Beat the Heat this Summer

Spring has sprung, or so they say; and while the first day of spring brought some cold weather and snow to some parts of the country, others are starting to think about the warm weather months. It is known that individuals with multiple sclerosis (MS) can be affected by the heat. The slightest increase in body temperature can intensify MS symptoms.

For those with this type of heat sensitivity, the spring and summer months can be a challenge. While family and friends start planning outdoor events and activities, individuals with heat sensitivity question what they will do all summer long.

Cooling products are designed to be used during these warmer months. Ice pack style cooling products allow an individual to place specially designed ice packs into a garment that is worn on the body. Through cooling technology, the body is provided with a safe cooling temperature that helps to reduce overheating.

MSAA offers a program for those who are income eligible to provide these ice pack style cooling products and accessories. For more information regarding this program, please visit the MSAA website at http://mymsaa.org/msaa-help/cooling/.

For those who may not be eligible for assistance through the MSAA program, the manufactures of these cooling items provide products and accessories that can be purchased. Visit Polar Products and Steele Body Cooling, and remember to let them know that MSAA referred you. There may be a discount offer available!

rsz_coolfit_kate

Share

To Know, Or Not To Know?

That is the question, at least today as it pertains to learning about the disease of MS. As we close in on a month dedicated to MS awareness, many individuals still do not know much about this rare disease. One challenge lies in the fact that the information available on MS can be very overwhelming at times, especially as the internet alone exudes multiple portals of literature and resources about the disease. This can sometimes have the opposite effect on education; rather than pulling people in to learn more, it actually sometimes intimidates people to the point where they shy away from learning more about it. This is completely understandable – MS can be difficult to understand and grasp, so it’s a process to educate oneself and others about it. So the question is, is it better to know, or not to know?

When MS touches the life of someone you know, love, interact with, or share a history with, it can be hard to comprehend what this disease is that’s affecting that person. If you didn’t have knowledge of what it was before, this may be a whole new learning process for you as well. Being part of someone’s support network keeps you tied into what’s going on in their daily experiences, so knowing what MS is and its process can help keep you informed of what they’re going through, and how you may be able to offer support when needed.

It’s not something that can be learned or taught overnight. It’s a process – and one that doesn’t have to be done alone. Talking about MS with family members, friends, peers and other support resources can aid in the significant education piece that comes with the disease. Learning more about it is the first step in knowing what it is and how you can offer your support. It can start with just an overview of MS information, and lead into further discussions and outreach. It’s also important to know that it’s ok to take your time learning about MS – review the information as you’re comfortable doing so at your own pace, and when you have questions reach out and ask. In the matter of MS, the act of knowing can be more beneficial than not.

Share something new you’ve learned about MS…

Share

Health Insurance Marketplace: Special Enrollment Period

As individuals prepare their taxes for the 2014 year, many who did not purchase or enroll in a qualified health plan may be facing the penalty fee. According to the HealthCare.gov website, if you did not have health insurance coverage in 2014, you will be responsible for the higher of these two amounts:

1% of your yearly household income. (Only the amount of income above the tax filing threshold, about $10,000 for an individual, is used to calculate the penalty.)
$95 per person for the year ($47.50 per child under 18). The maximum penalty per family using this method is $285.

On February 15th the Marketplace closed for enrollment in 2015 plans, leaving those who did not enroll to face a penalty again when filing taxes next year. The Health Insurance Marketplace is providing individuals and families who owe the fee when they file their 2014 taxes with one last chance to get covered for 2015 to avoid a future penalty for the 2015 tax year.

While the fee for the 2014 year cannot be avoided, this special enrollment period offers individuals another chance to possibly avoid a future fee.

For those interested in enrolling, visit The Health Insurance Marketplace website at https://www.healthcare.gov/screener/. This special enrollment period is only available through April 30th.

References:
https://www.healthcare.gov/fees-exemptions/fee-for-not-being-covered/

Share

March is MS Awareness Month, & I’m More Aware Than Ever


By: Jeri Burtchell

I don’t know about you, but life with MS makes “awareness” unavoidable for me. I start the day with a symptom check, happy when I can make it out of bed and put one foot in front of the other. As I progress through my day, I’m constantly reminded of MS at every turn. It might be the alert on my phone that reminds me to take my medication or a check-up for the clinical trial I’m in. It may even be my drop foot that trips me up and sends me into a catbox face plant. And every once in a while it’s a wistful sadness as I take stock of all this disease has robbed from me. I try not to dwell on things I can’t change, but still I am “aware”.

March is MS Awareness Month–when we draw others into our world, giving a glimpse into what our new reality has become, in order to build understanding and compassion. Very few of us who have MS need our own awareness raised.

Sometimes sharing with family and friends can be awkward. I catch myself feeling like I’m whining or complaining when really all I’m trying to do is explain what life with MS is like. Just trying to raise awareness. Sometimes I close up and choose not to share, simply because it means I’m forced to think about it myself when that’s the last thing I want on my mind.

But during March I feel an obligation to “do my part”. I want more heads nodding in understanding than noses wrinkling quizzically at the mention of “multiple sclerosis”. I want more people saying “guess what I heard about a new breakthrough for MS!” The only way that’s going to happen is by all of us sharing our stories, or drawing people in somehow.

We might not have an ice bucket challenge on our side, but there are things we can do besides just posting pictures of awareness ribbons. And there are ways to work in a little levity so people aren’t just awkwardly trying to move on after your conversation has left them feeling sorry for you, or worse, confused. I’ve been giving this some thought and here are some ideas I’ve come up with…

If you’ve lost sensation in your hands, you could ask your friends to put mittens on and try to make it through their morning routine (all except for shaving or pouring coffee, maybe). Tell them you can’t feel things or control your movement as well as you once could. For some people with MS it feels like wearing gloves or mittens.

jeri blogOr how about a “Sit-N-Spin for MS”? Do they still make that toy? Get grown adults to challenge each other to spin like crazy while someone takes a video. When they get up to walk they’ll be walking like we do with MS, stumbling around and bouncing off walls.

When others are forced to experience things that closely resemble symptoms of MS, sometimes they are profoundly moved. “I get it, now!” is something I hear a lot.

If your family and friends aren’t up for the MS experience, maybe recording your thoughts on living with MS in a video would help. Things that are hard to say face to face can be easier to share in a video sometimes. Healthline.com has launched a campaign called “You’ve Got This!” where those with MS are encouraged to submit a video of their experience, giving hope to the newly diagnosed.

Each time you share your experience, whether with your friends at home, through posts on social media, or even videos enlightening and encouraging others, you are building awareness and drawing the attention to the bigger picture.

To end this disease we’re going to need a lot more research, and that means a lot more funding. When people understand how MS can impact our quality of life, the awareness spreads. When you use your own story to engage others and spread the message, it can be a very empowering experience.

Not only will you be helping others to understand what we live with every day, but you will gain so much satisfaction from feeling like you’re doing your part as well. We might not be able to cure MS ourselves, but we don’t have to sit back and passively take what this disease dishes out in silence. Compassion starts with understanding. Understanding comes from communication.

Be the voice of MS, if only for one month, or week, or even a single day this year. You won’t regret it.

Resources:

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

Photo credit: oddharmonic

*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.

 

Share

Spring Awakening

Boy oh boy, what a winter we’ve had this year! There wasn’t a part of the country that didn’t experience some effect of this peculiar and extraordinary season – whether it was ice, snow, freezing rain or just downright frigid temperatures, we’ve all had a taste of the season! I think at this point spring will be a welcomed phase of the year – even though that means some sweltering summer temps are right behind it. But until then, why not take advantage of the weather change (whenever it does occur), and do some things to enjoy the season?

Spring is a great time to get back outdoors after winter’s hibernation; no matter what type of activity, just breathing in some fresh outdoor air can awaken the senses. Traveling, gardening, walking, exercising, riding or sitting outside are all ventures that can be explored during this period. Spring is a good time to clean things out and get organized – to throw away the old and make room for the new in order to help you keep track of what’s needed.

Explore opportunities within your community – there may be different events and activities occurring during spring that you can participate in. It may also help to talk with your doctor about different activities you can do to help with any MS symptom management issues or finding a task that is appropriate for your needs. Every individual has their own preferences and favorite things they enjoy, so the arrival of spring provides a chance to do something new and start the season with novel hope and promise.

What will you do this spring?

Share

Spreading Awareness: Advocating for Client Needs

This week, in honor of MS Awareness Month, I spoke with a group of nursing students at Rutgers University in New Jersey regarding chronic illness and the role nurses play in patient advocacy and referral. This event highlights the importance of spreading awareness and educating those working directly with individuals affected by this disease.

While explaining the various factors associated with MS, we explored a variety of resources available to individuals. Nurses have a unique and valuable role in the medical team – they are often the first person a client sees in a medical team giving them the opportunity to hear and learn the ins and outs of an individual’s life. With this knowledge, nurses have the opportunity to discuss options and make referrals for clients.

It is vital that nurses view themselves as patient advocates and make referrals or speak to the medical team regarding any concerns they may have for the clients care. Some conversations are difficult to have with physicians; clients feel pressure during the short visit and do not get a chance to discuss their concerns. Often times, working closely with a nurse for some of the non-physician or non-medical related concerns can be helpful.

Hopefully the conversation with the nursing students set them up to become better patient advocates in their future roles as nurses!

Have you worked with a nurse for assistance with referrals to organizations or assistance programs? How was that experience for you?

Share

MS Awareness Month: A Chance to Make a Difference!

By: Meagan Freeman

Every March, we have the opportunity to share our own stories and participate actively in spreading awareness about multiple sclerosis. The possibilities are endless, ranging from the MSAA “Swim for MS” fundraiser, MS biking events, MS walks, read-a-thons for our children in schools, and any other activity that might assist in spreading knowledge about our illness. This disease continues to be poorly understood by many, and it is still considered rare, with an incidence of 1 in 1000 in the US currently. The need for awareness has never been greater, and we can all have a hand in educating others. If we each take on the task of sharing information with those around us, knowledge can spread like wildfire.

Many patients find that they are unable to participate in these activities to support MS awareness. Many fundraisers are physical, such as running, walking, biking, and swimming events. Sometimes, the thought of participating in an event like these can be daunting for those with physical disabilities. Some patients might think, “How can I possibly participate in these?” There are a myriad of options for those who may not have the ability to actually take part in a physical event, however.

Fundraising while a family member or friend completes the physical part of the event is a wonderful option. I have had several friends participate in local MS “muckfest” and running events, while I took on the task of raising donations. I helped advertise and share information, while my runner friend completed the event. We managed to raise $2000 together last year alone. No amount of money raised is too little, and no one should feel like they cannot make an impact.

Another option is to spread awareness through blogging, speaking and writing. My personal contribution to MS awareness continues to be my blog. I started this blog with the goal of sharing my own personal experiences with MS in order to educate, and to ensure that no patient ever feels isolated or alone. The simple act of sharing your story may have a greater impact than you ever imagined. The thought of helping others simply by sharing your story is incredible! You never know who needs to hear your experience at that very moment.

Whether you choose to donate to an MS organization such as MSAA, to participate in an MS event, or simply share knowledge and educate through writing or speaking, you can make a difference. If every MS patient takes on the challenge of increasing awareness about our illness, we are capable of making sweeping changes. Let’s work together during the month of March (and beyond,) to increase knowledge, share our stories, and have a personal impact on finding the eventual cure for multiple sclerosis.

*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.

Share

Communicating about Multiple Sclerosis with Young Children

The diagnosis of a chronic illness such as multiple sclerosis (MS) has the capability to challenge a family on multiple levels. As if the diagnosis of a disease such as MS was easy to explain and discuss with adult friends and family members. Explaining the diverse symptoms of MS to a young child is a new challenge all in itself.

Deciding when to have a conversation with your children regarding the MS diagnosis is a personal decision that every family should discuss. Children are by nature, curious individuals. They may pick up that things have changed, or that Mommy or Daddy is acting differently. Depending on the child, some families may choose to introduce information about the disease early on.

MommyStoryMSAA has published two books to help guide families through this conversation with young children. Mommy’s Story and Daddy’s Story are geared for children age’s three to seven, to provide a starting point for future conversations regarding an MS diagnosis.

For on-going supportive information for children, the National MS Society also publishes a newsletter, Keep S’myelin to provide stories and activities regarding different challenges a parent may face with relation to MS.

If a child appears to have a difficult time with the adjustment to a new diagnosis in a parent, it may be helpful to seek additional professional support. A child therapist can help the child to express some of the fears or concerns that they are having. Different modalities such as art or music therapy can help young children who may not verbally be able to explain how they are feeling.

Do you have young children, and have you spoken with them regarding an MS diagnosis? What resources were helpful to you during this time?

Share

March is MS Awareness Month

MSAwareness2015

 (right-click this image and save it to your computer to use on social media)

MSAA recognizes March as MS Awareness Month. Throughout the month, we encourage everyone to increase their knowledge, understanding, and support of individuals whose lives are affected by multiple sclerosis. MSAA is a great place to start to learn more about MS and you can discover the many ways we improve lives today through our vital programs and services.

MSAA offers the following ways to learn and support the MS community this month and throughout the year:

  • With 39 titles and growing, our MSi Video Library contains educational videos and webinars on a variety of topics specifically focused on the MS community.
  • In addition to MSAA’s award-winning magazine, The Motivator, we also offer many publications to educate the community including the recently published booklet, Improving Lives Today! A Guide to MSAA’s Programs and Services.
  • Throughout the year, MSAA hosts educational events for people with MS and their care partners – check out our Calendar of Events to find upcoming programs happening in your area.
  • MSAA’s Art Showcase highlights the amazing artwork created by talented individuals with MS. You can even send an eCard to family and friends featuring the artwork of your favorite artist to help raise awareness about MS.

Interested in helping the MS community?

  • Register today for Swim for MS and help raise awareness and funds that directly support the MS community! Getting started is as easy as 1-2-3! Check out MSAA’s Swim for MS video.
  • Help us spread MS awareness by using MSAA’s “March is MS Awareness Month” badge (located at the top of this page) as the profile picture on all of your social media platforms. Don’t forget to use the hashtag #MSAwareness in your posts!

Thank you for all of your efforts to help spread the word and raise awareness about MS during MS Awareness Month! We greatly appreciate your continued support of our vital mission of improving lives today for the entire MS community.

Share

Runaway MS Train

By: Matt Cavallo

I remember as if it were yesterday: January, 2007. I was sitting in my neurologist’s office after suffering my third relapse in eighteen months. At that moment, I felt that my MS was a runaway locomotive barreling down the tracks and I needed to somehow find the emergency brake.

My neurologist at the time was new to my case because my previous neurologist took a new position as a stroke specialist at a Boston hospital. I was in to see my new neurologist because I needed to switch medicines due to an allergy I had developed to interferon.

Prior to this visit, I had researched a breakthrough new treatment that had only been on the market for six months. This treatment had been voluntarily removed from the market due to unforeseen deaths during clinical trials and had just received FDA approval for a re-launch in the summer of 2006. Despite the risk associated with this treatment, it showed potential to be the emergency brake that I needed to stop the runaway MS train.

I took control of the conversation in my neurologist’s office right away, “Doctor, I have been reading online about the available options now that I can’t take interferon treatments. After comparing the two other options, I want to try Tysabri.”

There was a long, uncomfortable pause. Then he leaned forward and pushed his glasses up his nose towards his brow and said, “Matt, while I appreciate your research there is not enough published data on this new treatment. There were complications during clinical trials. I am not comfortable prescribing this treatment at this time. Not when there is a safe treatment option with a proven track record still available to you.”

I felt like I just took a gut punch and got my wind knocked out. I sat slumped for a minute in disbelief. He leaned back in his chair and continued, “I am going to write you a prescription.”

“Doctor,” I interrupted, “with all due respect, it is my body. I am in charge of what I put into it. This new treatment is showing great promise and I want to try it.”

“Well Matthew, I am not going to write you a script for it. You still have a platform option that may work equally well. Let’s start you on that.”

“Doctor, I am not going to start that treatment until I get a second opinion.”

Now, his demeanor changed. I could tell he wasn’t used to that kind of patient response. He recoiled, “Very well Matthew, if that is your decision I respect your wishes.”

With that, I left his office and after some more research, I found an MS specialist in Boston. I called her office and she said that she wanted to evaluate my case. I just needed a referral from my primary doctor to go and see her. So, I went to visit my primary care doctor and asked her for a referral.

“No,” snapped my primary doctor. “Our doctors, in our system on the South Shore are every bit as good as the ones in Boston.”

No? Why was everyone making this so hard on me? I didn’t understand what I had to do to get the treatment I wanted and was frustrated that everyone in the healthcare system was seemingly against me.

I called up the Boston MS Specialist again and broke the news that I couldn’t get a referral.

“Matt,” said the MS Specialist, “I am going to reach out to your primary doctor directly and ask for a one-time second opinion referral. Then, you are going to come in and see me and we will find you a new primary doctor that will refer you to me.”

This was eight years ago this month in February of 2007. That month, I started that new treatment and applied the emergency brake to my runaway MS train. This eight year anniversary also marked my decision to be my own healthcare advocate. It took a lot of courage to say no to the doctors, but in the end I felt like I took control of my own health. Today, I have great open relationships with my healthcare providers and we make decisions together as a team.

**Disclaimer**
The previous blog is the author’s real life experience and his personal treatment decision. This is not an advertisement for any particular treatment. What works for one person may not necessarily work for another person. Please consult with your doctor to decide as a team what treatment option works best for you.

*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/

Share