WINTER 2014 NORTHERN CALIFORNIA CHAPTER
MS CONNECTION NEWSLETTER HEALTHY LIVING
IS THIS NORMAL?
My husband was somewhere behind me, getting milk while I ducked the supermarket scooter into a quiet aisle. He approached and said, “Chobani’s on offer.”
BY LAURIE CLEMENTS LAMBETH
At a recent appointment, I listed my cognitive lapses over the past year. I have mild cognitive impairment; I was tested after 25 years with MS and suspicions that I wasn’t quite up to my old speed of thought. Dividing my attention, shifting focus and finding words have steadily grown more difficult. 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.
“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 another 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 ...continued on page 3
So I asked the physician’s assistant the question we all ask at some point: “Is this normal?”
INSIDE THIS ISSUE
IS IT HARDER TO WORK WITH MS?
RESEARCH FORUMS IN YOUR AREA
CALIFORNIA STEM WILL YOU JOIN KAREN AT WALK CELL INSTITUTE MS 2014? PROGRESS
MS CONNECTION: WINTER 2014
LETTER FROM THE PRESIDENT
LIVING WELL WITH MS Dear Friends,
“THE SOCIETY’S PROMISE AROUND RESEARCH IS CLEAR: STOP DISEASE PROGRESSION, RESTORE WHAT’S BEEN LOST, AND END MS FOREVER. ADDRESSING THE CHALLENGES OF EVERYONE AFFECTED BY MS REQUIRES A SIMILAR FOCUS AND PROMISE.”
CONNECT WITH US ONLINE:
Northern California Chapter nationalmssociety.org/can email@example.com Like us: /msnortherncal Follow us: /msnortherncal Photobucket: /user/NationalMSSocietyNorCal/library/ MSConnection.org
Whether you just received a diagnosis of MS; or have been living with it for a long time; or love someone living with MS, we hope you will find helpful information in this issue of MS Connection. Read about strategies and resources to enhance your health and wellness, maximize your productivity and independence, and deal with emotional, social, and vocational challenges. By connecting with the Society through resources like MS Navigator, MSConnection.org and chapter programs accessible from the comfort of home, you can get the information you need to stay empowered and keep moving forward. Through personal stories, we share examples of how different people have made meaningful connections that have helped them live well with MS. Like Ruth, diagnosed with MS at age 13, who has found relevance and stayed connected to the Chapter for many years. And like Tracy, who connected her passion and talent for writing with the MSConnection.org community and published an anthology of personal stories about MS. Or like Karen, who channels her desire to create a world free of MS by participating in Walk MS for her adult son and connects to a caring support community. The Northern California Chapter is invested in helping you maintain your quality of life for the many well-lived years ahead. We encourage you to make meaningful connections with your Northern California Chapter and our MS community to help you live your best life with MS. However you choose to connect to the programs, services, and community available through the National MS Society, we will be happy to have you. Warm regards, Janelle Del Carlo Chapter President Northern California Chapter
NATIONALMSSOCIETY.ORG/CAN | 1-800-344-4867 ...continued from page 1
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 . . .” Blip I 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 . . . 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. I 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
NATIONAL MULTIPLE SCLEROSIS SOCIETY Northern California Chapter 1700 Owens Street, Suite 190 San Francisco, CA 94158 1-800-344-4867 Board Chair: Angie Lai Chapter President: Janelle Del Carlo Editor: Jen Gawler © 2012 National Multiple Sclerosis Society, Northern California Chapter
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 appointment. 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 Blip At 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 ...continued on page 4
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.
MS CONNECTION: WINTER 2014
... continued from page 3
stopping, 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 pedal, 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 “normal,” 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. ◊ _____________________ Laurie Clements Lambeth’s first book Veil and Burn was selected for the 2006 National Poetry Series. To learn more about her, visit laurieclementslambeth.com.
WHAT THE SYMPTOMS MEAN Unusual symptoms should be reported to your doctor. They may signify MS-related disease activity that your doctor may wish to treat. Changes in cognition may be caused by many different factors, including MS, depression, stress, medications, or aging. Your doctor may refer you to a cognitive specialist/neuropsychologist to help you determine the cause of the changes.
IS IT HARDER TO WORK WITH MS? JULIE STACHOWIAK, PhD
Many people with multiple sclerosis find it difficult to continue working, even in the early years of the disease. Tasks that seemed challenging before MS can become seemingly insurmountable afterward. The fluctuation of daily symptoms and unknown levels of future disability make mapping out a strategic career path a challenge, to say the least. We simply do not know what the future holds around our ability to perform a job. Recent research indicates that some people who are newly diagnosed or have had an episode of a clinically isolated syndrome may already need to adjust their time at work. Researchers in the Netherlands wanted to look at how MS-related cognitive dysfunction affected work in people who are recently diagnosed with MS. In the Cognition and Socio-Economics (COGNISEC) study, the researchers studied 45 people who had been diagnosed with MS or had a clinically isolated syndrome within the past two years and have been on diseasemodifying therapy for less than six months or not at all.
WHAT THEY FOUND: • People with higher levels of fatigue and disability all decreased their working hours within 12 months following diagnosis.
NATIONALMSSOCIETY.ORG/CAN | 1-800-344-4867 • Lower long-term memory scores correlated with a lower number of hours and days spent working during the week. • People who scored lower on “focused attention” and “speed of memory” were more likely to say they “wished to work less.” • Scores on tests assessing depression (Beck Depression Inventory) did not correlate at all with quantity of working hours. While its findings need to be replicated in larger studies, so far this research shows that cognitive dysfunction can negatively impact the capacity to work, even in the very early stages of MS.
WORKING A BALANCE
PhD, is the author of The Multiple Sclerosis Manifesto and www.ms.about.com. Originally posted at blog. nationalMSsociety.org.
TOOLS TO WORK If you’re struggling to keep up at work, visit www.nationalMSsociety.org/employment or call an MS Navigator at 1-800-344-4867 to learn more about your options and get connected with employment resources in your area.
What does this mean? Let’s face it, even jobs that we love can lose some of their luster when we have to negotiate symptoms that add to our physical disability. While it is tempting to keep pushing ourselves to do more and overcome some of these challenges, it is important to remind ourselves that we may have very real cognitive symptoms related to our MS that are impacting our abilities to work the same way we did in the past.
The Job Accommodation Network at www.askjan.org also offers information on a range of subjects for working people with disabilities.
On the other hand, many people with MS continue working long after their diagnosis. Disease-modifying therapies, new technologies, better symptom management, legal employment protections and community resources can help you remain in the workforce — and education and preparation can be your most powerful tools for success. ◊ ________________________________ Diagnosed with MS in 2003, Julie Stachowiak,
A diagnosis of MS can create many unexpected emotions that leave you with a strong need to understand the changes you may be facing. Dr. Elizabeth Crabtree will address the most common concerns for people who are newly diagnosed. This orientation provides an opportunity to have your questions answered and learn more about resources available. Register at www.nationalMSsociety.org/can.
ONLINE NEWLY DIAGNOSED ORIENTATION Thursday, January 9th | 6:00 - 7:30 p.m. Thursday, March 13th | 6:00 - 7:30 p.m.
06 CONNECT WITH THE INFORMATION YOU NEED Ruth Sosa has been living with MS since she was 13 years old. Though the disease has progressed, Ruth continues to keep charging ahead, thanks to the support of her loving family. She and her husband, Julio, also credit the National MS Society for helping them live well with this disease. Many years ago, the Sosas reached out to the Society for information about resources and programs that were available for their family. An MS Navigator connected Ruth to doctors and other health care professionals knowledgeable about MS, and to Chapter-sponsored programs that provided answers to her questions about symptoms and treatments. Throughout the years, Ruth and her family continue to work with MS Navigators who have connected them to other families living with MS in their community and to a Spanish-speaking support group Ruth can attend monthly. Ruth and Julio call an MS Navigator each time they need up-to-date information about treatments, research, support and available resources. They said, “With the National MS Society on our side, we feel that someone is with us along this long journey.” Finding answers and making decisions relies on having the
MS CONNECTION: WINTER 2014 right information at the right time. We have it right at your fingertips. • Ask an MS Navigator for help to navigate
the challenges of MS. Find personalized answers to your unique needs, up-todate information, referrals and practical resources. Call 1-800 FIGHT MS.
• Browse MS Learn Online for educational
webcasts available anytime. Visit www.nationalMSsociety.org and search “MS Learn Online.”
• Attend a local educational event or
workshop to learn about wellness, symptom management, research and more. Visit the Online Program Calendar at www.nationalMSsociety.org/CAN.
• Join discussions, share experiences and
learn from others at MSConnection.org.
Stay informed and get connected! ◊
NATIONALMSSOCIETY.ORG/CAN | 1-800-344-4867
ACCESSIBLE FROM THE COMFORT OF HOME Registration is required for the following teleconferences. Call 800-344-4867 or visit www.nationalMSsociety.org/can to register.
• Tools for creating positive emotion within
relationships • Tools for making requests versus making complaints • Tools for making repairs in relationships when conflict arises
Embracing the Heart: The Gift of Emotional Self-Care Tuesday, February 11th | 12:00 - 1:00 p.m.
Online Newly Diagnosed Orientation Thursday, January 9 | 6:00 - 7:30 p.m. Thursday, March 13th | 6:00 - 7:30 p.m. th
Dr. Elizabeth Crabtree will address the most common concerns for people who are newly diagnosed. This orientation provides an opportunity to have your questions answered and learn more about resources available.
9 Things People Do Differently to Achieve Their Goals Tuesday, January 14 | 12:00 - 1:00 p.m. th
Join Catherine Freemire, LCSW, as she discusses strategies that successful people use to achieve their goals. Then, with selfcompassion, learn how to recalibrate these strategies to realistically fit your life of living with a chronic condition.
Communication Tools for Maintaining Good Relationships Thursday, February 6th | 6:30 - 7:30 p.m. Catherine Freemire, LCSW, will introduce us to communication tools for maintaining good relationships. Tools you will learn include:
Lisa Geren, MSW, will help us tune in and identify self-care needs, as well as learn effective tips on how to reduce stress, encourage creativity, boost personal resilience and enhance emotional well-being.
Turn it Up! Harness Music to Lift Mood and Manage Chronic Pain Tuesday, March 11th | 12:00 - 1:00 p.m. Join Dr. Susanna Kanther to learn about research on the health benefits of music and identify its brilliant capacity to improve mood and physical health through relaxation.
Bladder and Bowel Issues in MS Thursday, April 3rd | 6:30 - 7:30 p.m. Patricia Kennedy, RN, CNP, MSCN, will discuss bladder and bowel issues that may arise due to MS. You will learn about normal behavior versus dysfunction and how to explore these issues further with your healthcare professional so that you may live your best life with MS.
MS CONNECTION: WINTER 2014
RESEARCH FORUMS SPONSORED BY: Last year, the Society invested $43 million to support 350 research projects around the world. Since its founding in 1946, the Society has spent over $771 million to advance MS research. Whether there are new promising disease modifying treatments or the exciting potential of myelin repair, this program sponsored by Biogen will share the collective progress we are making to end MS NOW. Central Valley Monday, February 3rd, 6:30 p.m. Salida Library, Community Room 4835 Sisk Road, Salida Speaker: TBD Registration deadline is Friday, January 24th.
South Bay Saturday, February 8th, 11:00 a.m. - 1:00 p.m. Edenvale Branch Library 101 Branham Lane, San Jose Speakers: Dr. Alexandra Goodyear and Jong Mi Lee, NP, of Stanford Registration deadline is Friday, January 31st.
Greater Sacramento February 25th, 6:30 p.m. - 8:30 p.m. MIND Institute, Room 1115 2825 50th Street, Sacramento Speaker: Dr. Mark Agius of UC Davis Registration deadline is Friday, February 21st.
North Bay Saturday, March 1st, 10:00 a.m. - 12:00 p.m. Petaluma Community Center 320 N. McDowell Blvd., Petaluma Speaker: Dr. Jeffrey Gelfand of UCSF Registration deadline is Friday, February 28th.
MERCY MS ACHIEVEMENT CENTER UPDATE The Mercy MS Achievement Center (MSAC) has taken its next step toward providing day program services for people living with MS in Northern California. As announced in the Fall MS Connection newsletter, the Mercy MS Center, a National MS Society Partner in Care, was awarded a grant from the Conrad N. Hilton Foundation to establish Northern Californiaâ€™s first MSAC. The MSAC is targeting early 2014 for its opening. The program will focus on enhancing physical, mental, cognitive and recreational wellness. Individuals interested in participating can contact Brian Hutchinson at 916-453-7966 or email Brian.Hutchinson@dignityhealth.org.
NATIONAL MS SOCIETY SCHOLARSHIP PROGRAM MS should not stand in the way of an education. First-time college students of any age living with MS or whose parent lives/lived with MS are eligible to apply for the 2014 scholarships. The deadline is January 15, 2014 and recipients will be notified of their award in late April 2014. Learn more and apply at www.nationalMSsociety.org.
NATIONALMSSOCIETY.ORG/CAN | 1-800-344-4867
STEM CELLS AND MS The National MS Society’s comprehensive research strategy funds the best, most relevant research aimed at moving us closer to a world free of MS. One emerging area of promise revolves around stem cell therapies as a possible treatment for MS. The Society has worked for many years to ensure that all avenues of scientifically sound research, including research using stem cells, are open for ethical exploration. In 2004 California voters approved Proposition 71, the California Stem Cell Research and Cures Initiative. This initiative created the California Institute for Regenerative Medicine (CIRM) to fund stem cell research in the state. Since its inception, CIRM has awarded more than $12 million to fund research which has the potential to stop disease progression and restore function that has been lost. Stem cells have already demonstrated their ability to be effective against MS.
Stem Cell Research Demonstrating Progress Some researchers use chemotherapy to eliminate the blood-forming stem cells in a person’s bone marrow and then replace the cells with donor stem cells which generate a new blood system. Because the stem cells come from a healthy donor, the newly formed immune cells won’t attack myelin, the protective sheath that surrounds and protects neurons.
Researcher Peter Schultz and his team at Scripps Research Institute in San Diego are working on a group of stem cells called oligodendrocyte precursor cells (OPCs). In healthy individuals, OPCs create myelin. In people with MS, the myelin sheath is damaged and OPCs cannot keep up with the necessary repair. Shultz and his team hope to find a way to stimulate the body’s natural supply of OPCs so they can rewrap nerve cells and restore function. Also from Scripps, Jeanne Loring is teaming up with John Lane of UC Irvine to use stem cells which have been programmed to act like brain cells. These cells are then transplanted into the brain to re-myelinate and repair damaged nerve cells. Stanford scientist, Marius Wernig, has found a way to turn ordinary skin cells into OPCs. By turning a person’s own skin cells into OPCs and transplanting them into the brain, you may be able to avoid the risk of rejection.
Advocating into the Future The Northern California Chapter and research activists intend to meet regularly with CIRM to ensure the close monitoring of progress in MS stem cell research. MS activists will advocate with both state and federal legislators to enlist their support as needed. We will also be leading a group of patient stakeholders at the upcoming World Stem Cell Conference in San Diego. You can learn more about CIRM’s progress at www.cirm.ca.gov/our-progress/multiplesclerosis-fact-sheet. ◊
MS CONNECTION: WINTER 2014
BIKE MS: WAVES TO WINE RIDE RAISES $2.4M The 30th anniversary of Bike MS: Waves to Wine was a huge success with over 2,300 cyclists raising $2.4 million. This money funds groundbreaking MS research and innovative programs and services for 84,000 Northern Californians affected by MS. Bike MS isn’t just about raising money; it’s also about the connections. Laura, who participated in Genzyme’s I Ride with MS program, said “I ride because I want my daughter to know that MS will not stop me from trying new things. It reminds me what my body can do instead of what it can’t.” Thank you to our cyclists, 500+ volunteers, and sponsors who joined the movement to create a world free of MS. We hope you will join us next year on September 20-21, 2014! Learn more at wavestowine.org. ◊
THANK YOU, SPONSORS!
2013 TOP FUNDRAISERS Top 10 Individuals 1. Brittany Schornstein: $32,857.22 2. Kate Aks: $18,526.00 3. Tom Galizia: $18,301.00 4. Chace Schornstein: $15,960.00 5. Tom Slagle: $15,867.00 6. Jay Thayer: $14,430.00 7. Lucas Schornstein: $13,335.00 8. Jon Richards: $13,030.08 9. Craig Nile: $12,551.00 10. Daniel Siegel: $12,355.00
Top Teams • • • • •
Overall: Salesforce.com & Friends: $188,886.57 2-10 Members: Team Dana: $62,852.22 11-25 Members: Mitzvah Milers: $63,361.37 26-45 Members: Cruisin’ with Susan: $67,110 46+ Members: Salesforce.com & Friends: $188,886.57
CORPORATE CUP CHALLENGES
Schwab Teva Bayer Red Hat
Volkswagen Genentech Morgan Lewis
Energy: Chevron Healthcare/Life Sciences: Team Double Strand Financial Services: Wells Fargo Professional Services: Deloitte Difference Technology: Salesforce.com & Friends Travel & Leisure: Kara’s Cupcakes Friends & Family Cup: Team Menstrual Cycles
NATIONALMSSOCIETY.ORG/CAN | 1-800-344-4867
A MOTHER WALKS FOR HER SON Karen of Vacaville walks for her adult son, Nathan, who was diagnosed with MS in 2008. Karen, Nathan and her two younger sons participate in Walk MS: Solano County on Team Vacaville/Fairfield We Fight Back. She has been participating in Walk MS since 2009 and has seen the positive impact that the event has had on her family. “I have seen firsthand through my [self-help group] how the MS Society helps its members, and I like knowing that I am helping support the MS Society in this through my participation,” said Karen. Karen and her family have endured many challenges following Nathan’s diagnosis, which lead them to turn to the Society for assistance. “It has helped me emotionally, and through its publications, it has helped my son fight his MS
through proper diet and exercise,” she said. Walk MS also helps Karen stay connected with her family and friends. “I am looking forward to hopefully having my son walk with me again and bring his family along. It is a fun time to spend with my friends and personally, it gives me hope.” The Northern California Chapter will have 13 Walk MS sites in 2014, including a new site in Pleasanton. Fundraising supports the programs and services provided by the Chapter, as well as funds research into the cause, treatments, and a cure for MS. Learn more and register at www.WalkMSNorCal.org. ◊
2014 Walk MS: Northern California 04.26.14 East Bay | Lake Merritt Solano County | Suisun City Waterfront Yuba City | Sam Brannan Park 04.27.14 Eureka | Eureka High School Monterey | Lover’s Point Park Pleasanton | Alameda County Fairgrounds Sacramento | State Capitol 05.03.14 Folsom | Sutter Street Plaza Modesto | Downey Community Park Silicon Valley | Vasona Park
KAREN AND HER SON, NATHAN, AT WALK MS: SOLANO COUNTY
05.04.14 San Francisco | Justin Herman Plaza Santa Rosa | Maria Carrillo High School Walnut Creek | Heather Farms Park
Northern California Chapter 1700 Owens Street, Suite 190 San Francisco, CA 94158
GIVE A TAX-FREE GIFT
Donations to the National MS Society are not only tax deductible expenses, but they will bring us closer to a world free of MS in 2014! Your donation will continue to accelerate promising new research leads, fund life-changing programs, and provide financial assistance for people with MS. • $35 defrays the cost of transportation to a neurology appointment for someone with MS. • $63 helps provide a basic walker for someone experiencing mobility challenges. • $120 gives 15 children from families with MS the Keep S’myelin newsletter with tips for coping. • $200 provides an aquatic therapy class for 20 people to help improve mobility and flexibility. • $400 contributes to the cost of repairing an electric wheelchair. The Northern California Chapter is a 501(c)(3) organization, so your donation is tax deductible as permitted by law. Our Tax ID # is 94-1294935. Thank you for joining the movement to create a world free of MS!
Published quarterly by the Northern California Chapter of the National Multiple Sclerosis Society, this newsletter contains information on l...