SUMMER 2016
NORTHERN CALIFORNIA CHAPTER
MS CONNECTION NEWSLETTER
INSIDE 04 THIS ISSUE
ADVOCACY
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PROGRAMS CONNECTION
LIVING WITH MS
SPECIAL EVENTS
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MS CONNECTION: SUMMER 2016
LETTER FROM THE PRESIDENT
TAKING STEPS TOWARDS A CURE
It’s hard to believe, but we are already halfway through 2016. Time flies, especially when you’re busy preparing for an event like Walk MS. This year marked another impactful spring Walk MS season with almost 8,000 participants coming together to change the world for those they care about who live with MS throughout Northern California. I am thrilled to announce that we have raised over $1.5M across out thirteen walk sites.This is an incredible achievement, and I am beyond thankful for all of the hard work and dedication of our participants. The funds raised through Walk MS will go towards groundbreaking MS research as well as programs and services to help those with MS live their best lives. The Chapter’s upcoming programs and local self-help groups are great resources for people affected by MS, and the entire list can be found beginning on page six. Fundraising dollars also allow the Society to provide scholarships to students who either live with MS, or have a parent with the disease. Read more about this year’s most deserving recipients on page three. There are many opportunities to become involved with the Society throughout the rest of the year. The National MS Society hosts 100 bike rides a year—become a part of the sixth largest Bike MS event in the country— Waves to Wine (Sept. 24-25). Or, if your preference is playing in mud then consider Muckfest MS (Oct. 1). You may also join the movement in other ways including making a donation, volunteering your time, or becoming an MS Activist. You can find more information about each of these options throughout this edition of MS Connection. I look forward to your engagement with us. Together, we are stronger than MS. Gratefully,
CONNECT WITH US ONLINE:
Janelle Del Carlo, Chapter President
www.nationalMSsociety.org/CAN
MSNorthernCal MSnortherncal NorCalNMSS
THANK YOU FOR PARTICIPATING IN WALK MS! PRESENTED LOCALLY BY
LOCAL SPONSORS
8,000 PARTICIPANTS
RAISED MORE THAN
$1.5 MILLION
SUTTER HEALTH HEALTHLINE CHUCK PATTERSON AUTO WORLD
STANFORD
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NATIONALMSSOCIETY.ORG/CAN | 1-800-344-4867
SCHOLARSHIPS
CONGRATULATIONS, SCHOLARS! An MS diagnosis in the summer of 2015 left Madison with two choices – “I could either fall or retrain myself to balance. I am determined to not let MS define me. My aspirations and passions haven’t shifted, only the way I approach them.”
Madison Harper
Madison plans to study communications and one day work for a non-profit organization where she can advocate for others and help create a world free from diseases. Please join us in congratulating Madison and four additional 2016 Northern California scholarship recipients!
MS SHOULDN’T STAND IN THE WAY OF AN EDUCATION... The National MS Society’s scholarship program helps highly qualified students who have been diagnosed with MS, or who have a parent with MS, achieve their dreams of going to college. In 2016, the Society awarded over $1 million awarded to 815 scholars. Learn more at nationalMSsociety.org/scholarship.
NATIONAL MULTIPLE SCLEROSIS SOCIETY
Northern California Chapter 1700 Owens Street, Suite 190 San Francisco, CA 94158 1-800-344-4867 Chair: Jay Thayer Chapter President: Janelle Del Carlo Editor: Emily Hazlett Designer: Nare Ovsepian Copywriter: Jenna Tucker © 2016 National MS Society, Northern California Chapter; Published Quarterly—Summer 2016
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.
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MS CONNECTION: SUMMER 2016
ADVOCACY
FROM CAPITOL TO CAPITOL Spring 2016 marked one of the most productive times for MS Activists in recent memory, thanks in part to the Public Policy Conference in Washington, D.C. and California State Action Day. Meetings and follow-ups made by MS activists had an incredible impact by growing co-sponsorship of the Advancing Research for Neurological Diseases Act, securing over half of Congress’ support for the National Institute of Health’s funding request, and gaining the support of 80 representatives for MS research through the Congressionally Directed Medical Research Program (CDMRP). Tom Campbell was one of 26 activists from our California delegation to travel across the country to attend the Public Policy Conference. He shares his experience attending both spring events.
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Being a member of the Government Relations Committee has shown me that our voices really can make a difference, that legislators do in fact listen to us, and that the work we do in government is critically important to effecting change for people with MS. —Matt Cohen, San Francisco District Activist Leader and Government Relations Committee Member
“I’ve always worked in government relations, and when my MS diagnosis came 12 years ago, I felt a calling to use my background to help MS activism. The officials I meet with often have pre-conceived notions about MS, and don’t know the impact their decisions have on people with multiple sclerosis, but after I meet with them they do. “This March, I had the honor of attending the Public Policy Conference for two days of training, followed by a day on Capitol Hill. We discussed federal funding for MS research and related issues with four congressional offices. I shared my personal story to bring our public policy issues to life, namely the accessibility and affordability of health insurance and prescription drugs. Legislators and staff often cannot yet commit to supporting the MS policy agenda, but this sets the stage for longterm follow-up. Making personal connections cuts through the otherwise intimidating landscape of government.” n
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Joining forces with hundreds of others while visiting the nation’s Capital, as well as the state’s, offered me the chance to share my personal story with key law makers while demonstrating the larger MS community’s determination and perseverance in working to improve the lives of persons with MS. —Sue Higgins, Vice Mayor of Oakley and District Activist Leader
NATIONALMSSOCIETY.ORG/CAN | 1-800-344-4867
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ADVOCACY
CALIFORNIA STATE ACTION DAY
Two weeks after the Public Policy conference, MS Activists from all over the state joined forces at California State Action Day. Participants heard from the Chair of the Senate Health Committee, Sen. Ed Hernandez and visited 90 members of the state legislature, advocating for multiple pieces of legislation including: Patient Cost Sharing (CA - SB 923): Protects consumers from changing co-payments, coinsurance, deductible, or any other cost-sharing requirements during the plan year, unless required by a change in state or federal law. Telehealth Access (CA - AB 2507): Requires health plans to include telehealth as a reimbursable service. For people living in rural areas or who are unable to travel to a doctor’s office, telehealth services have the ability to improve the quality of care provided to patients and their families, and facilitate equal access to MS specialists. Timely Access to Care & Consumer Call Center Rights (CA - SB 1135): Requires that health plans notify patients of their right to timely access to care and language assistance through existing plan documents and communication channels. This bill will help ensure that people living with MS can avoid costly and potentially damaging delays in obtaining health care services. Neurological Diseases Act (H.R. 292/S.849): Establishes a data collection system to track the incidence and prevalence of neurological diseases, including MS. Information collected will provide a foundation for evaluating and understanding aspects of diseases and help fill in any gaps in knowledge—such as the geography of diagnoses, variances in gender, disease burden and changes in healthcare practices among patients. n
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CONNECT WITH OTHERS PLEASE CONTACT THE GROUP’S FACILITATOR(S) TO LEARN MORE ABOUT A SPECIFIC SELF-HELP GROUP LISTED BELOW OR CONTACT THE CHAPTER AT 800.344.4867.
BAY AREA • Alameda - Sharon: 510-521-6260, Ray: 510-522-5210 • Antioch - Sue: 925-813-9069 • Berkeley: Lunch Group (meets periodically) - Toni: 510-653-4534 • Brentwood: MS Lunch Bunch - Kathy: 925-286-7674, Julie: 925-513-4686 • Corte Madera - Vicki: 415-892-7370, Anita: 415-892-5548 • Dublin - Sunshine: 925-216-3255 • East Bay Community Group: MS Fight Club - Stacey: 510-332-7393 • East Bay: Lesbians - eastbaymsgroup@gmail. com • El Cerrito - Thad: 510-528-8540 • Foster City - Eli: 650-377-1970 • Fremont - Marie: 510-520-7276 • Mt. Diablo (Concord) - Cindy: 925-2653184, Jan: 925-372-0859 • Oakland - Katrina: 510-523-1891 • Oakland: African Americans - Karen: 510-757-3290 • Oakland: Latinos Bilingual Group (Se habla español) - Elsa: 510-777-1414
• San Francisco: UCSF MS Self-Help Group – Andrew: 415-230-6678, ext. 73004 • San Francisco: Young at Heart Group George: 415-724-0064, Ann: 415-573-8949 • Walnut Creek - Jodi: 925-708-9387, Ché: 216-225-6508 NEW GROUP!
AT-HOME TELEPHONE GROUP
CENTRAL VALLEY • Manteca - Rebecca: 209-505-6438, Lorna: 209-815-8820 • Merced: MS Challengers - Susan: 209631-7279 • Modesto - Marti or Jane: 209-521-8956 • Modesto: Women’s Coffee Talk - Clarissa: 559-871-3180 • Stockton (AM) – Laurie: 209-915-1730, Velma: 209-951-2264 • Stockton (PM) – Brenda: 209-951-0536, Mary: 209-334-5670 • Tracy – Linda: 209-833-6882 • Turlock – Frances: 209-883-3526
GREATER SACRAMENTO • Auburn - Loreen: 530-320-1711, Ruth: 530-888-8388 • Carmichael: Moving on with MS Michelle: 916-600-1958, Kara: 916-3909480, Denise: 916-771-4413
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NATIONALMSSOCIETY.ORG/CAN | 1-800-344-4867
SELF-HELP GROUPS
• Jackson - Joanne: 209-304-1480
• Sonoma - Susan: 707-800-7837, Debbie: 707-548-8437. The Sonoma County MS Group is recruiting new board members! Please contact Melinda DeMetri at 707849-0695 or mels_dragon@yahoo.com for more information.
• Lincoln - Marilyn: 916-434-6898
• Yuba City - Evon: 530-701-2189
• Elk Grove - Letitia: 916-896-7764, Dorothy: 916-684-6849, Willie: 916-6841677, Pamela: 916-685-6662 • Grass Valley - Erica: 530-559-4517
• Placerville - Doris: 530-622-5673 • Sacramento: MS Adapters - Kim: 916821-6133, Stephanie: 916-215-5356, Debbie: 916-837-2019 • Sacramento: MS Musings of the Mind Writing Group - Irene: 916-993-6778 • Sacramento: Yoga and Tai Chi Support Group - Cynthia: 916-682-9030, Evelyn: 916-391-1365 • Vacaville - Marian: 707-580-0112 • Woodland - Shannon: 916-821-3576
NORTH STATE • Chico - Amy: 530-863-7818, Tracy: 530343-3623 • Eureka - Ann Louise: 707-839-0177, Kim: 707-445-9803 • Fort Bragg - Joanne: 707-937-4929 • Guerneville - Kristina: 707-217-0289 or 707-604-6199 • Petaluma – Cassie: 707-2413391, Connie: 707-631-2336 or mspetalumagroup@gmail.com NEW GROUP! • Redding: HOPE 4 MS - Beth: 530-2468404, Patricia: 530-222-7277, Robyn: 530-246-2980
SOUTH BAY • Capitola - Jon: 831-332-5265, Estefana: 831-406-9127 • Hollister Group - Joann and Andrew: 831-630-0266 • Monterey - Veronica: 831-869-1684 • Monterey: Young, Strong & Fighting On (under 40) - Nikki: 760-902-2431 NEW GROUP! • Palo Alto - Kathy: 408-921-9888 • San Jose - Marie: 510-520-7276 • Santa Clara - Susan: 408-253-4489, Bruce: 408-978-9648 • Santa Clara Living Well Group - Elise: 408-314-1261
ONLINE • Online: Second Life - John: 916-708-9708 Are you interested in volunteering with the Northern California Chapter of the National MS Society? Becoming a Self-Help Group leader is a great way to get involved and give back to your community! If you have never led a group, that’s okay training and guidance will be provided. We are currently seeking leaders in Napa, Redding, Lodi, and Calaveras. If you are interested in the Redding or Napa groups, please contact Amy Clark at 415-230-6678 ext. 75207 or amy.clark@nmss. org. For Lodi or Calaveras, please contact Andrea Covolo at 209-214-6022 or andrea.covolo@nmss.org
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PROGRAMS CONNECTION
NEWLY DIAGNOSED ORIENTATIONS AVAILABLE IN-PERSON OR ONLINE
Hearing the words “you have multiple sclerosis” can set off a flood of emotions, fears and questions. But the information and support you need most can be found through the National MS Society. Join Society staff and MS health professionals in an open conversation about the disease, and discover how wellness practices can help you live your best life with MS.
ONLINE
Thursdays, July 14 & September 8 6:00pm – 7:00pm, Online and over the phone Presented by Dr. Elizabeth Crabtree-Hartman, Associate Clinical Professor of Neurology at UCSF and Director of Patient Program Development at UCSF’s MS Center.
IN-PERSON
To schedule a one-on-one Newly Diagnosed Orientation, please contact: Napa, North Bay, North State, and Sonoma Counties: Amy Clark at 530-863-7818 Central Valley: Andrea Covolo at 209-214-6022 Bay Area or Greater Sacramento Area: Zoe at 916-927-9113 South Bay: Philip Anzada at 408-988-7587 ext. 74102
LIVE FULLY, LIVE WELL: A COUNSELING GROUP FOR PEOPLE NEWLY DIAGNOSED WITH MULTIPLE SCLEROSIS Tuesdays, September 13 to November 1 7:00pm – 8:30pm Sutter East Bay Medical Foundation Community Room 2500 Milvia Street Berkeley, CA
This group will enable participants to express how they have been affected by MS and allow them to develop strategies to live well with MS. Participants will have an opportunity to learn about both psychological and physical wellness, develop an individualized wellness plan, and find personal strength to overcome obstacles. The group is open to those who have been diagnosed with MS for less than three years and will be led by a licensed therapist. Presented by:
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PROGRAMS
To register for a program, visit nationalMSsociety.org/CAN and select the Calendar, or call (800) 344-4867.
RELATIONSHIP MATTERS Having a healthy relationship is hard work, and MS can make it even harder. When you know how to take charge as a couple, MS doesn’t have to rule your relationship. This program can help you strengthen your partnership and minimize the impact of MS on your life. The workshop is open to any couple in a committed relationship, regardless of marital status. Through interactive group activities, you’ll learn and apply skills to deal with common relationship challenges. What will we learn? • To address communication and problem solving issues all couples may face • To look specifically at how MS can impact communication in a relationship • Strategies couples use to address challenges This overnight destination weekend includes some meals and your hotel stay.
KEEPING THE FLAME LIT: INTIMACY AND SEXUALITY
Intimacy and sexuality are important components of a healthy and contented life. They do not have to disappear when one partner has MS. Instead, partners can find satisfying ways to overcome the barriers. Learn about the issues that can arise, as well as strategies to combat them and keep the flame lit. Wednesday, September 14, 6:30pm Mercy Medical Center, McKinley Room 3000 Q Street, Sacramento, CA
South Lake Tahoe Saturday, July 9 - Sunday, July 10 | $100/couple The Ridge Resort 400 Ridge Club Dr., Stateline, NV 89449 Monterey Saturday, July 23 – Sunday, July 24 | $100/couple Monterey Tides Hotel 2600 Sand Dunes Drive, Monterey, CA 93940 Sacramento Saturday, August 13 – Sunday, August 14 | $100/couple Embassy Suites Sacramento Riverfront Promenade, 100 Capitol Mall, Sacramento, CA 95814 Mendocino Friday, August 26 – Sunday, August 28 | $150/couple Little River Inn 7751 CA-1 Little River, CA 95456 Sonora Saturday, August 27 – Sunday, August 28 | $100/couple Best Western Sonora Oaks 19551 Hess Ave, Sonora, CA 95370
ARE MY COGNITIVE PROBLEMS ALL IN MY MIND? Ever pose the question “What did I come in here for?” and then wonder “Is that normal or is this a bad sign?” These types of questions can bring about concerns, but scientists are studying unique ways to prevent cognitive decline. Dr. Trettin will discuss how small changes to lifestyle habits can potentially promote brain health and wellbeing. Wednesday, July 13, 6:30pm Mercy San Juan Medical Center Lukens Auditorium, 6555 Coyle Ave Carmichael, CA
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PROGRAMS
FREE FROM FALLS
Falls Prevention Awareness Day is September 22, 2016, and the National MS Society is here to help you reduce your chances of falling. The Society’s Free From Falls program teaches participants risk factors commonly associated with falls and identifies strategies to prevent them. Aside from the physical impact that a fall can have, the experience can lead to a loss of independence and confidence. Many common MS symptoms make falls more likely, such as incoordination, weakness, dizziness and vertigo. Plus, neurological damage caused by MS can affect how the brain perceives body movement and position, which impacts how quickly someone is able to react to an obstacle. Attend one of the upcoming Free From Falls workshops in Northern California and learn tips and tricks to prevent falls, plus develop a fitness plan to improve balance, endurance, strength and mobility. Through this program, you will be able to increase your overall confidence about avoiding falls and managing them if they do occur. Register now and prepare yourself for Falls Prevention Awareness Day and for the future. Monterey Thursdays July 21 to August 25 4:30pm - 6:00pm CHOMP Hartnell Professional Center 576 Hartnell Ave, Monterey
Salinas Saturday September 3 10:00am – 3:00pm CHOMP Salinas Campus 1910 North Davis Road, Salinas
Palo Alto Mondays September 12 to October 31 9:30am – 11:30am Stanford Neuroscience Health Center 1st Floor Wellness Center 213 Quarry Road, Palo Alto
GENTLE YOGA FOR MS Add a weekly gentle yoga class to your routine and stay active! Manteca Thursdays, 11:00am – 12:00pm Brain & Body Yoga & Tai Chi Studio 1236 N. Main St, Suite B, Manteca Contact: Kamal at 209-824-9642 Modesto Tuesdays, 10:30am – 11:30am National MS Society Office 422 McHenry Ave, Modesto Contact: Richard at 209-380-5955 Saratoga Thursdays, 10:30am – 12:00pm Prince of Peace Lutheran Church Wellness Center 12270 Saratoga Ave, Rooms 5 & 6 Saratoga Contact: Thea at 408-489-9436 Turlock Thursdays, 11:00am – 12:30pm I Am Yoga Wellness Studio 2031 Geer Rd, Turlock Contact: 209-667-8100 (Studio) Arcata - New Class! Starting July 12th Call 800-344-4867 for details
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NATIONALMSSOCIETY.ORG/CAN | 1-800-344-4867
COFFEE CONNECTIONS
Looking to connect to others in the area living with MS in a relaxed setting? Come to one of our upcoming Coffee Connections to grab some coffee, get questions answered and make connections.
Capitola September 22 | 10:00am Zizzo’s Coffee House 3555 Clares Street Davis July 11, August 8, September 12 | 10:00am Panera Bread, 609 3rd St Dublin September 8 | 10:00am Tous les Jours 7151 Amador Plaza Rd Elk Grove September 12 | 10:00am Peet’s Coffee & Tea 8234 Laguna Blvd, Ste 100 Eureka September 1 | 10:00am Old Town Coffee & Chocolates 211 F St
Folsom August 8 | 10:00am La Bou Bakery and Café 404 Blue Ravine Rd, Ste 600 Hollister July 21 | 10:00am Mars Hill Coffeehouse 610 San Benito Street Merced September 21 | 10:00am Wired Coffee Bar 450 W 18th St Modesto August 24 | 10:00am Greens Table 501 Bangs Ave Oakland July 19 | 10:00am Peet’s Coffee & Tea 5095 Telegraph Ave, Ste 1
Palo Alto July 14 | 10:00am Palo Alto Café 2675 Middlefield Rd Sonora 1st Thursday of the Month in July, August, September | 11:00am Schnoog’s Cafe, 1005 Mono Way Stockton September 14 | 10:00am House of Shaw Espresso Café 227 Dorris Pl Seaside August 25 | 10:00am Erik’s DeliCafe 840 Obama Way Santa Clara August 18 | 10:00am Big Mug Coffee Roaster 3014 El Camino Real
To register for a program, visit nationalMSsociety.org/CAN and select the Calendar, or call (800) 344-4867.
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PROGRAMS
GET SOC Mix & Mingle Join us and meet others in your local community who are living with MS or who love someone who is! We will have light appetizers, and drinks will be available for purchase. Tri-Valley | July 16 | 11:00am The Rock House Pub and Grill, 1840 Portola Ave, Livermore Monterey | July 22 | 5:00pm Tarpy’s Roadhouse, 2999 Monterey Salinas Hwy, Monterey Santa Cruz | August 17 | 5:00pm West End Tap and Kitchen, 334D Ingalls Street, Santa Cruz Humboldt | August 31 |5:00pm Bittersweet, 828 I St, Arcata MS Social at Yogurt Mill Join us to meet others in the Central Valley who are living with MS, or who have a friend or loved one living with MS! You can learn about MS, local resources, or simply make some new friends. Yogurt will be provided by the MS Society. Tuesday | July 19 | 7:00pm 3900 Pelandale Ave, Modesto, CA
Strike Out MS: A Night at the Ballpark! Wear your brightest orange for an evening at the ballpark as volunteers, staff, and families with MS cheer on the San Jose Giants while they take on Rancho Cucamonga. Enjoy dinner on a private field level patio perfect for connecting with others living with MS. Sunday | August 21 | 5:00pm San Jose Giants Municipal Stadium 588 East Alma Avenue, San Jose, CA $20 per person Orange Friday: Giants vs. NY Mets Game Wear your brightest orange for an evening at the ballpark. Enjoy the chance to mingle with others during happy hour before the game. Friday | August 19 | 5:00pm 24 Willie Mays Plaza, San Francisco, CA $30 per person
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NATIONALMSSOCIETY.ORG/CAN | 1-800-344-4867
PROGRAMS
IAL THIS SUMMER! YES Company Les Miserables Winner of over 100 international awards and seen by over 65 million people worldwide, Les Misérables is an epic and uplifting story about the survival of the human spirit with one of the most memorable scores and characters to ever grace the stage. Join others in the MS community and enjoy one of the finest musicals ever written. Saturday | July 23 | 3:00pm Gallo Center for the Arts 1000 “I” Street, Modesto, CA Clay Day MS Connect Crafting Social Let your creative juices flow. Mold and shape clay to create a piece for yourself or a friend while you connect with others living with MS. A light lunch will be provided. No experience is required, and all ability levels are encouraged to attend. Saturday | September 17 | 11:00am Chico Ceramics Center 198 E. 11th St., Chico, CA $5.00 suggested donation Crafting Connections Find your creative side with crafting events in your community. No experience is required and all ability levels are encouraged to attend. 1st Wednesday of the month | 10:00am – 12:00pm National MS Society, 422 McHenry Ave, Modesto
American River South Fork Rafting Adventure Grab a paddle and climb aboard! Environmental Traveling Companions is leading a trip just for people living with MS! This activity is great for people of all mobility levels, but only those ages 12 and older, please. Previous experience is not necessary. Space is limited, so be sure to sign up and reserve your spot early! Please bring a hearty lunch for a picnic on the beach and snacks that are easy to eat on the water. Equipment, safety gear and instruction are provided. To register, please contact Oren Frey at Environmental Traveling Companions at 415474-7662 ext. 15 or riverprogram@etctrips.org Saturday | August 27 | 9:30am Environmental Traveling Companions River Camp, Coloma, CA $35 per person
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PROGRAMS Carepartners of MS Support Meeting MS happens to families, not just to individuals. When a person is diagnosed with MS, there is immediate impact on all who love them. Family members experience similar emotions to adapting to MS in their lives as the person with MS. Meet and chat with others that love someone with MS. Light snacks and drinks will be provided. Saturday | August 13 | 1:00pm NMSS Santa Clara Office 2589 Scott Blvd, Santa Clara
Managing Bladder and Bowel People with MS may find that bladder and bowel symptoms prevent them from fully interacting with their community, friends and family. They may feel embarrassment about such symptoms, or wrongly assume that bladder and bowel changes are related to normal aging—or even that nothing can be done. These common MS symptoms ca be manageable and treatable, with the potential to profoundly improve quality of life and, ultimately, overall health. Chapter staff will show a DVD and lead an interactive discussion. Please join us at any of the following Self-Help Groups for this program: Alameda Self-Help Group Saturday | July 16 | 11:00am Alameda Hospital 2070 Clinton Ave, Alameda, CA 94501 Conference Room C Salinas Self-Help Group Friday | August 19 | 11:00am Salinas Valley Memorial Hospital Downing Resource Center, Room A 450 E Romie Ln, Salinas, CA 93901 Tri-Valley Self-Help Group Saturday | August 20 | 11:00am Location TBD Palo Alto Self-Help Group Monday | August 22 | 7:00pm Stanford Neuroscience Health Center Wellness Room 1511 213 Quarry Road, Palo Alto, CA 94305
North American Educational Program:
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NATIONALMSSOCIETY.ORG/CAN | 1-800-344-4867
PROGRAMS The UCSF Multiple Sclerosis Center is proud to present a new initiative to provide up-todate Gender Based Care in MS. Please join us at an upcoming session. Living Well with MS During the Menopausal Transition Thursday August 11, 2016 6:00pm -7:30pm National MS Society, Second Floor Conference Room 1700 Owens Street, San Francisco
COMMUNITY PARTNER SPOTLIGHT: ANIMALS & MS Tuesday, July 19 | 6:00pm - 7:30pm National MS Society Santa Clara Office 2589 Scott Blvd., Santa Clara Have you heard of Equine-Facilitated therapy? Are you curious about service dogs? Come learn all about how you can integrate animals into your MS care. Dr. Cherié Page with DreamPower Horsemanship will lead an equine empowerment group open to adults living with MS. Learn what EquineFacilitated Psychotherapy is and how it relates to MS. Kathy Waddell from Operation Freedom Paws (along with her with her service dog, Crystal) will explain the differences between service and therapy dogs along with the different models of training, etiquette and much more.
Managing MS Before, During and After a Pregnancy: 2016 Updates Thursday September 8, 2016 6:00pm – 7:30pm UCSF Women’s Health Resource Center 1855 4th Suite A3473, San Francisco
COMMUNITY PARTNER SPOTLIGHT: Q & A WITH DR. TASCH Thursday, September 8 | 6:30pm - 7:30pm National MS Society Santa Clara Office 2589 Scott Blvd., Santa Clara Hear from Santa Clara Kaiser Neurologist Dr. Tasch as he talks about recent news with MS and answers your questions in this open forum style evening. Dr. Tasch is the Chief of the Department of Neurology of the Kaiser Permanente in Santa Clara and a member of the National MS Society’s Northern California Healthcare Advisory Committee.
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LIVING WITH MS
WE ARE STRONGER THAN MS The new National MS Society awareness campaign Together We Are Stronger features people impacted by MS and how their fierce resolve has developed solutions that unite us and make us stronger than MS. This unique campaign was developed pro-bono in partnership with the renowned advertising agency Wieden+Kennedy, and was highlighted in March for millions of people to see on electronic billboards in New York City’s Times Square, Port Authority, Penn Station, and Macy’s Herald Square locations, among many other activities across the country. At WeAreStrongerThanMS.org, you can find these diverse, innovative solutions to overcoming the challenges of multiple sclerosis, demonstrating how together we are stronger than MS. Stories include that of Colorado resident, Dan Melfi, who says it is part of his family culture to fish. “My grandfather was a great fly fisherman into his late 90s,” remembers Dan. “It’s going be tough for me to stream fish from now on,” says Dan, referring to mobility challenges related to his 2009 MS diagnosis and the hike that is often required to access a stream. “I can’t stand for an extended period of time. And, I can’t fly fish where you stand out in the middle of the stream.” So Dan found and stocked a special vest — a
VIEW DAN’S VIDEO AT http://ntl.MS/keepfishing fishing coat — with everything he needs: “my fly book, bait, bug spray.” The coat is lightweight so Dan can wear it, with the strap of his folding chair slung over his shoulder, as he uses his arm crutches to travel from his car to the lake’s edge. “I don’t have the ability to stand. So I take the chair.” Dan loves that he can stay out fishing “for hours, because I have the chair. And my pole. And everything’s on my body.” “Once you get in the chair and you start casting, you’re fishing. You sit back and you look at life and it’s like, ‘wow, this is pretty cool.’”
“I’M STILL GETTING THE HOOK IN THE WATER.”
To learn more, visit WeAreStrongerThanMS.org. n Join actor Shemar Moore, extreme sports enthusiast Wendy Booker, and others in sharing powerful solutions with the MS community through videos, pictures and words. Every story connects us to each other and to the solutions that defy MS.
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NATIONALMSSOCIETY.ORG/CAN | 1-800-344-4867
LIVING WITH MS
COMBATTING COGNITIVE DYSFUNTION: IT’S TIME TO TRAIN YOUR BRAIN BY TIFFANY MALONE, MSW, MSCS There are many aspects of cognitive dysfunction, and more than half of the people living with MS experience at least one form. The most commonly reported problems include memory, information processing, attention and concentration, executive functioning, visual perception and verbal fluency. Similar to the variations in the course of MS, the type and amount of cognitive dysfunction varies from person to person, and cognitive problems are poorly correlated with physical limitations. Only five to ten percent of people with multiple sclerosis develop problems severe enough to interfere significantly with everyday activities.
Awareness is the first step to approaching cognitive wellness – knowing the cognitive challenges you consistently experience will help you identify tools to help overcome those barriers. Because cognitive dysfunction is often “invisible,” it can be more difficult to identify. How do you know if you are having more difficulty with word finding, remembering what you did or what you need to do, problem solving, decision making or multi-tasking? Friends and family may notice, but in some cases, neuropsychological testing is needed to help identify the problems and establish a plan. Continued on page 18
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MS CONNECTION: SUMMER 2016
LIVING WITH MS Continued from page 17 If you notice problems, developing and maintaining a tracking system is one useful strategy. Do you forget appointments? Track every time you miss an appointment. This will help you know how often it is occurring. Being familiar with your specific challenges will also help guide discussions with your medical team about appropriate strategies for improvement. Modifications may be recommended, such as tracking appointments on a calendar or with an alarm. Other common strategies include eliminating distractions and focusing on one activity at a time. Controlling the amount and speed of information is helpful with information processing. Implementing the “Hear it, Say it, See it” strategy utilizes multiple ways of acquiring and “storing” information; repeat what you heard so you say it, and write it down to see it. A referral may be recommended to an outpatient speech and language pathologist to address specific cognitive deficits. Strategies for strengthening and maintaining cognitive wellness incorporate many of the same components we implement for overall wellness, including general self-care, maintaining good nutrition, following a consistent exercise regimen and addressing mood changes as needed.
Identify other symptoms that may contribute to cognitive dysfunction, such as fatigue, depression and medication effects. Make a note of it in your tracking system and discuss with your medical team. Build a strong support system. Your family, friends and medical team can enhance the success of a cognitive wellness program, support necessary modifications and help identify challenges as they arise. While cognitive dysfunction may remain invisible, challenges can be combated with one or more of the MANY cognitive stimulation activities available. Crossword puzzles, word searches, reading, board games, card games, brain training programs and an unlimited amount of activities on cell phones, tablets and computers can be beneficial. Just like building your physical exercise program, find something you like and incorporate it into your daily routine! n
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RESEARCH
A RARE GLIMPSE A new study provides a rare glimpse into the very early stages of multiple sclerosis, even before symptoms begin. What’s known as clinically isolated syndrome, or CIS, describes a first episode of neurologic symptoms that lasts at least 24 hours and is caused by inflammation and demyelination on one or more sites on the brain and spinal cord. Typically if an MRI scan reveals lesions similar to those seen in MS, the likelihood is higher that the person experiencing CIS will go on to develop MS; conversely, if CIS is not accompanied by MRI-detected lesions, he or she has a lower likelihood of developing MS.
A “SILENT” SYNDROME Some people have been found to have clinically “silent” lesions, meaning that while they aren’t experiencing symptoms, doctors have discovered areas of inflamed or damaged tissue during the course of an MRI scan that the person had for unrelated reasons. Researchers have been increasingly focusing on this phenomenon, called “radiologically isolated syndrome,” or RIS, which—like CIS—may or may not develop into definite MS. The study, which was published in Annals of Neurology (December 2015), examined MRI scans of 453 people with RIS. Of this group, 128 (28 percent) went on to develop a first neurological event consistent with CIS or
STUDIES USING MRI SCANS MAY HELP IDENTIFY MS EARLIER. relapsing MS while approximately 12 percent went on to develop primary progressive MS, which mirrors the frequency of developing this form of the disease as seen in other studies. Those who developed primary progressive MS were more likely to be men, were significantly older, and were more likely to have MS-like lesions in the spinal cord compared to those who went on to develop CIS or relapsing-remitting MS. This research may help eventually point the way to finding ways to identify and track primary progressive MS earlier. This in turn may help to improve access to care for those living with primary progressive MS. To learn more, visit nationalMSsociety.org and search for “diagnosing MS.” Stay up to date on MS research by signing up for MS eNews: go to nationalMSsociety.org/signup. n Clinical trials of specific disease-modifying therapies (DMTs) have led to approvals for their use to treat CIS. However, there is debate as to whether people with RIS would benefit from early treatment with DMTs.
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WORLDWIDE PROGRESSIVE MS EXPERTS GATHER IN SAN FRANCISCO TO SHARE WORK The International Progressive MS Alliance convened on May 11-13 in San Francisco for its second scientific congress with the goal of exploring how to further address the complex challenges of progressive MS. Throughout the meeting, over 100 experts came together to share knowledge, collaborate on potential solutions, and build a research infrastructure. They discussed a variety of topics including clinical trials of promising therapies, new approaches to repairing damage and performing cognitive rehabilitation, and leveraging technology to speed the search for new treatment.
MS CONNECTION: SUMMER 2016
nnBetter understanding of progression so treatments can be identified and tested; nnDesigning shorter, faster trials that measure patient outcomes; nnConducting trials to test agents that stop or reverse progression so new treatment choices can be made available to people faster; nnEvaluating new therapies and treatments that will manage symptoms and improve daily quality of life. Guests of the Society also joined the meeting in May, and learned about the progress of Challenge Award grants, critical ongoing projects that will drive advances in the field toward answers for progressive MS. They were able to connect personally with key scientists and other thoughtleaders in the progressive MS movement who are intimately involved with this program. This second congress was productive and powerful, giving those in attendance a great sense of understanding, promise, and hope. Progressive MS is being tackled by some of the best and brightest minds, backed by the support of those organizations and individuals most passionate about, and dedicated to, ultimately ending progressive MS.
The Alliance is a global initiative that aligns MS organizations from around the world including Australia, Belgium, Canada, Denmark, France, Germany, Ireland, Italy, Norway, the Netherlands, Spain, the United Kingdom, the United States and the MS International Federation. Connecting resources and experts worldwide, this organization, of which the National MS Society is a founding member, strives to find solutions for everyone living with progressive MS.
More than 2.3 million people currently live with MS, over one million of which have a progressive form of the disease. Despite advances in managing other forms of MS, progressive MS remains hard to understand and treat. This is why the International Progressive MS Alliance was created – “Our purpose is clear - to speed up the development of treatments for people with progressive MS,” said Professor Giancarlo Comi Director, Dept. of Neurology Scientific Institute San Raffaele, Italy.
The International Progressive MS Alliance currently has four research priorities:
To learn more about progressive MS research, visit www.nationalMSsociety.org/research. n
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WALK MS
WALK MS BRINGS THE FAMILY TOGETHER
This year I am 13, and I took on Walk MS: Eureka with MS Squared to help spread awareness about this disease and raise money to find a cure. So far, our team has raised over $1,000 and we still have time to bring in more.
BY MADISON SOBILO
My father lives with MS, as do I and the rest of my family. Multiple sclerosis isn’t a disease that only affects the person diagnosed; it affects everyone in that person’s life. My mother, Kristin, works hard to keep the family stable and we all work together to help my father handle MS.
My father Mike was diagnosed with MS in 2007 when I was five years old. My brother, Dillon, was in high school and had a better understanding of what was happening to my father, but friends and family members helped me to understand that my papa had a disease that would affect him for the rest of his life. I first participated in Walk MS when I was seven; family friends have since come to the event every year and walked with us to support my dad and our family. A few years later, when I was 10, I decided that I wanted to really understand what MS was. I involved myself in fundraising and recruiting people from my school to come and walk with our team, MS Squared. I fundraised at my elementary school, telling my teachers about Walk and informing them that people were searching for a cure for the disease.
I choose to see this disease as something that brings my family together. It will never just be the people diagnosed with MS fighting this fight, but a fight we all have to participate in. We all can do something to help, and I choose to walk. I hope you’ll join me next year at Walk MS or join the fight in 2016 by making a donation to the National MS Society or participating in another event like Bike MS: Waves to Wine (wavestowine.org) or MuckFest MS (muckfestms.com). Together, we are stronger. n
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MS CONNECTION: SUMMER 2016
WALK MS
BIKE MS: RIDE ONCE AND YOU’RE HOOKED Bike MS: Waves to Wine is making a triumphant return in 2016, and while September might seem far away, it will be here before you know it. Now is the time to register for the event, recruit team members and start raising money. Bike MS is the ride of your life, and while it is a rewarding journey taken alone; with a team it is even better! There’s a reason why nearly 80 percent of Bike MS participants ride on a team – it doesn’t get much better than taking on 20 – 175 miles with a group of passionate, supportive people. Plus, when you work together, it is easier to stay motivated and achieve your goals. Alex Macintosh is riding in Bike MS: Waves to Wine for the third time this year. This is his second time as a team captain and he plans to expand his team. “In 2014 we had seven or eight people, last year it was 12, and this year we are shooting for 15 - 20. Experiencing the entire weekend with a group of people is so fulfilling; crossing the finish line with everyone is so much fun!” When it comes to fundraising, Alex’s personal goal is $1,000 (which is also the amount that qualifies a rider for the official Waves to Wine
jersey). He is encouraging members on his yet to be named team to raise the same. “I want returning riders to aim for at least $1,000. New riders should just focus on getting excited for the ride, because I know after they participate once they will be hooked.” Last year, Alex rode the longest route and plans to do so again in 2016. “The route is fully supported and the volunteers are so great! Plus, hearing everyone’s stories is so inspiring and the overall energy is incredible.” If you’ve been thinking about joining the ride but haven’t registered yet, Alex has some sage advice. “The first year I didn’t know what to expect and I had a blast. I can guarantee it will be one of the top three weekends of your year. Everyone is taken care of and you can just enjoy the fun of being on the road with your friends and fellow MS advocates.”
Register now at wavestowine.org and get ready for the adventure of a lifetime. And, if you raise $500 by June 30, you will earn the official 2016 Waves to Wine cycling cap. What are you waiting for? Sign up now! n
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MUCKFEST MS
GETTING DIRTY FOR A GREAT CAUSE BY KIM JOHNSON When I was diagnosed with MS in May 2000, one my neurologists suggested that I contact the National MS Society. I joined the Newly Diagnosed program at UCLA and have been connected ever since. I have utilized many of the resources that the Society offers, including telephone assistance, Relationship Matters (which I would recommend to everyone), and various MS support groups. As someone who has taken advantage of the Society’s resources, I know firsthand how critical they are for this crazy disease. After a diagnosis, your head is spinning. The National MS Society assists with managing a path and figuring out a plan. Fundraising directly helps to provide these much-needed services, which is why I have also participated in many of the events near me such as Challenge Walk MS, Walk MS,
Crush MS, CAN DO MS, and MuckFest MS. This will be my third year as a Mucker, and it is such a silly and fun way to fundraise. Our team laughs through the entire course and REALLY enjoys washing off after the event. I originally signed up as a personal challenge, just to see if I could actually do it. This year my daughter is old enough to join and she is very excited! In 2016, my goal is to grow our team to at least 10 people, raise $7,500, and begin family training with my husband and daughter. Not only are we raising money for a cause that it close to us, but we also get to use MuckFest MS as a way to bond as a family. If you have been thinking about taking on the mucky obstacle course but haven’t yet for whatever reason, my advice is to just do it! I didn’t know if I could make it through the course, but now I am on my third go. Join a team, and if you don’t know of one, contact the Northern California Chapter and they can help. If you are in the San Francisco area, join us on team Snow Leopards! Sign up today at muckfestMS.com! You will enjoy yourself more than you thought, and you will be getting dirty for a great cause. n
Northern California Chapter 1700 Owens Street, Suite 190 San Francisco, CA 94158
OFF MY WAVE.
Ocean Beach native and local sur f legend Steve Bettis was diagnosed with MS in 2006. Although sur fing is still central to his life, he hasn’t been able to get out on the water in 10 years. For a man whose daily routine always included a few waves, more than a decade out of the sur f is just too long. This is why the National MS Society teamed up with his buddy Rober t “Wingnut” Weaver and used vir tual reality to get Steve back on his wave. See their experience and find out how you can share yours at WeAreStrongerThanMS.org.
Together We Are Stronger