Welcoming Spring with New Activities for the MS Community

Posted on March 21, 2014 by MSAA

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?

If you need health insurance…

Posted on March 19, 2014 by MSAA

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.

Spread Some Sunshine For MS Awareness Month

Posted on March 17, 2014 by MSAA

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.

References:

http://www.healthline.com/health/multiple-sclerosis/youve-got-this

Credit:

“Hope for a Cure” illustration by Jeri Burtchell

Commonly Missed Medical Expenses for Tax Deductions

Posted on March 14, 2014 by MSAA

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!

Resource:

http://www.irs.gov/pub/irs-pdf/p502.pdf

*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/

Dental Hygiene and Multiple Sclerosis

Posted on March 10, 2014 by Samantha Schech

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

Multiple Sclerosis Awareness (when you might not want people to be aware)…

Posted on March 7, 2014 by MSAA

March is MS Awareness Month. As an advocacy group, you will hear MSAA discuss our available resources, and encourage you to get out and be active about raising awareness for MS and supporting programs which benefit individuals with MS. We will promote and support expanding knowledge and information about MS. With all of that going on, it might feel like you need to wave a flag shouting, “HERE I AM. I HAVE MS!!!”

As the Manager of Client Services at MSAA, I wanted to acknowledge that there are times when you (or your friend or family member) may not want others to know about a diagnosis. While you may want to be an advocate to spread awareness and information to help people understand about MS, you may not want certain people (i.e. an employer, a new boyfriend, or a casual acquaintance) to know you or a loved one has MS.

There is nothing secretive about a diagnosis, but it is your (or your loved one’s) own personal health information. While some people might share that they had a heart attack or stroke with anyone they meet, others might feel medical information is no one else’s business and only talk about it with a doctor or close family member.

So, if you want to be an advocate but not shout a diagnosis from the rooftops, what can you do?

On social media sites:

Think before you post. Are you comfortable with everyone seeing your update or picture? If not, make sure to check your privacy settings before sharing personal (health-related) information so that only people you want to learn about your private information, such as close family or friends, can see your updates and pictures.

In person:

If you want to talk about MS in the community, know that not everyone who spreads information and encourages activity for a cause will be personally affected by it. If you don’t feel comfortable sharing your diagnosis, make it general: “ I’m helping out with a cause… Can you help too?” or: “There is a charity I support, and I wanted you to know about them and what they do” are generic ways to introduce information about “your cause,” even if you don’t want anyone to know it is personal.

In many of these situations, there may be a future point in time where you might want to share a diagnosis. On the job, you may decide to ask for a reasonable accommodation and share a diagnosis when needed. When your boyfriend goes from being casual to serious, you might feel comfortable disclosing. Likewise, if a casual acquaintance becomes a good friend, you may want to share. If not, there is no pressure. You can still be an advocate for MS without disclosing a diagnosis.

Self-Advocacy for People with Multiple Sclerosis

Posted on March 3, 2014 by Angel Blair

Different thoughts may come to mind when you hear the word ‘advocacy.’ Some may not be familiar with the term or others may have a very vivid description of what the word means to them. Advocacy can be defined as active support, pleading or arguing in favor of something or for some type of cause. Individuals advocate for themselves in different ways, sometimes without the knowledge that they’re engaging in self-advocacy. When you visit your doctor and ask questions, this is a form of self-advocacy. You are supporting your healthcare by requesting more information to make the best informed decisions you can regarding your care. Some individuals have others assist them with this task at times; family members, friends and caregivers have been known to advocate for care when involved in the healthcare process. Sometimes it’s helpful to have another voice or set of ears advocating for your health needs when interacting with your medical team, and there can be different forms of this advocacy presented.

Here are some ways the MSAA can help you remain an advocate in your healthcare:

My MS Manager™: a mobile-phone application to track disease activity, store medical information, generate reports, and assist individuals with their treatment plan
MSAA’s S.E.A.R.C.H.™ Program: tools to help individuals with learning about the approved long-term treatments for MS, along with questions to discuss with the patient’s medical team
My MS Resource Locator: an MS-specific, online database offering targeted information and unique support services, including detailed guides

What are some ways you advocate for your care?

Newly Diagnosed with Multiple Sclerosis?

Posted on February 21, 2014 by MultipleSclerosis.net

People often experience the symptoms of multiple sclerosis long before they receive a formal diagnosis. Getting the diagnosis can result in a whole host of emotions, including confusion, stress, anger, or even relief. Knowing the cause of nagging symptoms can feel like a weight off your shoulders, but learning you have MS can also be a lot to digest.

We asked the MultipleSclerosis.Net community about the tips they would share with someone who has recently been diagnosed with MS. Nearly 300 people responded with some great suggestions. Here is a summary of the recommendations:

Do your research and advocate for yourself:

Stay open to ideas outside of mainstream information, but don’t believe everything you read online
Education is one of the most powerful tools you (and your caregivers) have
Find the right doctor and communicate openly – ask lots of questions and be completely honest (even with the most embarrassing symptoms). If you’re not comfortable, find a new doctor!
Make sure your doctor is knowledgeable in treating MS
Keep all your medical records

Take care of yourself*:

It’s important to manage your overall health – physically and mentally
Eat plenty of fruits and vegetables (avoid junk food)
Find ways to stay active. Even exercises that are not too strenuous will help you stay strong and limber
Give yourself time to get the rest you need
Don’t stop taking medications just because you start feeling better
Many people find that they are extra sensitive to extreme temperatures, particularly heat. Try to get out when the weather won’t be as bothersome and keep your body temperature as regular as possible

Make sure you have a strong support system:

Finding an MS buddy an be an enormous health
Work with associations and experts that can help you through the processes
Look to religion if it’s helpful for you
Keep a network of friends and family that can help you with even the simplest tasks when you need it
Keep your stress levels in check:
Try to keep stress levels as low as possible – stress can be your worst enemy with MS
For times when stress is unavoidable, develop ways to relieve/manage stress before it takes over and affects your health (yoga, meditation, friendship, etc.)

Keep a positive attitude, even when it’s not easy:

Know your limitations but find ways to continue enjoying life
Find something to be happy about every day
Remember that having MS is the “new normal” and be kind to yourself as you adjust
Take each day at a time
Go through all the necessary emotions – be mad, sad, angry…. then move on.

What advice would you share? Are there things you wish you knew at diagnosis?
*Please consult your doctor before making any changes to your diet or exercise regimen.

Tips for Celebrating Valentine’s Day

Posted on February 12, 2014 by Angel Blair

The annual holiday that celebrates the expression of love with tasty treats and heartfelt greetings actually has a bit of a mysterious origin. There are different notions and theories that describe this lover’s holiday that have been depicted throughout ancient times, though its actual history is still undefined. To learn more about some of the history associated with Valentine’s Day and its legends, see http://www.history.com/topics/valentines-day/history-of-valentines-day.

No matter its origin or historical connotation, Valentine’s Day remains one of the most celebrated holidays in our history. It is the second largest card-sending holiday behind Christmas, with women purchasing the majority of the greetings sent. Candy hearts, chocolates and flowers are exchanged to signify the celebration and have been widely recognized as hallmarks of the holiday. But these gifts aren’t the only way to express your gratitude and love for another person. Spending quality time with people you love, whether it be family, friends, or a significant other, can show how much you appreciate someone.

Here are some tips on how to celebrate the upcoming holiday:

Invite a friend or family member to celebrate the day with you if you’re not romantically attached. The day is about spending time with those you care for; it doesn’t have to be exclusively for couples!
Why not stay in? You can make the day about spending time together just watching a movie or playing a game at home.
Think creatively and go homemade style for gifts! Valentine’s Day doesn’t have to break the bank, why not make something to give the person you care for?
Use the day to express to others how much they mean to you. Tell someone you love them and that you appreciate them and what they bring to your life, not just on this holiday, but all year round!

However you plan to celebrate Valentine’s Day, think of its mystery and indefinite nature, as this provides opportunity for you to find your own niche in making the day special!

The Expression of Love

Posted on February 5, 2014 by Samantha Schech

Valentine’s Day is a day where we open our hearts and make every effort to shower people with our love. But for some, the open expression of love is a challenge. Each individual chooses to share their love in a different manner; some opt for gifts, while others may write poems to express their love.

It is important to understand the ways in which you like to receive love and it’s important to have an open conversation with your partner regarding the ways in which you like to receive love and the ways in which you show your love.

There is a book by Gary D. Chapman called The Five Love Languages. In this book, the author believes in the importance of being able to express your love in a way that is meaningful to you and in a way that your partner can understand.

Everyone expresses their emotions differently and has a different need when it comes to love. This book helps to identify yourself and your emotional need, i.e. Love Language. For example, my love language is Acts of Service; I choose to express my love through the act of doing something for someone else. If I were in a relationship with someone who needs Words of Affirmation to feel love, the relationship may be stressed because of the differences.

Understanding and knowing your Love Language provides you with a great opportunity to have an open discussion with your partner about your feelings and needs in your relationship. Take some time to discuss this with your partner and find ways to identify it in your day to day. Perhaps true acts of love are being overlooked, simply because they are not in your Love Language.

This Valentine’s Day, how will you choose to express your love?

MSAA does not endorse the purchase of any specific product(s). Rather, any brand names are mentioned solely as an informational resource.

FOLLOW MSAA ON: