

iS tHiS norMal?BY LAURIE CLEMENTS LAMBETH

At a recent appointment, I listed my cogni-tive lapses over the past year.

I have mild cogni-tive impairment; I was tested af-ter 25 years with MS and suspi-

cions that I wasn’t quite up to my old speed of thought. Dividing my attention, shifting focus and finding words have steadily grown more dif-ficult. But three recent events had felt different: sudden, strange, like the seizure I had nearly 20 years ago—misfires, blips, spikes on some tiny chart kept by little scientists in my brain wearing white lab coats and horn-rimmed glasses. The charts ribbon out of their little machines, and when a blip occurs, the scientists rip them from the machines and conceal them in their lab coat pockets.

So I asked the physician’s assistant the question we all ask at some point: “Is this normal?”

SuperMarket BlipMy husband was somewhere behind me, get-ting milk while I ducked the supermarket scoot-er into a quiet aisle. He approached and said,

“Chobani’s on offer.”

“Chobani?” I said.

“You know, Chobani.”

“What . . . is . . . Chobani?” I asked slowly. His face went from quizzical to startled. I play little practical jokes sometimes, and he thought at first this was one of them. But then he realized I was far from joking. I was confused.

“You really don’t remember what Chobani is?” he asked.

“No.” I panicked. “Is it bread?” I thought of an-other word that begins with a ch- sound, but couldn’t place it. Ciabatta.

Two years before, I had come home from a trip to a writer’s retreat telling him all about the Chobani Greek yogurt I had for breakfast while I was there. So you can imagine his surprise that I did not recognize the name. I wanted to shrink into myself. How strange it felt, as though a shell of silence had formed around me and nobody could come in or let me out.

tHe “oH . . .” BlipI forgot. Please hold. I need to find my list in my purse to jog my memory. Listen to some Muzak while you wait, or talk amongst yourselves. La la la . . .

Found it: my list says, “time concept.”

I was scheduled for a haircut and color at 1:00 p.m. It takes me half an hour to 35 minutes to drive to the salon. At 11:45 I was answering email and feeling as though I had plenty of time.

nationalMSSocietY.org | 1-800-344-4867 11I took a shower. Then it was 12:20. I dressed, did my makeup. I took my time. Then I glanced at the clock. How did it become 1:09?

There was no way I could make it. I was beyond late. At 12:15 I should have been thinking of leaving. At 11:45 I should have realized I was running late. I couldn’t tie it together.

Imagine two strands of yarn. One is the hours ticking by, time itself, and at 1:00 I had my ap-pointment. The other strand of yarn represents the amount of time needed to prepare and drive. The problem is, in my head the two strands of yarn were very far apart, and parallel. I could not connect them. They were loose and felt tiny in my mind, like when my hand is weak or shaky and I can’t grasp a small object.

parking BlipAt the vet’s office there’s a steep little hill you need to accelerate to climb. At the top I eased the brake. The car sped up. Why aren’t we stop-ping, I thought. Something’s wrong with the car. I pressed harder. We headed faster toward the building. Just as I reached for the emergency brake I saw my foot firmly pressing the gas ped-al, not the brake. I lifted my foot and slammed on the brake just in time.

It took me two days to tell anyone. No harm, but I was shaken, ashamed, confused.

When I asked if having cognitive blips is “nor-mal,” the physician’s assistant paused a moment.

“It’s—common,” she said, her voice measured and lifting.

And I was grateful: more common than normal, strange but shared. n

Laurie Clements Lambeth’s first book Veil and Burn was selected for the 2006 National Poetry Series. To learn more about her work, visit

www.laurieclementslambeth.com.

wHat tHe SYMptoMS MeanUnusual symptoms should be reported to your doctor. They may signify MS-relat-ed disease activity that your doctor may wish to treat, or they may be unrelated to your MS. For example, changes in cog-nition may be caused by many different factors, including MS, depression, stress, medications (for example, some bladder medications), or aging. Your doctor may refer you to a cognitive specialist/neuro-psychologist to help you determine the cause of whatever changes you may be experiencing.

- Rosalind Kalb, PhD, vice president of Clinical Care at the National MS Society

MS connection: Spring 201312advocacY

wHat tHe legiSlation MeanS BY TED THOMPSON

After intense negotiations in January, the Amer-ican Taxpayer Relief Act of 2012 was signed into law, which averted the so-called “fiscal cliff,” a drastic convergence of increased taxes and re-duced spending. No more crisis, but what does the new legislation mean to people living with multiple sclerosis?

wHat’S in tHe lawSome of the health and other provisions in the new law that may impact people living with MS include:

n A delay until December 31, 2013, to a scheduled 26.5% cut to Medicare physicians.

n An extension to the same date of the Medicare therapy cap exceptions pro-cess, which ensures that people with MS can continue to access needed outpatient therapy services.

n A repeal of the Community Living Assistance Services and Supports (CLASS) Program, a voluntary long-term insur-ance program intended to help maintain community residence and independence. However, the law sets up in its place a

bipartisan commission tasked with develop-ing legislative long-term care alternatives.

n A delay of two months to across-the-board cuts (the “sequester”) to defense and non-defense programs, including medical re-search.

n A limit on itemized deductions for individuals making over $250,000 a year and families earning over $300,000 per year; however, no limit or cap on charitable deductions was put in place.

Make Your voice HeardThe 113th Congress was sworn in and com-menced January 3, 2013. With the across-the-board cuts only delayed for two months and the debt limit not increased, members of Con-gress will hit the ground running. Sign up at www.nationalmssociety.org/MSActivist, and follow the MS Activist blog (www.MSactivist.org) and Twitter, @MSActivist to stay tuned for opportunities to weigh in with your legisla-tors over the next several weeks on the impor-tance of protecting medical research and pro-grams like Medicaid and Social Security. n

Ted Thompson is the Society’s vice president of Federal Government Relations.

daY of activiSM in waSHington State

nationalMSSocietY.org | 1-800-344-4867 13

advocacY

victorY in Medicare SettleMentBY MARCELLA DURAND

A settlement to end Medicare’s so-called “Im-provement Standard,” which denied coverage of certain treatment services to people with mul-tiple sclerosis and other diseases, was officially approved January 24th by Chief Judge Christina Reiss of the U.S. District Court in Vermont.

The settlement to end the standard was reached in a nationwide lawsuit in which the National MS Society was a plaintiff. The Society had joined other or-ganizations including the Parkinson’s Action Network, the Alzheimer’s Association, United Cerebral Palsy and Paralyzed Veterans of America in a class-action suit to challenge the Centers for Medicare and Medicaid Services (CMS) over the standard.

The standard had denied Medicare coverage for services such as skilled nursing facilities, home health and outpatient therapy ben-efits like physical or occupational therapy to Medicare beneficiaries living with MS if they did not show improvement. However, these often-expensive services can be critical to prevent decline or maximize independence.

The settlement’s approval effectively means that any denial citing the “improvement standard” can be appealed moving forward and even dating back to Jan 18, 2011 (the date the case was filed). CMS is now tasked with revising its Medicare Benefit Policy Manual and other policies, guide-lines and instructions to ensure that Medicare coverage is available for skilled services in home health, nursing home and outpatient settings. CMS must also develop and implement a na-tionwide education campaign to ensure benefi-ciaries with chronic conditions are not denied coverage for critical services.

For more information, visit www.MSActivist.org. n

Marcella Durand is the content planning and development manager for the Society.

MS activiStS Make cHange Happen

14 MS connection: Spring 2013

living witH MS

tHree generationS of life witH MSBY APRIL BROWNLEE

“I didn’t plan my wedding when I was seven, so I guess I kind of messed up on that. I didn’t have any idea what goes into it,” laughs 21-year-old Chelsey Anderson, who is looking forward to getting married and settling into life. But for Chelsey, settling in may not mean that things ever actually settle down. She was diagnosed with multiple sclerosis at 16.

At the same time that many of her classmates were focused on homecoming and college ap-plications, Chelsey was battling her way back from her first exacerbation—a severe one. “I’m just now getting back to where I was physically before I was diagnosed with MS, and it’s been four years,” she says. “I went from your average varsity volleyball and basketball player to blind and paralyzed from the waist down. My lungs collapsed and my organs started to shut down, all within about seven hours.”

But Chelsey’s mom, Kelli, was there, is there and will be there—every step of the way. She knows MS from the inside out, as she also has the disease, just like her own mother—Chelsey’s grandmother, Pat. That makes for three genera-

tions passing down knowledge of the disease to the next. “When I tell people, they don’t believe it. I should’ve bought a lottery ticket the day I got diagnosed,” Chelsey says.

a ricH HiStorYToday, better education, knowledge and diag-nostic tools make for earlier diagnoses. Case in point: Chelsey was diagnosed at 16, Kelli at 26, and Pat at 36. And when Pat was diagnosed, there were no disease-modifying treatments. “She told me when she was first diagnosed with MS, they used to put you in a hot bath and have you stand up and then they’d check your symp-toms,” Chelsey says.

Their family history is rich, with a deep under-standing of what they have already been through and how they’ll face the future head-on together. “I’m glad my mom knew not to baby me,” says Chelsey. “You have to be strong when you have MS. It was tough love, but that has helped me tremendously. Every now and then I’ll feel sorry for myself and my mom will say ‘don’t do that.’”

While it’s been a bumpy road over the years, with lots of ups and downs, the three of them find the humor in their unique situation. “We joke that it’s my grandma’s fault that all three of us have MS. Gee, Grandma, thanks,” says Chelsey. For this family, laughter is a superpower. “Always keep moving. Never stop. If you slow down or stop you will turn to stone. And laugh every day. The key to life is laughter,” Kelli says.

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froM left, pat, cHelSeY and kelli anderSon face MS aS a faMilY

tHe next generationThese days, as Chelsey flips through bridal mag-azines, looking for the perfect dress to wear for her marriage to Shay, a firefighter, she is mind-ful of where she’s been—and where she’s going. And one question certainly stands out from the rest: What if someday her child is also diagnosed with MS? “I’d definitely be prepared and stay strong for them like my mom did for me,” she says. “Life is a rollercoaster. I never know what I’m going to get, so I might as well make the best of it. I tell my friends I’m just going to be the best at MS. Enjoy life. Don’t sweat the small stuff.”

And wiggle your toes. “That’s the first thing I do every morning,” Chelsey says. “I wiggle my

toes to make sure I haven’t lost that.” Then she heads off either to her job as a nanny or to col-lege, where she is majoring in public relations. She hopes to combine her education, her very personal experiences with MS, and all the things she’s learned from a mother and grandmoth-er who walked the same road long before her. “When I think about writing a book on my life, I just see us all just doing what we’re doing now … staying positive and staying together.” n

April Brownlee is a senior development man-ager for the Society in Amarillo, Texas, where she produces Walk MS and Bike MS events.

Free Matterfor the

Blind orHandicappedNON-PROFIT

ORGANIZATION

Rhode Island Chapter205HalleneRoad,Suite209Warwick,RI02886

Spring 2013 teleconference SerieS

tHe SpectruM of MS Below the Belt: Bladder and Bowel issues in MSApril17,Wednesday,6:30-7:30p.m.

LearnaboutcommonbladderandbowelissuesthatcanarisewithMSandwaystotreatandcope with them. Speaker: Christine St. Lau-rent, MSN, RN, MSCN MS certified nurse.RegisterbyApril10.

MS, Sex and intimacyMay8,Wednesday,6:30-7:30p.m.

A forthrightdiscussionabout thedeeplyper-sonal sideof livingwithMSandconceptsofintimacy and sexual expression. Speaker: Pa-melaS.Boyle,MS,FAACS,socializationandsexualityspecialist.RegisterbyMay1.

improving independence in progressive MSJune12,Wednesday,6:30-7:30p.m.

Howtonavigatetheworldofassistivetechnol-ogyandwaystomodifyyourenvironmentathomeandatworktooptimizeindependence.Speaker: June Halper, MSN, ANP, FAAN.RegisterbyJune5.

Toregister,call1.800.344.4867,Option1,orvisitwww.MSnyc.org.

programs & services for people with MS, including this newsletter, are made possible by

walk MS, Bike MS, and the MS Jet pull.