About MSAA

The Multiple Sclerosis Association of America (MSAA) is a national nonprofit organization and leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a Helpline with trained specialists; award-winning publications, including, The Motivator; MSAA’s nationally recognized website, featuring educational videos, webinars, and research updates; a mobile phone app, My MS Manager™; safety and mobility equipment products; cooling accessories for heat-sensitive individuals; MRI funding; My MSAA Community, a peer-to-peer online support forum; MS Conversations blog; a clinical trial search tool; podcasts; and more. For additional information, please visit www.mymsaa.org or call (800) 532-7667.

Creating a Different Kind of Holiday Season When You Have MS:

Posted on December 2, 2013 by MSAA

Now that Thanksgiving has come and gone, it is easy to get wrapped up in the holiday bustle. Many people get so focused on decorating and shopping that holiday thoughts change from decorating enough to feel festive and finding gifts that spread cheer, to the bigger and fancier (and more expensive) the gifts and decorations, the better the holiday.

So, before we all get wrapped up in consumerism, I would ask you to think about creating a different kind of Holiday Season this year. Instead of having said your yearly, “Thanks” on Thanksgiving, carry that idea over into the rest of your holidays by creating a Gratitude Journal.

You might be asking, “What is a Gratitude Journal?”

Several studies have shown that individuals who participate in gratitude-based activities may have an improved sense of well-being. So, I would challenge you to get either a specific journal or notebook (or smartphone app) and assign that as a specific place to write each day one thing for which you are grateful. Try to spend at least 10-15 minutes thinking about what you are grateful for, why you are grateful for it, and how it impacts your life before you write it down. At the end of each week, spend a little time to read over all the things you have written down over the last week.

At the end of the month, reflect back. Has this activity helped to keep you centered and focused during the Holiday Season? If so, this may be an activity to keep up throughout the year, reminding us that Holiday Season or not, upon reflection there are things large and small for which we are grateful.

Thanksgiving Wishes for the MS Community from MSAA

Posted on November 27, 2013 by MSAA

MSAA would like to wish everyone a safe and Happy Thanksgiving! Whether you are celebrating Thanksgiving with family, friends, pets, or in another way, we hope that you have a wonderful day. Please note that our offices will be closed from 2 pm EST 11/27 until Monday December 2^nd.

So let’s get the ball rolling on what we are thankful for and I’ll start:

My Children

Having MS: Alone For the Holidays

Posted on November 25, 2013 by MSAA

By Gayle Lewis, Ph.D.

It seems inevitable that, come the holiday season, which for some starts not just with an actual acknowledged date of “celebration,” but with the first signs of winter’s cold, it’s not the feelings of cheer and joy and brotherly love that abound, but rather feelings of sadness, loneliness and feeling very much alone and isolated. Why? After all, Thanksgiving, Christmas, Hanukah, New Year’s are times of social gatherings, shared rituals and reminiscences. How come we all can’t just hop on board and feel festive and full of holiday spirit? And how come someone who has MS might just be feeling those aforementioned lows more deeply and profoundly than someone who is not struggling with MS’s chronicity?

Multiple sclerosis, whether it’s the more invisible kind or the more obvious symptomatic, renders the sufferer to feel “different” ALL THE TIME. And not necessarily different in the “I am special” way. “Different” in this case often means, “I don’t belong,” “I don’t fit,” “No one gets me or understands me.” And holidays, being a time for gatherings, friends and family, when you already feel like you don’t belong, it can feel more intensely uncomfortable being a joiner because it’s what is expected during holiday season. In addition, the common Norman Rockwell–like characterization of the holidays can seem unreal to people whose families don’t fit the traditional-nuclear-family mold due to circumstances beyond their control, and having MS can exacerbate some of the complications there already in trying to fit into the mold.

It’s been my experience that many family members of people diagnosed with MS have not made an effort to understand their family member’s disease due to fear, disinterest, or distance that existed even prior to the time of diagnosis, and/or the patient actively deciding NOT to tell that he/she has MS. In the latter situation (which happens quite often), whatever holiday loneliness or feeling as if they do not fit, it is due to active participation of the patient with MS. To be sure, I am not blaming the patient for not sharing about their disease. There are often family histories and dynamics that inform that decision…and inform ANYONE’s feelings about the holidays, whether joyful or lonely. But MS IS a lonely disease, even if you tell someone about it, because most patients, at least the ones with whom I work, feel like no one gets it. And how could someone with MS not feel especially alone during the holidays at a time when you already feel like you don’t belong, as per usual anyway?

*Gayle Lewis, Ph.D. is a psychologist and psychoanalyst in private practice in New York City, Associate Clinical Professor, Department of Neurology, at NYU’s Langone Medical Center, and Staff Psychologist at Juilliard’s Counseling Center. Additionally she is a graduate of both the American Institute for Psychoanalysis and the EDCAS program at the William Alanson White Institute. She specializes in the treatment of trauma, eating disorders and individuals with Multiple Sclerosis. See www.drgaylelewis.com

Why I No Longer Fear the Holidays and Why You Don’t Have to Either (Even When You Have MS)

Posted on November 22, 2013 by MSAA

By Jerri Burtchell

When I was a kid I loved this time of year. Snow on the ground, great food (except for that weird Jell-O salad Aunt Mary always made), and presents at Christmas. Things have changed since I was diagnosed with multiple sclerosis (MS) in 1999. Now a sense of foreboding overcomes me each year, right after Halloween.

I’m not the “bah-humbug!” type, but I do hail from a long line of worriers. Maybe we were meant to be “warriors”, but some genetic mutation caused a typo. Now we fear things our imaginations dream up. The “what if” syndrome. My MS diagnosis has elevated my worrying to a whole new level.

Holiday time is prime “what if?” time for me. What if I can’t navigate the busy malls and grocery stores? What if the handicapped parking is all taken up? What if I don’t have enough money to give everyone gifts? What if this fatigue keeps me from enjoying the family I rarely get to see? And the biggest one: What if all this worrying stresses me out and I end up relapsing?

One Christmas, that changed when our family shared what other families keep secret. We all admitted that gift buying was stressing us out. Not only the act of shopping, but the dent it was putting in our pocketbooks. Our name isn’t Trump or even Kardashian. We don’t have money or personal shoppers. What a relief to know we all felt the same way!

So we started something new. When we gather at Thanksgiving now, part of our tradition is drawing names for Christmas gift exchange. We’ve instantly gone from buying gifts for ten to buying for one. Stress diminished. To take it a step further, we can only spend $20. Now the stress was melting like snow in the spring.

Christmas morning is no longer spent in a flurry of mindless paper shredding as we tear through one present after another. But the only ones disappointed are the cats with less cardboard boxes to explore. We still have the experience of gifts under the tree, but now it’s a single, more thoughtful, often handmade gift.

And we quit competing with Martha Stewart for the most elaborate side dishes and desserts. Not everything has to be perfect. We’re enjoying things on our terms, not those set forth in Better Homes and Gardens.

One Christmas I got a late start putting up the decorations. It seems MS fatigue brings out the natural procrastinator in me. So imagine my panic when I went to get the fake tree from the garage only to find it was now home to a family of mice.

I took a few deep breaths and channeled MacGyver. Before you know it, a big vase was the base for my silver, spray-painted Christmas “stick” – a dead branch I’d dragged in from the yard. With a string of lights and a few baubles here and there, the problem was solved. The best part is, it was cheap, handy, and I finally made use of an idea I’d pinned on Pinterest.com.

So in freeing myself from the stress that comes with striving for perfection, the reward I got was more quality time to spend with those I love–the only gift that counts.

Life passes too quickly and before you can say, “Black Friday,” it’s all over. I can safely say I won’t be lying on my deathbed lamenting over all the bargain basement prices I missed out on. It’s the people in my life and the connections we made that will be my fondest memories.

I won’t be stressing over the perfect gift for someone this Christmas, or if I forgot to put the marshmallows on top of the sweet potato casserole…again. I’m going to be counting my blessings in each smiling face that comes through the door.

So forget what the commercials all tell you to do. When you give yourself permission to lower your expectations of perfection, miracles happen. You have lots of laughs, give lots of hugs, and take lots of pictures. Aren’t those the memories you’ll treasure most in the end?

And that gem of wisdom is my holiday gift to you. (It was handmade and cost me less than twenty bucks – Enjoy!)

References: http://www.healthline.com/health-slideshow/pictures-multiple-sclerosis-psychological-changes

*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.

Need health insurance? Join MSAA for our live webinar:

Posted on November 18, 2013 by MSAA

Don’t forget to sign up and attend MSAA’s live webinar, “The New Insurance Marketplace and MS” tomorrow evening 11/19 from 8PM – 9PM EST. The webinar provides the ins and outs of the Marketplace, explaining everything from common insurance terms down to MS specific policy pitfalls. So, register today and come find out what the insurance Marketplace means for you.

2010 – An MS Relapse for the Holidays Part Two – Recovery

Posted on November 15, 2013 by MSAA

By Matt Cavallo

As I sat in an infusion suite chair to treat my holiday relapse, I started to feel really sorry for myself. I wasn’t sure what I had done to deserve this MS fate. I thought about my young boys and how unfair it was to them that their dad was having another relapse. I thought about the additional burden that this relapse was putting on my wife, having to care for two toddlers on her own. All this was happening during the holidays, just two months after I had gone through an anterior cervical fusion. To top it off, I was experiencing these uncontrollable emotional outbursts, or PBA as my neurologist called it, which were embarrassing me to the point of not wanting to go out in public.

Then my thoughts changed. I knew at that moment that instead of feeling bad for myself that I was going to have to reach deep down and pull myself together for my wife and kids. My wife is a stay-at- home mom and I am the sole provider, so I knew that if I didn’t get my act together, our quality of life as a family was going to go downhill and fast. I needed a plan.

Steps to Recovery

Be honest – During this relapse, I had convinced myself that it was every factor besides MS. I let the symptoms go on for too long and they were affecting my home and work life. I was going to have to be honest with myself and others about what I was experiencing and that it was related to my MS.
Reduce additional holiday stress – The holidays add stress to an already stressful life. If I had to go food shopping or present shopping, I would go at off hours like late at night to avoid the stress of a crowd. I made lists to prioritize my tasks and would check items off the list. For a list of more ways to reduce holiday stress, check out Angel’s Holiday Hustle Blog.
Gain control – When my emotions began to get the best of me, I would take a break. MS emotional outbursts can come on at any time. A good way to manage emotional outbursts is to remove yourself from the situation, take deep breaths or find a distraction. My favorite distraction is to walk my dog.
Do not take on too much – I have a habit of overdoing. During the 2010 holiday relapse, I learned to enjoy the simple things. Holidays are about spending time with family and friends;try to relax and enjoy that time without overdoing it.
Talk to your doctor – I waited too long to see my doctor. If you are experiencing symptoms, you should contact your doctor as soon as possible.

As the calendar turned to December in 2010, I was feeling like the worst was over. The medicine had run its course. I was feeling back to my normal self. Gone were the emotional outbursts, weakness and fatigue. I was back to normal at work and home life now returned to the joy of watching my boys. I didn’t bother with the stress of trying to compete for deals on Black Friday or hanging Christmas lights from the rafters. Instead, I realized that the true meaning of the holidays was to be there in good spirits for the ones you love. As Thanksgiving 2013 approaches, I am thankful for everyone in my life and continue to enjoy simple stress-free holidays with the ones I love.

Happy Thanksgiving, everyone!!!

References:

https://msaablog.wpengine.com/holiday-hustle-and-bustle-tips-for-people-living-with-multiple-sclerosis/

http://www.healthline.com/health-slideshow/pseudobulbar-affect-multiple-sclerosis

*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/

2010 – An MS Relapse for the Holidays Part One – Relapse

Posted on November 13, 2013 by MSAA

By Matt Cavallo

In November of 2010, I was still recovering from neck surgery. My neck had been a problem since 2005, when Transverse Myelitis made my spine swell up. The swelling pushed my vertebrae and discs out of alignment. Eventually, just the stress of daily activities caused a piece of vertebrae to fracture causing severe stenosis of the spine. My neurologist told me that if I didn’t consider surgery that there was a pretty good chance that I might become quadriplegic.

I worked for a Neuroscience clinic at the time and was friends with the neurologists at the clinic. I had them each independently look at my MRI films. All of them agreed with my neurologist- surgery was inevitable. I had my cervical spinal fusion surgery in early September of 2010. In order to prepare for the surgery, I had to stop taking my MS medicine. I was also instructed to stay off my medication after the surgery while my body was recovering. During my recovery period, I became less concerned with getting back on my medication and continuing treatment. I had hit my breaking point, and I just didn’t feel like fighting anymore.

As the calendar approached Thanksgiving, I started to become symptomatic. I hadn’t been on any MS treatment for ninety days and was noticing increased fatigue and weakness. At the time, I attributed my symptoms to working fulltime while enrolled in a Master’s program along with raising two boys, ages three and one, who weren’t exactly allowing for a full night’s sleep.

While the weakness and fatigue were troubling, I also started experiencing uncontrollable mood swings. I would break into hysterical laughter at inappropriate times and then break down and start crying and become inconsolable. I am not a person who typically shows intense emotion, so these kinds of outbursts were completely out of character for me.

Still, I didn’t think that anything was seriously wrong with me. I thought that the lack of sleep with a teething one-year old coupled with my ongoing recovery from spinal cord surgery was why my emotions wer running rampant. Then I started forgetting tasks at work that I typically would complete automatically. I was also dragging my leg and having problems with vision in my right eye.

During the week of Thanksgiving, the clinic was slow. The nurses had become worried about me. The day before Thanksgiving, we had very few patients and my practice manager called my neurologist and got me an order for an MRI. I was resistant. I attributed my symptoms to the stress that I was experiencing at work and at home, saying that having to prepare Thanksgiving dinner tomorrow was the cherry on top of the cake. Still, she persisted and took me over to radiology at the hospital and got me a follow up appointment with my neurologist the following Monday.

My MRI studies came back with my lesions glowing like lights on a Christmas tree. I was defeated. When was MS going to let up? Now, I had to tell my wife on the day before Thanksgiving that I was having yet another relapse. However, when I talked to her about it, instead of crying, I started to laugh uncontrollably. During Thanksgiving dinner with her family, I was having emotional outbursts and crying about how beautiful the Turkey and potatoes looked. After dinner, Jocelyn talked to me and she wanted me to talk to my neurologist about my emotions, along with my other symptoms.

That following Monday, I found myself in the familiar chair of my neurologist’s office. He confirmed that I was having a relapse. He prescribed three days’ IV Solu-medrol to help with the exacerbation. I told the doctor that I was having these weird emotional outbursts and was concerned that the IV steroids would further complicate my already emotionally unstable state.

He told me that it sounded like I was having something called Pseudobulbar affect or PBA. According to a Healthline article, “Pseudobulbar affect (PBA) is a condition in which you suddenly start to laugh or cry. The reaction isn’t triggered by anything—like a funny joke or sad movie. You just burst into laughter or tears without any real cause, and you can’t stop laughing or crying.” He wanted to stay on course with the treatment because the PBA seemed to be related to my MS relapse, but to call him if I started to feel out of control.

Tune in for my next blog to find out how I was able to recover from my holiday relapse and strategies I used to gain control of my emotions and stress levels.

Reference:

http://www.healthline.com/health-slideshow/pseudobulbar-affect-multiple-sclerosis

MultipleSclerosis.net is Proud to Partner with MSAA

Posted on November 11, 2013 by MSAA

Recently, MSAA has partnered with MultipleSclerosis.net, and now we’d like to offer them a warm welcome. Since we first met the MultipleSclerosis.net staff, we have consistently been impressed with their willingness to share in our mission of improving lives today. Last week, we had the opportunity to detail our programs and services to their community. Today, we are pleased to introduce them as a regular contributor to our MS Conversations blog.

MultipleSclerosis.net is intended to provide thoroughly-reviewed and accurate information to people with MS and their caregivers, and we invite you to read more about it in today’s blog entry. We hope you’ll find their platform as empowering and educational as we did.

Launched in March of this year, the website MultipleSclerosis.net has rapidly grown to become one of the largest and fastest growing websites dedicated exclusively to Multiple Sclerosis patients and caregivers. We are happy to partner with MSAA to give a broader reach to the excellent work that MSAA does every day to improve the lives of people impacted by MS, and we look forward to being a regular contributor here.

Produced by Health Union, LLC, the company that also develops Migraine.com and RheumatoidArthritis.Net, MultipleSclerosis.net features hundreds of pages of fully-referenced original content on such topics as understanding the basics of MS, to more advanced topics like diagnosis, symptoms, treatment and an overview of MS Research. The site also features forums where users can discuss a wide range of topics specific to MS.

In addition to this in-depth content, MultipleSclerosis.net has assembled a diverse team of patient advocate bloggers; people with MS and/or caregivers of those with MS who write frequently on real-life topics related to their lives with MS. How it impacts them personally, how it impacts their relationships with others, and stories of their own personal trials and tribulations of a life with MS.

Lastly, MultipleSclerosis.net runs polls and surveys on the site. On survey, “MS in America” was an in-depth survey taken by over 3,000 MS patients. We asked participants of the MS in America study about their early experiences with MS symptoms and diagnosis. A majority of survey participants first experienced MS-related symptoms (including symptoms that were later identified as being related to MS) in their 20’s or 30’s. Still, most respondents were not diagnosed with MS until almost a decade later.

This is just the tip of the iceberg; further results of the MS in America study

are posted on MultipleSclerosis.net and we will continue to conduct large patient surveys to further enhance the understanding of the impact of MS on people’s lives.

So in the future, we will be bringing highlights from our polls, surveys, stories and blogs here to share, but first we wanted to introduce yourselves and welcome you to join the MultipleSclerosis.net community. We look forward to contributing here.

How does MSAA improve lives for the multiple sclerosis community?

Posted on November 1, 2013 by MSAA

Last week, we shared an infographic with our supporters showing just a few of the ways MSAA improves lives for the multiple sclerosis community. Today, we wanted to post that infographic again in case you missed it.

But we wanted to start by posing a question: What, exactly, is a “good” charity?*

There has been a lot of talk recently about good charities and bad charities. News reports have focused on charities that do little, if anything, to help alleviate social issues…and on companies who profit from the increasing need for funding to ensure missions are fulfilled. The nonprofit world is buzzing with words like “expensive ratios,” “ratings,” and “overhead.” The result: We are now taking a new look at what being a good charity really means.

How can your donation improve a life today?

As an organization, MSAA welcomes this conversation. We believe in using our resources efficiently to best serve the needs of the MS community. We have worked hard over the years to streamline our processes and improve our program delivery.

In addition to the wealth of information and support MSAA provides, for those who would be unable to afford equipment or MRI scans on their own, MSAA’s programs make a tangible difference in day-to-day quality of life. This is attested to time and time again in the unsolicited tesmionials of our clients.

*Excerpt from “Thoughts about Giving” in MSAA’s magazine The Motivator (Summer/Fall 2013)

Also made possible through the help of our supporters…

1,040,554 visits for vital information through our website

About 215,000 MSAA publications distributed to provide information and support

66,596 views of our 36 on-demand video programs

7,174 new downloads for MSAA’s smartphone app, “My MS Manager”

Donate now and improve a life today.

“Thank you so much for getting back to me so soon! After over two years of waiting and being passed off [by other organizations], my MRI is scheduled for a couple of hours from now! Thank you!” – Jordan R. from Colorado.

Improve a life today for someone like Jordan.

The Multiple Sclerosis Association of America is a leading resource for the entire MS community, improving lives today through vital services and support.

Improving Lives Today!

Free Halloween E-Cards: A Special Treat from the Multiple Sclerosis Association of America

Posted on October 31, 2013 by MSAA

Boo! It’s October 31st, and MSAA would like to wish the entire MS community a safe and fun-filled Halloween.

Want to send your loved ones a similar wish?

For your enjoyment, we’ve created four free e-cards to let your friends and family know you’re thinking about them while also helping to spread awareness of multiple sclerosis and MSAA.

Click here to send a card.

Now Available from the MS Community from MSAA…

MSAA is also pleased to announce the launch of our new mobile website, allowing users to have on-the-go access to many of the resources currently available on MSAA’s desktop website. The mobile website is another example of how MSAA continues to develop initiatives to improve lives today for the entire MS community.

You can find the mobile version of MSAA’s website at www.mymsaa.org on your iPhone, Android phone, or other smartphone.

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