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 Presents S.E.A.R.C.H.™ Live Webinar

msaa-search-graphicWhile having more than a dozen FDA-approved treatments for relapsing MS is very encouraging, learning about the therapies and knowing what questions to ask your doctor can be very challenging. Because of this, the Multiple Sclerosis Association of America (MSAA) created its S.E.A.R.C.H.™ initiative several years ago and recently updated the program with a new booklet, workbook and now an upcoming live webinar!

Designed as a memory aid, the S.E.A.R.C.H.™ acronym represents six key areas that should be considered when “searching” for the most appropriate MS treatment. We invite you to register for our free, live webinar, How to S.E.A.R.C.H.™ for the Right MS Therapy for You!, on Wednesday, October 19, 2016 at 8:00 pm Eastern.

In this live, one-hour webinar, MS expert Dr. Carrie Hersh will:

  • Review the current landscape of MS therapies and those on the horizon
  • Discuss the importance of having a good doctor-patient relationship
  • Explain the S.E.A.R.C.H.™ acronym and how it helps people remember the six key topics to discuss with their physician when deciding on a treatment
  • Provide effective strategies for staying on treatment

Following the presentation, participants can engage in a Q & A session with Dr. Hersh from questions submitted through the S.E.A.R.C.H.™ webinar’s live chat feature. For more information about the S.E.A.R.C.H.™ initiative, please visit our website.

This webinar, along with other recently updated S.E.A.R.C.H.™ materials, has been made possible with support from EMD Serono and Sanofi Genzyme. MSAA is solely responsible for the development of S.E.A.R.C.H.™ and its content.

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MSAA Joins Revlon 2016 Challenge

MSAA is excited to be a part of the Revlon LOVE IS ON 2016 Million Dollar Challenge!  From now until October 26th, MSAA and other organizations focused on women’s health are competing to raise the most money for a grand prize of a $1 million donation to their cause. In addition to the grand prize, throughout the fundraising competition, there will be mini bonus challenges with $1.4 million in additional prizes for the winners of these weekly or daily challenges.

revlon-love-is-onYou can get involved and help MSAA win the $1 million donation to fund our free programs and services including: cooling vests for heat sensitive individuals, MRI assistance, toll-free Helpline staffed by trained specialists, assistive devices, in-person educational events, award-winning videos and publications, and much more.

How You Can Help

Help MSAA improve more lives (and “Love”!) in the MS community today, by spreading the word about the Revlon LOVE IS ON 2016 Million Dollar Challenge!

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Creating Some Order in the Medical Billing Chaos

By Stacie Prada

Medical bills can be daunting to track when a person is healthy and only has a few appointments a year. When a person is injured or has a chronic illness, the number of medical bills and insurance statements that arrive by mail can be staggering. Compounding the confusion is that they’re often confusing to read and understand.  Trying to track them and know which bill has been covered, denied or ignored can be overwhelming. It can also get very expensive if you end up paying for things your insurance should cover.

Keeping a checklist and single filing spot for these medical bills and insurance statements lends some order to the chaos and helps reduce the stress of dealing with financial tasks.  It took me a while to come up with this method, and it has since evolved to a pretty simple method it works for me.

Medical Billing Tracking Example

Medical Billing Tracking Example

I created a checklist to track each visit with information needed to track payment. I use a fresh checklist for each doctor’s visit, MRI scan or lab test since each one may require working with different billing companies.  I print these on 4×6 index cards, but you could use any size paper that works for you. I’ve included a blank Medical Bill Tracking Sheet and one that I’ve filled in as an example in this post.

  1. After a medical appointment, fill in the top of a Medical Bill Tracking sheet with the year, provider and the date the Appointment/service provided.
  2. When a bill or insurance statement arrives in the mail, open it, read it, and add notes to the tracking sheet. Staple the bill or insurance statement to the back of the tracking sheet. Any time a new piece of mail arrives regarding that appointment; staple it to the back of the tracking sheet.  It will build up to a stack of papers that all relate to that appointment.
  3. For an insurance statement, see if it was paid or denied. Often, if it’s denied, they’re really asking for additional information before making a final decision on the claim.  You’ll have a time limit to provide the information, so it’s important to read it and understand what it says.
  4. If you have more than one insurance plan, coordination of benefits can become a part time job. Get used to calling each of the insurance providers to ask who has covered what and what they need to keep processing the payment.  You may need to call the other insurance company or medical provider for information to fax to another company. Be prepared to spend a lot of time on hold when you call. Take good notes and get used to being your own financial advocate.
  5. If you receive a bill from the provider, look to see if insurance has covered anything.  If it’s not listed on the bill, call the provider to see if they’ll bill your insurance. If not, you may need to submit the bill to your insurance company yourself. I’ve often had instances where the bill wasn’t paid by my insurance company, but when I called the provider I was able to confirm my insurance information and have them resubmit the bill to insurance.
  6. Sometimes the provider doesn’t hear back from insurance and will send you a bill for the full amount.  If that’s the case, call your insurance company and ask what the status of payment is. I’ve had providers frustrated that they hadn’t received payment after billing insurance.  One year each time I called my insurance company, the representative would ask questions about the date of service and provider’s billing date before telling me the bill was in process and would be paid next week.  It seemed like a game and too coincidental for every bill, but I just factored it in to the process for moving it along.
  7. Once insurance has paid for medical expenses covered under your policy, you should receive a bill from your provider for any amount you owe.  Make sure it matches what your insurance statement says you owe. If you’re not able to pay it in full, call them and see if they’ll offer a sliding scale or payment plan.
  8. Remember there are national and community assistance programs available for people without insurance or ability to pay for their health care. Call MSAA to see if they offer assistance or if they can suggest another organization that may be able to help.
  9. File all of these tracking packets that have been paid in full and are done in one place. You may need them to confirm payment was received if duplicate bills are sent before they receive payment. If you receive a duplicate bill, staple it to the stack. Don’t throw anything away in case the provider doesn’t apply your payment correctly.
  10. If you talk to anyone along the way, write it on the bill or the tracking sheet. Know and write down the name of the person you talked to, the date, and what was said. Being friendly and knowledgeable goes a long way to clearing up any confusion and getting help from people to resolve any problems.

Things to know about your medical insurance coverage:

  • Deductible amount for each year
  • The out of pocket maximum your policy covers, if applicable
  • If your policy includes a Health Reimbursement Account (HRA) the amount you’ve earned for the year.

Knowing this information will help you anticipate how much money you may need to dedicate to your health expenses each year. I assume I’ll need to pay the maximum out of pocket amount each year, and I budget that amount for the beginning of the calendar year. It’s also handy if you itemize taxes and need to know what you spent on medical expenses during the year.  Another benefit of having your records in order is that someone else could understand the status of your bills if you need someone to step in and assist you.

Keeping my finances in order allows me to avoid a lot of stress and time wasted figuring out what’s been done and what hasn’t. While the instructions for tracking this may seem obvious, it’s nice to be able to go back to the steps and checklist when the volume of paperwork gets overwhelming.

Blank Medical Billing Tracking Checklist

Blank Medical Billing Tracking Checklist

*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/

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Special Swim for MS Swimmer Honored by the Military

Almost all of our Swim for MS participants have had some kind of personal connection to multiple sclerosis – whether a family member was diagnosed, a friend, or they themselves have MS.  In this way, Team DragonFLY Captain, Courtney Evers, is no different.  When her mother was diagnosed in 2005, Courtney and her family turned to MSAA for information about MS.  After spending years on our website using MSAA resources and repeatedly seeing information about our Swim for MS program, Courtney decided to start her own.  “It was something I could not only do for my Mom, but that she could be a part of, too,” says Courtney.

Courtney’s mother (left) swam the most distance of the team last year!

Courtney’s mother (left) swam the greatest distance of the team last year!

What does make Courtney Evers different from other Swim participants is that she was recently awarded the Military Outstanding Volunteer Service Medal for her volunteering efforts, including her years as the captain of her Swim for MS events.  Since 2011, Courtney and her teams have raised more than $7,500 for the MS community by swimming in New York, Hawaii, and everywhere in between.  When asked about receiving this special honor, Courtney said:

“The Swim for MS part of my MOVSM was by far the most meaningful, because it was something that really ‘hit home’.  Not only was my team helping raise awareness, but the funds raised were actually going to those that needed it with MS.”

Please join MSAA in thanking Courtney for her service to her country and for her commitment to the MS Community and improving lives today!

unnamedTo learn more about starting your own Swim for MS, please visit SwimforMS.org.

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Happy Labor Day

Happy Labor Day StarsMSAA’s offices will closed on Monday, September 5th, in observance of Labor Day. We will be back to normal operating hours on Tuesday, September 6th. 

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Stories to Inspire

Find Out What “Moves” Joe Revello

Joe Revello tests out his new Alinker, with its inventor Barbara Alink

Joe Revello tests out his new Alinker, with its inventor Barbara Alink

“It’s all about helping people,” noted MSAA volunteer Joe Revello of Plainfield, NJ. “Whether it’s raising funds, helping at an event or just having that conversation to build awareness, any effort in the fight against MS is critically important.”

Joe, who was diagnosed with MS in 1995, has been an active volunteer in the MS community for more than a decade. Recently, with the help of his sister-in-law, Joe organized a very successful school walk for MSAA and has now joined our newly formed volunteer task force aimed at expanding local, grass-roots fundraising efforts to support our signature programs and services.

But beyond his fundraising successes, Joe’s commitment to helping people with MS continues to grow as he now embarks on a much different and very personal crusade. In fact, you can say it literally “moves” him toward a new level of advocacy.

“Walking has been my biggest challenge over the years,” said Joe. “I can’t walk unassisted, my balance is horrible, and I experience pain in my hands and wrists when using crutches. Using a walker has me bent over, tightens my back and doesn’t allow me to walk as far as I want to. I also tried using a scooter but it wasn’t for me as I wasn’t moving and I didn’t want my physical condition to decline.”

Never shying away from a challenge, Joe knew there had to be a better option to help meet his mobility needs, so he turned to … the Internet – of course! “Believe it or not I typed in the words: ‘Futuristic Walking Devices’ and up came this product called the Alinker. I was immediately impressed by its design and function. The more I read about it, the more I knew this could be something that could change my life.”

Produced in the Netherlands, the Alinker is described as a walking-bike that allows users to sit upright so they are eye-level with their environment. Although excited by his discovery, Joe’s enthusiasm was soon tempered when he spoke to the inventor, Barbara Alink, and learned the product was not yet in production and only available as a prototype. However, Joe and his wife Denise didn’t want this possible opportunity to pass them by and ventured off to the Netherlands to meet Barbara and test out the prototype.

“I was on the Alinker that day for four hours and walked two miles,” noted Joe. “I was not fatigued. I moved at my own pace, independently and could stay connected with my companion. I could have never done that with a walker or crutches.”

Unfortunately, Joe and his wife had to leave the Netherlands without the Alinker. A short time later, Joe obtained his own prototype to use temporarily until the company, Alinker Inventions, could begin the manufacturing process. Through a grass-roots crowdfunding campaign in the Netherlands, the company was able to produce a limited number of Alinkers and Joe became the first United States citizen to own a finished walking bike, at a cost of $2,000 US. When hearing about the company’s plans to establish a similar fundraising campaign to help bring this mobility device to people in the United States, Joe immediately put on his MS advocacy hat and went to work.

“My goal is to make the entire MS community aware of this product,” said Joe. “Obviously everyone’s MS is different and people have their own, unique mobility needs. But I would like to see people who are mobility challenged like me have the same life changing experience as I have had with the use of the Alinker.”

“After training, I can walk using both legs more symmetrically on the Alinker and I have built up muscle where I hadn’t before when using other mobility devices. Plus people now call me the cool guy on the yellow bike!”

Editor’s Note: Please know MSAA does not recommend or endorse any particular product or service. This article is intended for general informational purposes only, and it does not constitute medical advice. For diagnosis and treatment options, you are urged to consult your physician.

 To learn more about this product, please visit http://www.thealinker.com/.

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My MS Journey – Jessica’s Story

One of the hardest things about unexpected change is suddenly having a ton of questions and not enough answers, particularly when you are newly diagnosed with MS.  Questions can range from: “what is multiple sclerosis and what are its symptoms?” to “how is MS treated?” to “what does having MS mean for your life?”  However, these questions are never limited to someone recently diagnosed with MS.

My MS Journey is a resource for people at all different stages of their life with multiple sclerosis.  There is “Just Starting Out” for the newly diagnosed, “Staying On Course” for people who are more familiar with how MS affects their body, and “The Seasoned Traveler” for anyone who has lived with MS for a longer time and may be looking for different information.  All three sections of My MS Journey offer a listing of resources including videos and articles to help answer questions as life continues to change around us.

Check out Jessica’s story above for how she felt after being diagnosed with MS.

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Cut the Deck and Deal the Cards

By Lauren Kovacs

This is a big ticket for those with MS.

We never know what our hand will be. Even frequent shuffling can deal you a bad hand.

Our crystal ball has been smashed.  For me thankfully, I had 18 years of a mild MS course. I was able to work, get married, have kids and mostly be like everyone else.

I had been a college athlete and I never thought that being physically active would end.  As an adult, I took figure skating, did Irish dancing and clogged.  I was always up for something to excel at.

The changes associated with declining mobility are extremely hard.  New ways of doing things became an essential skill.  Sometimes, there is no way to really deal with the physical betrayal.  When it comes to medical equipment, picking fun colors seems to make necessary medical equipment less medical.

Changes can come frequently. Cards are often shuffled and dealt quickly.  First, I started needing a cane.  No big deal.  I bought a blue fish cover for it.  A year later, the walker came into the game.  I made sure to get one in pink with big wheels and a cool frog bag attached.  Then, another hand was dealt.  I needed a wheelchair. Not cool.  I was not happy.

I again figured a purple one would be fun.  Going with devices as non-medical as possible was a good way to deal with that change.  I made them extensions of me.  A little pinch of personality and a little bling can go a long way.  I didn’t fold and stayed in the game.

Last year we took a trip and I needed to bring a walker to use in the cabin.  We flew, so I bought a gray one that folded into a garment bag.  I used duct tape with butterflies to make it fun.

I really hated the idea of using that walker, but people saw the butterfly duct tape.  I was able to enjoy our trip a bit little more.  It was still hard to get around, but I felt less disabled.

Making change fun is the only way I can deal with mobility changes.  A pink walker, a purple wheelchair or butterfly duct tapes were simple changes that were not medical.  Make changes as non-medical as possible, when it comes to mobility equipment.  I was dealt a bad hand, but injecting fun is a simple way to make a bad hand livable.

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Dealing with an Unexpected Change with MS

By Matt Cavallo

Multiple sclerosis is an unpredictable disease. I’ve been living with MS for eleven years now and just when I think I am getting the hang of it, something changes and I’ve got to start all over again. When the change is unpredictable, that is when it can be the hardest. This was the case for me when the results of a recent blood test forced me to reconsider my treatment options.

I have been on the same treatment for the past nine years. During that time, my MS was well controlled. My long term plan was always to stay on this treatment. The reason being that I tolerated the treatment well. The only relapse I had during the previous nine years was when I was unable to receive my treatment.

Then came this summer. As I sat across from my neurologist, I knew that something was wrong. He explained to me that my routine lab work concerned him. He felt that my treatment now presented an elevated risk and that it was time to explore new treatment options. I didn’t know how to react. When I came in for my appointment, I wasn’t prepared to discuss changing to a new treatment.

There were many different emotions that ran through me all at once. The first was fear. I was afraid of the unknown. I knew that I tolerated my current treatment and didn’t experience relapses. There was no way to guarantee that I would experience the same kind of positive outcomes on a new treatment.  Also, would that treatment have the same kind of efficacy that I had become used to over the past nine years? On the flip side, would staying on my current relapse expose me to the risk of a potentially fatal side effect?

In addition to the fear, I became angry and started to blame myself for my labs changing. I didn’t know what I did that was different. I was in disbelief with the results and wanted another test to confirm the findings. I left the appointment in denial thinking that the test was wrong and that my risk was still relatively low, so theoretically I could continue my treatment without harming myself. I told my neurologist that I needed some time to think about it and scheduled a follow-up in two weeks.

During that two weeks, I found myself depressed. A second blood test confirmed my fears. I found myself at the crossroads needing to make a difficult decision. On one hand, I could continue down the same familiar road I had been traveling for nine years, but with an increased risk of a scary side effect. On the other hand was a new road and I was unsure what the future would hold on my MS journey. Then came my follow-up appointment.

I was nervous sitting in the waiting room. Even though I had two weeks to consider my change in treatment, I really didn’t know what I was going to tell the doctor. I just knew that whatever I said was going to result in change. I knew that even if I continued on my current treatment that there was increased risk and with that would come increased monitoring and a new sense of worry that didn’t exist before the lab results.

Once we got past the pleasantries, my neurologist looked me in the eyes and asked if I had made a decision. Without thinking about it, I blurted that I would try the new treatment.

With that, I felt a weight lifted off of me. I finally accepted that I had to change and the only way that I would be successful would be to embrace and accept that change. However, I did need to experience all of those emotions before I was open to accepting the change.

The thing that I learned from this situation is that no change should be taken lightly. Pasteur once said that chance favors the prepared mind. In my case: I evaluated my neurologist advice, took a validation blood test, researched the recommended treatments, talked to my wife and loved ones about the pros and cons, and in the end made an informed decision. This was not a change I wanted to make, but the unpredictable nature of MS thrust this upon me. In the end, I am at peace with my decision and embracing the road ahead.

*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

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Metamorphosis: Coping With Change

By Meagan Freeman

All things are temporary, including darkness.

Butterflies are a wonderful example of this. Look at these incredibly beautiful creatures, fluttering and dancing on flowers like living magical fairies from some other world.

Metamorphosis CompleteThese are some of the most graceful, elegant creatures on Earth, but they did not start out this way, did they? These creatures began as rather ugly caterpillars and worms. They become beautiful after a long period of change.

This period of change is spent alone, in darkness, with no input from the outside world. They depend on no one during this time, only themselves. This metamorphosis, or period of transformation, is one of the most miraculous biological phenomena on our planet.

Middle MetamorphosisThese creatures completely transform every aspect of their lives, and they do it alone. Lessons of our own can be learned just by observing these creatures. Our period of darkness and transformation begins with our diagnosis of MS. Most of us experience a long period of darkness and crisis from that moment on, lasting for months, or even years. Beginning at the moment of diagnosis, we must completely change our self image. This is a difficult process, and no one can really help us through it. We must resolve this new identity within our own minds, and it takes time.

I often refer to my own years following diagnosis as my “metamorphosis.” I changed entirely, and I am not the same person I was before August 24, 2009. Change is difficult, painful, and uncomfortable. Change is awkward, frightening, and exhausting. But, change is an essential part of life. All is temporary, every single thing in this world. This helps me get through the tough times, because I am reminded that the darkness will not last forever. All is temporary.

The transition from “healthy” to “MS patient” is not immediate, and we should allow ourselves time to adjust to this new identity. After all, we spent decades of our lives as healthy people before we obtained this new label. How can we adjust to this overnight? The diagnosis of MS is made on one specific day, and it is shocking.

After time, I learned to accept this diagnosis, though it still makes me angry, frustrated, and sad at times. The first year after diagnosis was the most difficult, when the mind struggles to accept. Slowly, though…I began to realize that this was reality. This was part of me, whether I liked it or not. What else was there to do other than accept it? I learned to predict my symptoms more efficiently, to understand which symptoms were familiar and which were new.

We each spend a period of time transitioning, accepting, and changing after diagnosis. The most important thing to realize is that it takes time. The way you feel after initial diagnosis: The shock, the anger, the fear…won’t last forever. Your life will go on, and it may even be wonderful. MS does not mean that life is over, rather it means that life has changed. Change is never easy, but it can often lead to great things. Try not to fear the metamorphosis, because you never know how beautiful your life might end up being in the end….

*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.

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