About MSAA

As a national nonprofit organization, the Multiple Sclerosis Association of America is a leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a toll-free Helpline; award-winning publications including a magazine, The Motivator; website featuring educational videos and research updates; S.E.A.R.C.H.™ program to assist the MS community with learning about different treatment choices; a mobile phone app, My MS Manager™; a resource database, My MS Resource Locator; equipment distribution ranging from grab bars to wheelchairs; cooling accessories for heat-sensitive individuals; educational events and activities; MRI funding and insurance advocacy; and more. For additional information, please visit http://www.mymsaa.org or call (800) 532-7667.

MSAA Motivator: Wellness in Multiple Sclerosis


MSAA’s latest edition of The Motivator features an updated design, with printed and digital versions available.

Included in this issue of The Motivator:


  • Cover Story – Wellness in MS: How good food choices, exercise, correct posture, and other lifestyle changes can have a positive influence on your overall health.
  • Up Front – MSAA’s president and CEO gives a special message to readers, reflecting on his 16 years of service to MSAA.
  • Research News – Updates on recent news items occurring since the last issue of The Motivator are featured.
  • Program Notes – MSAA’s new aquatic fitness DVD, plus My Health Insurance Guide, are both highlighted.

Throughout the month of October, aligned with the release of latest edition of The Motivator, MSAA Client Services staff and guest bloggers will continue to highlight the impact that a wellness strategy can have on an individual with MS. Discussing topics such as diet and exercise, mental health, and social wellness, we hope to continue the conversation about wellness and learn from each other’s experiences.


Highlights from MSAA’s Annual Golf Tournament

On Monday, September 28th, MSAA hosted the annual Gary Wallace Memorial Golf Tournament at Little Mill Country Club in Marlton, NJ. The golf tournament is held in memory of Gary Wallace, MSAA’s former Vice President of Finance & Administration, who devoted himself to improving the lives of people living with MS.

It was a full day of fun and friendly competition, all in the name of fulfilling MSAA’s mission of improving lives today for the entire MS community.

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We would like to thank all of our supporters, sponsors, volunteers, and everyone who came out to the event.

Thank you!!


No Routine Schedule with MS

By: Matt Cavallo 

There has been nothing routine about my schedule lately. Between traveling for work, the kids going back to school and everyday stress of life with multiple sclerosis, I am wiped out. My last flight was particularly exhausting. It seems that every time I travel, the airlines come up with new ways to delay my flights. This past one last week was a flat tire. Yes, a flat tire delayed me for two hours on a one hour flight to Santa Barbara.

That is the thing about life. There is relatively low predictability. Those of us living with MS love a predictable schedule, but the truth is that circumstances outside our control force us to adjust on the fly. The problem is that if we don’t keep up, we get left behind. So how do I manage to keep up with a busy schedule while dealing with a chronically fatiguing disease? Here are some tips that I use to make my hectic schedule a little more manageable.

3 Tips for Managing a Schedule with Multiple Sclerosis

1. Prioritize and Plan Ahead – Prioritize neurology, other doctor appointments or medical procedures ahead of time. There is limited availability for these medical services and spots fill up fast. If you know that you need a neurology follow-up, MRI, etc., plan six months ahead of time and book it. This will reduce the stress of trying to get an appointment at the last minute, which may cause the extra stress of having to juggle other items on your calendar.

2. Keep a Calendar – Whether electronic or paper, you need to have access to calendar reminders when planning your schedule. I cannot tell you how many times I have double booked myself because I did not refer to the calendar in my pocket. Using today’s technology will allow you to be prompted for important events or forecast possible conflicts. With MS you have enough to worry about, let the calendar manage your time, so you don’t have too. I know once I did, my stress of wondering what I had next was gone.

3. Let Go of what you can’t Control – This is perhaps the hardest lessen to learn. So you have prioritized, planned ahead and calendared an event. Then something unexpectedly flares up derailing your schedule. This is OK. It is bound to happen. Last week, there was nothing I could do about the flat tire on the plane. Some in the crowd went to customer service. Others went up to the gate agent. Most waited in some line for two hours asking questions about an event they couldn’t control. I sat in my seat and waited for the tire to be changed. After all, I would rather be a little late then try to land on a flat tire.

Living with multiple sclerosis is tough. It can be a chronically fatiguing condition that makes you feel like you are constantly trying to catch up with those around you. Don’t let your schedule contribute to your MS fatigue. Use my 3 tips for managing a schedule with multiple sclerosis. Remember to prioritize and plan ahead, keep an up-to-date calendar and let go of what you can’t control and you will find the everyday stress of keeping your time melt away.

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/


MS and Senior Year Stress: Helping Your Child Leave High School for College

By: Jeri Burtchell

My son came into this world two months premature, had the wrinkled skin of a little old man, and his head fit snuggly in my tightly cupped palm. I just prayed he would live to come home, too scared for our future to think about “prepaid college plans” or anything.

Seventeen years later, my preemie who once weighed 3 pounds is officially a senior. We weathered many challenges along the way, between my MS and his complications from being born too soon. But we’ve made it to this point and I couldn’t be more proud — or terrified.

He has his sights set on college and I’m kicking myself for never starting a prepaid college fund. Besides money, there’s a lot of planning involved, it turns out.

Starting with the senior photo shoot it seems like the wheels have been in motion and I’m falling off the back end of the wagon trying to keep up. There is so much to do!

He enrolled in two Advanced Placement (AP) courses that would look great on his transcripts. We followed that up with a trip to the guidance office where I thought we’d have a single session and be all set.

I think the moment I began fearing a possible MS relapse was at the end of that initial–and completely overwhelming–meeting. She let us know we were playing catch-up at this point. Who knew that college planning begins in the womb?

That prepaid college fund? Probably would have been a good idea. After all, how much can I realistically expect to save between now and next fall? The counselor nixed my idea of spending every dime I get on Lotto tickets in hopes of affording tuition. She said that’s not the best plan.

No, the best plan involves lots of research and determination on my part evidently. My son is bogged down with AP homework so I’m scouring the internet for scholarship opportunities. Thanks to MS for the insomnia I suffer, I have plenty of free time between 1 and 5 AM to read websites and figure out if they are scams or legitimate awards worth applying for.

There really is a scholarship opportunity for left-handers, for example, as well as for seniors who opt to construct their prom attire completely from Duct Tape. Aside from the unusual ones, however, did you know your children can qualify for scholarships if their parent has MS? My son even can even apply for one related to his asthma.

So what can I share with you to help pave the way for your talented child to be able to go to college? Here is my list of things it would have been helpful to know prior to senior year. Hopefully this will relieve some of the relapse-provoking stress, and prepare you for the exciting possibilities that lie ahead.

● Take Honors or AP courses as early and often as you can, striving for academic excellence. (My mantra his entire life was “If you ever expect to go to college you’re going to need a scholarship because I can’t pay for it,”–and we’re learning how right I was.)
● Go to College Night at the high school starting in Freshman year, and learn something each time you go. There are goals you can be achieving along the way, helping your roll out your plan.
● Make a short list of the colleges you’d like to attend and focus on finding out all of the requirements and deadlines for applying. You’ll want to keep track of:
○ Application deadline for the following fall. (I was shocked to see a lot of schools want my son’s submission by November 1 of this year!)
○ SAT, ACT, and GPA minimum requirements
○ In-state vs out-of-state tuitions and housing
● Your guidance counselor may be able to give you fee waiver passes to retake the SAT and/or ACT tests. The retakes do not cancel out previous test scores so don’t worry that you’ll do worse. Your best scores count!
● Search everywhere for scholarships to apply for. Even if it’s small, they can add up fast. Wells Fargo website has a database you can search for scholarships. You have to sign up and fill out a profile and they research the possibilities for you.

In all of your planning, parents, don’t forget about yourself. Your child, like mine, is probably a big help around the house and has been acting as a caregiver to some extent. You may not even realize how great a role they’ve been playing until your nest is empty, unless you have others still at home.

Be sure to create your own plan for how you will connect with your child while they are away, who will take over their caregiver or household responsibilities, and make the transition as smooth as possible.

This should be a time of joy and celebration (I keep reminding myself) so do all you can to prevent the stress that comes with it from sending you spiraling into a relapse. Keep cool, start early, stay focus, and have a plan.

And on the last day of school, toss your own hat in the air–you’ve earned it! Congrats!

*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.


Back to School: The Importance of Rest and Recovery

By: Meagan Freeman 

As a mother of 5, I have always looked forward to that special time of year when my children head back to school! It was a long, hot summer this year, and I spent my days without the usual daytime break I always need during the school year. Summer can be incredibly difficult for parents with MS, and children are often left bored at home, looking for entertainment. Temperatures often hit the 90s-100s in my area, and on those very hot days I was left a virtual prisoner, trapped at home in the A/C with children who were not often pleased. Most MS patients require a certain amount of rest during the day, and noise can become a tremendous irritant. Without a break, we often become fatigued and emotionally spent.

My children returned to school early this year, on August 24th. My oldest left for college this year, and it was surreal to help him pack up his things and head out. Though I was saddened a bit, I also thought to myself with a twinge of guilt: “Check one off the list!” The first day back was chaotic, dragging exhausted children out of bed early and forcing them to dress, eat breakfast, and get out the door begrudgingly by 7:45 AM. I have found that planning ahead and organization are the keys to success with a large family, and I always spend the evenings preparing everything needed for the morning. Lunches and snacks are packed ahead of time, clothes are in piles according to child, and backpacks are in a neat line ready to be carried out. I have issues with memory loss at times, and I find that failure to plan ahead leads to disaster. I recommend using electronic devices to plan out calendars for the week, setting “alerts” for important times and events. After forgetting to pick children up on early dismissal days several times last year, I have learned to mark out the important pick up times well in advance.

We jumped in the car on that first day of school, everyone in new outfits and excitement in the air, and made our way around town to multiple schools, into new classrooms and new adventures. After the last child left the car, I drove home slowly, sipping my coffee with a sense of great relief. I walked in the door of my home, to a quiet and peaceful spot for the first time in months. I took a deep breath, and realized that at last, I had some free time for myself.

Through these yearly experiences, I have come to understand that I need time for rest and rejuvenation. It is not a luxury for me, but rather a medical necessity. Without a chance to “recharge the batteries,” we just don’t function well as mothers and fathers with MS. Though childcare can be incredibly expensive during the summer, I would advise all parents with MS to factor in some time to rest. Those precious quiet moments are exactly what the doctor ordered, and we should all begin to see rest as a medication or a treatment, something that our disease demands. Even if a friend or family member might give you a bit of respite and take the kids for a few hours occasionally, this would be of great benefit. We should all take a bit of time to care for ourselves, so that we might care for our families in the best possible way. Happy Back to School!

*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.


Do the Patient Billing Double Check

By: Matt Cavallo

Raise your hand if you went to school to understand medical billing? My best guess is that the majority of you did not raise your hands.

Alright, this time raise your hand if you understand the difference between a medical bill and explanation of benefits. Again, my best guess is that most of you did not raise your hand.

An explanation of benefits (EOB) is a statement summary of charges sent by your insurance company about an episode of care. The EOB is an FYI of what is covered or not covered, but it is not necessarily an accurate reflection of your medical bill.

Your medical bill will always come from the facility that you received the medical service. These bills will state the billed cost (what the facility charged your insurance), insurance reimbursement amount (what insurance paid to the claim generated by the facility) and the patient responsibility (the amount you owe).

Now, the patient responsibility part of the medical bill requires you to do a double check to ensure that you are paying the correct amount. Often times the patient responsibility can be inaccurate if it wasn’t coded properly. This is especially true if you have some special situation like financial assistance for a specialty treatment.

Take me for example. For my MS medication, I have a financial assistance program offered from the pharmaceutical company that manufactures my treatment.

As an aside, if you are not aware whether or not your pharma company offers a copayment assistance program or if you qualify, that information is generally listed on the pharmaceutical company’s website.

Back to my story. So, the terms of my financial assistance program state that I am responsible for a $10 copayment for each treatment. Therefore, if I am billed $10.01, the medical billers are off by a penny and I can dispute the charge.

I started receiving bills that were over $100 per treatment. These bills also matched the responsibility on my EOB, so it stands to reason that I would be responsible right? Wrong.

I do have a background in medical billing. I used to manage a hospital clinic and we had this problem all of the time. The problem is that the financial assistance programs require a different workflow than traditional medical billing. A lot of time the billers are unaware of how to apply these financial assistance programs or they are not marked properly in the medical chart.

If the medical biller does not apply the financial assistance program to the bill, then an erroneous charge is generated. As a patient with a financial assistance program, you are not responsible for this error. The problem is that you may not always know that you are not responsible. You think that since the bill matches the EOB that it must be right. This is not always the case and it is contingent upon you to be your own advocate.

When I started getting these billing errors, I took action. I called the 1-800 number on the bill and I contacted my pharmaceutical company to let them know. My pharma company reached out to the medical billers and that bill was resent stating that I only owed $10!

Doing a double check, I saved myself $90. This has happened to me a couple times after the initial erroneous bill. Each time I called and each time I was only responsible for $10 per visit. By now, I have saved over $500 this year by doing my double check and not being afraid to pick up the phone and question the bill.

From my time managing the clinic to situations with me and my family, to helping friends of mine, there are any number of reasons why double checking your bill can be beneficial. One last story, my wife got billed an out-of-network lab draw for a well woman exam at an in-network facility, generating an over $700 bill. Bills are generated by computers, but people are in place if you have any questions regarding the bill. After we got over the sticker shock, I said let’s call. We were responsible for our $25 copay and that was all!

Being a patient with multiple sclerosis is tough. Don’t let medical billing errors make it any tougher. Remember to be your own advocate and if you are questioning a bill, don’t be afraid to pick up the phone and do the patient billing double check!

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/


Insurance Open Enrollment is Fast Approaching

Open enrollment is fast approaching! November 1, 2015 marks the first day to enroll in a 2016 Marketplace health insurance plan.

During the 2015 open enrollment period 11.7 million people had enrolled in a Health Insurance Marketplace plan. While many of these enrolled individuals will continue with their selected plan, if you are unhappy with the insurance plan purchased for 2015, the open enrollment period exists to allow those who had previously purchased health insurance through the marketplace to make a change to their current plan. Maybe your doctor has changed, or you would like to try a new MS treatment. Searching for plans that match your needs can easily be completed using the Healthcare.gov Marketplace.

From November 1st, through January 31st 2016 individuals can make changes to their current plans. While the changes made do not take effect until January 1st, this provides individuals with the time needed to make a decision on which plan will work best for their needs.

For those who are new to the Marketplace and purchasing insurance for the first time, MSAA’s Health Insurance Guide, is a valuable resource aimed at assisting the MS community with understanding the many details surrounding today’s health insurance options. Using the PLAN Ahead model (Prepare, Look, Analyze, and Name), MSAA’s Health Insurance Guide provides a comprehensive overview of what should be evaluated when purchasing a plan.

Still confused about the Affordable Care Act, or how the Insurance Marketplace affects you? MSAA has created an informative webinar to better explain the process titled What You Need To Know About The Affordable Care Act. Additional webinars can be found within the MSAA Health Insurance Guide, including The New Insurance Marketplace and MS .



Insurance and Planning with Multiple Sclerosis

As we highlight and discuss various insurance related topics this month, we wanted to share some additional material that has been written over the years to continue to educate the MS community and to continue the thought process around planning with MS.

In Planning for the Future: Long-Term Care and Advance Directives a difficult topic is discussed around end-of-life care and making arrangements for a nursing home while still relatively young and relatively healthy. While the topic of advance directives can be a morose one, it is important to at least discuss your wishes with your family. Unfortunately, we do not have a crystal ball to tell the future, but having a plan can at least ensure your well-being.

“Nobody ever really wants to think about what needs we may have in the future, but there comes a time when each of us should consider what future plans we would like to make if challenging circumstances do arise.” In the Advanced Planning blog from 2012, we continue the discussion of planning with MS to discuss how examining issues before they arise provides control over our wishes.

For some individuals, there may be a time when MS symptoms create change that requires additional assistance in the home, to try to help manage daily activities and duties of the household; Getting Help at Home When You Have MS discusses the various types of supports to individuals in their homes, and ways to navigate the assistance.

Continue to check back with the MS Conversation blog this month for more helpful information and guidance.


Medical Necessity: Advocating For Needed Treatments

By: Meagan Freeman

As a Nurse Practitioner, I became extremely familiar with dealing with the often-frustrating denials by insurance companies, particularly when it comes to prescription drugs. After all, I am the one who holds the professional medical degree, and I am the one who should be determining what treatments my patients required, not an insurance adjuster.

The problem is, insurance companies often have a policy of “automatic denial” for expensive prescription drugs. This policy means that no matter what the circumstance might be, they will always issue a denial when an expensive medication is ordered. This policy may be a deterrent for new providers and patients, and may lead to an unnecessary change in treatment, opting for a less expensive drug that is less effective.

When dealing with insurance companies, my experience has led me to realize that it is incredibly important for providers to immediately argue the case, rather than to simply accept this automatic denial of needed treatment. I often find that a simple phone call to the insurer, with my insistence that the treatment was a medical necessity, and that no other alternative would be acceptable, is all that is needed for an eventual approval. These automatic denials are in place in order to save unnecessary expenses for insurers, whose main focus is always the bottom line. These are not medical professionals on the other end of the phone, and their opinion is not more important than your treating provider’s.

With the new affordable care act, all insurers are required to offer at least one covered medication in each disease category, and cannot deny patients needed medical treatments. Thankfully, no patient can be denied for coverage any longer due to a pre-existing condition such as MS. Our illness is one of the most expensive diseases to treat, with drug prices often exceeding $50,000 per year. This means that we need to become very skilled at advocating for ourselves as patients. If you are told that a necessary treatment was denied by your insurer, let your provider know that you would like them to make a call and argue the medical necessity of the treatment. A simple phone call is often enough to sway the initial opinion, and this simple step is well worth the time if it leads to coverage for a needed multiple sclerosis treatment. If your provider will not take the time to appeal a denial, you may need to consider finding a new provider. Your provider should always be your advocate, no matter what the circumstance may be.

*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.


Journaling My Story (MS)

By: Matt Cavallo

In July of 2005, I was in a deep depression. I had just been diagnosed with multiple sclerosis in June of 2005 and I was in the midst of an internal struggle trying to come to terms with being newly diagnosed.

I have a family history of MS. My aunt had MS and died when I was only four years old. Her MS progressed quickly and she left us at a young age. Watching me lose my ability to walk was particularly hard on my family who couldn’t help but think of my Aunt Loretta when looking at me. It was like they were reliving a scene from my aunt’s life that did not end well.

Those emotions that my family experienced in watching my aunt progress through her disease were awakened as I started to progress. Unintentionally, those emotions were transferred to me making it impossible to cope or come to terms with my diagnosis. So, I did what I always do, and turned to the pen.

You see, I’ve been writing since I was a small boy. Whether it was poems or short stories, writing was always therapeutic for me. So when my symptoms first presented themselves, I started keeping a journal of what I was experiencing.

At first, the journaling was very helpful for my memory. Then, as I got admitted to the hospital, I used my journaling to capture the patient experience. I had never been in the hospital before and between the pain meds and all of the tests, I wanted to capture all of this information in my journal so that I could refer back to it when I was discharged.

Little by little, my journal began to grow. I had captured my symptoms, my hospital stay, follow-up doctor’s appointments and now I was capturing my depressive thoughts as I struggled coming to terms with my new fate. I just had no idea what path in my life my journaling would take me on.

Then it happened. I found myself sitting in my pick-up truck at the beach, listening to the waves crash. All of a sudden, the song Moonshadow by Cat Stevens, popped into my head. I used the inspiration from that moment to carry me to Barnes and Noble.

At Barnes and Noble, I wanted to find a personal story of the diagnosis that I went through. I wanted to hear another person’s story, so that I would know that I was not alone. However, the books on the shelf were all technical or diet manuals about MS. Disappointed, I returned home and pulled out my journal.

As I flipped through the pages of my journal, I could recall my symptoms, my emotions, my fears. It was at that moment that I realized I was reading the story I was searching for. It was all in my journal. I would spend the next couple of years transforming my journal, into my memoir. Now, in an ironic twist of fate, Barnes and Noble carries The Dog Story: A Journey into a New Life with Multiple Sclerosis.

My journal has been transformed into the very thing I was seeking. Now it is a resource for other people who are experiencing the diagnosis I had faced all those years ago. Today, I continue sharing my journal though my books and my blogs. Sharing my story with the world has been the most rewarding and humbling experience for me. My best days are always when a reader reaches out to me and lets me know that my story helped.

Journaling doesn’t have to lead to writing a book or blog, but it is an important way to remember how you were feeling at a certain place or time in your life. How are you sharing your story? There is someone in your life right now who may not understand what you are going through. When words fail you, write down your thoughts and feelings and share with that person. If you can’t write, keep a picture journal or scrapbook. You will both be glad you did.

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/