About MSAA

As a national nonprofit organization, the Multiple Sclerosis Association of America is a leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a toll-free Helpline; award-winning publications including a magazine, The Motivator; website featuring educational videos and research updates; S.E.A.R.C.H.™ program to assist the MS community with learning about different treatment choices; a mobile phone app, My MS Manager™; a resource database, My MS Resource Locator; equipment distribution ranging from grab bars to wheelchairs; cooling accessories for heat-sensitive individuals; educational events and activities; MRI funding and insurance advocacy; and more. For additional information, please visit http://www.mymsaa.org or call (800) 532-7667.

Highlights from the 2014 American Academy of Neurology’s Annual Meeting


MSAA News Update
Please read MSAA’s article summarizing highlights from the American Academy of Neurology’s (AAN’s) 66th Annual Meeting, which was held in Philadelphia and concluded in early May. Neurologists from around the world attended this exciting conference, where the latest findings in MS research and treatments were presented.

Topics highlighted in this article include:

  • Updates on approved treatments for MS
  • Study results on experimental treatments
  • Medications under investigation for progressive forms of MS
  • Pregnancy information for individuals taking disease-modifying therapies
  • and much more!

Read the full article on highlights from this year’s American Academy of Neurology’s (AAN’s) 66th Annual Meeting

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The Eternal Optimist, or How to Walk a Cat on a Leash

By: Jeri Burtchell

jeri blogI was just 11 when our family lived through a flood that filled our house with mud. When the water subsided we came home to survey the damage. Instead of lamenting over all we had lost, my dad laughed and pointed out that the cat box was still in perfect condition because it had floated all around the house. That was my first lesson in optimism.

His positive attitude was contagious and taught me to find the humor in things no matter how grim the situation.

But when I was diagnosed with MS in 1999 and then we lost my dad to cancer two years later, my eternal flame of optimism started to flicker.

It was hard dealing with the disease, but even harder to find the bright side when my heart was filled with sorrow. Eventually, my dark cloud lifted. I realized that even though I can’t change the fact that he was gone or undo my diagnosis, my happiness is a choice I can control. As Sheryl Jacobson Skutelsky wrote in a great article, “Gratitude equals a positive MS attitude.”

My need to see the bright side of every situation became my coping mechanism. Positive thinking has forced me to step outside my comfort zone to explore new things in life. If you let all of the “what-ifs” hold you back, you will live in darkness where the landslide into sorrow and pity are only one negative thought away.

So every day I try new things. And every day I try to find the humor in something. The two often combine as, (more often than I like to admit), humor winds up being the salve I put on some of my not-so-great ideas when I go trying new things.

Which came in handy when I thought I could walk a cat on a leash despite having never seen it done before.

Tweak is my oldest son’s Flame Point Siamese cat. One day he disappeared and was gone without a trace. Two weeks later he reappeared in my son’s back yard, having spent at least one of his nine lives while he was gone. Tweak was missing fur and skin from his hips to his tail. The vet said it looked like he’d gotten trapped in a fence and ripped his way out. He came home with me so I could nurse him back to health.

Tweak is the most loving, good-natured cat you’ll ever meet. He’d rather sit on your lap and purr than do anything else. Even in pain, he never displayed so much as a fang. He just purred, thankful to be alive.

But Tweak is a former indoor-outdoor cat, and despite his sunny disposition, after a few weeks of being cooped up inside, he started to get cabin fever.

I thought to myself that there must be some way to let Tweak get some sunshine and fresh air. As so often is the case with my “brilliant ideas,” if I listen hard, I can almost hear my dad laugh.

I got a harness made for extra small dogs because, for some reason, they don’t make them for cats. And I got a leash.

Tweak willingly let me strap the harness around him. But once outside, he stood frozen, not knowing what to make of his new surroundings.

You’re probably thinking he made a mad dash and escaped right away. You’re wrong.

No, I was proud that my idea was working as planned. Tweak let me lead him right down the walkway to the yard out front as if he’d been on a leash all his life. He rolled in the grass and soaked up the sun. He purred while I scratched him behind the ears.

We had a moment of pure Zen.

Then the neighbor started his car.

In an instant, Tweak began channeling Houdini. He flopped around at the end of his leash like a trout on a fishing line before one quick duck-tuck-and-back-up move gave him the freedom he craved.

He only got about ten yards closer to the house, when I walked right up to him and picked him up. He was purring, my heart was pounding. I was relieved I hadn’t let my son’s cat escape.

And even though it didn’t go as planned, I can look back and laugh.

My dad taught me lessons in finding humor, and now Tweak is teaching me about being happy no matter what my physical circumstances. The takeaway from both is that attitude is a choice, and I choose to be optimistic.

Even if I have to learn the hard way why you never see cats on leashes.

Resources:
http://contributors.healthline.com/voices/gratitude-positive-ms-attitude

*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.

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Making the Best of a Bad Situation

By: Matt Cavallo

In terms of the heat, spring is quickly turning to summer in Arizona. Daily temperatures are already constantly in the nineties, creeping closer to triple digits every day. As a person living with multiple sclerosis, this is a problem. As the heat levels increase, so does my fatigue. Each day for me is becoming a battle of will and determination to accomplish simple, everyday tasks. My refuge from the heat is to hibernate in my cool, air-conditioned house.

Recently, I was at work and received a call from my wife that I wasn’t expecting. She told me that the central air-conditioner in the house went out. She went on to say that the AC repairman said the motor was dead and the entire unit needed to be replaced. The sticker shock of what a new AC unit costs was another blow, but with my MS, there was also no way I could afford not to replace the AC.

As I hung up the phone, I started to feel defeated and stressed. It always seems that just when I am starting to get ahead, I figure out a way to fall behind. As I reflected on the situation, I realized that it was out of my control. So what was I to do now? There are all kind of events in life that we don’t plan for, and this was a big one. I could let the worry, stress and financial considerations of the situation bring me down into a negative place, or I could look deep inside myself and somehow find the positive.

I decided that I was going to be positive. The AC was twenty years old, too small for the house and a real drain on our energy bill. We had talked about replacing it for years and this situation was forcing our hand. When I put it in my mind that getting a new AC was good for us, the negative circumstances started to change. We had a friend that could install the AC for a reasonable price. The vendor didn’t have the AC unit in stock that we purchased, so for the same price they gave us a bigger, more energy efficient unit. That unit then qualified for a $500 tax credit. The best moment, however, was the joy my four year old received as we watched the crane remove the old unit and then put the new unit on the roof. He was so excited to see the construction that it made me excited to share in that moment with him.

When life throws unexpected challenges at you, how do you handle them? You can choose to be negative or positive. I choose to make lemonade out of lemons and then pour myself a nice big glass.

*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/

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Swim Cap Giveaway – Sign Up to Swim for MS

swim cap giveaway

Temperatures are rising across many parts of the country, and people with and without MS will soon be looking for a way to keep cool or have fun in the summer sun. Therefore, now may be the perfect opportunity to start learning more about MSAA’s Swim for MS initiative.

Swim for MS is a national fundraiser in which volunteers are encouraged to create their own swim challenge while recruiting online donations to support the Multiple Sclerosis Association of America (MSAA) and the MS community. Swim for MS is unique because MSAA does not plan the event – you do! Your fundraiser can be as unique as you want it to be.

Your own Swim for MS fundraiser can take many different forms. Many individuals participate in ongoing Swim for MS fundraisers as well as in one-day events. Some choose to swim outdoors, while others love the convenience of an indoor pool. In addition, many Swim for MS fundraisers involve teams filled with passionate swimmers who all have one goal in mind – improving lives for the MS community. You can see several examples of such fundraisers by visiting SwimForMS.org.

MSAA is also pleased to announce that we are giving away Swim for MS swim caps to every participant who registers for Swim for MS in May! Sign up within the next ten days to receive your official Swim for MS welcome kit, as well as our new Swim for MS swim cap! In addition to the swim cap in May, we have added one more surprise Swim for MS item to registration boxes this month. You’ll just have to register to find out what it is!

Besides the Swim for MS fundraising component, Swim for MS also features an online Aquatic Center, which contains resources for people living with MS who wish to learn more about how aquatic exercise can benefit them. For individuals who may have difficulty with traditional land-based activities, the unique properties of water combined with its cool temperature can create an inviting and sometimes ideal exercise environment for people with MS. Visit the online Aquatic Center to learn more.

Visit SwimForMS.org to learn more

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How do we know if we are doing a good job?

by Kimberly Goodrich, CFRE, Senior Director of Development*

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As the debate continues around ratings, ratios, and watchdogs, nonprofits around the country are focused on how to accurately communicate their value. If ratings do not suitably portray the efficiency of an organization’s operations – then how do we know our dollars are being well spent? What is our impact?

Impact, in the nonprofit world, refers to the change in behavior that is a result of the activities and resources provided. For example, an organization provides a class and information on the health risks associated with smoking cigarettes, and finds that 42 percent of attendees stop smoking, resulting in higher scores on overall health measures at their next checkup. If their mission was to improve health scores by decreasing the number of smokers, then this organization can clearly state this as their impact.

MSAA’s mission is to be a leading resource for the MS community and improve lives today. But how do we measure improvement? And how much improvement is enough? In the previous example, if the smoking-cessation classes improved health scores by 50 percent, this sounds great, but what if they only improved by 5 percent…is that enough? If 5 percent kept that person from having a heart attack, would it then be enough?

The improvement of a life is not easily shown on a graph or a financial statement. Sometimes we need to hear the stories that accompany the percentages and the ratios, the revenues, and expenses. The stories that remind us why we do what we do.

“From the bottom of my heart, I thank you – all of you, for helping me to live independently [through MSAA’s free equipment distribution program]. I put my shoes on by myself!! It has been years since I have done that! Thank you for the leg lifter. It lifted my spirits too!” -F from South Carolina

This is not to say that numbers do not matter. Last year, 1,040,554 people accessed our website for information – 814,776 of them for the first time. That’s a significant number of people who can have their spirits lifted and their lives improved.

MSAA has been able to improve these lives because of an increase in the number of generous donors who support us in this mission. We are incredibly thankful for this growing number of people who, through their vital contributions, experience the joy of creating an impact – and improving lives today!

*About Kimberly

I am the Senior Director of Development at MSAA and have worked in the nonprofit arena for over 15 years. I love reading, running, theatre and the Green Bay Packers. I volunteer with the Disabled American Veterans teaching outdoor sports like skiing and kayaking to injured veterans and find that I receive much more from them than I am able to give.

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I Got a FitBit to Get a Bit Fit

By: Jeri Burtchell

Like that commercial for cassette tapes from the 70s wondered, “is it live or is it Memorex?” I’m becoming unsure of what symptoms are due to my MS, and which ones I would have had anyhow. Now that I’m a quinquagenarian (who knew people in their fifties had a name?), I’m realizing not everything can be blamed on MS.

There’s new research that shows exercise can help MS fatigue which to me seems counter-intuitive. If I can’t even stay awake in the afternoon, how am I expected to exercise?

Inspired by friends who are losing weight and exercising, I have decided to become more fit. My goal was simple: I just want to get up in the morning and not hobble about like a wooden marionette. Maybe stretching and walking would be good for me.

It turns out that I’m one of those people who needs to measure progress and see rewards. I needed a tracker. While researching the various gadgets I happened on FitBit and I fell in love with the Flex. It’s a wristband that tracks steps, miles, calories burned, and even tracks your sleep. It seemed like the perfect solution.

If you are in your fifties and have MS and decide to buy one of these, do NOT leave the default settings in place. The daily step count goal is 10,000 steps. If you’ve never paid attention to how many steps you take in an average day, you’d be surprised, but you might also already know that 10K steps is pushing it for a 50something, otherwise inert person.

The package came on a Saturday so I gathered the kids and we headed off to nearby Ravine Gardens State Park where the azaleas were in full bloom. Criss-crossed with trails for the physically fit, the park is circled by a paved road so you can also enjoy it from the comfort of your Honda. In retrospect, that’s probably where I should have been.

The energy and excitement the kids were feeling was contagious. I was excited to start getting fit by becoming more active and I planned to do it by walking. I knew I couldn’t keep up with their pace however, so I let the kids go on ahead planning to meet back in the parking lot.

This ravine was not new to me. Thirty years earlier I had walked it often when my oldest son was small. I remember pushing a stroller and casually communing with nature. So the sign at the park entrance that clearly stated the drive measured 1.8 miles had to be wrong… or maybe 1.8 miles was nothing, since my FitBit also said I should be able to walk 5 miles in a day.

I started out strong, pacing myself and walking confidently, breathing in the fresh air and appreciating the sun-dappled flowers.

But before long I found myself wilting, and searching out the nearest bench to rest on. That’s okay, I thought to myself, there’s no hurry. I can rest as often as I like.

Soon, however, I was about halfway around the circumference of the park when panic set in. I really didn’t think I could make it out of the park. I dialed my son’s cell phone to let him know maybe he should send one of the many park employees for me, riding one of those golf carts.

His number went straight to voicemail and my texts went unanswered. As usual, he’d forgotten to charge it.

Sitting on a bench I weighed my options. Walk until I fell on my face, stay on the bench until someone came looking for me, or take my time and make slow progress, sitting often on benches along the way.

I opted for the latter. My fun excursion into the world of the fit became a fight to make it to the next bench where I could collapse and wait until my poor legs felt they could try again.

A good two hours after our trip to the park began I finally straggled into the parking lot where both kids ran up to see if I was okay.

That was four weeks ago and since then I have learned a lot. I have learned that while I’m not a teenager any more, I can walk a mile working out to exercise videos. That way, if I get exhausted I’m already home. I’ve also learned I need to listen to my MS.

I may have overdone it that first day in the park, but I haven’t given up. In the month since I started, I have lost almost five pounds, I no longer need to nap, and I have more strength. There’s no denying that my FitBit is helping me to get fit — one little bit at a time.

References:
http://contributors.healthline.com/mind/listen-your-body-msers

*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.

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Latest Issue of The Motivator Now Available for the MS Community

savas2The Motivator is MSAA’s award-winning magazine provided to the MS community and to our generous supporters. Distributed twice per year, this publication addresses the physical, emotional, and social issues that arise with MS, and provides information and support to many individuals affected by this disorder.

We’re pleased to announce that the Winter/Spring 2014 issue of The Motivator is now available to read!

savas

Cover Story:
The Emotional and Psychological Symptoms of MS
… The symptoms of depression, anxiety, and pseudobulbar affect (PBA) are described, along with effective treatment strategies. Important information is also given on how these symptoms affect roles and relationships, sexual function, and self-image.
Read the full story

Feature Story:
…Competitive “biosimilar” drugs may soon be considered for approval. Read about how these “highly similar” drugs may affect procedure, treatment, and cost.
Read the full story

AquaticCenter-Screen

Program Notes:
…Details on MSAA’s new Swim for MS online Aquatic Center are highlighted. This national program initiative supports the awareness, understanding, and availability of swimming and aquatic exercise as a positive wellness opportunity for the MS community.
Read the full story

Read the latest issue of The Motivator

 

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New Year’s Resolution Follow Up

By: Matt Cavallo 

Raise your hand if you have stuck to your New Year’s resolution. Believe it or not, we are a quarter of the way through 2014 and reserving the right to recycle our resolutions for next year. I’ll be the first to throw myself under that bus! Seeing as we are a quarter of the way through the year, I wanted to follow up on some of the goals that I set and challenge myself to recommit to my original 2014 goals.

In January, I wrote that I was carrying about twenty one pounds of extra weight. This extra weight was making my legs weak and numb, my fatigue levels were high, and my clothes were uncomfortable. I resolved to lose twenty one pounds. My thinking was that in addition to my multiple sclerosis, the extra weight was contributing to the weakness in my legs and fatigue. My plan was to eat right, eat less and exercise more.

Eating right is a challenge to me. My line of work has me traveling the country almost every week. Seven out of eight weeks between January and February, I traveled. In fact, I am writing this right now on a flight from St. Louis back home to Phoenix. Between living in hotel rooms and the demands of my job, I didn’t have the strength or energy to get a healthy meal when there was a convenient drive-thru option. These eating decisions were the reason that I was struggling to button my pants!

Despite traveling extensively, I was determined to not have to buy new pants. I made the decision that I was going to lose weight on the road by changing my habits. First, I started with breakfast. The hotels that I stay at always have a breakfast buffet. There is an endless supply of bacon, eggs, toast and pastries. Most mornings I can smell the bacon long before I reach the buffet. As much as it pains me, the first change I made was skipping out of the buffet line and heading right to the yogurt and fruit. This change has been hard for me, and there are some days that I can’t resist a big breakfast, but I find that starting the day on the road with yogurt, fruit and a glass of water can be fulfilling and helps my digestive process.

For lunch, I have also been eating lighter. I work in hospitals, so I generally eat lunch at the cafeteria. The cafeterias generally tempt me with yummy burger, pizza or fried chicken options. Again I hold my nose and walk past temptation to the salad bar. I typically eat a salad and top it with some chicken. In the past, however, I would have smothered my healthy salad with a nice creamy ranch dressing, but lately I have opted for the lighter vinaigrettes. These dressings coat the salad easier, so you use less, and they are typically fewer calories than the creamy dressings I prefer.

These decisions that I make for breakfast and lunch afford me some slack at dinner. While my preference at the end of a long day of work on the road is for a double-stacked greasy drive-thru burger, large fries, and chocolate shake, I have been choosing healthier options. Instead of driving through, I place orders that force me to get out of the car. Instead of greasy, fried goodness, I have also been choosing lighter, grilled options.

The other thing that I am doing is consuming smaller portions. Part of it has to do with the fact that I don’t want to buy new pants, but I have found that once I cut back on my portion size, my body got used to it pretty fast. When I was consistently eating heavy meals, I needed more food. Now that I am eating less, I find that I get fuller faster. I am by nature a fast eater, who in the past would clean my plate before others around me had barely started. I now make a conscious effort to slow down and enjoy the food. By doing this, I don’t always have to clean my plate. Drinking more water throughout the day has also been a daily goal of mine. I found that some of my hunger may have been more related to being dehydrated than actually hungry.

With all of these changes, I have lost eleven pounds, which is halfway to my goal weight. My legs feel lighter, and I am less fatigued. And yes, my pants are now less of a struggle to button!

While I am winning the battle with diet, I am losing with exercise. I have made my annual post-resolution trip to the gym. I worked out, felt great and haven’t been back since! There is a free gym in every hotel where I stay, but I find myself alone in my room catching up TV shows or movies that I can’t watch at home because of the kids. I do tend to take the stairs instead of the elevator and keep true to my daily walks, but I know that I would feel so much better if I could just commit to working out.

So, a quarter into the year, and I am doing OK with my resolutions. I have lost half of my goal weight by making better eating decisions which included eating healthier and having smaller portion sizes. It was a struggle at first, but I feel better only ninety days into this year than I did last year. While I am doing well with diet, I have not followed through with exercise. Much like diet, once I establish a routine, I’ll be used to it and it will become natural. I am not there yet. However, New Year’s is not the only time for resolutions. You can recommit to feeling healthier anytime during the year. Are you accomplishing your resolutions? What are you going to do to get back on track? Invest in yourself because you are worth it, and be the change you want to be.

*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/

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Is There a Relationship Between MS, Allergies and Histamine?

By: Matt Cavallo 

Spring is in the air. So is pollen. With the pollen, my seasonal allergies are in full bloom. I am still sneezing from the last time I stopped to smell the roses. With my seasonal allergies at their peak, I wondered: is there a correlation between multiple sclerosis and allergies?

When I started my research, I was instantly disappointed. All of the initial research pointed to no correlation between MS and allergies. In fact, a 2011 study by the National Center for Biotechnology Information (NCBI) titled, Association between allergies and multiple sclerosis: a systematic review and meta-analysis, concluded that there was no connection between allergic diseases and MS.

While the initial research suggested no direct correlation between MS and allergies, the deeper I dug, a relationship between histamine and multiple sclerosis started to evolve. According to the Encyclopedia Britannica, histamine is a “biologically active substance found in a great variety of living organisms…In an allergic reaction—the immune system’s hypersensitivity reaction to usually harmless foreign substances (called antigens in this context) that enter the body—mast cells release histamine in inordinate amounts.” The definition goes on to explain that the antigens can cause inflammation. After reading this research, my questions became: Does the inflammation caused by these antigens contribute to MS symptoms? And is this partly why I feel worse when my allergies are at their peak?

My questions lead me to research more about histamine and MS. As it turns out there are research studies ongoing exploring the relationship between MS and histamine. A study of histamines and MS on Science Daily found an “unexpected connection between pathways involved in autoimmunity and allergy and suggests previously unrecognized connections between these very different types of immune responses.” The NCBI concluded in a 2013 study, Elevated CSF histamine levels in multiple sclerosis patients, that MS patients had higher histamine levels than the control group and that further exploration was needed.

I am not a scientist, nor am I a doctor. I’m just a guy with MS and bad seasonal allergies. I know that when I feel crummy due to my allergies, that my MS symptoms seem to flare. There are two sides to the argument: one suggests no relationship between MS and allergies, the other suggests that a key immune response to allergies, histamine, may play a role in multiple sclerosis. Until they are able to figure it out, I’m still not going to stop and smell the roses. Hopefully with science and research, one day I will be able to.

Resources:
http://www.ncbi.nlm.nih.gov/pubmed/20456246
http://www.britannica.com/EBchecked/topic/267004/histamine
http://www.sciencedaily.com/releases/2011/01/110131133317.htm
http://www.ncbi.nlm.nih.gov/pubmed/23659456

*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/

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So Long March…

It’s time to say farewell to another month in the calendar year, and for most around the country, a hopeful farewell to the end of winter. It’s been a harsh season for most of the US, so with the end of March we welcome a warmer, though often rain consumed month of April. As we embark upon the end of this busy month, it also marks the end of Multiple Sclerosis Awareness Month, though only formally on the calendar. MS Awareness has the ability to continue the whole year round, and though its promotion in the month of March draws to a close, the MS community can continue raising awareness for the disease throughout the year. Continuing to increase education, advocacy and support for those with MS are some of the goals the community continuously strives for. So while the month of March comes to a close, it brings with it the opportunity to enter a new phase of the year with the same objective: to increase awareness of MS.

March MS Awareness Month calendar Graphic

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