summer 2013 Northern California Chapter
MS Connection Newsletter accessible Summer Travel
considers is bathroom availability.
Whether you plan on taking trips around town, around the state, or around the country, traveling with MS can take its toll and often requires some advance planning. Physical limitations such as walking, sensitivity to heat, fatigue, or simply the additional equipment and supplies needed to get around are all factors to take into consideration. Don’t let any of these things stop you from getting out and enjoying life! No matter what extra accommodations you need, there are great accessible travel options to be explored.
Recently Doug and a friend traveled to Mt. Tamalpais in Marin County and were able to get out and explore along the paved paths. “Being out there for me in a natural setting is very energizing,” said Doug.
Doug Richardson of Petaluma was diagnosed with MS in 1988, but despite his MS, continues to get outdoors. Doug does not drive so the first step in his travel planning is to find someone willing to drive his vehicle. Because he uses a wheelchair, the second thing Doug looks for is a graded or paved area that is wheelchair accessible. And the third thing he
INSIDE 04 THIS ISSUE
organized trips for people with ms
heat and cognition
... continued on page 3
doug richardson doesn’t let ms stop him from getting out and enjoying nature
06 programs to help you live your best life
13 connections come full circle
MS connection: summer 2013
Letter from the president
explore and make connections 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 firstname.lastname@example.org Like us: /msnortherncal Follow us: /msnortherncal
Summer elicits thoughts of family vacations and a planned sense of some built-in adventure or relaxation depending on your personal preference. Whatever your summer plans, I hope you find meaningful information in this issue to beat the heat, get out and explore the world and make connections. If heat is an issue, consider finding an indoor escape - museums, local library events, and movies all provide entertainment, socialization, and air conditioning! The natural beauty of California is abundant with a visit to one of our state and national parks and recreation areas that are accessible. See page 3 for information on accessible nature trails and a discounted National Parks pass. If summer has you looking for adventure and connections, please join me at one of our great fundraising events which raise critical dollars for local programs and services and fund research to stop, restore and end MS forever. Turn to page 12 to learn about Bike MS: Waves to Wine Ride (our 30th Anniversary), Race to Stop MS and MuckFest, our newest event and the nation’s best mud and obstacle fun-run. Made with mud, sweat and cheers, the five-mile MuckFest course features a gauntlet of muck-filled mazes, pits and craters with over twenty gigantic steel obstacles. The fun doesn’t stop when you slide over the finish line. There’s beer, great food and music in the MuckFestival area. Let’s get dirty for MS! Whatever your plans this summer, take care of yourself and enjoy what our beautiful state and country have to offer. Happy trails and safe travels!
Janelle Del Carlo Chapter President Northern California Chapter
nationalmssociety.org/can | 1-800-344-4867 ...continued from page 1
“It’s excitable for the senses. There are a lot of things that stimulate not only oneself visually, but there are a lot of smells. The day we went up there it was gorgeous. It was warm and nice to be out.”
National Park Service lifetime “Access Pass” is available to people who are permanently disabled and their families. The pass gives you: • Free admission to all federally operated
parks, monuments, historic sites, recreation areas and national wildlife refuges. • A 50% discount on most federal use fees charged for special facilities and services, such as camping, boat launching and parking.
For Doug, the opportunity to take photos of the Bay and see San Francisco and the Pacific can’t be missed. “I would encourage people to get out and enjoy what they like to do and if that’s nature, then get out in nature. And if it’s photography, get out and do it.”
For more information, visit http://www.nps. gov/findapark/passes.htm.
Accessible Nature Trails
Local Recreation and Wellness Resources
Many state parks and the most famous national parks, like Yosemite, have accessible trails. To find out which state parks have accessible features, visit http://access.parks. ca.gov/. To find out which National Parks have accessible trails, visit www.nps.gov. A
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
The Northern California Chapter offers recreation and wellness resources on our website, like yoga, horseback riding, aquatics, and more. Visit www.nationalMSsociety.org/can and click on Programs & Services, then Programs to Live Your Best Life, and then Recreation and Wellness. ◊
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 Organized Trips for People with MS The Northern California Chapter has had a long relationship with the Bay Area company, Environmental Traveling Companions (ETC). ETC opens the beauty and challenge of the great outdoors to people with disabilities through organized trips that enable participants to access the wilderness and develop an environmental stewardship ethic.
MS connection: summer 2013 my physical and emotional sanity.” You don’t have to wait for an opportunity with the Chapter to take advantage of ETC’s trips. ETC not only offers white water rafting trips in several locations, but also sea kayaking and cross country skiing. Trips are available for groups and individuals and both overnight and day-long adventures can be adapted to meet your needs! For more information on the fantastic trips that ETC offers, please visit their website at www.etctrips.org or call 415-4747662. ◊
Whitewater Rafting Trip with ETC
Many Northern California clients and their families have attended outings with ETC in the past, such as kayaking in Sausalito and rafting on the South Fork American River. In 2011 when the Chapter was registering people for a kayaking trip, many clients were in disbelief that they would really be able to do it physically and several people got so excited over the phone when they realized it was possible. One such participant responded to her experience by saying “I didn’t even know places like ETC existed. It has reinvigorated my love of outdoor/nature activities which previously MS had taken away from me. It means a lot for
Sunday, September 8th 9:45 a.m. – 3:30 p.m. Starting Camp 6700 Hwy 49, Lotus This fun, accessible adventure hosted by Environmental Traveling Companions (ETC) is back by popular demand! Come raft one of California's most celebrated whitewater runs, the South Fork of the American River. This river is perfect for beginners or seasoned whitewater veterans. ETC's accessible campground at the river's edge provides the perfect stage for a great day trip. Bring your picnic lunch, water, snacks and sunscreen and join us for a day on the river! The cost is $25 per person but scholarships are available. The registration deadline is Tuesday, September 3rd. To register, visit www.nationalmssociety.org/can or call 1-800-344-4867.
nationalmssociety.org/can | 1-800-344-4867
Heat and cognition By Julie Stachowiak, Ph.D.
Results from a new study show a link between heat and impaired cognitive function in people with MS. I bet that many, if not most, of you reading this will think, “This is news? I could have told anyone that my thinking (along with other things) is impaired in hot weather.” However, this study actually is a big deal, because it is the first time that such a link has been formally demonstrated.
The Numbers Researchers from the Kessler Foundation, with funding from the National MS Society and the National Institutes of Health, compared cognitive functioning under different temperature conditions in 40 people with MS and 40 people without MS. The data showed that cognitive functioning in people with MS was more affected by hot weather than cognitive functioning in people without MS. On cognitive testing, people with MS performed significantly better on cooler days than they did on warmer days, while people without MS performed the same regardless of the outside temperature. This is important information for many reasons. The study’s scientists pointed out that this type of seasonality could affect clinical trial results. For instance, if people enrolled in a trial in the summer and were followed for six months through fall and into the winter, a drug to treat cognitive dysfunction (or many other MS symptoms, really) could
seem like it was working, when in fact, some of the improvement might simply be due to temperatures dropping.
What You Can Do That is interesting from a scientific perspective, but what does this information about heat and cognition mean for people with MS? There are no treatments that are effective for cognitive dysfunction, but there are some things we might be able to do to help ourselves. Here are some things that can help when traveling in the heat this summer: • Drink plenty of cold fluids. • Use fans, air conditioning, even hand-held spray bottles. • Exercise in a cool environment and plan your time outdoors for the early morning or late evening when temperatures are the lowest. • Wear commercial cooling garments such as vests, headbands and neckbands. • Take a cool bath or shower to help reduce core body temperature following activity or exposure to a hot environment. • Stay calm and focus on one task at a time.
buying cooling products
A quick internet search for “personal cooling products” is a great place to start.
FREE COOLING VESTS
The MS Association of America provides cooling vests to individuals with MS who qualify. Learn more and apply at www.mymsaa.org/msaa-help/cooling/.
06 EMOTIONAL WELLNESS TELESERIES A new topic is offered every month in our ongoing 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 please call us at 1-800-344-4867 or at nationalmssociety.org/can.
Positive Self Care for Your Body Tuesday, July 2nd, 2:00 p.m. Tuesday, July 9th, 12:00 p.m. This workshop will address the importance of bringing loving-kindness towards the body when dealing with a chronic illness like MS. What do you think and feel about your body? How are your feelings and struggles different or similar to before you were diagnosed with MS? This class will offer you simple, positive ways to practice good self-care of the body, both the inside health of your body as well as your outer appearance.
Meaningful Time Management Tuesday, August 20th, 2:00 p.m. Tuesday, August 27th, 12:00 p.m. Our biggest and most precious, nonrenewable resource in life is our TIME. How
MS connection: summer 2013 we spend our time is how we spend our life. Come and learn some basic time management techniques that make time your ally rather than your enemy. No more rushing. No more cutting corners. No more self-imposed stress. You can design a schedule for yourself that is balanced and meaningful.
Asking For What You Want: The Practice of Assertive Communication Tuesday, September 10th, 2:00 p.m. Tuesday, September 17th, 12:00 p.m. Come to this workshop and learn ways to ask for what you want in an assertive way with spouses, friends, family and health care professionals. We are often taught not to make waves, yet this can lead to not getting our needs met. It can also lead to feelings of victimization. You will learn the philosophy behind assertive communication and skills that will help you be assertive without being aggressive, passive or passive-aggressive.
accessible from the comfort of home Stress and Pain Management 7-week, self-paced research program Online starting Monday, July 22nd Optional phone sessions, Tuesdays: July 23rd, July 30th and August 20th at 6:30 p.m. This self-paced online program will provide you with education and guided assignments based on four different successful and well-
nationalmssociety.org/can | 1-800-344-4867 researched non-medical pain and stress management methods. It is part of a research study to evaluate the effectiveness of online programming for stress and pain management. Participants will have the opportunity to participate in two phone question and answer sessions with the Program Developer, Dr. Pearl Werfel.
answered and learn more about the resources available to persons with multiple sclerosis. A phone and computer with internet access will be necessary to join this program.
Dr. Pearl Werfel, a psychologist with over 25 years of experience, has expertise in living well with MS and anxiety, stress and pain management. Dr. Werfel serves as a member of the Clinical Advisory Committee for the Northern California Chapter and is co-writing a book for mental health professionals about working with clients with MS.
National MS Society Teleconference
Register for this program online at www.nationalmssociety.org/can or by calling 1-800-344-4867.
Online Newly Diagnosed Orientation
Please call 1-800-344-4867 or visit www. nationalMSsociety.org/can to register for one of these three programs.
Join us from the comfort of your own home for this informative conference call on living with MS. This educational program is free and made available through Chapters in the West Region of the National MS Society. To register for this teleconference, please call 1-800-344-4867 and press 1.
Thursdays: July 11th, September 12th and November 14th 6:00 p.m. – 7:30 p.m.
Intimacy and Family Planning
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. Dr. Crabtree will address the most common concerns for people who are newly diagnosed. This orientation provides an excellent opportunity to have your questions
While the challenges may at times feel overwhelming, many couples have found successful and satisfying ways to deal with the intrusion of MS in their lives. In fact, confronting the challenges of MS draws many partners closer together, deepening their sense of connectedness and commitment. Join us to learn more about some of the barriers that MS can create for couples and hear helpful pointers on how to work around them.
Thursday, August 1st 6:30 p.m. – 7:30 p.m.
MS connection: summer 2013
Connections that count at Walk MS 2013 Walk MS: Northern California 2013 was a huge success where many meaningful connections were made. THANK YOU to everyone who walked, volunteered, donated, or sponsored the events. Across Northern California, 12 communities banded together to prove that every connection counts. The walks were a wonderful celebration of hope, promise and funds raised to create a world free of MS. Walk MS: Northern California 2013 is striving to meet its $1.7 million fundraising goal. The money raised at Walk MS will fund innovative programs and services, such as Living Well with MS and Free From Falls. Walk MS donations will propel research forward, faster, and will support critical projects focused on stopping the progression of MS, restoring function that has been lost and ending MS forever - projects such as the current Stanford study by Ben Barres, MD, Ph.D., on how myelin is made, with the goal of finding ways to repair damaged myelin in people with MS. Thank you for being a part of the MS movement, for your dedication and determination, and for helping us take one step closer to a world free of MS. We hope to make connections with you in 2014! ◊
upcoming fundraising events Race to Stop MS
Race to Stop MS offers runners, marathoners, and distance athletes of all types the chance to create a world free of MS while pushing their personal limits. Join us for the San Jose Rock ‘n’ Roll Half Marathon in October. Or choose any marathon, triathlon, ride or swim of your choice to compete in and raise money for MS. www.RaceToStopMS.org
bike ms: waves to wine ride
September 21-22, 2013 San Francisco to Sonoma County Bike MS: Waves to Wine is one of the most picturesque, fully-supported rides in the country. We offer routes of 40, 75, and 100 miles on Saturday and 50 or 75 miles on Sunday. After the ride enjoy fun, food, festivities, and wine! www.WavesToWine.org
nationalmssociety.org/can | 1-800-344-4867
Connections come full circle Rob and his wife, Denise, who was diagnosed with MS in 2003, have a meaningful connection with the Northern California Chapter. In 2004, the couple from Pittsburg, CA joined Walk MS: Walnut Creek until Denise’s mobility issues ended their participation. Now that Denise uses a wheelchair, Rob continues his involvement with the Society by participating in Bike MS: Waves to Wine. Each year since 2009, Rob has been the team captain of Team Cushman and Wakefield, raising over $30,000 to date. Rob says he could not have done it without his supportive community of donors. When reflecting on his experience with Waves to Wine, Rob said “Riding with a lot of other riders with MS is certainly an inspiration. In fact, there have even been times where there is that mental side that says ‘Do you even want to be out here at all?’ To be able to know you can persevere because of what you see people with MS are going through...we can all persevere.” Rob’s commitment to raising money for MS helps fund programs like the whitewater rafting trip with ETC on September 8 (see page 4) which allows people with mobility issues, like Denise, to get outside and make connections with their community. One past rafting participant said “I had a great time and it was wonderful to see some of the people with MS that are only mobile via wheelchair or cane be able to do something like this.” Consider the impact you can make by participating in one of the fundraising events below. Maybe the money you raise will help pay for the financial assistance the Chapter can provide for an air conditioner to keep someone cool this summer, or help contribute to a UCSF study researching a possible cure for MS. Whatever your connection, every connection counts! ◊
October 26, 2013 Solano County Fairgrounds Rise to the dirty challenge at our five-mile run and obstacle course. There’s also beer, great food and music in the MuckFestival area. The “muckier” the merrier!
Do It Yourself Fundraising is an opportunity for people with a deep commitment to the MS cause to raise awareness and critical funds for the MS Movement in new and creative ways. Plan any event and raise money for a world free of MS.
MS Activists’ Plans Heat Up for Summer Legislative visits are an important part of MS activism. MS activists connect with public officials, share their stories related to MS and communicate their needs to make public officials aware of what multiple sclerosis is and how it impacts so many lives. This summer our leading MS Activists throughout Northern California are planning to visit 15 members of Congress. The main purpose of these visits is to teach the officials how a policy change enhances or hinders the quality of life for people living with MS and how important it is to end the disease. This year the federal issues include support for MS research funding in the Congressionally Directed Medical Research Programs (CDMPR) and at the National Institutes of Health (NIH). The CDMRP is a peerreviewed program that funds high risk, high reward research. It takes prudent measures
MS connection: summer 2013 to ensure that its work is not unnecessarily duplicative from the work done by other research organizations such as the NIH. The Society regards NIH as an invaluable partner to finding a treatment for progressive MS, additional therapies for relapsing MS and a potential cure for the disease. We are also requesting support for the Lifespan Respite Care Program (LRCP) that provides grants to state agencies to maximize existing resources and ensures that respite is available and accessible to family caregivers by establishing or enhancing statewide respite systems. We have had some very successful in-district visits already. For example, Al Pross, an active Government Relations Committee member in San Francisco, met with Congresswoman Jackie Speier who is also a member of the MS Congressional Caucus. She was very amenable to NIH and CDMRP funding because she recognizes that as our country’s population ages, we will need to understand, manage, and cure all diseases, not just MS. ◊
Leading MS activists gathered recently for roundtable discussions to discuss the best approach to speak with legislators about federal and state funding priorities for people living with MS
nationalmssociety.org/can | 1-800-344-4867
2013 MS scholarship recipients The Northern California Chapter has awarded five deserving students with college scholarships. The awards range between $1,000 and $3,000. Recipients were selected based on academic performance, financial need, volunteer and extracurricular activities, and the highly weighted essays they wrote about the impact MS has had on their lives. Congratulations to the following scholarship recipients:
Alison Petsod Hixson
UCSFâ€™s Professor Hauser wins prestigious award Professor Stephen L. Hauser, MD, of the Department of Neurology at the University of California San Francisco is the 2013 winner of the Charcot Award in recognition of his pioneering studies in MS genetic susceptibility and role in translating immunologic findings into clinical trials. The prime focus of the biennial Charcot Award is to acknowledge a lifetime achievement in research into the treatment and understanding of MS. Professor Hauser was selected by an international panel of distinguished clinicians and scientists from the MS International Federationâ€™s International Medical and Scientific Board. Professor Hauser is an international leader in MS research and for more than two decades has led the efforts to identify genes that determine susceptibility to MS. He has chaired numerous committees of the Institute of Medicine and is currently on the Commission for the Study of Bioethical Issues, advising President Obama on issues that may emerge from advances in biomedicine and related areas of science and technology. It is a great honor to have a Northern California MS researcher as the recipient of this prestigious award. â—Š
Northern California Chapter 1700 Owens Street, Suite 190 San Francisco, CA 94158