WINTER 2012 NORTHERN CALIFORNIA CHAPTER
MS CONNECTION NEWSLETTER
INSIDE 04 THIS ISSUE
MS SYMPTOMS AND WINTER WEATHER
PROGRAMS IN YOUR COMMUNITY
12 JOB ACCOMMODATIONS AND HOW TO RECEIVE ONE
14 THE GATHERING TABLE
MS CONNECTION: WINTER 2012
LETTER FROM THE PRESIDENT
GRATEFUL THIS HOLIDAY SEASON
“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 firstname.lastname@example.org Like us: /msnortherncal Follow us: /msnortherncal On the Cover: Susan, left, diagnosed in 1995
I am grateful that for more than 66 years, the National MS Society has addressed the challenges of each person whose life is affected by MS, while relentlessly funding more research than any other MS organization in the world. Our cumulative investment to research is over $761 million to date. There are 350 research initiatives being funded worldwide. Last year the Society invested $44 million, which is up 10% from 2011. Our funding has created and facilitated collaborative MS research in more than 20 countries. In less than two decades, MS has gone from an untreatable disease to one which has nine FDA approved therapies for relapsing MS, with another half dozen in late stage development or currently before the FDA. We have made significant progress and know more about MS than at any other time, but if you have MS or love someone with MS, it is not enough! The MS research revolution commits to leaving no stone unturned and NO OPPORTUNITY WASTED, specifically addressing three areas of research. Our goals are to stop MS in its tracks, to restore what’s been lost and to end MS forever. We have reached a point when individual efforts can be made exponentially stronger through support and collaboration. We can honestly say that we are at the beginning of the end of MS. I am grateful for your invaluable partnership as we move closer to creating a world free of MS. Happy Holidays,
Janelle Del Carlo Chapter President Northern California Chapter
NATIONALMSSOCIETY.ORG | 1-800-344-4867
WAYS TO GIVE
GIVE A TAX-FREE GIFT
YOUR YEAR-END GIFT WILL BRING US CLOSER TO A WORLD FREE OF MS IN 2013! 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 2013! Your donation will continue to accelerate promising new research leads, fund life-changing programs, and provide financial assistance for people with MS. Consider the following: • $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 ensures that 15 children from families with MS receive 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 • Your gift, of any amount, gets us closer to a world free of MS! The National Multiple Sclerosis Society, 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 everything you do to help us keep moving toward a world free of MS.
NATIONAL MULTIPLE SCLEROSIS SOCIETY Northern California Chapter 1700 Owens Street, Suite 190 San Francisco, CA 94158 1-800-344-4867 Chairman: Angie Lai Chapter President: Janelle Del Carlo Editor: Jen Gawler © 2012 National Multiple Sclerosis Society, Northern California Chapter
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.
04 LIVING WITH MS
MS SYMPTOMS AND WINTER WEATHER BY JULIE STACHOWIAK, PhD
Most of us with multiple sclerosis are heat intolerant to the point of being unable to function outside during peak summer temperatures. But when I asked people with MS on my blog at www.ms.about.com what their MS temperature “limits” were, I was surprised when several people said that the cold wasn’t so great for them, either. Many people complained of increased spasticity in cold weather. Readers mentioned that their limbs “felt like wood” or that their joints ached during lower temperatures. A couple of people also mentioned that the MS “hug” could be intolerable in the cold. (The MS hug is the gripping feeling around the torso that is caused by a lesion in the spinal cord that results in spasms in the tiny muscles between the ribs. I also know that some people with MS tend to feel more fatigued in winter months. This could be an indirect result of coping with some of the symptoms mentioned above. It could also be that the shorter days and limited sunlight exacerbate depression, which can be a symptom of MS. New data is emerging all the time on the role of vitamin D in MS. Perhaps we feel our symptoms more acutely when our vitamin D reserves are at their winter lows, although this hasn’t been confirmed yet
MS CONNECTION: WINTER 2012 by scientific studies. Here are a few tips to help you enjoy the colder months if you are bothered by frigid temperatures. • Soak up sunshine during the warmest part of a sunny winter day to help your body produce vitamin D. • Don’t overdo the heat. When I get cold, I tend to take really hot showers. Recently, I got dangerously dizzy during one. Remember, extreme heat is not our friend, either. • Warm yourself from the inside. Drink a hot beverage to take the chill off. Like many other situations that we must navigate through with MS, a little strategic planning of winter activities can help you have some control over symptoms. Put some thought into what you enjoy doing in the winter, take a couple more precautions and get the most out of the cold months. ◊ Diagnosed with MS in 2003, Julie Stachowiak, PhD, is the author of The Multiple Sclerosis Manifesto. Originally published on www.blog.national MSsociety.org.
SCHOLARSHIP DEADLINE APPROACHING Applications for 2013 National MS Society Scholarship are due January 15, 2013. For more information call 1-800-344-4867 or www.nationalMSsociety.org/scholarship.
NATIONALMSSOCIETY.ORG | 1-800-344-4867
MS SOCIETY VICTORIOUS IN MEDICARE LAWSUIT For years, Medicare’s so-called “Improvement Standard” denied coverage of certain treatment services to people with multiple sclerosis and other diseases. However, in October, a settlement to end the standard was reached in a nationwide lawsuit in which the National MS Society was a plaintiff. The Society joined other national organizations 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 denied Medicare coverage for services such as skilled nursing facilities, home health and outpatient therapy benefits 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 standard actually violated Medicare’s own official regulations, which state that “the restoration potential of a patient is not the deciding factor” for coverage. The agreement to end the standard will vastly benefit people with MS and their families, helping place essential services back in their reach. Once the settlement is approved by Chief Judge Christine Reiss of the U.S. District
05 Court in Vermont, where the suit was filed, the standard’s use will effectively end. CMS will revise the Medicare Benefit Policy Manual so that coverage standards will instead be based on people’s need for skilled care, regardless of whether they show improvement. In addition, CMS will conduct a nationwide educational campaign about the changes, which apply to Medicare and private Medicare Advantage plans. For more information and to follow the settlement’s progress, visit the website www.MSActivist.org, or sign up for MS eNEWS at www.nationalMSsociety.org/signup.
Say Hello to the New Communications & Marketing Manager Jen Gawler joins the chapter as Communication & Marketing Manager out of the San Francisco office. She transferred from the Greater Carolinas Chapter located in Raleigh, NC as their PR & Marketing Manager and has served with the Society for almost two years. She is accompanied by her boyfriend, Griff, and black lab mix, Josie. Jen enjoys cooking and crafts, as well as exploring new areas and being outside.Say hello to Jen at 415-230-6678, ext. 73007 or email@example.com.
06 PROGRAMS AND SERVICES
ACCESSIBLE FROM HOME EMOTIONAL WELLNESS TELESERIES A new topic is offered every month in our on-going Emotional Wellness Teleseries. Life Coach and Psychotherapist Catherine Freemire, LCSW, leads the discussions. Each monthly topic has two separate call times and dates so you only need to register for one time/date per topic. Calls are open to anyone interested. To register call 1-800-344-4867 or visit www.nationalMSsociety.org/CAN.
JANUARY: Practicing Ways to Increase Our Joy This workshop will cover the ways to increase and enhance our joy through the lens of the past, present and future. You will learn concrete strategies that can help to enliven yourself by deepening your experiences of joyful times already lived or yet to come. • January 8th, 2:00 p.m. - 3:00 p.m. • January 22nd, 12:00 p.m. - 1:00 p.m.
FEBRUARY: Our Mindsets and How to Change Them We all live and function with different mindsets. Some of these mindsets are part of our temperament at birth and some of them were learned from conditioning in our environments. In this workshop you learn how to recognize the type of mindsets you
MS CONNECTION: WINTER 2012 unconsciously use and how to change yours if it is not working for you. • February 5th, 2:00 p.m. - 3:00 p.m. • February 19th, 12:00 p.m. - 1:00 p.m.
March: Self-Compassion: What is it and Why is it Important? This workshop will cover why self-compassion is a necessary tool for living in today’s world and especially important for people living with a chronic medical condition. This workshop will cover the concept of self-compassion and the vital difference between self-compassion and the acceptance of irresponsible living. • March 5th, 2:00 p.m. - 3:00 p.m. • March 19th, 12:00 p.m. - 1:00 p.m.
ONLINE NEWLY DIAGNOSED ORIENTATION January 10th & March 7th 6:00 p.m. - 7:30 p.m. Are you newly diagnosed with MS? A diagnosis of MS can create many unexpected emotions that leave you with a strong need to understand the changes you may be facing. This web-based program will be conducted by Dr. Elizabeth Crabtree, assistant clinical professor of neurology at UCSF and director of patient program development at UCSF’s MS Center. This orientation provides the opportunity to have your questions answered and learn more about resources available to you. A phone and computer with internet access are necessary. Call 1-800-344-4867 or visit our website to register.
NATIONALMSSOCIETY.ORG | 1-800-344-4867
BIKE MS: WAVES TO WINE RIDE Bike MS: Waves to Wine Ride 2012 was a huge success! We had over 2,300 cyclists register and raised $2,363,000, money that will fund groundbreaking research and innovative programs and services for the 84,000 Northern Californians affected by MS. It was a great weekend with perfect weather. Thank you to our cyclists, 500+ volunteers, and sponsors who helped make Bike MS: Waves to Wine Ride 2012 such a success! Bike MS: Waves to Wine Ride 2013 will be held on September 21 & 22, 2013. Register today as a cyclist or volunteer at www.wavestowine.org.
2012 TOP FUNDRAISERS TOP TEAMS 1. Salesforce.com & Friends: $186,904 2. Team Menstrual Cycles: $116,872 3. Olympic Club’s Team Lemonade: $68,797 4. Deloitte Difference: $64,843 5. Team Chevron: $64,260
TOP INDIVIDUALS 1. David Patterson: $39,000 2. Nicole Schiereck: $35,999 3. Chace Schornstein: $33,114 4. Kate Aks: $27,632 5. Thomas Galizia: $19,346
FRIENDS & FAMILY AND CORPORATE CUP CHALLENGES CORPORATE CUP: • Professional Services: Deloitte Difference: $64,843 • Financial Services: Wells Fargo: $40,922 • Technology: Salesforce.com & Friends: $186,904 • Healthcare/Life Sciences: Bayer $28,760
FRIENDS & FAMILY CUP • Team Menstrual Cycles: $116,872 OVERALL CORPORATE TEAM • Salesforce.com & Friends: $186,872
MS CONNECTION: WINTER 2012
WHAT ARE JOB ACCOMMODATIONS AND HOW DO I GET ONE?
Center or visit www.askjan.org. If your employer is not covered, contact an MS Navigator® at 1-800-344-4867 for help.
BY KRIS GRAHAM
• How is MS affecting your job, potential job, or application process? • Why are you requesting accommodations? • What information will you need to provide to your employer (or potential employer) to clarify the impairment affecting your work and the accommodation that will remedy the situation? • What accommodations or changes to your work will be effective? • When should you speak with your employer (or potential employer)? • Who should you involve in the conversation? • How should you follow up on your request? • What are your rights if things go wrong?
When MS starts to get in the way of doing your job, job accommodations can be a helpful option. They can be things like new equipment, changes to existing equipment, or changes to your work routine or schedule. Here are two things to remember about accommodations: 1. You must be able to perform the essential functions of your job. The Americans with Disabilities Act (ADA) does not require employers to reduce essential job functions but you can ask to change how you perform an essential job function. 2. Your employer does not have to provide you with your first choice in accommodations.
Before you request accommodations, make sure you can answer all of the following questions:
People can request reasonable accommodations under the ADA if:
If you have additional questions, an MS Navigator is standing ready for your call. ◊
• They work for an ADA-covered employer • They are “qualified” to do the job; AND • They are a person with a disability as defined by the ADA
Kris Graham is the Employment Manager for the National MS Society.
ADA-covered employers include private employers with 15 or more employees, all state and local governments, employment agencies and labor unions. If you’re not sure whether your employer is covered by the ADA, contact your regional ADA
NATIONALMSSOCIETY.ORG | 1-800-344-4867
NORTH AMERICAN EDUCATION PROGRAM PAIN MANAGEMENT PROGRAM The National MS Society, in partnership with the MS Society of Canada, is pleased to bring you Managing Pain Issues in MS. This year’s NAEP focuses on an issue that can have a profound impact on quality of life. You’ll learn more about managing this problem, available treatment options, and research to identify the cause of pain in MS. Following are the programs in your local area, which will be shown at self-help group meetings. These programs are open to anyone living with or affected by MS. To register call 1-800-344-4867 or online at www.nationalmssociety.org/can.
January Saturday, January 5 11:00 a.m. - 1:00 p.m. Merced Wednesday, January 9 11:00 a.m. - 1:00 p.m. Tracy Thursday, January 10 6:30 p.m. - 8:30 p.m. Stockton Friday, January 18 11:00 a.m. - 1:00 p.m. Monterey Saturday, January 19 12:00 p.m. - 1:30 p.m. Corte Madera Saturday, January 19 1:00 p.m. - 3:00 p.m. Sonora Friday, January 25 11:00 a.m. - 1:00 p.m. Grass Valley Saturday, January 26 10:30 a.m. - 12:00 p.m. Turlock
Wednesday, January 30 6:00 p.m. - 8:00 p.m. Oakdale
February Friday, February 8 10:00 a.m. - 12:00 p.m. Elk Grove Saturday, February 9 2:00 p.m. - 4:00 p.m. Sacramento Saturday, February 9 10:00 a.m. - 12:00 p.m. Carmichael Tuesday, February 12 7:00 p.m. - 9:00 p.m. Foster City Thursday, February 14 11:30 a.m. - 1:30 p.m. San Jose Saturday, February 16 10:00 a.m. - 12:00 p.m. Modesto Saturday, February 16 12:00p.m. - 2:00 p.m. Healdsburg
Tuesday, February 19 7:00 p.m. - 9:00 p.m. Milpitas Wednesday, February 20 6:00 p.m. - 8:00 p.m. Yuba City
March Wednesday, March 6 11:30 a.m. - 1:30 p.m. Santa Cruz Saturday, March 9 12:30 p.m. 2:00 p.m. Fremont Saturday, March 16 12:00 p.m. - 2:00 p.m. Oakland Wednesday, March 13 1:00 p.m. - 3:00 p.m. Brentwood Monday, March 25 7:00 p.m.- 9:00 p.m. Palo Alto
14 NEWLY DIAGNOSED
THE GATHERING TABLE BY RONDA GIANGRECO
On July 26th, 2008 I was a 53-year-old woman who considered herself very fortunate. I was just back from my latest adventure at a cooking school in Italy. My husband, Michael, and I had spent the day wine tasting in Napa with friends. Life was good. One day later I was a disabled woman. Learning that your wife has been diagnosed with sudden onset multiple sclerosis would be difficult for any man to accept, but for my husband it was a particularly cruel twist of fate. The disease had entered Michael’s life when he was just a child, taking away his mother when he was 16. Now it was back for his wife. Worried that I might not be able to walk for much longer, I asked myself the question, “Then to where should I walk now?” My answer: to the kitchen! An avowed foodie, I always loved to cook. My kitchen is my sanctuary, where I can dispense with aggravations while surrounded by the aroma of bubbling soups and the comforting familiarity of my pots and pans. What better place to face the fear gnawing at my gut? It might not have been a conventional treatment plan, but why not attempt to triumph over MS with steaming plates of pasta? However, when I made the audacious vow to
MS CONNECTION: WINTER 2012 my husband that I would host a dinner party every Sunday night for an entire year as a means of warding off this disease, he thought I had lost my mind. One would have to be a bit certifiable to think about cooking 52 dinners while living with a neurological condition, but a discussion about parties would be immensely more entertaining than one about motorized wheelchairs. I would stare down MS with spatula in hand. We began by inviting every friend we knew. The first six who accepted the invitation would join us at our home in Sonoma, CA for an evening of laughter, good food and plenty of great wine. Throughout the year, we added people we had met at events, through friends, and even a woman I had struck up a conversation with in a grocery store aisle. Eventually, more than 130 people received our email invitation each week. As we sat around our big, square dining table - referred to in the furniture industry as a “gathering table” - we heard stories that made us weak with laughter and others that brought tears to our eyes. We were given fresh insights into the people we thought we knew well, while we also formed dozens of new friendships. There was the sweet, older neighbor who joined us for dinner one night and informed us that he had been Bozo the Clown in his younger days. The entire table was awestruck when he burst into character. Then we discovered one of our friends had helped make The Allman Brothers’ rock band famous. Another had been on a plane with the terrorists a week before 9/11.
NATIONALMSSOCIETY.ORG | 1-800-344-4867 We had staunch conservatives sitting across from diehard liberals. We hosted Christian fundamentalists at the same table as a lesbian couple. And everyone learned there is more uniting than separating us. By the time week 52 arrived, I had made gallons of marinara sauce, scores of ravioli and mountains of gelato. In doing so, I was able to conquer my fear of the future. I learned from the stories of others that the challenges we all face help form the core of who we are, giving us an insight into the strength within. The icing on the cake … I was still on my feet. MS didn’t win. I did.
The last thing I want to do is add to anyone’s burden by suggesting otherwise. My tale is not about bucking up. Simply put, it is a story about learning that I had more grit and resolve than I had imagined. I found that good friends are a powerful therapy, and I discovered that even though fate may shove you in a direction you don’t want to go, you can still find a means of traveling the road on your terms. ◊
I could never stomach my story being touted as yet another example of how merely thinking positively can change the course of your life, though. Anyone who has spent time in a hospital bed looking up at grim faces knows that there are some hurdles you cannot clear just by employing a perky disposition.
Ronda Giangreco has written a book about her year-long adventure called The Gathering Table - Defying Multiple Sclerosis with a Year of Pasta, Wine & Friends available at www.amazon.com. Sign up for her free monthly newsletter at www.thegatheringtable.net.
THANK YOU TO OUR BIKE MS SPONSORS!
Waste Management | Sonoma Mountain Village | Bayer Healthcare Charles Schwab | High Tech Burrito | Genentech | Mission Bay Conference Center
Northern California Chapter 1700 Owens Street, Suite 190 San Francisco, CA 94158
ASSIST US IN CONTINUING TO BUILD WALK MS We are always looking for passionate individuals who are willing to share their talents and skills with our team in order to enhance the Walk MS experience. If you have interest in the following areas, please contact firstname.lastname@example.org to learn how you can get involved. • • • • • •
Marketing Sponsor Research Food Coordination Logistics Entertainment Coordination Participant Communication
• • • •
Social Media Starting a Walking club MS Educator Graphic Design • Secure donations • Community outreach
“AS A VOLUNTEER I’VE MET A LOT OF PEOPLE WHO EITHER SHARE THIS DISEASE, OR HAVE BEEN AFFECTED BY IT IN SOME WAY, AND THE SUPPORT AND POSITIVE ENERGY HAVE HELPED ME STAY MOTIVATED IN MY EVERYDAY LIFE.” - APRIL C