Social Media and MS

Staying connected while feeling isolated is often difficult. Many living with multiple sclerosis (MS) venture to a local support group or in-person education program to seek out those who are also living with MS, but due to a lack of time, geography and other limitations, these options are not always available.

Luckily, in this new digital age, there are other options that exist through social media. These wonderful tools can help to keep you connected to your local community, and the rest of the world at large.

The easiest and most widely used tool for most is Facebook (www.facebook.com). Everyone is on Facebook – children, parents, grandparents, everyone you went to school with, and beyond! The most relevant part of this tool is that a number of great MS resources have pages including MSAA, local support groups, and even MS treatment facilities.

Another option is Twitter (www.twitter.com). Twitter is known for being the go-to social media outlet for celebrities, politicians, and others in the media. The idea behind Twitter is to push out information in very small bites (140 characters max). Try searching #multiplesclerosis using Twitter’s search function and you will be amazed at the conversations you’ll be able to strike up.

Are you looking for a venue to share your viewpoints or creativity with the world? Or simply seeking a sounding board? Consider Tumblr at www.tumblr.com or WordPress at www.wordpress.com. Both sites allow its users to create and customize blogs to share their feelings and thoughts on a variety of topics that can then in turn be shared with friends via email, or other social media tools like those above.

While these are just a few of a multitude of the new social media tools available, they are four widely used options allowing you to stay connected to the world without ever leaving your home.

You can connect with MSAA on Facebook: www.facebook.com/msassociation and Twitter: www.twitter.com/msassociation

Please also check out MSAA’s YouTube channel http://www.youtube.com/msaalink and Pinterest page http://pinterest.com/msassociation/link.

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Where Did I Put Those Keys?

If you are like many people, fall is considered “back to school” time. This is a time where people get back into the swing of things and probably back to a particular routine (i.e. wake up, eat breakfast/feed the family, get dressed, pack lunch, drive or take the bus to school/work, etc.).

Routines appear “easy” in that they are a sequence of events or motions you need to go through to successfully achieve an outcome. Having a routine may seem like second nature, but what happens when you throw something like MS into the mix? You are juggling symptoms, medical information, doctor appointments, AND you are trying to remember to grab your child’s lunch and look for where you may have put your keys! It is a lot for any one person to handle.

So take a minute and think about your day-to-day schedule. What could you break down into some “easy” steps? What could you make routine? Maybe it involves keeping a list of everything on a dry erase board where you can check steps off as you go, or maybe it is a specific hook by the front door where you can always hang your keys. Having a routine may be one simple way to alleviate stress and make managing all of the things you have to keep track of just a little bit easier.

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Family

“Let us make one point, that we meet each other with a smile, when it is difficult to smile. Smile at each other, make time for each other in your family.”

-         Mother Teresa

 “There is no doubt that it is around the family and the home that all the greatest virtues, the most dominating virtues of human, are created, strengthened and maintained.”

-         Winston Churchill

Sometimes they can drive us crazy. We can argue, bicker and disagree on just about anything. I remember one Thanksgiving where my uncle, who thinks of himself as a turkey specialist, complained of how the turkey looked undercooked. He argued with my mother (the cook) about it all day, and yet continued to eat piece after piece of it even before the rest of the meal was finished. Yes, our relatives can really have their moments. We find that they can be our greatest allies, and yet some days, present us with our greatest challenges. They are family, and as the saying goes, “can’t live with them, can’t live without them.”

But there can be moments of such love and warmth within a family that have the ability to trump unforeseen obstacles, lighten unbearable situations, and bring insight we may have overlooked. At the end of the day we are who we are, and reflecting on the love and support of our “family,” biological or not, can oftentimes help us to face an unpredictable day. Share some of your memorable family experiences and the moments that make you feel loved by those closest to you…

 

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Thank You for Diving into Action this Summer!

Thank you to everyone who participated in this summer’s Swim for MS Pool Party – swimmers, supporters, family, and friends! The generous help and dedication of all involved helped to raise funds to support individuals with multiple sclerosis through the many vital programs and services offered by MSAA.

The Swim for MS Pool Party, part of MSAA’s popular Swim for MS program, took place from Memorial Day to Labor Day 2012. Pool Party volunteers hosted one-day events in their own backyard or community pool – such as swimming laps, doing cannonballs or a game of Marco Polo – and collected pledges from friends and family. A few highlights from this summer’s Pool Party:

Marcus B. from Texas completed 500 jumps in his local pool and raised $100 with his Pool Party.

Jeannie L. in Florida raised over $1,200 by organizing a Synchronized Swim for MS Pool Party for her 50th birthday!

Cody J. of Pennsylvania held a 24 Hour Swim Party and collected over $1,600 to help those with multiple sclerosis.

Coming Soon! Though the summer Pool Party may be coming to an end, be on the lookout for the new and improved year-round Swim for MS, featuring an updated design and easier ways to create, improve, and utilize your Swim pages. Check back regularly at mymsaa.org for more in the coming weeks, or sign up to be the first to know about MSAA’s brand new Swim for MS here!

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MSAA Unveils Solar Panel Array

On Tuesday, September 18 Cherry Hill, NJ Mayor Chuck Cahn was on hand for the official unveiling of a solar panel array that was installed at the Multiple Sclerosis Association of  America’s national headquarters located at 706 Haddonfield Road in Cherry Hill, NJ.

MSAA partnered with Independent Solar of Clinton, NJ to install a 109 kW rooftop solar photovoltaic (PV) system consisting of 444 solar panels that will offset roughly 70% of the electricity used at MSAA’s national headquarters.

The system was installed via a Power Purchase Agreement (PPA) between Independent Solar and MSAA. The PPA is expected to save MSAA more than $146,000 over the next 20 years with zero out of pocket expense.

 

 

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Gratitude

“We must find time to stop and thank the people who make a difference in our lives.”

- John F. Kennedy

 “At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us.”

- Albert Schweitzer

In life, there are many instances where good deeds often go unnoticed and the people who do these deeds can be overlooked. As we live in a somewhat “rushed” and hectic society, there are many moments that tend to slip under the radar as we hurry along to accomplish the day’s tasks. We can often ignore the things in life that are precious and valuable. It is not through personal fault that this occurs; there are simply not enough hours in the day to single out all of the privileged moments we experience.

But what if we did just that? What if we made time to think of all the moments, people, and interactions that we feel grateful for on any given day? Showing gratitude to the people in our lives that we cherish and to the moments that make life unforgettable has the capability to brighten our outlook, and make an otherwise “hectic” day seem gracious and special.

What are some things that make you feel grateful?

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Aubagio™ (Oral Teriflunomide) Receives FDA Approval

On September 12, 2012, Sanofi and its subsidiary Genzyme announced that the United States Food and Drug Administration (FDA) had approved their new drug, Aubagio™ (oral teriflunomide), for relapsing forms of multiple sclerosis (MS). The FDA had accepted their New Drug Application (NDA) in October, 2011. This is the ninth disease-modifying therapy approved by the FDA for the long-term treatment of MS. Of these nine, Aubagio is the second approved medication for MS that is taken orally.

This drug is an immunomodulator that affects the production of T and B cells. It inhibits rapidly dividing cells, including activated T cells, which are thought to drive the disease process in MS. It also may inhibit nerve degeneration by reducing the production of free radicals, possibly decreasing the risk of infections and other complications linked to chemotherapy-like drugs.

Aubagio has been approved in two dose levels: 7 mg and 14 mg. The medication is produced in film-coated tablets and is taken once daily, with or without food. Since the higher dose shows greater effectiveness, this dose may be more frequently prescribed. However, for individuals who may be more sensitive to the drug and experience greater side effects, the 7-mg dose may be more appropriate. The drug is expected to be available beginning October 1st.

To read more please visit the MSAA website.

Please be sure to check back, as the latest edition of MSAA’s magazine The Motivator will soon be available which will include more research news.

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Getting Started

My husband Bob and I started planning the “Big Hike” over a year ago, and while there were many starts and stops we are finally on our way. We spent many months planning the logistics of the hike, securing funds and training. There are so many things to think about. I know that my family has finally accepted my decision. They were concerned about my hiking solo, which not something I would have done, as I know my limitations. Then, there were concerns on being out in the “wild” for such a long period of time (at least two months).  My mom, especially, didn’t realize that wild to me is being back on the streets of New York City. I do love New York but I am so accustomed to being out west that NY was analogous to “wild” for me.

My family has always been behind me, in spite of my seemingly strange adventures.  Moving to Costa Rica; to Italy; studying art; becoming a banker; and a plethora of diverse changes I’ve made throughout my life.

We had a deadline for funding of August 21, 2012. About a week before the deadline I received an email from Liz Mares. She was hiking the Arizona Trail, solo, in September. I immediately reached out to her and asked if she would consider hiking with another hiker.

It turned out that we had a lot in common and our hiking pace was symmetry. Liz is an RN and also an artist. She’s from Ohio, where Bob is from and lives in Arizona now. She had Lymes Disease, and is sometimes affected, and I have MS.

Our fundraising efforts had been slow but gently it was trickling in enough to start us out, with the hopes of donations during out hike (insert link to donation page). To make sure we were able to start the journey, we dug into our own pockets the initial amount needed to begin. While Liz and I will be on the trail, my husband Bob, will be providing support by following us in a supply vehicle and posting up dates on our progress. I am also excited that my dad, of 73 years, will be joining us for three weeks! We’ve also been offered help from Trail Stewards, friends, family, and other avid hikers.  And, my mom’s efforts will be in helping us fundraise, and moral support.

With so many blessings and the support of my loving and also patient husband we can now embark on this journey. Our first day on the trail was September 11.  I will do my best to provide updates through my blog (Hiking for Multiple Sclerosis) and this one provided by MSAA. I hope that you will find my story inspiring and please feel free to comment or leave words of encouragement! I will do my best to respond when I can.

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The “Big Hike”

The idea of the “Big Hike” was mainly conceived to motivate others with MS and bring public awareness to the numerous individuals who are living with MS today. The “Big Hike” is 817 miles through the Arizona Trail, across the entire state from the border of Utah with Arizona to the border of Mexico. We are also hoping to raise $10,000 in support of the programs and services MSAA provides to the MS community.

I am very excited, nervous and passionate about this hike. I have never done anything that is so important and personal.  It will be a long journey through some desolate and rugged terrain during some of the hottest times of the year. This is an area inhabited by snakes, mountain lions and bears to name a few.  And hopefully, we will not have any experiences with any of these wonderful creatures.

Hiking is something that I love to do, and for me, an effective way of getting our message of hope to the 400,000 people in the United States that have MS.

We are all unique in our passions, hopes and aspirations.  My “Big Hike” is meant to inspire courage and resiliency in others.  Sometimes that means redirecting our goals to support our potential. To me, this journey I am taking is just as brave and honorable.

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The Diagnosis

I closed the blinds and sat in my office in the dark.  Stunned, I replayed the doctor’s message over and over in my head: You have multiple sclerosis (MS). What did this mean? From the literature I had been given it could mean that I could be wheelchair bound at some point in the sickness or have another type of physical ailment.  How much time would I have before this could happen?

I couldn’t focus on anything else except my inability to understand how this could be realistically taking place in my life.  I was healthy. I ate well, ran, and exercised.  The last few years of my life had been full of a lot of stress but I was coping by meditating and taking care of myself, emotionally. It didn’t make sense.

I wondered if it could be a false diagnosis. Things like that happened all the time. One of my best friends had also been told that she might have MS because of her development of optic neuritis (O.N.), which often a precursor to MS. But, for her it turned out to be a singular case of O.N.

What was ironic for me was that I had been tested, in Costa Rica, for multiple sclerosis many years before but those MRI’s came back negative. (It turned out to be interstitial cystitis, which the doctors in Costa Rica could not diagnose.)

But, as I sat there mustering even a seed of hope, deep down I knew that this time it had been different. There was the tingling that I was experiencing in my hands and legs as well as the optic neuritis which did not happen to me the first time.

I couldn’t sort out my emotions but I knew I had to find someone who would be caring enough to give me an explanation. It would be one of many times that I would I need a second opinion.

Many of us share the same story when diagnosed with MS. We are incredulous to the news. Some, like I, don’t even know what the disease entails or have not even heard of it. We demand our previous lives.

I went through the bereavement stages. I was angry and mad that this was happening to me. I had gone through many traumas in my life and I was finally at the point of getting my life back in order. And, yet on the brink, three weeks, of my wedding, I was hit with yet another setback.  I was being tested and I wasn’t sure that I would pass this one.

But, thankfully my grandmother taught me resiliency through her trials and tribulations (She was illiterate and raised as a slave in Puerto Rico) I gathered courage and vowed to beat MS.  Yes, I still have MS but it does not have me.  I struggle with mild setbacks but I am cognizant that they are only “mild.”

I will not give up and with this strength grows my yearning to help, motivate, and encourage others who may not be so fortunate.  I thought my passion in life was to become an artist, but now I think it is to empower others with multiple sclerosis, which you will find out more about Wednesday….

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