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

artist of the month 2_13

 

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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Swim for MS Update

Don’t miss your chance to be a part of the action!

Dive into Swim for MS today!

MSAA is pleased to announce a new prize for participants in the Swim for MS program: beginning in March, the top fundraiser for the previous month will receive an autographed photo of Missy Franklin! (Our first monthly prize will be awarded in March to the participant who has the highest Swim for MS fundraising total for the month of February.)

Missy Franklin MSAA Swim for MS Ambassador

Missy Franklin MSAA Swim for MS Ambassador

Sign up today to begin your Swim for MS and your chance to win an autographed photo of Four-time Olympic gold medalist and MSAA Swim for MS Ambassador Missy Franklin!

About Swim for MS

Swim for MS is a national fundraiser in which volunteers are encouraged to create their own swim challenge while recruiting online donations to support MSAA and the MS community. You can participate individually or recruit other swim enthusiasts to form a team.

Participation as easy as 1-2-3!

  1. Create your swim activity
  2. Set your challenge goal
  3. Recruit online donations

To register, please go to SwimForMS.org. After you complete your registration, select “Access your Participant Center Now” to create your online fundraising page! To inspire you, please check out our Swim for MS Profiles for examples of how to create your Swim for MS challenge

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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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Send an MSAA Holiday Card to friends and family

Send an MSAA Holiday Card to your family and friendsSEASON’S GREETINGS

To MSAA’s Family and Friends!

We would like to wish everyone a joyous and safe Holiday Season, plus a Happy New Year too! Please join us in spreading our holiday wishes by sending our festive cards to all of your family and friends.

You can choose from a variety of cards for all holidays to match the personality of everyone on your list. By sending a card from MSAA, you are telling others that you take an interest in MSAA’s mission to enrich the quality of life for everyone affected by multiple sclerosis (MS).

The contributions we receive from caring individuals and businesses are so urgently needed. They enable us to continue to provide vital programs and services to the MS community, such as MRI scans, mobility and symptom management equipment, a toll-free Helpline, and much more. We are extremely thankful for the support we receive and the help we are able to give to others.

Send an MSAA online holiday card today and throughout the holiday season!

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MSAA’s Artist of the Month for December 2012

MSAA is very proud to present our 2012 Art Showcasecelebrating 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

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