A ‘Thank You’ to the woman who inspired me

My grandmother frequently told me this story about my mom. When my mom was born she was born “in the surron” (enveloped in a protective film).  Among the country people of Puerto Rico this was a very auspicious occasion because it meant that the child would grow up to be highly intelligent.  Many years later this same endearing grandmother would tell me that our Labrador retriever, Kada, was highly intelligent because he was born with a protrusion emanating from the top of his head. How this one came about, I’m not quite sure.

I wasn’t born in the surron, or with a lump on my skull. As a matter of fact, the only bumps I could remember were the cocotazos (lumps) I used to get, from the nuns in Puerto Rico, when that glassy look would change my countenance as my daydreams infiltrated their lessons. Or, when my brother, Brandon, inspired by Saturday Night Live, would hold me in a head lock and impart some Pizza Man (Bill Murray ), nookies upon me.

Unlike my Mom, I was somewhat shy and awkward as a child and had to fight for any kind of scholastic success.  Even as an athlete, my mom was told that I had 2 left feet and would never be much of a runner. I always felt that I had to work harder, in everything, to reach any sort of proficiency.

Upon being diagnosed with MS I felt like that child being dealt yet another blow. A deluge of emotions overwhelmed me as I tried to understand the implications of the disease and how it would impact my life. How much more could I endure? I had lost my grandmother, gone through a bad divorce and survived a horrific car crash. Just when I thought my life was changing, I was engaged and within three weeks of getting married again, life had dealt me yet another blow.

Depression and sorrow was not what I had expected my new marriage to be full of.  The disease, in addition to medications that made me even more depressed, had paralyzed me into a lethargic, self-pitying coma. I became a dragon in my lair; a recluse who did not want to engage in any social activities that would remind me of the pre MS life that I yearned. The passion that I once held for art, reading, and running were ghost like remnants.

After long months of bereavement I finally understood that I could NOT let MS ruin my life. So with my final acceptance I placed a caveat: I would not let MS beat me.

I meditated, started running and writing again.  I continued my book about my experiences with MS called “Rising with Dignity” (copyrighted).  I also decided, with my husband, to hike 817 miles across the state of Arizona to raise awareness of MS. Yet, more importantly I wanted to help others find the strength and courage, inherently possessed, to overcome our fight against MS.

I was starting to become whole again, confident and courageous in my fight against MS . I still had MS but I would stay grounded and not let its talons swoop me away.  I would become that scrappy child again, fighting for what I believed was just – my right to a meaningful life.

And so even though my grandmother gave birth to a child in the surron it was she [my grandmother] who bequeathed each one of us with intelligence, courage and love.  I thank her for the woman I have become.

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February’s Artist of the Month

Presenting MSAA’s Artist of the Month for February 2013

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MSAA is very proud to present our Art Showcasecelebrating the work of artists affected by MS.

February Artist of the Month:
Mary E. Hetzel-Tingler – Hixson, TN

 “I was diagnosed with RRMS on Valentine’s Day 2006. I have been an artist nearly my entire life and this was quite a blow to be dealt, to not be able to create again. I started spending time daydreaming about the paintings I would do, and something magical happened. I started to visualize concepts, instead of just copying pictures or sitting outside and painting nature, or doing portraits like I did in the past. Even though I couldn’t paint them, I envisioned and captured the feelings and remembered them.

As I got more function back I did the first painting called ”Pitiful Joy” 2006. It was the first painting I did completely from my head, representing my loss of vision and speech, yet a mind alight with music, sculpture and art.”

Be inspired – please send an online card featuring artwork by MS artist Mary E. Hetzel-Tingler and spread awareness of MS and MSAA.

 

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Multiple Sclerosis Association of America Teams Up With SwimOutlet.com To Promote Swim For MS

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.

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Ramapo College Swim Team Dives Into Action for the MS Community

Please take a moment to view this video the Ramapo College of New Jersey Swim Team made for their Swim for MS event! If you are in the Mahwah, NJ area on Saturday, February 2 stop by the college to cheer on the team in their final home swim meet of the season at 2 pm!

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Staying Active with MS

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.

 

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Aquatics and MS

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.

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Hiking for MS – Final Thoughts

I tried to convince myself that I would not cry during my last few steps to the Mexican border, and thus completing my goal of 817 miles on the Arizona Trail. But even after all my meandering through desert, forests, and mountains, lack of uninterrupted sleep and my minimally acceptable hygiene conditions during those last two and a half months I was not hardened to the overwhelming floodgate of tears that swept over me.

I have admitted that I undertook this endeavor in a naïve fashion. I had a purpose in mind and didn’t truly consider the many obstacles that one might face: dropping out of hikers, injuries, maladies, and even getting lost to name only a few.  My purpose was to inspire others and create a national awareness to a disease that I, like hundreds of others, had been diagnosed with. It was my intent to bring national awareness that could impact many lives around the world and, so even my reach was just as ambitious as an 817 mile hike.

Recently I have been asked about the highlight of my hike. I can truly say that there wasn’t any one point that was any more special than any other. The highlights were not necessarily due to my experiences on the trail. Many were due to my interactions with those who opened up their hearts, homes, and selves to us.

Those days when I was privy to walk for an individual with MS were also special times. They were reminders of how we sometimes stumble due to physical impairments and have to find the strength to pick ourselves up each time.

I learned lessons of strength, commitment, and patience as I approached the challenges of each day.

I am thankful to family and friends who supported this hike, and to the MSAA for helping us with our fundraising efforts.

Most of all, I am grateful to all of those who believed that this hike could encourage and inspire those of us who suffer from multiple sclerosis. I thank you for giving me the chance to make a difference.

Seasons Greetings. May this Holiday Season bring blessings and health to all!

Editor’s Note: To see pictures and read all of Shawn’s entries from the trail, please visit her website http://hiking4ms.org/

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My MS Manager

A friend of mine has a little conversational quip whenever we’re stumped; when we don’t know who won yesterday’s football game, what the name was of that guy in the movie we just saw, or where the best place is to grab coffee in Midtown, he’ll say: “If only we had some sort of device that acts like a computer, small enough to fit in our pockets, with advanced search technologies. Wouldn’t that be neat?”

In a world where we have grown accustomed to having quite literally everything at our fingertips, the last and probably most important area that has been lacking is health and medicine. Sure, we have diet and exercise apps, calorie counters and WebMD. But what if we were able to have an app exclusively dedicated to helping manage a condition, disease, doctor’s info, and health records? An app that presents you with current up-to-date news topics and innovations in that field, hospitals, gyms, and local resources plotted out on your smartphone’s GPS exactly where you are, a place to journal and store all your results, symptoms logs and flare-up entries, in order to have more meaningful, detailed visits with your doctor… what a dream that would be.

That app for MS has been realized with My MS Manager, thanks to Ringful Health and MSAA. The first version for the iPhone is already in-use. And now — the app is available to many more people on Android.

I was floored when MSAA told me about the app in our first meeting.  It’s genius!

For me, the app has changed how I live my life with MS. It means that I can live my life with MS.

As an active photographer, often traveling, my routine can so easily get lost in the shuffle. “What day is it?,” I’m often asking myself. Time-changes and inconsistency with sleep and diet can really throw anyone off, especially someone trying to manage multiple sclerosis.

Now that I have the app, I never skip a beat!

Medication is on-time and never forgotten. Catching up on MS advancements, news, and events in my city or globally while I’m sitting waiting for a train, bus or plane is easy. Finding a doctor, hospital, gym, or health food store or restaurant in a new city is as easy as it would be at home. My doctor’s visits are maximized and efficient, leaving us extra time to spend talking about things like how his kids are doing, or what he thinks about a new MS drug or diet approach.

The peace-of-mind that comes with carrying all my relevant MS information with me in my pocket, should I need it in an event or emergency, or just want to find a healthy place to eat while I’m traveling, helps me to free my mind, take a break from MS, and go about my day.

To download My MS Manager for your smartphone please visit www.mymsaa.org/mobile

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MS as a Blessing

What began happening to my life and the way I saw it as a result didn’t surprise me as much as it did inspire me. MS, after all, has helped shape my life and career.

I began looking at everything I did a little bit more carefully. Apart from staying on-track with medication, I began waking up earlier, working out more, going to yoga and swimming, learning new things all the time, reading the news and more books and eating healthier. I went to more museums, parties, social gatherings. I started writing for fun and sometimes getting published. I started taking chances, asking for help, and hearing yes. I was fueled by hope, and by gain, ad hominem, and really didn’t fear losing anything. And that’s how I am right now.

In a way this diagnosis provided the discipline I needed and I know wasn’t getting before. That’s not to say certain things are and won’t be compromised; but as the most important things have come into focus, my happiness has improved suddenly and immeasurably.

The Multiple Sclerosis Association of America (MSAA) asked me to be their first national ambassador in the fall of 2011. Standing in the middle of Times Square, I almost dropped the telephone through the subway grating — a million emotions rushed through my mind. I was feeling honored, fortunate, and inspired. But as with all major decisions, there were a few immediate doubts.

I deliberated it with my publicists and I had a meeting with several members of the staff at MSAA, I thought about it even more, and when I said “yes” to them and to MSAA, my story went public. Press releases, articles, Wikipedia page, etc etc.  Would this mean I miss out on opportunities because people are scared of an unfamiliar disease? Weeding out riffraff clients? I never cared an inch whether people judged me for any reason before, so, why start now.

This position gave my photography – doing what I love most – a whole new personal significance. It spun me around full circle; I was honored that such a big-hearted heavyweight in the fight against MS saw something in me to represent their ideals and speak on behalf of their mission, helping them  reach their goals.

Now I have the clarity of my limitations, sharpening and shaping my happiness. Colors have gotten bright again in the space I move around in, and I have comfort in knowing that when I can drop this one little story in with the oceans already full of them, it’s one more person saying something, and one more friend that knows a little bit what it’s like.

As ambiguous a condition as MS is, we can treat it, help it, acknowledge it, move around in our lives, and be who we are.

One of the best lessons I’ve learned is that I can’t control my circumstance, people, or exterior situations. What I can do is control my reactions to them, and live on. MS of course is far from ideal, but it is true that who I am, now, I’m better for it.

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An Introduction

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

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