Getting Off to a Good Start

Posted on May 11, 2015 by Samantha Schech

There’s a philosophy about first impressions that states within a few seconds of meeting an individual we can evaluate who that person is and create an instant opinion about that person. As a social worker, I have never really understood that philosophy. Sure, by evaluating body language, tone of voice, or physical appearance we can get a sense of the person and what they may be experiencing at that moment. But it is not fair to cast judgement and say that the way a person presents in that moment is who that person truly is.

Isn’t everyone entitled to a bad day? It is impossible to be on point every moment of every day. The same can be said for individuals with multiple sclerosis. Individuals with the relapsing forms of the disease who experience periods of heightened symptom activities will experience good and bad days. Are you just supposed to stay out of the public’s eye during those bad days with fear of being judged in that moment?

As a society, we need to be more forgiving and open to learning about an individual before making a snap judgement. MS education can play a valuable role during this period. While an MS diagnosis does not define an individual, offering more information about how you are affected may help in providing some sensitivity and awareness to others about living with chronic illness.

As an individual, how do you come back from a bad day and present yourself again?

My MS Journey

Posted on November 21, 2014 by MSAA

By: Matt Cavallo

As an author and speaker, I have had the privilege of meeting people living with multiple sclerosis at MS events across the country. One of the ties that binds us is that we’re all different. Sure, we experience similar symptoms, whether they be vision, balance, memory related, or other, but each of our journeys is unique.

Whether you are just starting out as recently diagnosed person living with MS or are a seasoned traveler living with the disease for many years, there is a website available with resources to help assist you on that journey, My MS Journey.

My MS Journey organizes MS resources in a central location to help assist you with where you are at in your MS journey. The resources are categorized in an easy-to-use, searchable format. The following blog is step-by-step instruction of how to find information on the site.

5 Steps for Navigating My MS Journey

Let’s say for example that you were newly diagnosed and wanted a resource on how to talk to family and friends. My MS Journey can help using the following steps:

1. Enter the following link into your internet browser: https://mymsaa.org/journey/
2. Click on the picture or heading for your particular journey, in this case Just Starting Out:

3. Click on the section header to expand the section, and then click on the hyperlink to open the resource that you would like to select.

4. A new browser window will open up displaying the resource information that you were seeking.

5. When you have finished accessing the information, you can either close the tab or click the My MS Journey tab to return to the main site.

Additional Functionality
While My MS Journey is categorized into sections with content and resources to assist you in each step of your journey, the home page of My MS Journey has additional functionality relevant to everyone living with MS.

A. Site Preferences – allows you to control your font size preferences, access keys, and print options to make the site more accessible for you.
B. Helpful links – these links provide tools and resources to help you better manage your MS, like the MS Resource Locator and Prescription Assistance Programs.
C. MS Trivia – impress your friends and family with how much you know about MS by participating in the trivia section. Once you make a selection, the right answer will be displayed along with how others answered.

The front page also allows you to share this site on social media. Sharing this site is important because of all the great resources provided by MSAA to help each one of us living with MS on our journey. Sharing resources that help each of us on our journey helps strengthen the MS community. Thank you for reading and I hope you take advantage of all the great resources that MSAA and My MS Journey have to offer!

*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/

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

MS Education – A 2014 Resolution

Posted on December 9, 2013 by MSAA

By Matt Cavallo

I have been living with Multiple Sclerosis for eight years now. I have not had a major relapse since 2010. Today, I am living the life that I always wanted despite having MS. I am able to work fulltime, have a loving home life with my wife and kids and participate in activities like coaching my son’s baseball team. One of the reasons that I believe I am doing well battling this disease is because I am always seeking to increase my education and understanding of the disease.

Understanding Multiple Sclerosis and all the available options for chronic illness management is paramount to being successful despite having MS. Now, more than ever, the landscape of available options is changing due to advances in medicine and tireless research. Educating yourself on the MS pipeline will make you better equipped to continue your fight.

So, where should you go for resources? Your first and best resource is your neurologist. Each MS patient is different and your neurologist knows your story better than anyone else. I see a neurologist who specializes in Multiple Sclerosis and stays up to date on all the latest MS breakthroughs and research studies.

Second, get involved in community events. Patient education events are held all over the country and have excellent information for patients. For example, the MSAA has a calendar of community events. Other organizations like the National MS Society or pharmaceutical companies also hold similar patient educational events.

Third, seek out evidence-based printed material. The Internet can be a great source of information, but how do you know that what you are reading is coming from a credible source? I frequent support groups on Facebook, Twitter and other online outlets, but how do you know that the information that you are receiving in those groups is valid? Sadly, there is a lot of misinformation on the Internet and social media sites. Listening to advice from unreliable or irresponsible sources can actually be detrimental to your health. My favorite online reference for MS is Healthline.com, “What do you want to know about Multiple Sclerosis?” This is a one stop shop to get high level information on the cause, types and treatments for MS.

Another publication that I love is The Motivator. The Motivator is published twice a year by the MSAA and covers vital issues for people living with MS. You can have the print version of The Motivator mailed to you or read it online.

Staying educated about Multiple Sclerosis will put you in a position to live well despite your condition. Taking advantage of the resources available to you will ensure that you are up-to-date with the latest, most accurate information. Establishing an open, honest and trusting relationship with your neurologist is vital to your overall health. They should be your go-to before making any health-related decisions. Patient events and literature can provide you with useful information as long as they are from credible sources. If your resolution for 2014 is to take control of MS then it all starts with educating yourself on how to fight the disease.

Happy Holidays Everyone!

Resources

http://support.mymsaa.org/site/PageServer?pagename=Calendar_of_Events

http://www.healthline.com/health/multiple-sclerosis

https://mymsaa.org/publications/motivator/

Greetings from the Northeast! An Update from Multiple Sclerosis Association of America Northeast Regional Director

Posted on August 30, 2013 by MSAA

By Lauren Hooper

Greetings from your Northeast Regional Director! As summer begins to wind down and fall approaches, MSAA has a few educational programs lined up in the Northeast Region, and I hope you’ll consider joining us if there are any coming up in your area.

On Tuesday, August 27^th, I traveled to Morristown, NJ for a program on symptom management in MS that focused on helping patients to identify the overall range of MS symptoms (especially symptoms with treatment options available) and how to best address them with their professional care team. Dr. Mary Ann Picone from Holy Name MS Center was the guest speaker, and she made sure to answer every attendee’s question during the Q&A session. It was such an interactive program, and as everyone was leaving, a few people stopped to tell me how nice it was to be able to talk to a physician outside of the clinical setting. Everyone seemed relieved to have had all of their questions addressed, and I was thrilled that they benefited so much from the program.

In September, my travels will take me to Maine, Massachusetts, Vermont, and Maryland. On September 14^th, I’ll travel to Bangor, ME for a patient program on “Tackling the Everyday Challenges: Recent Breakthroughs in MS Symptom Management & What’s to Come” (support.mymsaa.org/Bangor). On September 21^st, I’ll be in Braintree, MA for a program designed for parents and children to help build a better understanding of MS, called “Bridging the Communication Gap between Parents with MS and their Children” (support.mymsaa.org/DBBraintreeMA). On September 25^th, I will head to Burlington, VT for a patient program on “Cognition in Multiple Sclerosis” (support.mymsaa.org/Burlington). And I’ll wrap up September in Baltimore, MD on September 28^th with a patient program focusing on the African American experience with MS entitled “A Closer Look at the African American Community and Multiple Sclerosis” (support.mymsaa.org/Baltimore).

Later this fall, I am also planning on holding programs in Pennsylvania and New Hampshire, and I hope to get back to New York before the end of the year as well. If you don’t see a program in your area, please keep checking our Calendar of Events (support.mymsaa.org/calendar) regularly, as we are constantly adding new programs. I hope to see you at a program soon!

* Lauren Hooper is the Northeast Regional Director at MSAA.

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