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Painting Smaller but Still Living Large
Virginia Phillips' paintings have grown smaller since her MS diagnosis a decade ago, but her picture of the world is big as ever. "My attitude is good. I'm not depressed, and I have learned to handle the rest of the many aggravating MS symptoms," the 77-year-old painter and interior designer said.
Phillips loved drawing as a child, but everybody’s career advice during the Depression was to "have something to fall back on."
"You could be a secretary, a nurse or a schoolteacher and that was about it in those days. Women didn’t have a lot of options as they do now. So I picked the best of those three options, schoolteacher, but I hated it because I soon found I’m a doer, not a get-them-to-doer," she said.
Phillips paints in oil, and she likes to paint big, though she’s now limited to 30-by-40 inches. "My top half is pretty good in terms of strength and flexibility," she said.
"But if I wanted to stand, say, and do some grandiose movements to some classical music, that’s out, because I don’t stand very well and dance around. Although I do paint to music and have for a long time, my mobility is lessened and that has affected my paintings. But I still try to get as much life into them as possible, even though I’m sitting. In fact, I called one of my recent paintings Exuberant."
Only once did Phillips let MS influence the subject of her painting: "I did paint one painting when I first was diagnosed that was really dark. One of my friends said, 'Boy, you were in a bad mood when you painted that one,' so I put that aside.
"A few years later I picked it up and did a painting over it with a lot of bright colors. I let some of the dark colors show through so it was actually brighter because of the dark accent bits."
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Diane Earhart: Boldly Going Where No Private Pilot Has Gone Before
Since almost losing her job and hobby because of an MS diagnosis, Diane Earhart has dedicated her life to the proposition that if something’s do-able, it deserves to get done.
Earhart had been deeply in love with aviation since childhood. She got her private pilot license at 17 - the youngest the Federal Aviation Administration (FAA) allows - and after six years as a secretary, found work as an air traffic controller and flight instructor in St. Louis.
Then came the MS diagnosis, in June of 1995. The FAA took her wings off.
"I had a fight to maintain my medical certification," she recalled. While her neurologist put her on a disease-modifying drug, Earhart launched a novel PR campaign, sending the FAA a video of herself dancing, cycling, even sorting laundry.
Not only did the feds let her go back to work, they later wrote to thank her for sticking up for aviators with medical conditions. "There are several pilots now with MS. Now it’s basically a non-event, and that’s because I blazed the path 13 years ago. It was a big deal then," Earhart said.
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Care-A-Lot for MS
Denise Clarke, co-owner and vice president of Care-A-Lot Pet Supply – lives with MS. Through her business she was raising money for MS by selling "walk boots" — boot-shaped cards to display in the stores, with the money going to the Hampton Roads Chapter. But Clarke wished she could do even more for people whose symptoms didn't respond as well as hers had to medication. Inspiration struck when she and husband attended a trade fair and saw a loofa dog — an irresistible, grinning dog toy — that had been designed as a breast cancer fundraiser.
Clarke asked the chapter if the MS community would like a loofa dog too. The pitch: Care-A-Lot would commission and sell the toys at $6.99, donating $5 apiece to Promise: 2010, a fundraising campaign that focuses on research — exactly the giving opportunity Clarke was looking for.
"When the customer gets something for their donation, I think they're more apt to donate" than when they're simply asked for a cash contribution, Clarke said.
Rice introduced Clarke to the Society’s national corporate-relations team, and it was loofa-love at first sight. Fast forward a few months and all of the 5,000 limited-edition toys have been sold. Oh, and that $5 donation rose to $6 after some last-minute negotiating between the Clarkes and the manufacturer.
Next up: dog collars with little MS charms.
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Giving Gives Woman With MS a New Outlook
We've all heard it's better to give than receive — but Cami Walker is finding out just how much better.
Walker, a small-business consultant in Los Angeles, was a newlywed, newly diagnosed with MS, and spent much of late 2006 and early 2007 in the hospital with horrific pain. While the docs gave her drugs, a friend gave her an odd bit of advice:
Give 29 gifts in 29 days.
"I was like, 'Ooookay, whatever. I can't even walk. How is giving things away going to help me?' And she's like, 'Just try it, it might help.'"
So she did. And it did.
Not right away, though. Walker forgot about her friend's suggestion, then came across her diary entry about it weeks later during a particularly painful, sleepless night. The next morning she called a friend who lives with MS.
"We had a nice conversation that morning. That was my gift the first day. And things immediately started to turn around for me. It blew my mind."
Walker decided to treat herself to breakfast out that morning, so her husband dropped her off at a coffee shop. Then two small but amazing things happened. Another diner secretly paid for her breakfast. And she was able to walk home on her own power.
She kept giving gifts. Not necessarily the kind in wrapping paper, but things or actions designed to improve other people's lives. She did the dishes for her husband, which she hadn't been able to do in a while. She made some charitable donations. She fed a neighbor's kitten. She gave free time to clients and a bigger-than-usual tip to her massage therapist.
And she kept feeling better.
Walker doesn't claim that gift-giving directly impacts MS. She still takes her meds. Rather, "it changed my thinking, which in turn had a positive impact on my health. It let me look at what I'm capable of every day. It helps shift my attention, because I was just completely obsessed with my misery. I really do believe that there's great power in my thoughts, and if I'm spending all day obsessing about how I can't walk, I'm just inviting more frustration into my life."
Walker's friend had picked up the 29-gifts-in-29-days concept from the teachings of two African healers, and Walker decided to give it an American spin with the 29-Day Giving Challenge, a Web site she launched in April 2008. The site includes a blog where people describe how their lives have changed since they started giving.
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Plane Pull: Making a difference together
The MS Plane Pull may be one of the most unusual fundraisers out there, but the rules are simple: First team to cause a 72-ton FedEx 727 to roll by pulling it with a rope wins.
For four Septembers in a row, the Society's Maine Chapter has been the beneficiary of this crowd-pleaser at the Portland International Jetport Aeronautical Exhibition. "The airport used to do it for other charities, but we did a good job," said Mufalo Chitam, the chapter’s special events manager.
"Now it's a media draw. We usually have three television channels and print media. Some nonprofits would want it, but the Jetport has decided to continue with us."
Each team of 20 must raise $1,000 to compete. "Except for two friends and family teams, the rest of the teams are company-sponsored," Chitam said. "It’s great for team building."
Winning teams get trophies topped with toy FedEx planes, but the real winner is the MS movement. The chapter raised $15,000 at the 2008 MS Plane Pull — without charging anybody to check a bag!
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Looking for Answers
Douglas Saunders, Kansas
A fellow soldier that I knew in Germany was diagnosed with MS. One day he was in a wheelchair. I didn't understand what was happening to him, so I called the Society to learn more about the disease. In 2004, I started riding in the MS Bike Tour. When I was deployed to Iraq, I was determined to bring my bike with me. I eventually formed a team of other soldiers, Team Danger. Today, since many of the people I come across don't know much about the disease, I try to do my part to educate them, like the Society did for me. If I could tell you just one thing, it would it be, 'There's hope, be strong, people care.'
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Connecting the Mind and Body
Eric Small, California
I was diagnosed with MS when I was 22, in 1951. My initial symptoms were optic neuritis, loss of balance, digestive problems, weakness and shaking in my legs, and extreme fatigue. Although being diagnosed was somewhat daunting, it also came as a relief to my family and the community. Before my diagnosis, people would see me stumbling around, and they didn't know what was wrong. Overall, my friends, family, and the community were very supportive of me.
After taking steroids for a year, which had limited benefits, I decided to manage my MS through diet, exercise, and mindset. I began studying yoga with Mr. Iyengar in 1974. I was drawn to Mr. Iyengar and his practice because of the emphasis on the mind and body connection. He encouraged me to use my body as a laboratory to learn and grow. I have been teaching yoga for more than 40 years now. I have an adaptive yoga program as well as an optimal living program for people with MS. I also recently co-wrote a book, Yoga & MS, which is scheduled for release within the next year.
Living with MS can be an inconvenience, but it is more importantly a continual learning experience. My life has been extraordinarily rewarding, and I am inspired each day by the people with MS who come to my classes and are able to improve their mindset and wellbeing. I like to tell people not to become defined by the disease and to get on with their lives.
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Adapting to What Life Gives You
David Kelleher, Oregon
When I was stationed in Italy, I awoke one morning to discover that one of my eyes had moved sideways, which caused me to have double vision. I put a patch over this eye so I could continue working. The base optometrist scheduled me for a MRI, and I was sent to a military hospital. I was then sent to the Walter Reed Army Medical Center in Washington, D.C., where I was diagnosed with MS. I was 23 years old and had to end my service. It was very hard for me to accept my diagnosis. I kept wondering how I, who was in amazing shape, could suddenly have this nebulous disease that ended my career.
I became involved with the Oregon Chapter and have met many people who are profoundly impacted by this disease. I'm incredibly inspired by how they handle living with MS, especially emotionally. I've learned that you are not defined by what happens to you but by how you adapt to it. I am also inspired to grow and adapt by my wonderful son, Ian. There are four things that I would tell any newly diagnosed person: get on a disease modifying drug, listen to your body, live your life, and reach out and meet others who are newly diagnosed.
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Roll with It
Raemi Thomas, California
Once we found out that my mom had MS, my family signed up for a MS newsletter, and I read more about it. I know that MS sometimes causes symptoms like people's hands shaking and people having to use walkers or wheelchairs. I also know that MS affects the brain and nerves. When my mom was diagnosed, I didn't feel different from any other kid. At that time, she could still walk, so I didn't think it was abnormal. She would have her friends from the National MS Society over to our house, and once I even drew a picture of them all together.
This might sound funny, but I really like going to the mall with my mom. Now that she uses a power chair, I can put my shopping bags on the back of her chair, and we can just zoom along. There is so much I like to do with my mom. After school, I like to put on my skates, and she and I, we'll just roll.
If I had a friend whose mom or dad was just diagnosed with MS, I would tell her that it is nothing big to worry about and that everything is going to be all right.
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Stay Positive
Beverly Overton, California
I was diagnosed with MS in 2000, but I experienced MS-related symptoms for 20 years before my actual diagnosis. After I was told I might have MS, I joined several of the Southern California Chapter's support groups. I presently attend two groups in Pasadena and one in Long Beach.
In 2001, I became a pioneering member of the UCLA MS Achievement Center, which offers physical fitness classes, counseling, and medical services. I now serve on the Advisory Board. I've gotten a lot of people involved-several years ago, I was an Angel Visitor for a friend with MS who passed away. I currently volunteer as a peer counselor for those who are newly diagnosed, and I also participate in the MS Walk each year. Last year, my team was one of the top event fundraisers.
I have three children and a husband. I live a wonderful and happy life, despite having MS. If I were to give advice to a newly diagnosed person, I would tell them to find the correct medications, get information about MS from the Society, and find ways to sustain their emotional wellness. It's hard not to get depressed after being diagnosed with MS, but it's really important to find ways to stay happy.
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Find (and Give) Support
Alyssa Mazur, California
When I found out I had MS, I was sitting with my mom on a hospital bed at UCLA. I had just had an MRI. A troop of doctors came in and told me the news. When I got home, I cried. My uncle was the first person in my family to get involved with the National MS Society. Then I started attending a support group through the Society. My friend and I are now trying to start our own support group for people in their 20s with MS.
Living with MS has made me more conscious of my limits. I now know my body really well. I have resolved that I am not going to let this disease take over who I am. I'm doing what I want to do with my life, even though I have MS. Right now, my top priority is finishing my degree in sociology at California State University, Northridge. I plan to use my education to work with youth and families.
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Live Well with MS
Carole Bender, California
I had my first noticeable symptoms of MS in July 2004. I had tingling in my legs and feet. I also had strong burning sensations in my feet—like they were on fire. After being referred to a general neurologist, I had an MRI that revealed two small lesions. In February of 2005, I was diagnosed with MS.
I had a mixed reaction to my diagnosis. I was upset that I had MS—the diagnosis I feared most—but I was also relieved to finally receive a definitive answer. I started educating myself about MS and began the treatments my doctor recommended. I attended an intensive program at an MS center, where I developed the skills that I needed to live with my MS.
I am inspired by the many people living with MS. I've learned that MS is a part of me, but it does not define who I am. I urge others who are diagnosed with MS to educate themselves about it, find a neurologist who specializes in MS, become active in your local MS Society chapter, and surround yourself with positive people.
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Enjoy Every Moment of Your Life
Chris Grubbich, California
I was diagnosed with MS when I was 22 years old. I didn't know what MS was, so I went to the library and started researching; I didn't like what I found. The diagnosis scared me. After a year or so, my MS symptoms increased, and my disease began interfering with my life. I now use a cane when I walk and a scooter for long distances.
Living with MS means that I must enjoy each minute of every day and not sit around feeling sorry for myself. I am encouraged every day by my awesome four-year-old son and my loving wife. Both my son and my wife give me strength just by being there for me and loving me for who I am. There are times when I wish I didn't have MS, but I am determined to do whatever I can. With MS, you can't stop living; you have to enjoy every moment of your life.
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Keep Moving On
Tahirah Falah, Nevada
I was diagnosed with MS in 2004 after having symptoms for several years. So much has changed since then. I got married in 2005, and I gave birth to a healthy baby boy in November 2006.
I would tell anyone newly diagnosed not to panic. Take it all in stride and learn as much as you can about MS. Know that things will change and that you'll have to adapt and learn new ways of doing simple tasks. I've learned that life moves on if you let it, so don't let MS stop you. Keep moving on!
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Uplifted Through Volunteering
Kim Phillips, California
I've been living with MS for 20 years, and the time has gone by fast. It's been horrible, but having MS has made my relationships with family and friends much richer.
When I was first diagnosed, I focused on doing everything I could to minimize the disease's impact on my life. I was living in New York City, so I started attending the New York City Chapter's support group for young professionals for more help. When you learn that you have MS, you can and should have a tiny pity party for yourself, but then you have to move on and get aggressive about your treatment.
Now I live in Santa Barbara, California, and I love volunteering at the Southern California Chapter's MS Walks and Bike Rides. It's uplifting to be at those events and to see all of the people doing something to make a difference. I encourage everyone I know to participate or volunteer. Even thinking about my experiences volunteering makes me smile.
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Life with MS Can Still Be a Gift
Dr. Elizabeth H. Morrison, MD, MSED, California
I received my MS diagnosis in 2001, although I've had symptoms since the 1980s. At first the diagnosis shocked and scared me. In the course of learning about my disease, I was inspired to complete an MS fellowship and to devote my medical career to MS.
When I was first diagnosed, a colleague who did not have MS told me that MS would be a gift in my life. No doubt the remark was kindly meant, but it definitely irritated me at the time! Looking back, I realize that there is some truth in it. Although MS presents many challenges, we also gain opportunities for personal growth when we learn to live with chronic illness. I would encourage someone who is newly diagnosed to reach out for help, to get involved with the National MS Society, and to hang in there while going through the invariably rocky time of adjusting to the diagnosis and to the changes that MS may entail. After those adjustment periods pass—and they invariably do—life with MS can still be a gift.
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Push Yourself to Heal
Luis Castaneda, California
I started to notice symptoms of MS in 2005 when I was dealing with a family crisis. I thought it was just stress. However, my symptoms intensified, and I was diagnosed with MS in February 2006.
The most important thing I did to cope with my diagnosis both physically and mentally was to cycle. I had been an avid bicyclist before my diagnosis, and even though I experienced a lot of MS-related pain, I continued to push myself to ride. It's a way of healing for me.
My mother just told me that my cousin was diagnosed with MS, so I have been thinking of what to tell her. I think I would tell her (and others who are newly diagnosed) that she should make MS her own personal challenge and look for the positive changes that living with MS brings.
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Living With The Unknown
Kimberly Johnson, California
After three MRIs, a spinal tap, and three doctors, I was diagnosed with MS in May 2000. At first, I felt scared and vulnerable, but then I learned that living with MS means being flexible and living in the moment. It means allowing myself to reprioritize and being able to say "no." It means conserving energy and saving for the future. Living with MS is constantly living with the unknown.
My daughter inspires me, and my husband encourages me. My daughter is two and appreciates the simplest things, like flowers and the moon. She helps me to keep it simple and live in the moment. My husband encourages me to explore new ideas to keep my mind and spirit up.
You have to take life with MS one day at a time. The first step is to educate yourself about the illness and medical options, then put together a medical team that you are confident in. Reach out to MS support groups to assist with the many questions you may have. Most importantly, be gentle and do something special for you.
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I Love Who I Am Becoming
Erinn Milner, California
MS has not stopped me! I graduated from business school in 1997, even though when I signed for my cap and gown, I couldn't see the signature line. I worked for several years, and then I went on disability. Now, I volunteer as a peer advisor for the Southern California Chapter of the National MS Society, take community classes (including acting and writing), journal, go to seminars, and attend the Marilyn Hilton MS Achievement Center each week to do fitness, yoga, and therapy. I am very close to my family and friends, all of whom I could not do without.
The downside in my story is the relapses I've experienced as a relapsing-remitting MSer. Multiple sclerosis has made life more challenging and VERY scary at times, but now I appreciate many things that I took for granted, like breathing, walking, and talking. I am not glad that I have multiple sclerosis, but it did stop me from ignoring my "self." I love who I am becoming.
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Have Faith in a Cure
Geoffrey Gee, California
I was diagnosed with MS about 21 years ago. Prior to my diagnosis, I had a bad fall. I went to UCLA to seek medical treatment. The doctor looked at the way I was walking and he knew almost immediately that I had MS. I had an MRI and was diagnosed with MS, the progressive type. I am very lucky because I have no active lesions, and the only symptom I have is a limp in my right leg.
I have been involved with the National MS Society as a donor, and I have also done some consulting work for the Southern California Chapter. If you are newly diagnosed with MS, it is important to have faith in your medical advisors. Believe that the National MS Society will find a cure or will at least make the disease more livable. Look on the bright side of life and get on with it. Every new day is the first day of the rest of your life.
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Focus On the Positive
Jo Bair, California
I didn't know much about MS before my diagnosis. I began experiencing symptoms while I was living in Japan during 2005. I lost my vision. It was very scary having these symptoms in a foreign country, where MS is not as common as it is in the U.S. and Europe. However, I had a great neurologist who diagnosed me and started me on drug treatments.
In retrospect, I think that I had been experiencing more mild symptoms for many years, such as numbness and tingling sensations in my limbs. After reading about another person's diagnosis, I thought that I could have MS. However, when I spoke to my physician about this, she dismissed my concerns.
I moved back to Los Angeles in June 2005 and subsequently contacted the Southern California Chapter about support groups and insurance coverage. I participated in one telephone support group. I have also participated in two MS Walks. This year, I am forming my own team. I also really enjoyed being in the public service announcement video. Being involved with the Society has showed me that I am not alone and has also provided guidance in certain aspects of living with MS.
If I were to give advice to someone newly diagnosed, I would tell that person not to research everything about the disease, because that can be very overwhelming and scary. I would also tell that person to make a list of the positive things in his or her life at the moment, because I believe this exercise often reveals that the positives still outnumber the negatives.
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In Memory of My Father
Jody Roberts, California
My father was diagnosed with MS when I was six. Learning about the disease made it easier for me to cope. In turn, this education led to my career as a medical researcher. Not satisfied to only research the disease, I decided to be more hands-on. I've served as team captain for an MS150 Bay to Bay Bike Tour for five years. I also participate in the annual MS Walk in San Diego. In 2005, I was voted an MS Leader of Hope by the National MS Society, which was one of the greatest honors of my life. Staying involved with the MS movement is important to keep my father's memory alive and keep fighting for those who still have the disease.
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Hope Is My Favorite Word
Bonnie Iglesias, Oregon
When I was first diagnosed with MS, I went to the Society to get more information about the disease and services available. I first volunteered at the MS Walk, and I also volunteered for the Bike Ride for six years. Last year, I rode tandem in the MS Bike Ride with my brother, Chris Crawford. We rode 17 miles. We plan to ride again this year; Chris is pushing for us to do 20 miles. Getting involved gives me hope to fight. Joining the movement gives me hope-hope that a cure will be found, so my grandchildren won't have to live with MS. Hope is my favorite word.
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Through Communication, the Healing Begins
Ann Marie Johnson, New York
I began attending MS support groups in Brooklyn after I was diagnosed. I have participated in the MS Walks since I was diagnosed, and I volunteer as a peer counselor. And I contributed to the October-November 2006 InsideMS feature story, The African-American Experience of MS. If I could tell a newly diagnosed person just one thing, it would be, 'You are not alone. Through communication the healing begins. Just reach out, talk and connect.'
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Taking Action
Scott Hanson, Wisconsin
My participation in the movement to end MS is keeping me healthier. When I tell people that I've lived with MS for almost 10 years, some are in disbelief. They don't understand the symptoms they can't see: they don't know about my headaches or left hand's persistent numbness or what happens when my body temperature rises. I attended our State Chapter's first Legislative Affairs Day, and working with others to end MS helps sustain my involvement. I've attended various Circle of Hope Groups in Wisconsin to encourage and inspire others to share their strength and stories with others to build the political will to fund programs to end MS.
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It Feels Good to Help Others
Kelsey Krueger, Minnesota
My dad was diagnosed when I was really young (in preschool). I'm 13 now. I've raised more than $11,000 for the Society through book fairs, poster contests, mini bike rides, and most recently an art contest called the Kelsey Cause Art Project. The events are a lot of fun. It makes me happy inside to know that I'm working to find a cure for MS to help my dad and other people like him. A lot of my friends have helped with events. We have fun, and we feel good about what we're doing.
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Great Changes Begin with Us
Chris Armistead, Georgia
I was diagnosed with MS when I was 25. One of the first events I was involved in was the 2005 MSWalk. I became a member of the Georgia Chapter's Government Relations Committee and attended the 2006 Public Policy Conference in Washington, D.C. Joining the movement means camaraderie. Joining the movement is a good way to realize that you're not alone. Joining the movement shows that you have chosen to not be a victim of this disease but have chosen to make MS your victim. Joining the movement reminds all of us to not give up. It is such a great time to join; up to this point, the Society has made so much progress, and with our help, they can do so much more. Don't give up.
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Everyone Can Make a Difference
Chris Crawford, California
My sister, Bonnie Iglesias, was diagnosed with MS, so I decided to donate to a friend who was riding in the MS Bike Ride. I told her about my sister, and she told me I should get involved by actually riding in the MS Bike Ride. I've been riding for seven years now. I feel like I'm making a difference, and I have learned what a huge impact one person can make. I also enjoy teaching my two children how to be actively involved in a cause versus taking the more passive road of just writing a check. It's been an amazing experience.
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Volunteering Truly Makes a Difference
Cheryl Chatman, Florida
I learned about the Society more than 16 years ago, after I was diagnosed. I first became involved with the North Florida Chapter as a volunteer; I would go into the office and do anything that needed to get done. For the past few years, I have been the captain of an MS Walk Team, and my husband, Len, and I ride a tandem bicycle in the MS Bike Ride each year. Along with actively raising money through these events to help fund the important research to find a cure, I volunteer as a peer counselor to help others living with this disease. My husband and I travel often to do our program, "The Art of Living with MS," which teaches people with MS and their families how to cope. It has taken me to another level. I am on a high. The hope to find a cure lies in everyone, and I believe that we will find a cure during my lifetime.
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Push the Limits
Joy Wagner, Illinois
I first learned about the National MS Society when my brother was diagnosed in 2000. I was diagnosed in 2001. I've participated in three MS Walks and in Slugfest, a baseball fundraising event. I advise people with MS online and at support groups. As an MS nurse, I help MS patients manage their injections. I also founded fitMS, an innovative healthy lifestyle program for people with MS and other conditions that cause similar symptoms. I'm inspired by my kids and by the changes I see in MSers. My advice to you is to push the limits, never stop asking questions, and don't accept anything—fight.
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Teamwork Is the Key
Dr. Lily Jung, MD, MMM, FAAN, Washington
The first patient I saw in my neuro rotation as a medical student was an MS patient. I was overwhelmed by the disability this patient had. Twenty years later, we have many therapeutic options. Most of the patients that I diagnose now with MS can expect to lead essentially normal lives, and that's what we aim for when we discuss therapy options. That's what makes taking care of MS patients so exciting for me. My patients and their partners and I become a team—we plan the course of action together. We rejoice together when they do well; we roll up our sleeves and grit our teeth when things get rough. MS patients are also so incredibly brave. They take risks because they want a better life. I have so much admiration for them because of how courageous they are. Similarly, my work with National MS Society is incredibly rewarding. When I see my patients I remind them of the services that the Society offers. I tell my patients who are newly diagnosed that if they were going to get this disease, this is the best time in history to do it—we have so much more to offer them than we did in the past.
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