template#2 for Adaptive Adventu - National Multiple Sclerosis Society
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template#2 for Adaptive Adventu - National Multiple Sclerosis Society
MSConnection 1999 #4 Northern California Chapter Gardening (page 18) Mountain Biking (page 25) Water Fun (page 12) Snow Skiing (page 14) A D A P T I V E A D V E N T U R E S Tips from Toni..page15 New Regulations....22 Sonoma Waves....24 The National MS Society...One thing people with MS can count on. I N T H I S I S S U E From the Wellness Coordinator Living Well ........................................ 3 Features Therapeutic Horseback Riding ........ 4 Outward Bound with MS.................. 6 Sailing with MS............................... 10 Whitewater rafting, kayaking and fun!................................................... 12 Adaptive Snow Skiing.................... 14 Raising a Garden............................. 18 A One-Off Tracking Adventure....... 25 Health Focus The Jimmie Huega Center ............. 16 In Every Issue Tips from Toni .................................15 Online with Bill Lind ....................... 20 MS & The Law New Airline Regulations................. 22 Speak Out The Jogger ...................................... 17 Volunteers Volunteer Opportunities................. 22 Client Delivers Wellness ................ 23 Fundraising Riding the Sonoma Wave .............. 24 READaTHON Results ...................... 26 Making Giving Easy ....................... 27 Milestones Ten Years and Still Counting!........ 32 Listings Recreation Resources ...... 8, 9, 14, 21 Self-Help Groups ............................ 28 Classifieds ....................................... 30 Calendar .......................................... 31 and... Research Highlights pull-out section! 2 1999 #1 MS Connection is the quarterly newsletter of the Northern California Chapter of the National Multiple Sclerosis Society. It is mailed free of charge to chapter members. The National Multiple Sclerosis Society is proud to be a source of information about MS. Our comments are based on professional advice, published experience, and expert opinion, but do not represent therapeutic recommendation or prescription. For specific information and advice, consult your personal physician. The National Multiple Sclerosis Society does not endorse products, services, or manufacturers. Such names appear here solely because they are considered valuable as information. The Society assumes no liability whatsoever for the use or contents of any product or service mentioned. © 1999 National Multiple Sclerosis Society Northern California Chapter 150 Grand Avenue, Oakland, CA 94612 Phone: (510) 268-0572 Fax: (510) 268-0575 E-mail: info@nmss–nocal.org Web: www.nmss–nocal.org Chair Jill Wright, MD Vice Chair Kathleen O. McEligot Secretary Marc Stolman Treasurer Maureen Lucey Mihelich Chapter Programs Chair Joan Hall-Feinberg Chapter President Julie E. Thomas Newsletter Editor Veronica Navarrette Toll-Free Number: 1-800-FIGHT MS F R O M T H E W E L L N E S S C O O R D I N AT O R Living Well Dear friends, Welcome to the fourth and final issue of MS Connection for 1999! We’ve had an incredible year, having explored some very practical and important issues associated with MS: managing symptoms, utilizing technology to enhance our productivity and quality of our everyday lives, and taking the necessary steps to secure our employment and employability. As 1999 draws to a close, your Chapter wants to reaffirm our commitment to providing information, services and opportunities to promote overall physical and emotional wellness. Time and again, studies show that physical activity, no matter how minor, reaps not only physical benefits, but emotional ones too. Therefore, to end our year, we chose to dedicate this issue to a less than practical, but just as important component of everyone’s lives: recreational activity. In this Adaptive Adventures issue of MS Connection, you can read about how others who live with MS continue to challenge their physical limits by taking part in a variety of adaptive recreational activities. From sailing to mountain biking, from horseback riding to whitewater rafting, there are many opportunities for people who live with MS to get physical and stay active. We hope that these stories inspire you to choose an activity you think might assist you in deriving the same benefits. Let me also share that many have benefited from the wellness programs sponsored by your Chapter. We will continue to sponsor these programs and seek new ways to further fulfill our commitment to your overall wellness. If you have something to share or want more information on your Chapter’s wellness programs, you can e-mail me at linda.zukowski@can.nmss.org or call 1-800-FIGHT MS. Here’s to living well! Yours Truly, Our mission: to end the devastating effects of multiple sclerosis. Linda Zukowski Wellness Coordinator Visit Our Website: www.nmss–nocal.org MS Connection 3 T H E R A P E U T I C H O R S E B A C K R I D I N G Let it Ride! b y Judy Finelli Excerpts taken from an article written by Judy Finelli for Cane & Able newsletter, November 1997. Judy, who has MS and suffered from a childhood fear of horses, decided to try therapeutic horseback riding after reading an article about another woman’s positive experience. A massive exacerbation in 1993 left me feeling unphysical and fearful of taking any risks. I was afraid of falling out of my wheelchair. Deep down I still longed for a challenge. Another thing, which drew me back to the article, was that, unlike other therapies, this was one I could do outdoors. I used to perform outside, and missed it. So, I picked up the article again, found the phone number for North American Riding for the Handicapped Association (NARHA) and called 1-800-369-RIDE to get a list of the centers in California. One turned out to be near my house. By the time I arrived at my first lesson, I was a nervous wreck. My mind was racing. My thoughts went something like this: “What if the horse doesn’t like me? Animals can sense fear. What if the horse doesn’t want me on its back and throws me like elephants do? ” and so on. 4 1999 #1 The Horse Then I saw my horse. In reality, he was a sagging, light gray, middle-aged Percheron who had seen better days. To my eyes, he was a noble, white steed who had just stepped out of the mists of Camelot, complete with a long, creamy white, flowing mane and tail. His name was Chief. All of my medieval fantasies of damsels and knights were shattered when, from a platform up a wheelchair ramp, four people hoisted me onto the padded horse’s back and I was deposited face down, arms and legs wrapped around the horse with my head on Chief ’s rump almost touching his tail. Guinevere I was not. My next shock came when the horse started to walk. Horses don’t simply walk, their bodies’ undulate, ripple, rock forward and back, side to side and diagonally in all directions at once. Since I was also jolted forcibly every which way, it was intense, and because of my spasticity, it was also painful. However, my instinct told me this pain would be therapeutic. (I’ll take pain over numbness and deadness any day.) Also, as I smelled the ocean air and felt the sun and wind, I realized something wonderful was happening—I was moving Toll-Free Number: 1-800-FIGHT MS Riding rarely hurts me now. Instead of feeling jostled and jarred by the horse’s movements, I am more relaxed and can blend into the horse’s gait. I don’t feel that tired or hungry after the lessons anymore, just energized. I used to be stiff all the time. My legs and hips feel floppy and loose afterwards for the rest of the day. This looseness occurs more and more, even on non-riding days. My arms feel stronger; I have Physical Benefits more sensation I have been riding below the waist and I was moving through for a little over a a dramatic increase space and I wasn’t in a year. What benefits in the involuntary wheelchair or in a car, but have I gotten? movement in my on a living being. When I first feet, ankles, legs started, I could only and lower back. lie face down. Emotional Benefits When my teacher first asked me to push up, my legs were so stiff, my Riding, in addition, has been an excelarms so weak, and the horse so wide lent mental exercise. I have to conthat I could only push up a few centrate, focus and do specific things inches. Little by little, I got so I could as I ride. I have to stay in present push up to sit facing backwards. time. I feel pretty safe at the Then I lay on my back face up with Woodside Center as they do everymy legs around the base of the horse’s thing possible to minimize the risks. neck. Eventually, the side-walkers Having exercised my will to overcome helped me up to sit facing forward. a childhood fear, I feel more positive Whenever I got too tired, I could lie about myself. Emotionally, I tend to back. I changed riding centers in hold in anger and sadness. During my June 1997, and now ride at the Naearly days of lying face down, I always tional Center for Equine Facilitated felt the horse could literally shake Therapy (NCEFT) in Woodside (650) tears out of me. I couldn’t lie to my851-2271. It was here that I learned self. I would ride and sob a lot then. to use saddles specially made for the Sometimes the tears were also of pure disabled. I now can sit up facing forjoy. Now, I just feel the energy of exward for much of the lesson, most of hilaration. the time. It feels great to stimulate For Resources on Therapeutic Horseall those nerves, which branch out to back Riding, please turn to page 8...... my lower spine. through space and I wasn’t in a wheelchair or in a car, but on a living being. I was transported back in time to a slower-paced world. So, my fantasy did come true in a way I couldn’t have predicted. I was no longer afraid. I was on my white charger. It was delicious. Afterwards, when I gave Chief a carrot, he ate it gratefully and let me pet his nose. Visit Our Website: www.nmss–nocal.org MS Connection 5 O U T W A R D B O U N D W I T H M S Bound for Adventure, Inside and Out b y Michelle Armerie Excerpts taken from an article written by Michelle Armerie for Abilities magazine, winter 1997. Michelle, who has MS and is a wheelchair user, was one of 12 participants on a Zurich Access to Adventure Outward Bound wilderness program sponsored by Zurich, Canada. O ur fifth day out brought a special surprise. We had barely set up base camp when it was announced that we would each be going on a solo outing. Furthermore, although we were to do this as an exercise on our own, we were still a team. Therefore, each of us would be going through the same thing, at the same time; and that, we were told was reassuring. As the afternoon grew to a close, we were each taken, one by one, with our sleeping bags and mats, a packsack of clothes, a small bag of food and a piece of plastic for a tarp, to an isolated area on the lake—and left alone. It felt like some sort of rite of passage. I was ushered out of the canoe and left on a rock ledge to set up camp, with my meager supplies— 6 1999 #1 and a whistle, just in case of emergency. Very reassuring, that whistle . . quite . . . Nearly immediately I made friends with a cedar tree. “Tree,” as I decided to call it, volunteered to hold my tarp up all night (or so I hoped). Tree and I bonded instantly, although, in hindsight, sap may have had something to do with it. I had a sense that the day was growing late. I set my supper preparations down on the rock surface: a baggie of couscous to mix with some of the water I had in my jug. As I reached for the jug I brushed against the couscous, which of course started to roll, picking up speed as it went over the edge of my rock to the ledge just above the water below. Foolishly, I started to go after the baggie—but Tree sent a message in the wind: “You are not wearing your life jacket!” Let’s just say, for dinner that night, I learned to appreciate further the subtle qualities of “gorp”—an exquisite combination of raisins, nuts, chocolate chips, sunflower seeds and mini-pretzels. Mmm, good! As dusk set in, I sat inside my makeshift “house” quietly contemplating life and listening to the frogs tune Toll-Free Number: 1-800-FIGHT MS up for their evening symphony. The tranquility of this moment was disrupted by an unexpected rustle through the underbrush—and it was very close. It wasn’t a heavy noise, but something was there just outside the tarp. I peered into the twilight and a head popped out from nowhere—a bit too close for my eyes to decipher any details. I flailed around, determined to protect my dwelling from the giant wilderness invader. Tree, who joined me in this battle, also put up a good fight. Unfortunately, in the heat of the attempted preemptive strike against unseen invader, half of our house came flapping down. It was at this point that the intruder deemed to show himself, in all this awesome glory. Tree and I caught a final glimpse of a bullfrog taking huge leaps across the campsite. Mr. Bullfrog was obviously late and eager to get to the symphony before the lights went out, his seat was taken and he was barred from the evening’s performance. OK, so this time it was a bullfrog. Next time who knows, it might be a wolverine. I grabbed my spoon and bowl and started clanging around the site. I was determined to give fair warning to any other intruders—lest they have to face our fury (Tree’s and mine) again that night. That night, I drifted in and out Visit Our Website: www.nmss–nocal.org of a half-sleep with the sleeping bag pulled so tight around my face that only my specs and my nose stuck out. I heard vague sounds of rustles and scratches in the middle of the night— but by now I didn’t care. “Fine, eat the food, just don’t eat the plastic, or me! I don’t want to have to deal with a carcass in the morning . . . yours, or mine!” The next thing I knew was the sweet chirp of a bird, announcing the new day. Whatever had been outside making all the scratchy noises during the night did end up with the rest of my food. Undoubtedly it was a bear (. . . maybe). Whatever it was, I was the visitor here. So the little food I offered was the least I could do for the hospitality. A good thing, I thought, that I had followed instructions in placing the food at a safe distance. I watched the sun come up and laughed while my stomach gurgled. I packed up my gear, had along goodbye with Tree, sat quietly and waited for the canoe to arrive to unite me with the others. In my mind I went over the details from the previous night. I knew that the others were doing the same, and I found myself gleefully anticipating the sharing of all our adventures. And sharing there was! Each of us had a unique contribution to make Continued on next page... MS Connection 7 O U T W A R D B O U N D W I T H M S Bound for Adventure, Inside and Out Continued from previous page... to the collective story which was this adventure. I felt, as did we all, that we were now members in great standing of a very exclusive club-a group of wilderness soul-mates. Our experiences—the solo expedition, the rainsoaked afternoon, the evening campfires, the grueling physical challenges, the shared song, the collective laughter—had changed each of us in differ- ent ways. But change was the common factor. We each were leaving this experience with gifts that, to some degree, we had lacked upon arrival: renewed confidence, increased determination, a sense of community . . . a willingness to trust. Michelle Armerie is a free-lance writer living in Toronto, Ontario. Re-print permission granted by author and Abilities magazine. For resources on wilderness recreation, please see the following page. R E S O U R C E S Therapeutic Horseback Riding All Seasons Riding Academy Danville, CA 510-823-1476 BOK Ranch North Redwood, CA 650-366-2265 Bonita Equestrian Therapy for the Handicapped Napa, CA 707-257-0430 Cornerstone Equestrian Center Vallejo, CA 707-643-2223 8 1999 #1 EQUI-ED Calistoga, CA 707-942-0915 From the Ground Up Pinole, CA 510-724-6862 Giant Steps Equestrian Center Petaluma, CA 707-769-8900 Continued on next page... Toll-Free Number: 1-800-FIGHT MS Helpful Equine Academy of Riding Therapy (HEART) Castro Valley 510-881-1404 Horses in California San Francisco, CA 415-221-9438 Horse for Healing Therapeutic Center Auburn, CA 916-878-0633 National Center for Equine Facilitated Therapy Woodside, CA 650-851-2271 Horseplay Therapeutic Center Vacaville, CA 707-447-8733 Renaissance Therapy Association Sebestapol, CA 707-823-2372 For more facilities in your area, you may contact the North American Riding for the Handicapped Association (NARHA) at 1-800-369-RIDE R E S O U R C E S Wilderness Recreation Organizations Environmental Traveling Companions San Francisco, CA 415-474-7662 Wilderness Inquiry Minneapolis, MN 1-800-728-0719 The National Ability Center Park City, UT 435-649-3991 SPLORE Salt Lake City, UT 801-484-4128 Disabled Sports USA/Far West Chapter Truckee, CA 530-581-4161 or 530-581-3127 www.dsusafw.org Breckenridge Outdoor Education Center Breckenridge, CO 1-800-383-2632 Visit Our Website: www.nmss–nocal.org The National Sports Center for The Disabled Winter Park, CO 970-726-1540 The Adaptive Recreation Center Big Bear Lake, CA 909-584-0269 MS Connection 9 W A T E R R E C R E A T I O N Sailing with MS b y Tom Crain onboard with my guests. The sudden lurches still occur, and there’s still the smashed elbow and torn shin, but hey, that’s sailing for the “normal” anyway. I wear a safety harness and a small, unencumbering life vest (a CO2 cartridge automatically inflates upon striking water), and I have permanent safety lines leading from the cockpit to Tom Crain and friend take time to visit before the bow as crouching setting off to sail on his boat, “Witness.” and crawling are often necessary. Grab bars have been installed on the mast, f course, I would love sailing. boom and dodger (surrounding windLiving in Santa Cruz affords shield), special grip tape applied to me proximity to the ocean. slippery areas of the deck and cockpit, Besides my experience and love for and I wear a condom catheter for the the sport, in the cockpit of a boat, my problems of frequent urination. My crooked gait and awkward balance wife also insisted I have a jazzy, safety resulting from my MS go unnoticed system called a life sling. It can literbecause everyone is clumsy on a boat. ally sling one out of the water. AtThere’s a certain equality to the untached to the boom and to the jib steadiness. Moving requires the winch, the hoist and tackle system knowledge of what to grab, where to can haul aboard a soaked and tired stand, and an understanding of most sailor with another’s help. Every movements from the waves and wind. sailor should have this equipment on Being able to read the ocean and board anyhow, but it’s essential gear prepare for the direction of movement for me now. helps “equalize” my ability to move O 10 1999 #1 Toll-Free Number: 1-800-FIGHT MS I always sail with a “crew,” usuWhether we’re dealing with a ally only one person, but someone to chronic disease, or the natural, slowhelp with the exiting and returning to ing process of age, doing what we love the slip, raise and lower the sails, and is not always possible. We are forced be there to help in any emergency. I to give up many great joys with MS, can only manage the helm and shout but we must try to retain anything of directions to my partner, but having our past abilities and retrain oursomeone else to enjoy the art and selves to enjoy the present while premake conversation can intensify the paring for the uncertain future. euphoric blasts of wind and water As Dylan Thomas said so eloanyway and the spiritual healing of quently, we must “Rage, rage against just being there cannot be underestithe dying of the light.” We have to mated. My favorite fellow fight our way sailor used to be my wife, but through what we Once over the lifelines a child in the family often can still do and and into the cockpit, I keeps her from joining me. can be in control again. I revel in its Now I share ownership of the can make the wind obey completion. The boat with someone else who me and send my craft satisfaction of loves sailing and can help with into most directions. overcoming an the maintenance of the craft. obstacle is its Once over the lifelines own reward. The and into the cockpit, I can be in conspiritual aspect of sailing amidst life’s trol again. I can make the wind obey giving water and creatures is a bonus. me and send my craft in most direcAdaptation is the answer. tions. I am captain of a vessel that can Please note* The Santa Cruz Harbor beat the wind or run with it. It’s my has installed a disabled parking slot choice. With my partner Sean Bullock, near my slip and a hoist is available I can pull lines, tweak sails, cut on a special dock for wheelchair capathrough waves and swells or surf bilities. There is also disabled parkthem, gaining surges of speed. I caing and an accessibility ramp to the jole the elements and make them give main door. Harbormaster, Ted Warburton, has been a sensitive and me rides. I rule, and when you’re dishelpful friend to the disabled and my abled, ruling anything is physically needs in particular. healing, a major mind-body connection. At anchor, the peace afforded by Tom Crain is currently being honored as sitting to watch nature at play can the 1999 National MS Father of the Year. only intensify the remedying aspects of time spent on the water. Visit Our Website: www.nmss–nocal.org MS Connection 11 W A T E R R E C R E A T I O N Whitewater rafting, kayaking and fun! T here are many organizations available that can offer you the type of exciting water recreation experience you may be looking for. Yes, even if you have a disability. Believe it or not, it is possible for a person with multiple sclerosis to go whitewater rafting and enjoy herself! Depending upon your level of disability and comfort, you can participate in water recreation. Whitewater Rafting Whitewater rafting offers a thrill a minute! Traditional raft trips offer the opportunity for approximately six people to paddle a raft down a river, under the direction of a trained guide. Prior to the trip, the guide gives instruction on proper paddling techniques and trains the group on how to form an efficient “engine” so the team can paddle down the river in an effective, energy-efficient manner. If you are looking for the camaraderie of a group experience, as well as a physical and emotional challenge, then a river-rafting trip may be for you. It is important to consider your level of energy and ability to keep your balance. Some raft companies have boats that are adapted so that you may lower your 12 1999 #1 center of balance by sitting on a sling on the inside of the boat, thereby enabling you to participate to your fullest ability while increasing your level of safety. Guides who understand disabilities are also more than likely to work with you if you want to paddle some of the time, and “hang on for the ride” when you feel you need to do so. Oar Boats If balance or fatigue is a major concern, you may want to consider a ride in an oar boat, an exhilarating experience on its own. Here the physical challenge is much smaller because the guide does the work of paddling down Toll-Free Number: 1-800-FIGHT MS R E S O U R C E S *Note: many of the same organizations that offer adaptive wilderness recreation also offer adaptive whitewater rafting and kayaking opportunities. Please turn to page 9 for the listing. the river. As a passenger, you are free to enjoy the scenery, the excitement, and perhaps be challenged emotionally. For some of us, riding down a river through tumultuous rapids is enough of a test of our personal limits! Seating can be adapted to fit your needs and to ensure comfort and safety. Usually there is someone who rides along in the raft with you to help support you during the rougher portions of the rapids. Many people enjoy this more intimate experience, especially if the individual riding along knows a lot about the history of the area; it is almost like having the convenience of your own personal tour guide! Kayaking If the thought of going on a whitewater rafting trip is still too overwhelming but you still would like Visit Our Website: www.nmss–nocal.org Kayaking can promise a relaxing day on the Bay! to experience the challenge of a boating trip, you may want to consider sea-kayaking. Paddling a kayak on the Bay offers a relatively safe water experience. After instruction from guides, you can paddle in a single-, double-, or a triple-kayak and experience the serenity of gliding along the water, the challenge of paddling, and perhaps the thrill of interacting with the local sea lions! A triple-kayak is convenient if you want to paddle with the support of friends, family members, or a trained guide. For those of us who experience fatigue, this can be a great experience; you can paddle when you feel like it, then rest and enjoy the ride when you don’t want to overexert yourself. Whichever experience you choose, boating has its benefits. Not only can you challenge yourself physically and emotionally, you may rediscover an aspect of your life that you thought was lost due to your disability. If nothing else, boating offers a chance to renew your spirit, refresh your attitude and have some fun! For Resources on adaptive water recreation, please turn to page 9. . . MS Connection 13 A D A P T I V E S N O W S K I I N G Have Snow, will Ski! Tahoe Adaptive Ski School (TASS), a program of Disabled Sports USA-Far West Chapter, is one of several organizations that provide adaptive snow-skiing lessons for people with disabilities. Packages usually include one-on-one instruction, use of adaptive ski equipment and lift ticket. R E S O U R C E S The following organizations provide either individual or group instruction. Tahoe Adaptive Ski School (TASS) a program of Diabled Sports USA – Far West Chapter Truckee, CA 530-581-4161, email: dsusatahoe@truckee.net Squaw Valley Lake Tahoe, CA 530-581-7184 www.squaw.com 14 1999 #1 Heavenly Adaptive Ski School Lake Tahoe, CA 775-586-7000 www.skiheavenly.com Mt. Rose Ski Area Tahoe Basin 775-849-0704, ext. 220 www.skirose.com Kirkwood Ski Area Kirkwood, CA 209-258-7245 www.skikirkwood.com Bear Valley Alpine skiing for disabled people-a program of Diabled Sports USA-Motherload Chapter Bear Valley, CA 209-795-5811 www.bearvalley.com Toll-Free Number: 1-800-FIGHT MS T I P S F R O M T O N I For tips on Daily b y To n i Wi g l e , O T R Living, write to: ear Readers: “Tips from Toni” Instead of answering National MS a letter from the mailbag, the Society editor asked me to address the importance of exercise both mentally and 150 Grande Ave., Oakland, CA physically in our lives. 94612 Early in the history of MS, or e-mail:toni@msconnection.org people were told to avoid all exercise, as it would worsen their condition. It daily activities and leaves you with took many years for research to be energy to enjoy outside leisure actividone in the field of MS specifically, ties that have meaning for you. that shows the benefits of an exercise So how does a person start an program far outweigh the temporary exercise routine? First you need to fatigue or weakness that people can seek out information from a profesexperience. sional. As with any change in your MS often strikes young and health care program, schedule a conmiddle aged adults, who shoulder sultation with your physician prior to work and homemaking responsibiliimplementing an exercise program. ties. These responsibilities leave little He or she may refer you to a physical time or energy for an exercise regime, or an occupational therapist for a therefore, you have just enough engraded exercise program to meet your ergy to do what you need to, but no needs. In addition, there is great deal energy left to do anything else. of information on gentle stretching A 1997 article by Alexa K. exercises, yoga classes, tai chi classes, Stuifbergen in the Journal of Neuroetc available from the National MS science Nursing called “Physical AcSociety or your local YMCA. tivity and Perceived Health Status in The hardest part is starting the Persons with Multiple Sclerosis” outprogram. Set your alarm clock to go lines excellent exercise guidelines. off earlier. Begin your day with 10 She warns that fatigue and limitaminutes of gentle stretching. Later in tions in mobility may contribute to a the day, warm up by stretching again sedentary lifestyle that increase risk and then add active resistive exercise, for developing other chronic disease i.e. gentle theraband, and weights. As such as cardiovascular disease, osyou are able to, begin building in aeroteoporosis, diabetes, and hypertenbic exercises, swimming, walking, or sion. Building an exercise regime riding a stationary bike, whatever you that includes adding flexibility, can do and tolerate. End with gentle muscle strength and endurance stretching again. Good luck in startmakes it easier to accomplish your ing your exercise routine. D Visit Our Website: www.nmss–nocal.org MS Connection 15