The American Academy of Neurology’s (AAN) 65th Annual Meeting took place in San Diego, California in March. This large medical conference presents the latest findings in research and treatments for neurological conditions, including multiple sclerosis (MS). MSAA has compiled important highlights from the meeting in the following article on mymsaa.org: https://www.mymsaa.org/news-msaa/871-aan-highlights-2013
Cindy Richman, MSAA’s Senior Director of Patient and Healthcare Relations, was recently featured on K-LOVE Radio as a part of the Closer Look segment that the station produces. If you missed Cindy’s interview you can hear it here:
https://soundcloud.com/emf-public-affairs-audio/closer-look-klove-wkvp-3-10-13
The Multiple Sclerosis Association of America (MSAA) is pleased to announce its new partnership with SwimOutlet.com, the web’s most popular swim shop, to help promote the charity’s national fundraiser, Swim for MS. Serving as the distribution sponsor for Swim for MS, SwimOutlet.com will feature promotional information and ongoing updates on swim events through newsletter articles, targeted email campaigns, and posts on social media including Facebook and Twitter.
Supported by national sponsor Genzyme Corporation, Swim for MS is a unique fundraiser in which volunteers are encouraged to create their own swim challenge while recruiting online donations from supporters. Swim challenges can range from swimming laps for pledges to jumping cannonballs for cash. Swim for MS appeals to swim enthusiasts of all ages, social and community groups, students seeking volunteer service hours, and families enjoying their backyard pool. For more information and to register, visit SwimforMS.org.
“We’re incredibly pleased to support the MSAA by spreading the word of their Swim for MS initiative,” said Rob Penner, VP, Sports Marketing at SwimOutlet.com. “Together with the help of the aquatic community, they can continue to improve the lives of the MS community through their wide-range of services and programs.”
Adding additional awareness and excitement to the fundraiser, MSAA has enlisted the volunteer support of four-time Olympic gold medalist Missy Franklin to serve as the Swim for MS Ambassador. Franklin is featured in a series of flyers, brochures and a new national television public service announcement, encouraging individuals to participate in this exciting fundraiser which supports vital programs and services for the multiple sclerosis community. Starting in March, MSAA will award the top fundraiser of the month with an autographed photo of Missy, providing the minimum amount raised is $500.
“Swim for MS provides an individual or group the opportunity to combine one’s love of swimming with giving back to the community,” states Franklin. “Start your Swim for MS campaign today and make a difference!”
About SwimOutlet.com
SwimOutlet.com is the largest online specialty store for aquatics in the United States. The online retail store grew out of a dedication to providing the best goods and services to anyone interested in aquatic activities and sports. SwimOutlet.com has the largest selection for swimming, water polo, fashion, beach and surf! In addition to having an extensive selection and the lowest prices, SwimOutlet.com offers phenomenal customer service and fast shipping. The company has won the hearts of over two million happy customers who’ve helped spread the word on where to find the best deals. It has quickly developed into the web’s most popular swim shop! For more information, visit http://www.swimoutlet.com.
My exercising pursuits probably started at age one and a half when my foiled gymnastics routine failed to propel me out of the crib. Already I showed signs of being active and rambunctious and my “antics” did not stop despite stitches from my failed attempt. At age six my mother watched in horror as someone pointed to a young girl, her daughter, about to jump from the high diving board. Finally, at age eight she enrolled me in PAL (Police Athletic League), in an effort to allow me to channel my excess energy constructively.
I continued an active life style throughout my life, until I was diagnosed with MS.
In August of 2009 I was training for my first half marathon when I was diagnosed with RRMS. The diagnosis came as a shock to me because I was not only fit but maintained a healthy lifestyle. The news, was a shock to me and I wasn’t sure how to cope.
After the diagnosis I shut everyone and everything from my life, including running and working out. I could not envision going for a run and collapsing from an MS episode. I truly had no idea what to expect but I had anticipated the worst of what could happen. I couldn’t go to the gym and have my ego remind me of what I could no longer do.
As I struggled with the disease I became increasingly depressed. In the past, running would always assuage any crisis I had to face; I no longer had that outlet to release my depression and frustrations. It was a catch 22 – if I went out for a run I could collapse (in my mind) and if I didn’t I would sink further into an abyss that I had created.
It took months for me to realize that I had hit a wall built not out of mortar but fear and indecision. MS had already proven to me that I would not have the same life that I had enjoyed in the past. So, why could I think that I could easily go back to my “old” form of exercising? Reluctantly I had to give up starting off at the high diving board and had to wade into the kiddy pool instead.
And so as my frame of mind changed so did my temperament and condition. I started jogging slowly, almost at a walk, and much less distance than I was accustomed to. I had no delusions of grandeur, only of building up my courage and stamina at whatever pace I could manage at the time.
I also changed to a gym that had a pool. Swimming was an activity that I had not done since I was a kid. I wasn’t strong but I just wanted to get into the pool and swim a few laps at a time. The warmth of the water me gave me the impetus to stay in longer and achieve a little more each time. There was a familiar and safe emotional sensation that would flood my senses as the memories that I had as a kid, swimming in Puerto Rico and the JCC (Jewish Community Center), would come to the surface.
My legs finally started getting stronger and my attitude shifted to one of jubilance. I became more positive about the future and my life with MS. I realized how much I missed exercising. It had always been such an important part of my life. But more so, the endorphins that were released while I worked out had a positive impact on how I felt.
I also realized that it didn’t take much for me to fulfill the joy that exercising once brought me. It was as simple as exercising with light weights, going for a walk, or aerobic swimming.
I didn’t have to try to set out to break any type of record. I needed to listen to my body when it was telling me that it was as important to exercise my body muscles as it was the brain muscles. If I didn’t use them they would atrophy, as they were already doing. And, when my body was tired I needed to heed and do less.
My “baby step” routine continued until I was finally able to run my first half marathon last year and four months later completed an 817 mile hike through the Arizona Trail.
We all have different compositional make ups. Our MS symptoms are different and so we need to tailor our activities according to our capabilities. Any form of exercise, at our own pace, is instrumental to our physical and emotional and well being.
Please note: If you are looking to start any new exercise routine you should first consult with your physician.
As we begin the new year, many of us will make a pledge to get more fit this year. As we heard from our PT specialist anyone with MS needs enter into an exercise routine with the supervision of a trained professional. With that said I would like to share my experience this summer with adapted aquatics.
This past summer I was able to experience a unique opportunity of an adapted aquatics class at the Shepherd Center in Atlanta, GA. As Swim for MS is a major part of MSAA’s work to enhance the quality of life of everyone affected by MS, and adapted aquatics is often a go-to complimentary wellness option for individuals those living with the MS, I was asked to take part in a local adapted aquatics class at Shepherd Center. Throughout my career, I’ve often recommended aquatic exercise for anyone looking for an exercise or social activity, but ironically I had never taken part in it myself. So on a weekday morning in mid-August, I jumped into the pool with five MS patients and got to work on some really fun and useful exercise techniques.
The class I participated in was for those considered “ambulatory patients” while a separate class for non-ambulatory patients was offered afterward. With adapted aquatics, everyone gets an opportunity in the pool!
The class began with standard stretching, and then leg strides from one end of the pool to the other, on the shallow end of course. During these initial exercises, I was able to get to know some of my fellow classmates and learn a little bit about how they were diagnosed and just what their day–to-day experiences with MS are like.
The class then picked up as we began to use underwater step-stools to exercise our leg muscles, while also utilizing balance techniques, this last exercise was one of the more challenging! . This was the point where I struggled the most. Finally, in the third portion of the class, we used water weights to exercise both our triceps and biceps. It was neat to see how water actually creates greater tension when using the weights than the fairly weightless pieces of equipment create on their own. All the while, I was making great friends of my classmates, talking to them about MSAA and some of our services and helping encourage them at any point of struggle. The look of sheer accomplishment on each class member’s face when they were able to get through an exercise they felt difficult was really inspiring!
In all, this was quite the eye opening experience. The value of these kinds of resources are incalculable. If you happen to live near an area with an MS-specific aquatic exercise class, please make sure you take advantage of it! Beyond just the wellness quotient, you get a chance to make some really good friendships as well!
For more information about aquatic exercise in your area, call contact our Client Services Department at(800)-532-7667, extension 154 or email: msquestions@mymsaa.org.
MSAA is very proud to present our 2012 Art Showcase – celebrating the work of artists affected by MS.
December Artist of the Month:
Angela Bennett – Lexington, KY
“I take nothing for granted, and I live each day to its fullest potential. I have RRMS but my MS is very aggressive, and I became disabled in 2009. Since becoming disabled, I have grown in ways I never once thought possible. I have become a beacon of light, caring and 
volunteering for others when I can, and my empathy and compassion is stronger than it’s ever been.
This acrylic painting on canvas, titled ‘Aneia’, represents my souls awakening and expansion to the person that I am today.”
To View the Complete 2012 Art Showcase Online Gallery, please visit support.mymsaa.org/artshowcase201
To Send an Artist of the Month Online Card for December 2012, please visit support.mymsaa.org/artistdec12
By profession, I am a music portrait photographer running around in such big cities as New York, Los Angles and Austin. By circumstance, I am a 26 year-old who happens to have MS.
That last bit can be a bother, but I like it much better when it isn’t.
Here’s a little bit of the backstory:
In 2009, I was attending Pepperdine University. One day, I ran out of one of my hardest business class finals, and jumped in the car. I had to get downtown to the photography studio to start figuring out how we would engineer this set idea for a really ambitious and rapidly approaching photo shoot. I buckled myself in, turned the radio on and as I shifted my gaze over my left shoulder to pull out of a tight parallel parking spot, I noticed everything double and separate. I rubbed my eyes. The further left I looked, the farther away everything got from each other. I couldn’t tell which the “real” road was and which the “other” road was. I rubbed my eyes again, squeezed them shut and re-opened. There were two pictures of the same world and I could not tell which was mine.
I knew that I was probably not taking care of my body as I should, being a 22 year-old college student (Stress… check; lack of sleep… check; probably not eating enough… check). Off to the ophthalmologist I went for further evaluation. The lens prisms he prescribed to modify my eyeglasses with, only corrected the double vision sometimes. This was not muscular; it was a nerve issue — the plot thickened and we reacted.
A gauntlet of tests ensued that summer: MRIs, EKGs, EEGs, blood work, nerve tests, Spinal tap, antibiotics. I was a healthy 22-year-old, and all of a sudden I was a patient in hospitals, with doctors of every specialty trying to diagnose me.
There were results that pointed to multiple sclerosis (MS), but nothing was conclusive, and some of the results that raised flags were results immediately contingent on other situations that weren’t mine. All other possibilities were diseases too rare, obsolete, or required symptoms I didn’t have and wouldn’t get for whatever reason, so were immediately ruled out. Complicating things further, each symptom that I had on its own were all circumstances perfectly healthy people have all the time.
What happened in my mind after all of this new hospital stuff was full-fledged “western medicine distrust.” I watched chemo ultimately kill my dad four years earlier, and I felt like I knew the hospital/pharmaceutical politics. It seemed doctors were trying to diagnose me with something so hard that they couldn’t pin, that I didn’t believe I had. Hospital bills, drug reactions, spinal tap complications, and anesthesia all followed. I was plugged into the wall, there were needles in my arm, my spine; I was terrified of every result. There’s just something inherently frightening about going this deep into such a thorough search of your complete physical makeup and having to sit back and wait patiently each black-and-white result, over, and over.
The double vision went away on its own after about a week, and I went back to business-as-usual. A second major symptom did not come on until a year later: a numb, tingling sensation from my knees down and in my hands, tips of my fingers. It was then when my doctors agreed; it was time to begin to discuss treatment.
My goals and career to me seemed to all of a sudden be in jeopardy, at the quickly developing and bright-eyed age of 22. The more I began understanding MS and my own new set of circumstances, the more my life slowly began to come into focus.
Thinking back I’m sure there probably were smaller, more seemingly insignificant indicators that could have helped point to the MS sooner, but that’s neither here nor there. What matters is that it’s clear that I have MS, no more tests and questions or unknowns there. Although there is no proven cure, there is a lot that I can do to manage it, which incidentally are all things I should have been conscious of anyway to live a happy and healthy life.
Read on: MS as a Blessing
MS Conversations is the Multiple Sclerosis Association of America’s new blog!
It is our hope that this blog will provide a forum for you, the MS Community, to share your triumphs & struggles, tips, resources, and much more.
We very much want this to be a blog for YOU, so please feel free to leave comments and suggest topics for us to cover in the future!
Just as a reminder that MSAA does have a terms and conditions policy for our website and blog – so be sure to review before posting any comments.
Please check back on Monday and in the coming weeks for updates on the Swim for MS Pool Party, plus more tips and shared stories!
Let’s start the conversation!