It’s time to say farewell to another month in the calendar year, and for most around the country, a hopeful farewell to the end of winter. It’s been a harsh season for most of the US, so with the end of March we welcome a warmer, though often rain consumed month of April. As we embark upon the end of this busy month, it also marks the end of Multiple Sclerosis Awareness Month, though only formally on the calendar. MS Awareness has the ability to continue the whole year round, and though its promotion in the month of March draws to a close, the MS community can continue raising awareness for the disease throughout the year. Continuing to increase education, advocacy and support for those with MS are some of the goals the community continuously strives for. So while the month of March comes to a close, it brings with it the opportunity to enter a new phase of the year with the same objective: to increase awareness of MS.
MSAA is pleased to unveil the Swim for MS online Aquatic Center at SwimForMS.org – an exciting new resource for individuals with MS and healthcare professionals.
Swimming and other forms of water-based exercise have well-established health benefits for many fitness levels. For people diagnosed with MS, the cooling and buoyant properties of water can create an ideal exercise environment allowing for movements that may not be possible on land, while keeping them from overheating. Research suggests that the benefits of water-based exercise for individuals with MS include improved flexibility, muscle strength, mobility function, psychological well-being, and overall quality of life.
The Swim for MS online Aquatic Center features resources developed to help you learn more about aquatic exercise, including the following sections:
• About Aquatic Exercise and MS – Comprehensive information about the benefits of aquatic exercise and how water-based activities can be adapted to fit all levels of ability and types of MS
• Aquatic Resources – Tips and suggestions on how to begin an aquatic exercise program and where to find a pool in your area
• Multimedia Center – Inspirational videos of people living with MS who incorporate swimming and aquatic classes into their healthy lifestyle plan
• For Healthcare Professionals – Research findings and supportive information on aquatic exercise and MS for neurologists, physical therapists, rehab specialists, and aquatic fitness instructors
To learn more about aquatic exercise and MS, please visit our new online Aquatic Center at SwimForMS.org!
The Swim for MS online Aquatic Center has been developed through a collaborative sponsorship with Genzyme, a Sanofi company.
Breathtaking, serene, and majestic are just some of the many words which come to mind when describing my incredible three-day journey into the wilds of Wyoming and Montana during the 2014 Wyoming/Yellowstone Charity Snowmobile Ride. Sponsored by the Cody Optimist Club and supported by Teva Pharmaceuticals, this year’s 16th annual ride was a huge success raising nearly $50,000 to help support MSAA’s programs and services.
I was honored to represent MSAA and attend this year’s event, which occurred over Super Bowl weekend. It was, without a doubt, one of the most remarkable experiences of my life. As a first-time snowmobile rider and flat-lander from New Jersey, I had to quickly adjust to altitudes of more than 8,000 feet, learn to operate a 550 cc “sled,” and maneuver through some pretty challenging mountainous terrain.
In taking on this new adventure I did my best to maintain pace with the pack, but admittedly went slow and cautious through the hairpin curves. This strategy helped keep me alive (a major concern of my wife) but also generated some good natured ribbing from the seasoned veterans and a few crazy rookies! I also managed to get my sled stuck in a snowbank. As a result, I earned the coveted “bone” award, which I accepted with considerable pride.
With each day’s passage I was not only struck by the remarkable beauty of the surrounding landscape, but also by the heart-warming beauty of everyone connected to this ride. Led by ride organizer Ed Livingston, the Cody Optimist Club, representatives from Teva and the entire team of dedicated riders all come together once a year to relive fond memories, create new adventures and, most importantly, help improve the lives of people with MS and their families. On behalf of myself and MSAA, I want to express my sincere appreciation and deepest gratitude to everyone associated with the Wyoming/Yellowstone Charity Snowmobile Ride for providing 16 years of unbelievable support and dedication to the MS cause and for giving this Jersey boy the adventure of a lifetime!
MSAA’s Vice President of Programs and Services Peter Damiri has been with the organization for almost 25 years and worked as the director of public relations before moving to MSAA’s programs and services department. He oversees MSAA’s existing programs and services, as well as any new program initiatives. He is also involved with many other aspects of patient education, including coordinating and managing the production of MSAA’s online educational videos and webinars. Mr. Damiri has a bachelor’s degree in communications.
Health Union recently released results from the 2014 MS in America Survey, which included responses from more than 5,000 multiple sclerosis patients. The survey addressed a variety of topics that impact individuals living with MS, including diagnosis, symptoms, treatment, relationships, career, and quality of life.
A special section of this survey focused on the use of oral MS therapies. Historically, prescription treatment of MS has been dominated by injectable and infusion therapies. With the recent introduction of oral prescription drugs for the most common type of MS called relapsing remitting MS (RRMS), this paradigm is shifting towards orals, with nearly a third of RRMS patients reporting using an oral prescription.
Needle fatigue, tolerability, convenience and efficacy are the most cited reasons for people choosing oral therapies and respondents report being more satisfied with oral therapies than injectables. Of those currently taking an injectable, nearly half have considered switching to an oral, signaling a continued shift away from injectable therapies.
Overall, patients taking oral MS medications found their medications to be equally effective as injectable treatments. However, 58% of respondents felt that oral medications offered better tolerability.
The MS in America Study was conducted online in early 2014. The goal of the study was to establish an understanding of the current state of people affected by MS. The survey included a total of 156 questions on a broad range of topics.
A total of 6,202 people started the survey. 5,710 met eligibility requirements, and 5,004 people completed the survey. To qualify for the survey, participants had to be MS patients over 18 years old and a US resident or US citizen living abroad. The study was solely developed and funded by Health Union, LLC which does not manufacture, sell nor market any product to diagnose, prevent or treat MS or any other disease.
March 20th marks the first day of spring, and for many, you can start to see and feel the
signs that summer is approaching. The days become longer, the air becomes warmer, and the plants begin to grow again. I personally am looking forward to the evenings on the porch after work. – sitting with my feet up, just watching as the neighbors stroll by. The neighborhood becomes active again, with people stopping to say ‘hello’ instead of running inside to beat the cold. Wildlife starts to show their furry faces, popping by the porch to grab some treats.
Over this harsh New Jersey winter, I began to create a list of things that I wished to accomplish once the weather became milder. I welcomed 2014 as the year to try something new, and have pushed off many of these new things until now. Cabin fever has gotten a hold of me and I can’t wait to get out! I plan to become more active, but not in a physical sense. I want to spend more quality time with people and enjoy just being present in the moment. Taking the time to fully invest myself in a task with a friend, without thinking about the thousands of other things I need to do, or rushing off to the next event.
With the nice weather, you may also wish to be more active, perhaps joining an MS group,
or attending an educational MS event in your area. MSAA provides free local MS events throughout the country where you can learn about a certain topic, often presented by an MS specialist. The Calendar of Events on our webpage provides information on the type and location of these events. Events are continually being added every day. If you register with MSAA, you can receive information via e-mail or regular mail when an event is coming to your area. Registration is available on our webpage, or, you can reach out to our helpline at 1-800-532-7667 ext. 154 and a helpline consultant will be happy to take your information.
So what do you look forward to most in the spring? Do you have any plans or things you would like to try?
Don’t forget that Open Enrollment for purchasing health insurance through the new Health Insurance Marketplace ends this year on March 31st.
If you need health insurance and have not already visited the website www.healthcare.gov or called an Insurance Navigator at (800) 318-2596, do it now! Give yourself time to make an informed decision about the best options for you. Five million Americans have already enrolled.
Remember, once the 2014 Open Enrollment period closes, you will not be able to purchase insurance until 2015 Open Enrollment begins, unless you have a qualifying life event (such as the loss of a job or the birth of a new baby).
Need more information? You can also review MSAA’s website for important information about how the ACA impacts you.
March is half over and MS Awareness month is in full swing. We’ve come a long way in helping people understand the difference between multiple sclerosis (MS) and the disease known for “Jerry’s Kids.” I have to admit, I even made that mistake when I was first diagnosed.
Lying there in the hospital bed, feeling vulnerable in the one-size-fits-nobody cotton gown, I listened as my doctor broke the news in his most apologetic tone.
“I can’t say for sure, but it’s possible you have multiple sclerosis,” he stammered.
“You mean like that disease with the telethon?” I asked.
“No, you’re confusing MS with muscular dystrophy,” he corrected me. But that was all I got. No literature or other helpful information that might explain it further.
So here I am, fifteen years later, reflecting on what has changed. Granted, it seems less folks are making that mistake, but we’re a far cry from the level of “awareness” needed to make MS a household word. Wouldn’t it be nice to see medical breakthroughs in MS as part of your typical nightly news program?
Maybe all MS needs is a good PR campaign. That’s where we who are living with it come in, sharing the importance of our cause and getting folks to pay attention.
But how do we go about affecting this change? How can you and I raise awareness so that the words “multiple sclerosis” roll easily off the tongues of healthy people? It takes communication on every level and that should start at home.
Don’t be overwhelmed thinking you have to have a grand plan or platform, or that your voice doesn’t matter. Every voice matters! And I’ve got a simple plan for spreading MS Awareness:
- Learn: You can’t explain MS to someone else until you are comfortable that you, yourself know what it is. So learn all you can.
- Simplify: If you’re trying to explain how MS affects you, do it with analogies. I always compare my nervous system to an old lamp and MS has caused its cord to fray. My brain flickers just like the light when the signals can’t get through. Depending on where it’s frayed, my symptoms will vary.
- Express yourself: Don’t think you have to be a writer, speaker, or artist to share what you know about MS. Use your own unique talents. If you like to bake, make cookies with “MS” written in frosting for a conversation starter. Maybe you’re into woodworking, so make a wallhanging or mailbox with an MS theme. Like to sew or make jewelry? Design your own MS emblems and add them to your ensemble in order to spark interest. Everyone has some gift to give to the MS awareness campaign.
- Get Social: The internet is a tool of empowerment. Share awareness graphics with your friends on Facebook. Tweet links to Awareness fundraisers and events on Twitter. Create a video to help the newly diagnosed understand it’s not the end of the world. Remember to use hashtag #MSAwareness when posting on social media.
- Reach out: Mother Teresa knew what she was talking about when she said “Never worry about numbers. Help one person at a time and always start with the person nearest you.” That’s the best advice I ever heard, after all, she made a difference, right? Start with family and friends and before you know it, you are telling the produce manager at the grocery store all about MS.
Think of awareness as sunshine. Every time we spread our MS message, sharing the need for research and funding, we shine a little more light on our cause–and our future looks that much brighter.
“Hope for a Cure” illustration by Jeri Burtchell
By Matt Cavallo:
The change of the season can only mean one thing: taxes! I can’t turn on my TV or radio right now without hearing an advertisement for tax preparation. Whether you prepare your own taxes or use a tax preparation service, one of the most overlooked areas for tax deductions are medical expenses. In this blog, I will provide a list of deductions that you may have overlooked in previous years.
As a person living with multiple sclerosis, your out-of-pocket medical expenses can be extremely high in any given year. You probably know that your out-of-pocket medical expenses are deductible, but do you know what is considered a medical expense? For example, did you know that the mileage for all the trips you made back and forth to the neurologist, MRI scan or other doctor appointments are tax deductible? If you did not record the mileage during the appointments, don’t worry. Your explanation of benefits from your insurance company will list of all the appointments that you would have traveled for. You can then calculate the mileage to and from your appointment online at Google or Mapquest, and then add up total mileage for all of your doctor visits and you’ll get your deduction amount.
This is just one example of many tax deductions that people living with MS miss every year. Other items that you can write off as a tax deduction include items that insurance may not cover, such as acupuncture and chiropractic care; medical equipment; medications; and smoking cessation programs. There are also health expenses that may not be deducted. Health Savings Accounts (HSA), Flexible Spending Accounts (FSA) and Medical Savings Accounts (MSA) are all bought with pretax dollars, so your contributions cannot be tax deductible. Also non-prescription medications, medications from other countries and nutritional supplements cannot be deducted.
There are certain items that can be viewed as either deducible or not deductible. While you cannot write off visits that insurance did pay for, did you know that you can write off your self-funded medical insurance premium as a tax deduction? For example, if you pay $400 per month for medical insurance, then that is an additional $4,800 for the year that can go towards your itemized deductions! However, while insurance paid for medical care can be deducted, you cannot write off any premium for extra insurance like life, supplemental or employer-sponsored program paid with pre-tax dollars. Also gym memberships may be a write off – if the doctor writes a letter of medical necessity stating that you need the membership for health reasons, but a gym membership for personal fitness or stress reduction is not considered a write-off.
Life with MS can be expensive. Make sure that you take advantage of tax deductions for all expenses related to your illness. Please note that I am not a tax expert and these tips are to be used for informational purposes only. Before filling out your medical deductions, please read about all of the deductions that are acceptable and not acceptable located in form IRS Publication 502 – Medical and Dental Expenses. IRS Publication 502 breaks down all of the items that may or may not be deducted. Start spring out right and maximize those healthcare deductions!
*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/
Sometimes like this weekend, for example, things will get to me. I attended a wedding weekend in paradise, bikini-clad in the Florida Keys, spending time with really great people, many of whom I’m meeting for the first time. And moreover, they’re meeting me for the first time. I was the best man’s date; his younger brother was getting married. I love social environments and enjoy meeting new people, especially those close to the people I love.
I was diagnosed at 23 years old. Beginning then, I decided it was all I could do to keep my life and my health in control where I could. I value keeping up on my treatment, staying healthy, and taking the disease seriously. It puts me at ease knowing I am actively doing all I can, and I’m proud of that. After locking down the “controllable” details (regimenting injections, exercise, diet, keeping up with friends and relationships, living in a positive environment, and embracing happiness), I’m freed up then to make the best choices possible when confronted with “life.” In this way, I am generally relaxed and comfortable in my own skin, navigating situations with conscious control and attention. When I’m walking around with injection site spots at a beautiful beach resort, that’s a time it’s a little easier to forget to be sensitive to the topic.
I’ve been able to stay healthy without experiencing too many symptoms too often. So for an otherwise healthy 27 year-old girl, it’s the (we’ll call them) “little things” that I’ll forget about. And truthfully, to me it seems those things can affect everyone else before they affect me. I attribute it to fear of the unknown. “Anna, you are SO sunburned on the top of your leg and on your hips! How does that even happen? Or is that a bruise? Hey, is your man beating you!?” (Referring to the best man.) Bless his heart…
Living with MS and injection site reactions and red welts, those marks and bruises from the shots that slow down the disease, I’ll forget about them unless they hurt or become somehow more inflamed. My boyfriend is mostly used to them, but I know it makes him sad that they’re even there at all; it’s just another reminder of the MS. When people see bruises in weird places, they’ll assume the man you’re with is probably the one beating you… You notice those looks and darting eyes. We talk about it and how he feels, and sometimes if I do something clumsy or forgetful, he’ll think, “Is that the MS?” and then he’ll go, “Do I have MS?” (Referring to himself.) Adorable.
Bottom line is, I don’t worry about people feeling awkward when I tell them that I have MS, I’m not embarrassed, and I’ll talk about it to anyone who’s curious. Once the unknown becomes understood, nothing’s a big deal, and in some strange way, it can make the connection deeper and easier. The whole thing seems to make me a more compassionate and happier person. The reactions when I tell a concerned party not to worry, are something between a quizzical look and concern, so then I’ll go on, “I have MS.” And then the, “Oh I’m so sorry,” etc. I guess why it gets to me, really, is because I feel like some people are condescending, or something even more cavalier. I’m doing everything I can do to control what I can and be the healthiest I can be, but those red spots are a blessing, and I’ve grown to learn to see them that way.
Dental issues can create a problem for anyone, but especially for individuals with MS. Gum disease, abscesses, and decay can all lead to infections, which may cause MS symptoms to increase. Often in the management of other health-related issues, dental issues are overlooked. In coordinating MS doctors’ appointments and follow up’s, it is often a challenge to coordinate dental care as well.
Overall dental health is important for many reasons. It promotes healthy eating and digestion, allowing our bodies to absorb the right amount of nutrients. It is also an important factor in enhancing the enjoyment of food and being social.
Individuals with signiﬁcant fatigue and/or mobility impairment may ﬁnd oﬃce visits beyond those required for their MS care to be particularly diﬃcult to manage. It may be helpful to inform the doctor or office staff of any difficulties you may have with fatigue or mobility. For many, sitting in the dental chair for an hour can be quite uncomfortable due to these symptoms. Talk with the office staff about ways that this can be managed. Perhaps, many of the initial “question and answer” type things can be performed while sitting or standing in a more comfortable position.
If the symptoms of MS are impacting the ability to brush and floss, speak with your doctor about other tools or adaptive devices that may be helpful. If the grip on your toothbrush is too small, perhaps wrapping something around the base such as tape or an ace-bandage may assist with making the grip better. You may also cut a tennis ball and place the toothbrush through the ball for a larger grip, or fasten a bicycle-type handle to the base.
Although it is recommended to brush and floss, don’t forget about the power of mouth wash. Many washes offer an antiseptic quality that assists with fighting gum disease. With gum and infections causing many dental issues, mouth wash may be an appropriate additive to your brushing routine to help try to prevent infections and inflammation.
With the changes in the Affordable Care Act and individuals now receiving greater access to medical care, it may be helpful to contact your insurer to learn about your dental benefits. For those without coverage or without insurance, there are still many ways to be seen by a dentist.
Check out the following tips on how to find dental care for the uninsured:
- Check for a local federally qualified health clinic which offers dental services
- Look into local dental schools. Most of these teaching facilities have clinics that allow dental students to gain experience treating patients while providing care at a reduced cost. Experienced, licensed dentists closely supervise the students
- Dental Lifelines Network offers information about free dental services in the area for those that qualify. You can look up information about your state’s program on the program’s website: http://dentallifeline.org/
- Dial 2-1-1 and connect with your local United Way. You may be directed to free or reduced cost dental services