About MSAA

The Multiple Sclerosis Association of America (MSAA) is a national nonprofit organization and leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a Helpline with trained specialists; award-winning publications, including, The Motivator; MSAA’s nationally recognized website, featuring educational videos, webinars, and research updates; a mobile phone app, My MS Manager™; safety and mobility equipment products; cooling accessories for heat-sensitive individuals; MRI funding; My MSAA Community, a peer-to-peer online support forum; MS Conversations blog; a clinical trial search tool; podcasts; and more. For additional information, please visit www.mymsaa.org or call (800) 532-7667.

The 2016 MS Research Update Available Now From MSAA

Posted on May 25, 2016 by MSAA

The 2016 edition of MSAA’s MS Research Update provides a comprehensive overview of research findings on many experimental drugs currently under investigation for the long-term treatment of multiple sclerosis. Also included are new clinical trial data on some of the currently approved disease-modifying therapies, as well as directions for future research in areas such as stem-cell research, biomarkers, genetic studies, and gut microbiota.

In addition to the exciting research aimed at relapsing forms of MS, several studies are also looking into the treatment of progressive forms of MS. To assist individuals interested in learning more, trials with progressive forms of MS have been highlighted in bold for quick identification.

This year’s MS Research Update has been published jointly by the Multiple Sclerosis Association of America (MSAA), the Consortium of Multiple Sclerosis Centers (CMSC), and the International Organization of MS Nurses (IOMSN). MSAA greatly appreciates the support from the CMSC and IOMSN to assist with the production of this publication.

Read MSAA’s latest MS Research Update here

Note to Self: What I Would Tell the Newly Diagnosed Me About MS

Posted on May 23, 2016 by MSAA

By Jeri Burtchell

Driving along a rural stretch of two lane highway in north Florida, the sun beamed down in the most cheerful way. I pulled off the road and parked in a spot with woods on either side. I got out of the car and sat on the hood, burying my face in my hands. The cheerful chirping of the birds contrasted sharply with my deep, mournful sobs.

I’d just come from my Second Opinion where a doctor had smiled at me, saying, “Yep! You definitely have MS,” before heading out the door to casually change the next life down the hall forever.

So here I was, alone in the woods on a gorgeous day. How could nature be so happy when I was so devastated?

After a good cry I got in the car and headed home to share the news with my family, and try to wrap my brain around the idea of “forever”.

Being newly diagnosed – especially in 1999 when the internet and social media weren’t even on my radar – was a very scary and lonely time.

Drawing by Jeri Burtchell

It’s been going on two decades since that day, and if I could go back in time and send a letter by carrier pigeon to the woman sitting on that car hood, here is what it would say:

Dear Newly Diagnosed Me,

I know you’re terrified, but trust me, I’ve learned a lot since then. You’re sitting here crying now, but so much will happen in the next 17 years you wouldn’t believe me if I told you. I don’t have time to explain, but I’ve written these tips to help you get through. You have to trust me on this…

You won’t have to do shots forever. At that time there were only 4 therapies (all shots) to choose from. I was terrified of needles and often skipped shots because of it.

Take charge of your health. There were many things I changed gradually after diagnosis—I quit smoking, started eating better and getting more rest. It made a difference in how I felt.

Don’t let one bad day—or month—keep you down. It’s hard to believe things will get better when you’re in the middle of an MS relapse. Hang in there, though.

Build your own medical team. My newly diagnosed self didn’t know that there are MS “specialists” who know more than a regular neurologist. I also didn’t know to stand up for myself and ask questions. On the advice of my first neurologist, I stayed on a therapy for 8 years that wasn’t working for me. When I finally decided to switch doctors, that’s when I learned about other options and found something that keeps my MS in check. So pick your medical team. Choose your specialists and your primary care doctor based on how well they communicate, how open they are to helping you explore your options, and how much you trust them. Never feel afraid to question them or get second opinions.

Explore your options. Besides the available treatments and therapies, find out about cutting edge research. There is so much going on right now in MS research there might be an opportunity to help bring a new breakthrough drug or device to market – and you’ll be among the first to benefit. Talk to your doctor or learn more on sites like MSAA.

Discover others and network. Not only does misery love company, but you can learn so much by finding others who “get it”. No need explaining how exhausted you are by fatigue, or what that crazy zapping feeling is when you bend your neck. There are people out there who know exactly what you’re going through. Network with them to learn about MS, to find out what MS clinics or doctors are awesome, tricks for getting symptom relief and more. Search Facebook for groups to join or find others by doing a Google search of multiple sclerosis support groups.

There’s no need to feel alone. There’s no reason to let fear of the unknown take over. Get involved, learn all you can, meet others, volunteer, and just keep plugging away at living the best life you can. Things will get better. I promise.

Love,

Your Future Self

Oh yeah, PS: Don’t wait so long to cut your hair. You really look a lot better now. 🙂

*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.

Dear Newly Diagnosed

Posted on May 20, 2016 by MSAA

By Lisa Scroggins

This should have been easy for me to write. My topic is coping with getting a diagnosis of MS (multiple sclerosis). Mine occurred quite a while ago, and that is why I believe it’s been somewhat difficult to write about. Not from lack of memory, nor lack of interest. So much has changed since I received a diagnosis, that at first, I thought, there are treatments now – not so when I was diagnosed. There is so much information available on the internet now, yet when I was desperate for information, that now well-traveled virtual highway was known only to a handful of adventurous folks; that is, not to you and me. I was limited to what I could find at my local library, which was paltry, at best.

Then it came to me: the same technology that has made instant communication possible, that has transformed the world, truly, is not all lollipops and gumdrops. If I were speaking to someone newly diagnosed, I think one of the first things I would say is that he/she should tread lightly in cyberspace.

Over the past few years, I have participated in a few Facebook groups organized by people with MS. I didn’t participate in some of them for long, however. It’s pretty astonishing how many people seem to use Facebook as their “go to,” for lots of things. Apparently, a fair number of MS patients fall into this group. If the information found were always correct and/or helpful, this might not be so bad. But as some of you reading this have learned, some of the information found via social media and the internet is undoubtedly anything but accurate or helpful. It’s true, just as in the bad old days, that misinformation and the “awfulizing” of MS still live large.

More important than being wary of social media or things that friends and acquaintances might say to you about this recalcitrant disease, do not take as medical gospel much of what you read on the internet. Not only do you have to consider the source, you also have to realize that MS is just as unique as is your very own fingerprint. No two people have the exact same symptoms, nor do they have the same disease course. In my experience, well-known websites staffed by bona fide medical people generally give a, well, general description of MS. There are still so many unknowns about MS that despite as many as 13 FDA-approved therapies for MS, scientists still seem to struggle with which people should get this drug, and who should get that drug. Efforts are underway to figure out how to personalize the drugs (and not only for MS), but that strategy is in its infancy.

Sadly, there are still some neurologists out there who either have a hopeless attitude about MS, or their bedside manner is atrocious. Both can be devastating for you, dear newly diagnosed person. I started to write “dear newly diagnosed YOUNG person,” but since in the past 10 years or so, I’ve known quite a few people who were diagnosed in their 40s or 50s, and even one man who was past 60 years of age when diagnosed, to assume that all newbies to the helter-skelter world of MS are young would be a grave mistake. I am nothing more than a layperson with no special medical training, and yet, my strongest advice to those just setting out on this journey would be that you must be your own advocate. I know! That’s not what you feel like hearing, and you may even resent me for saying it. But trust me, nobody cares more about what happens to you and your body than you do.

As you seek information about MS, you will come upon some that is heart-breaking. You will probably see and hear about people who have had a miserable course. I remember when I tried to avoid those people. It wasn’t because I thought it was contagious, but it was because I didn’t want to hear them as they railed against the unfairness that is at the heart of MS. I must hasten to add that even though I said I avoided “those people,” that isn’t an accurate assessment of what happened. I knew one woman in the first year after I was diagnosed, who was the leader of an MS support group for the newly diagnosed, and she used a scooter. She was such a kind person, a real leader in all the meaning of that word, that I don’t believe any of us looked at her in the scooter and ran for the hills. She offered resources when she could, but she listened, she sympathized, she even shared a couple of times when she cried. But she ultimately was there for us, and we knew it. Nobody else could have understood so well what the deepest fears of every one of us were. Other groups in which I’ve participated consisted mostly of a lot of complaining about the difficulties of having MS, and those, my friends, are legion. You may already have experienced some of those. If so, then right now, please do whatever you have to, to keep your sanity. I remember soon after getting the diagnosis, my family and I were on a cross-country trip, and we were about to enter a long tunnel. I had a sudden thought and was terrified that when we came out of the tunnel, I might be blind. That didn’t happen. As far as I know, nobody has something that happens THAT rapidly. Take a deep breath. You don’t have to get everything figured out today, or tomorrow, or next week.

One more point about finding information about MS on the internet. Along with great strides in therapies for MS, there have been many that fall in the realm of CAM, or complementary, alternative and integrative health measures you may try. In this area you may find some relief. You also may find some very strident people who insist that you must never eat X, or always eat Y, or maybe if you do THIS, but stop doing THAT, you will be cured. Read, research, try to vet the proponent of the ideas you consider. Talk to your doctor about it. There are those who stand to profit from banking on your fears. The truth is, that at this very point in your life when you likely are feeling the most vulnerable ever, you will be called to muster up your best intelligence-gathering efforts, and your ability to discern what makes sense and seems likely to benefit you. You can rise to this challenge. And you will probably be called to do so again and again. A better way of describing what you need to do is to be ever vigilant, ever on the quest, but always remain hopeful.

The Monster’s Identity Revealed

Posted on May 18, 2016 by MSAA

By Lauren Kovacs

I was only 16 and the MS monster tried out its first attack. Optic Neuritis was the flavor it chose for nine months. At the age of 21, the monster awoke again. Numb from the neck down and several bewildered university sports medicine doctors pushed me to seek help from another doctor.

The doctor told me it was a stroke, gave me muscle relaxers, and sent me back to campus. Being a pretty smart college student, I knew muscle relaxers and a stroke were not the answers.

I went and saw our old neighbor, also a family doctor. I was directed back to the neurologist from my optic neuritis days. I was not sure how my eyeball related to my numb legs.

After tests, he said it was MS. The monster had revealed its identity. He said not to research it. I was only 21 and I was not going to research it?

The university library became my new home. Because you could not see it, many of my teammates accused me of faking it to miss our long practices. I sat day after day watching my team practice for UCA Nationals without me. Still confused, I just kept reading books about MS. The internet was still new.

Now, I read anything and everything MS related. I read about alternative therapies. I visit blogs. Prayer is also still a big shield.

I write down new drugs I am taking. I keep track of side effects. I write down how new medicine makes me feel. I take charge of the MS. I am the boss.

I had to change doctors because, after five years on one treatment, it was the only way for me to change medicines. Another one, I swear, made me feel like I was making it up. You are in charge. After five neurologists, I finally found a great one. She works with me instead of feeling like I was sent to the principal’s office.

Wheelchairs, walkers, and leg braces are part of me. The internet has been the new library. I read about suggestions on everything, not always MS related. No MS topic is off limits or embarrassing either. If there is a short cut to anything, I try it.

Reading and taking charge are ways I keep the MS monster calm. I have days where I cry a lot, but chocolate is my cure. I don’t let MS rule my life. Even if I am unsure about a medication, I talk to my doctor openly about it.

Coping With the Diagnosis of Multiple Sclerosis

Posted on May 16, 2016 by MSAA

By Meagan Freeman

Hypervigilance: “Abnormally increased responsiveness to stimuli, and scanning of the environment for threats.” (The Free Dictionary, 2014.)

The longer I live with the diagnosis of MS, the more convinced I become that the most difficult and life-altering consequence of this disease is my constant awareness of its existence. I have relapsing-remitting MS, and the very essence of my disease involves periods of relapse, with severe symptoms that affect my entire world, followed inexplicably by periods of near remission.

This is something we slowly learn to live with, this uncertainty, but it never becomes normal. It is almost like being robbed of our innocence, our ability to feel at ease is taken forever. Even in periods of relative remission, we are followed by a dark cloud of uncertainty.

This state of alertness is designed to protect us from threats and danger, and it serves a much-needed purpose in those situations. When we are in an acutely dangerous environment, we must have the ability to respond. Our heart rates increase, our respiratory rate increases, our blood pressure rises, and our pupils dilate to allow us to respond to the impending destructive force headed our way.

What happens when we are in this state of alertness and vigilance for an extended period of time? In the case of multiple sclerosis, we are in this state for the rest of our lives.. Never again (without an absolute cure) will we feel utterly at ease.

Extended periods of hypervigilance will eventually lead to secondary problems. The main issues become anxiety, insomnia, fatigue, and social withdrawal/seclusion. Many MS patients begin to withdraw from normal social circles, becoming so overly-focused on the disease in exchange for formally enjoyable activities. This experience can be even more devastating than the physical symptoms.

In my own life, I found that I would wake up in that early morning haze, just barely conscious from my sleep, feeling peaceful from my last dream, and immediately upon opening my eyes it was as if a voice would scream into my ear: “YOU HAVE MS!!!!!”

I would feel my heart start to race, I would sit upright, and the crushing blow of diagnosis would sink in yet again. This experience repeated itself daily for the first couple of years post diagnosis. It was very hard for me to communicate this experience to anyone I knew. I had no close friends with MS, and I did not believe my family would understand.

Soon, I became obsessed with scanning my sensory experiences, looking for a new symptom. Each day, there was something new. A new buzzing sensation, a new numb area, a new area of skin that felt “sunburned” and painful, and several times, new onset of blurry and dim vision. I have lost much of my vision in the last 5 years. I went from having 20/20 vision 5 years ago, to 200/100 today due to repeated bouts with optic neuritis.

When we live with daily fear of new deficits, we change. That feeling of “what new symptom will I wake up with tomorrow?” How do you live your life? How do you plan your work? Your children’s activities? Your driving? Many of us like to carry on like brave soldiers, but in the end it is sometimes better to plan for the worst and be happy if it isn’t that bad after all.

Here is the good news: You can learn to manage this issue. If you find yourself staying home rather than enjoying your normal activities, losing sleep worrying about MS, feeling tremendous anxiety, or any other life-altering symptom, get help. Sometimes it is as simple as finding the right support group. Sometimes, individual or group counseling is helpful. The point is, don’t just suffer alone needlessly. And most importantly: Don’t feel like you are “crazy.” You aren’t!

Sometimes, I just want to hear reality, don’t you? I want to hear that I am not insane, that this experience is real, and that others are going through similar experiences. Connecting through mutual struggle is something I find incredibly necessary in the case of any chronic condition, especially MS. I am hopeful that my sharing of my own experience will help someone out there having a particularly difficult day. Reach out, because you are most definitely not alone in your experience.

*Meagan Freeman was diagnosed with RRMS in 2009, at the age of 34, in the midst of her graduate education. She is a Family Nurse Practitioner in Northern California, and is raising her 6 children (ranging from 6–17 years of age) with her husband, Wayne. She has been involved in healthcare since the age of 19, working as an Emergency Medical Technician, an Emergency Room RN, and now a Nurse Practitioner. Writing has always been her passion, and she is now able to spend more time blogging and raising MS awareness. She guest blogs for Race to Erase MS, Modern Day MS, and now MSAA. Please visit her at: http://www.motherhoodandmultiplesclerosis.com.

Coping With an MS Diagnosis And What Helped Me

Posted on May 11, 2016 by MSAA

By: Stacie Prada

Everything can feel urgent when you’ve just been diagnosed with an incurable disease. Remember that you’ve likely had MS for years. You may have increased symptoms and be in the midst of an exacerbation, and you don’t know if your symptoms will dissipate or be your new reality. My advice is to try to relax. I know, it’s easier said than done.

I remember the pervasive fear I had of not knowing if what I was doing was unknowingly worsening my MS. Wondering how I was going to learn to live with MS and what my future now held overwhelmed me. The lack of control over my body rattled me. It felt like I’d been sucker punched. While I looked the same on the outside, my waking thoughts were now consumed with, “I have MS.”

Coping with an MS diagnosis is a lonely experience, and I can’t think of any other life lesson that prepares you for it. When I was diagnosed with MS, I’d already lived through and recovered from a 110 mile per hour impact car accident, I’d lost my mother in a plane accident, I’d experienced and healed from family drama and trauma that affected me deeply. And yet, being diagnosed with MS required me to pursue healing in a new way. The threat was within me, and it wasn’t a one-time event. This was something that would continue and likely progress. I lost all sense of control and the stability of feeling like I could trust my body. My mantra became, “I don’t know how I’ll learn to live with this, but it will happen.”

My path to making sense of things and being at ease with them will differ from others. All I can share is what I see in hindsight helped me and what I use today to maintain my health and sanity.

If you’re able to, find a counselor you like and see them regularly until you feel like you’ve found some stability. My thought process at the time of diagnosis was that I wanted to have a counselor on deck that knew me and would be available if I needed them in the future. The person I saw validated my feelings, allowed me to vent on things that might have injured relationships if shared with the people involved, and helped me cope with a huge life shift. I can’t stress enough that the counselor needs to be a person you trust and feel comfortable with. Don’t push it. If it doesn’t feel right, find someone else.
Look to people with attitudes about adversity that inspire you. For me, two exceptional people who gave me hope were Kris Carr and Cami Walker. Kris Carr has successfully lived with Stage IV liver cancer, used diet and attitude to keep progression at bay, and was living a full, productive life. Cami Walker wrote the book, “29 Gifts,” and describes how she found a way to accept MS and see her value in life through giving.
Non-profit groups like MSAA provide a wealth of information on MS symptoms, treatments, and medications. Search their site for specific symptoms you’re experiencing, and try the suggestions that fit with your lifestyle.
Patients Like Me, patientslikeme.com, is a site that allows you to create a profile and track your symptoms and have access to other people with MS in an anonymous format. This site is terrific for learning about other people’s experiences with medications, knowing methods for their success in treating symptoms, and tracking your own health. Entering medications, symptoms, exacerbations, and general health information is invaluable for monitoring my own health. It’s important to know that this information is used to help researchers try to further the understanding of diseases, assist in treatments, and hopefully find cures. Some people aren’t comfortable sharing this information, but I’ve found it to be useful and confidential in my experience.
Local MS Self-Help groups are a tremendous resource for building relationships and sharing information. These groups involve meeting people who have experienced my challenges and can share their advice. While the information they provide is helpful, I find that meeting people who have lived through the challenges I’m facing and thrived despite symptoms that scare the heck out of me is a huge benefit beyond the suggestions and advice. These people inspire me and reduce the fear I have for potential disability. They provide an understanding ear when I need to talk, they encourage me when I’m nervous, and they share the humor in living with MS.
Facebook groups that focus on people with MS are a more recent addition to my ongoing education and inspiration since they didn’t exist when I was diagnosed. These groups may be public or require you to be added to a closed group. Join to the level that you’re comfortable and that won’t jeopardize your career.
Accept that you’ll likely need a medical team, not just one doctor. In addition to your primary care physician and MS neurologist, it’s helpful to have additional specialists available. When you’re newly diagnosed, you don’t need to fill out the team immediately. Just know that one provider isn’t going to be an expert on every issue you’re experiencing, and they won’t be able to help in every instance. When your neurologist or primary doctor can’t help you with something, consider adding people with expertise in other areas like a physical therapist, counselor, naturopath, or urologist. Tell every provider you see about every issue you’re having. I’ve been pleasantly surprised when my physical therapist was able to solve issues I thought my neurologist would solve but couldn’t.

Be cautious when interacting with people who have MS such as in groups like Patients Like Me and Facebook, and try not to take it personally when people are harsh or say something that feels hurtful. It helps me to remember that other people in these groups are struggling, may be experiencing depression, and may just have terrible communication skills. None of these resources and sources of support will fill every need I have in dealing with my MS. It’s helpful to learn which ones help me in different circumstances depending on my mood and needs.

Overall I don’t expect everyone in my life to understand what I’m going through. Instead I have a menu of resources and a list of people I turn to for support depending on the issue. It’s taken years to create this list, and I keep adding to it.

I realize that my suggestions may be overwhelming. I’ve only taken on one thing at a time since my MS diagnosis. I’ve read suggestions and followed what made sense at the time given my biggest issue. I also discard comments or things I read that don’t fit with my experience.

Other than increased numbness, fatigue and clumsiness, the only thing that changed immediately after my diagnosis was that I knew what was causing my symptoms. It helped me to remember that my health hadn’t changed; only my knowledge of it had. It took me time to learn what helped me, and giving myself permission to take time to adjust helped ease the stress.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38. Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

Mothering Through MS

Posted on May 6, 2016 by MSAA

By: Meagan Freeman

How will my children remember me?

Isn’t that a question every parent asks? We want to set the best example for our kids, leaving a legacy behind when we are gone. Often, this is one of the main reasons people choose to become parents in the first place. One of the first fears in the minds of parents who are diagnosed with MS is: “How will this disease affect my ability to parent?” Followed soon by, “Will my young children remember me when I was healthy?” MS often strikes in the prime of adulthood, when most people are finally successful in a career, finally married, or starting new families. This is the cruelest aspect of this illness, the theft of young optimism. We want our children to recall these years of health, vitality, energy and strength. We want them to remember vacations, playing ball, swimming, and dancing with us. We want them to remember us as young, beautiful adults who never failed them; however, illness interferes with that image, and creates an image of inability and dependence.

Mothers with MS face an incredible challenge, coping with an incurable illness while tending to the needs of little ones, putting the needs of others before their own. In my own family, I witnessed the strength and perseverance of two mothers, facing incredible odds, refusing to give up no matter how difficult life got. MS was no match for these incredible women I am referring to, my grandmother Bette, and her daughter Susan, who happens to be my own mother. My grandmother was diagnosed with MS in the 1950s, and she had 7 children at the time. As a child of 5 or 6, I have vivid memories of visiting the home of my grandparents. We spent many holidays there, the home where my mother and her 6 siblings grew up. My grandfather Stan was the breadwinner, and my grandmother Bette struggled while trying to raise her children. She had been diagnosed with multiple sclerosis in the 1950s, when there were no treatments available. She was basically told to “get in bed and stay there.” Faith, love, and hope were the keys to their success, and my grandparents were a living example of heroism and true love despite devastating life circumstances.

When I feel weak, I think of them. When I feel overwhelmed with my lot in life, I think of them. When I want to give up, cursing the universe for the bad hand I was dealt, I think of them. When I question whether truly unconditional love exists, all I need to do is recall this life story and look at their pictures. Despite MS, my grandmother dedicated her life to her children, instilling love and values that remain to this day. You see, what matters at the end is our life story, our legacy; the story that will be told to future generations. Each of us is slowly writing a story that will be told someday, and it is incredibly important that we write one that we will feel proud of.

My mother was the oldest child in her family. Due to her mother’s progressive MS, at age 12, she took over a majority of the household chores and duties, becoming a surrogate mother for the 6 younger siblings in the home. My mother needed to grow up quickly, and assume the role of a parent at a very young age. At the time, there was simply no choice. Rather than playing, my mom would cook, clean, and help younger children bathe. She sacrificed her own needs for those of her family, and she never failed in her duty. The defining characteristic of a mother is the resolve to care for her children and protect them from harm, no matter what. My mother continued to care for others when I was born, and she was the most wonderful mother anyone could have asked for; I truly don’t know how I got so lucky! She provided me with a beautiful childhood, and gave me all any child could ever need, always putting my needs before her own.

My mother set a wonderful example for me, and I try to carry that on each day. I struggle with MS daily, but despite those struggles, I can still enjoy my children. I see their innocence, their desire to see the world as a beautiful place. My goal is to continue to allow them to see things as awe-inspiring, breathtaking and amazing for as many years as possible. I try to share openly and honestly with them, letting them see certain aspects of my disease, but shielding them from others. I am fortunate to have witnessed two incredible examples of motherhood in my own family, and I think of these incredible women every day. Each mother with MS is going above and beyond, coping with physical challenges while sacrificing daily for her children. Thank you to every one of the MS moms in the world; each of you is a true hero. Thank you, Grandma Bette, and I love you, Mom! Happy Mother’s Day to all…..

Stories to Inspire: MS Client Swims for MS and More

Posted on May 2, 2016 by MSAA

By Peter Damiri

“I actually hugged my doctor when I found out I had MS,” explained Simone Sanders, 29, of Seaside, California. “After having so many symptoms for so long, I was relieved they found out what was wrong with me and that something could be done to help. But then, I was also frustrated that I had a chronic illness that had no cure.”

Simone struggled with a myriad of unexplained medical issues since her early 20s. Following the onset of several severe exacerbations, she underwent MRI testing and received the official diagnosis of multiple sclerosis.

“I lost my vision, couldn’t walk, and lost my job,” recalled Simone. “I couldn’t drive or go anywhere, wasn’t active, and became very depressed. But I found support from MSAA as well as talking with others who have MS. They pulled me out of my depression and helped me realize that I can accept my diagnosis of MS but do not have to be crippled by it.”

Now married to an Airman First Class in the United States Airforce and looking to start a family, Simone has since regained the majority of her vision and ability to walk, but still struggles with daily fatigue and a variety of periodic MS symptoms. However, rather than focusing on the negative, Simone maintains a powerful fighting spirit as she strives to improve her physical and emotional wellbeing through diet, exercise and a deep, personal commitment to help others with MS.

“I try to be as active as I can, running 5K charity races with my cooling vest from MSAA – which has been a lifesaver. I’m always looking for new ways to help the MS community and was happy to find Swim for MS,” said Simone.

“I had a passion for swimming ever since I was eight-years-old and was really good at it. After my diagnosis, it made sense to go back to swimming and exercising in the water, especially when I had access to a pool. Then when I heard about Swim for MS I said, this really fits with my interests and passion and it’s for a good cause for people like me.”

With the goals of swimming 1,000 laps in three months and raising $1,000 for MSAA, Simone began her Swim for MS challenge in late March. She bases her ambitious goal on her average swim of 10 laps per day, but also recognizes this can fluctuate due to her struggles with fatigue and other MS factors.

“Some days are really bad days and even some weeks are bad, but when I’m in the pool I know that I can push myself to do my best,” said Simone. “The coolness of the water helps keep me from being overheated and I can float to rest when needed.”

Recognizing the benefits she receives from her cool suit, Simone would like to dedicate donations from her Swim for MS fundraiser to help support MSAA’s Cooling Program as well as other vital services. She recently enlisted the support of her mother to help recruit donations from family members and plans to promote her Swim challenge to her new military family as well.

“Even though my goal is to swim 1,000 laps, I feel accomplished no matter how many I finish because in spite of everything I’ve been through, I’m still able to swim,” Simone said. “I tell myself every day to have courage and have faith. Have the courage to get up in the morning and have the faith to get through the day, and do the best you can.”

MSAA would like to thank Simone for granting us this interview, choosing to support the MS community through Swim for MS, and inspiring all of us to stay positive and keep fighting every day. To visit Simone’s webpage and support her Swim for MS challenge, please visit: http://support.mymsaa.org/goto/simoneswim. For more information on aquatic exercise and MS or how to start your own Swim for MS fundraiser, please access www.SwimForMS.org.

Simone Sanders - Copy

Meet MSAA’s Newest Guest Blogger – Lisa Scroggins

Posted on April 15, 2016 by MSAA

I am Lisa Scroggins, wife, mother, CPA. I was diagnosed in 1991, and my mother had MS. There’s more: two of my five siblings also have MS. So, obviously, I am a person with MS: a patient. I don’t like to be called an MSer. I also resist substituting different words for the letters, M and S, such as “Made Strong:” I like to think of myself as an advocate, and I have written to members of Congress on various issues. I’m currently in the process of trying to correct an inadequate parking situation in my community¹.

If I’m brutally honest with myself, I just don’t like being a disabled person, and I have hope that I can improve. Having officially stopped working because of disability, I am having an identity crisis, as well as an existential one. I know I have pretty severe limitations, which mostly have arisen in the past three to four years. There’s my first clue: it seems as though it’s very recent, but I just typed the truth: my walking ability has worsened over several years, not the one or two that I’ve been telling myself. It has been only a couple of years since I’ve worked, but it’s important to know that I experienced a life-changing series of events which have left me reeling to this day. In other words, it’s complicated.

I’ve had MS for a very long time. I’m lucky, in that for many years, my symptoms were invisible to others. Although they were always in the back of my mind, I had learned to compensate for them.

First example: I’m shopping in a Sam’s Club store. It’s a huge building, and as is typical, I’ve walked around for a while, just browsing for things that I might want to buy, when I realize that fatigue² is kicking in. I’m not prepared to check out, with all that entails: getting my payment and membership cards out, unloading my items to the conveyor belt, putting them back in my cart, storing my cards safely, but keeping my receipt ready to be checked before exiting, trekking to my car, unloading my purchases into my trunk, parking or maybe just abandoning my cart, climbing back into my car where I will rest for a few minutes, while hoping that no one is idling behind me, waiting for my parking spot—oh the pressure! Also, I’m a pretty good distance from the checkout lines, and those lines were fairly long at last glimpse. What to do? I head over to the book section. I park my cart so that hopefully, it won’t impede any other shoppers, grab a few books to peruse, and sit down on the floor to rest and look through the books. Occasionally, I get some questioning looks, but hey, you do what you have to do.

Second example: I have what’s known as a “neurogenic bladder.” Real world translation: I experience urgency, which means I have to pee now! It doesn’t matter when I’ve last relieved myself, or how much my fluid intake has been. (That commercial for an overactive bladder medication is spot-on and even cute! The bladder IS in charge and drags me where it will.) Whenever I enter a building, if I don’t already know where the bathrooms are, I focus on finding their locations. When driving, I have been known to pull over to the side of the Interstate when I couldn’t make it to the nearest restroom. The technique involves putting on my car’s flashers, exiting my car, rapidly walking over to the passenger side, opening both front and rear passenger doors to provide a modicum of privacy, grabbing a fast food napkin or two from the map storage compartment door on the front passenger side for, oh, come on, you know what it’s for (always kept stocked for emergencies such as these!), and doing the squat. There’s just no way to do this in a dignified manner. I always feel guilty for littering. The pre-MS me would never have done such a thing.

The nature of my MS has changed and its effect on me has been nothing short of dramatic. As isolating and terrifying as it is, I know there are thousands of other people going through the same thing. The need to redefine myself in this new state of existence, is a powerful one. In our culture, what we “do” defines us. I’ve been treading water for some time, trying to figure what it is that I “do” now. If it’s true that “necessity is the mother of invention,” I’m looking for some tools. Maybe we can search together.

¹ You may have thought, as I did, that the ADA fixed this stuff, but that is incorrect! An explanation in a future blog post is in the making
² Often cited as the most common and disabling symptom among people with MS.

Keeping That MS Monster Asleep

Posted on April 13, 2016 by MSAA

By: Lauren Kovac

Ah, spring is in the air. It means pollen-covered cars, sneezing, and nesting. Getting organized for the coming season is something we all want to do. Organization can help MS people feel a small sense of control.

I was extremely organized, before the MS changed that. It messed up my neatness. Actually, it was more like a tornado barreling through my nice organized piles.

I have learned to turn a blind eye, take a deep breath, and have some chocolate. However, some things cannot be left. With MS, you constantly have to learn to find alternative ways to keep the MS monster sleeping.

With three boys and constantly using my clothes for target practice, a laundry mountain cast a dark shadow on my life. Getting the basket from my bedroom to the laundry room was an obstacle course. My solution is now to push it with my walker on a plant stand with wheels.

Spring means soccer too. Games are fast, so outings are short. I get some much-needed vitamin D and adult interaction. Enjoy outside while you can. Take advantage of nice weather, before the heat comes. It is nice to enjoy the fresh air without being a bug buffet.

Interaction face to face is nice too. I love our dog, but he can’t talk back. He is not a conversationalist. He only has one sound and it sounds like barking. He will whine occasionally, if you are eating cheese. His conversations are rather one sided.

I relish my weekly therapeutic horseback riding lessons. The quiet of the farm, the green pastures, flowering trees, and even the horse poop means freedom. Swirling whirlpools of shed horsehair in the breeze means I can enjoy outside.

Once it gets hot, I embrace my inner hermit. Until then, I soak in the lovely weather, take an allergy pill, and get some rays. I like being a toasted mushroom instead of a pasty one. Sun, interaction, horses, and watching my son’s soccer games are great ways for me to keep that MS monster sleeping.

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