Tana Campbell’s Race of Hope – Part 3

By Tana Campbell

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I decided to participate in this half marathon at my son’s urging. It was his idea totally, but it gave me a feeling of worth and something to look forward to. We made MSAA the beneficiary charity since I have multiple sclerosis (MS), and with lots of support we were able to raise over $4,500 to donate to a worthy organization. The race was a test of endurance and perseverance for both my son and I. My greatest fear was having muscle spasms in my leg; but despite the long ride, rough spots, bumps and elevated bridges, I came through the experience unscathed. I had no aftereffects other than being slightly sore the next day, and I was probably in better shape than my son and those that ran with us. It was an enjoyable ride, something I wouldn’t have gotten to do or places I wouldn’t have gotten to see if it hadn’t been for my son’s willingness to push me in this marathon. Like many, I deal with MS on a daily basis with the use of a rollator/walker/cane/wheelchair for mobility. Being able to be a part of regular life was a sense of accomplishment and self-worth, a gift to me from my son. He’ll never know how much his selfless sacrifice means, but it was the greatest gift I’ve ever gotten and I’d do it again if the opportunity presents itself!

Watch Tana’s race video:

Read Parts 1 & 2 written by Tana’s son, Mark:
Read Part 1 of Tana Campbell’s Race of Hope
Read Part 2 of Tana Campbell’s Race of Hope

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Tana Campbell’s Race of Hope – Part 2

Written by Mark Campbell, Tana’s son

Read Part 1 of Tana Campbell’s Race of Hope

On June 1, 2013, we lined up in the back of the running pack surrounded by family and friends. We all wore the same shirts. There were 13 of us (five running and eight cheerleading), all wearing a bright orange shirt with a while ribbon on the chest surrounded by the phrase, “Fight On and Find the Cure! Multiple Sclerosis!” Prominently displayed on the back of the shirt was the MSAA logo along with some other local sponsors. We were ready, nervous and excited. We saw glances from other runners and spectators. But they weren’t puzzled or condescending looks. They were looks of astonishment and admiration. This was our first hint of just the type of day we were destined to have.

The race started and we were the last of over 750 runners to cross the starting line. Spectators were lined up on both sides of the runner’s chute. We heard their clapping and cheering once they recognized what we were doing. We crested the top of a small hill, turned a corner and were out of the sight of our family and friends. We would see them a couple more times during the race as they drove to a strategic location where we would pass at 3.5 miles and again at 7.5 miles.

Over the course of the next three hours we ran mostly on the Capital Area Greenway which follows a creek. It’s a well maintained and beautiful place to be. It never occurred to me just how much my mother would enjoy being on the Greenway. She never knew it existed and with limited mobility (she told me afterward) she never would have considered the option of experiencing it. The Greenway winds along a secluded area away from the traffic and noise of the city. There are interesting sights, numerous footbridges to negotiate and gorgeous scenery along the way. It is also a heavily wooded area that created a canvas of shade and allowed mom to keep cool throughout the race.

As we encountered the water stops along the route we heard more cheers and kind words from the volunteers handing out water and electrolyte drinks. Our route was an out-and-back course, which meant that runners who were in front of us at the start of the race were now coming back toward us. Most of the runners had no idea that we were even participating in the race because they never saw us at the starting line. I cannot count the number of times these runners clapped, cheered, smiled, yelled, waved, pumped their fists, gave us high fives, etc. It seemed like everyone who saw us wanted to acknowledge our participation. I can only imagine what my mother goes through in her mind when she gets out of the house and other people see her at the store or doctor’s office or in a restaurant. But this day, my mother was a rock star! And everyone wanted to salute her.

As we crested the final hill and made the final turn, there was such a sense of accomplishment for both of us. Mine was a physical accomplishment. Yeah, I ran a half marathon while pushing my mother in a wheelchair. But more importantly to me, my mother’s accomplishment was mental. She showed herself and others that she can enjoy life and overcome challenges. After the race was over and we were hanging out with our friends and family at the finish line, I remembered what a friend of mine who also has MS once told me. She reminds herself daily that she has MS, but MS doesn’t have her. The same is true for my mother….MS doesn’t have her.

If this is the only time we ever participate in a race together then I am very happy and will cherish this memory forever. But something tells me that this won’t be the last time. If my mom wants to do it again next weekend I will be there for her….we may be just a little slower though and I’m sure that is alright for both of us.

(FULL DISCLOSURE ALERT:  I did have to ask for help on that final hill from our running support team. It was a long, steep hill and my legs were exhausted. We estimate that they took turns pushing mom in her chair for about a half mile during the race.)

Read Part 3 of Tana Campbell’s Race of Hope

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MSAA’s Artist of the Month for June 2013

MSAA is very proud to present our 2013 Art Showcase – celebrating the work of artists affected by MS.

We have received many wonderful submissions from across the country and are delighted to share their work and their stories with you. Please visit our online gallery to view all of the submissions.

June 2013 Artist of the Month:
Cheryl Vanderloop

"Heaven's Door" by artist Cheryl Vanderloop

“Heaven’s Door” by artist Cheryl Vanderloop

About the Artist:
“I am a 45 year old female that has always had an interest in art. I was diagnosed with multiple sclerosis is 2001. I enjoy drawing, watercolor, acrylic painting, pottery and jewelry making. I’ve found that MS can be unpredictable and through my art, I’ve learned to develop patience and calm my mind. It also gives me hope and helps me be a more positive person.”
Read more

Be inspired – please send an online card featuring artwork by MS artist Cheryl Vanderloop and spread awareness of MS and MSAA.

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Consortium of MS Centers Annual Meeting – Part 2

Today has been an action packed day here at CMSC with scheduled presentation offerings from a wide array of specialists. This morning, I attended an interactive session designed for social workers or nurse case managers in discussing the multidisciplinary approach to many different types of client interactions for approaching difficult situations in practice and MS clinics.

This afternoon I was able to attend a program called “Progressive MS” put on by Dr. Patricia Coyle. Dr. Coyle, provided an overview of the history of progressive forms of MS, their etiology, the diagnostic process and considering potential differential diagnoses, and possible future therapies which are entering clinical trials including studies on:  Hydroxyurea, Amiloride, Lipoic Acid, BAF312, Masitinib, and Fingolimod. You can read about some of these studies in our 2013 Research Update.

Additionally, Dr. Coyle emphasized that in her patients she encourages making sure that Vitamin D and Vitamin B12 levels are normalized, that general health issues including diet and exercise are appropriately managed, trying to have good sleep hygiene, as well as a care plan to best manage symptoms. All of these factors together contribute to a plan for management of Progressive forms of MS.

These two sessions were only a few held this day, with other programs ranging from discussions of “MS Mimickers” and “Long Term Outcomes in MS.” In addition, there was an open poster session which provided an interaction and discussion opportunities about emerging research and abstract papers.

This Consortium is a great opportunity for all individuals involved in the care of MS patients to collaborate and discuss ways to best improve the comprehensive care plan and multi-disciplinary approach to MS management.

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Consortium of MS Centers Annual Meeting – Day 1 Recap

Greetings from Consortium of Multiple Sclerosis Centers (CMSC) Annual Meeting!

Peter Damiri at the MSAA booth for CMSC 2013

Senior Director of Programs Peter Damiri at the MSAA booth for CMSC 2013

This week (May 29- June 1, 2013) I have the pleasure of attending the 27th CMSC Annual Meeting. It is easy to get into the mindset that the MS community is small – after all, it is always mentioned that MS is a rare disease. However, the CMSC Annual Meeting is a great example of just how many people care about issues related to the multiple sclerosis (MS) community – from the neurologists and nurses who practice in the MS clinics, to the social workers, patient advocates, and non-profits dedicated to MS. The CMSC meeting is a reminder that many people have dedicated their lives to altering the future of individuals diagnosed with MS, to try and ensure a better future.

Today (May 29), Dr. Robert Herndon provided an introductory speech welcoming everyone to the conference. He gave an overview of MS called “60 Years of Advancement In MS Management.” He explored just how far research has come since 1950 both in terms of the changes in the diagnostic process, “dogma’s” of the time period about MS, and major advances in treatment. It is astounding to think of just how far we have come even though we have a way to go. The dedication of the professionals in the room was apparent, this is an important cause and one that 1,800 attendees at CMSC believe in.

Of the many other programs available today I was also able to attend an educational session called “Pain in Management in MS” with speakers Karyn Seebach, PsyD and Heidi Maloni, PhD, ANP-BC-MSC. Dr. Seebach spoke about psychological approaches in MS pain management, and Dr. Maloni provided an overview of MS pain management and also the controversial cannabis use in MS pain. Many strategies were discussed including looking at the whole person and treating pain as a complex issue which requires a “biopsychosocial” approach (biological, psychological, and social approach). To read more about MS pain management please see our recent issue of The Motivator.

Tomorrow there are a number of other engaging programs, so stay tuned for another CMSC recap later this week!

Peter Damiri at the MSAA booth for CMSC 2013

Another shot of Senior Director of Programs Peter Damiri at the MSAA booth for CMSC 2013

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Celebrating Memorial Day

The Memorial Day holiday is known by many as the official start of the summer season. Some individuals decide to celebrate the day with a BBQ while others take a trip to the beach to kick off the start of summer. Amidst the fun and celebrations on this day, it is important to reflect and remember what the day represents. It is a time to honor and remember those who have served in the US military; those who fought for our country and dedicated their lives to keeping us safe. We are able to celebrate and enjoy time spent with others due to their courage and valor. So this Memorial Day, during the fireworks and cookouts, think of what you’re celebrating, as it is a day that surely deserves remembrance.

 

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Watch Our New Video on MS Relapses

A Closer Look at The Importance of Treating and Managing MS Relapses
featuring Stephen Krieger, MD

Managing the unpredictability of multiple sclerosis is always challenging, especially for individuals with relapsing forms of the disease. When new symptoms appear or existing symptoms become worse, successful management involves accurately defining the relapse and understanding the best method of treatment.

Recognizing the need for additional awareness on this topic, MSAA is proud to announce the completion of its latest educational on-demand video, titled: A Closer Look at The Importance of Treating and Managing MS Relapses.

Watch the latest on-demand MSi video, A Closer Look at The Importance of Treating and Managing MS Relapses, complete with chapter stops on mymsaa.org

Supported by an educational grant from Questcor Pharmaceuticals, this 40-minute video features neurologist and MS expert Dr. Stephen Krieger of Mt. Sinai Hospital in New York City. In this relaxed, conversational-style interview, Dr. Krieger provides:

  • valuable insights into understanding the signs and symptoms of an MS relapse
  • guidance on when to discuss the onset of a flare up with a neurologist
  • a thorough explanation of the various treatment options including steroids and other medications

The video is now available on the Multiple Sclerosis Information (MSi) section of MSAA’s website and also features a downloadable PDF transcript of the program.

To view this new program, A Closer Look at The Importance of Treating and Managing MS Relapses – with chapter stops during the video – please visit support.mymsaa.org/relapsevideo.

To view all of the informative on-demand videos and archived webinars from the MSi library, please visit mymsaa.org/videos.

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Register for a Free Webinar Presented by TEVA Pharamaceuticals about The Affordable Care Act

TEVA Pharmaceuticals is sponsoring a free webinar tomorrow, May 21st at 1:00 PM EST entitled “The Affordable Care Act’s Health Insurance Marketplaces: Overview for the MS Coalition.”

MSAA is an active participant in the MS Coalition and encourages anyone who is looking for general information on the Affordable Care Act to participate. The program will provide an overview of the new and emerging health insurance Marketplaces as well as MS specific information.

Please note that registration is REQUIRED. Be sure to click the following link: (https://tevausa.webex.com/tevausa/onstage/g.php?t=a&d=794060172 ) to insure your spot in the program.

 

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Dear Diary….

The grown up version of a teenage diary, journaling is a great way to connect your thoughts and tune in to how you are feeling on a daily basis. Although difficult at first, eventually you will find yourself writing page among page effortlessly. Journaling allows us to express our deepest fears, saddest sorrows, and greatest accomplishments in an open non-judgmental format.

Writing quickly frees your brain from “shoulds” and other blocks to successful journaling. If it helps, pick a theme for the day, week or month (for example, love, confusion, change or anger). The most important rule of all is that there are no rules!

All you need is a pen and paper, nothing too fancy to start! Online journaling resources such as Penzu and Penmia can be used for those who may feel more comfortable typing rather than writing. Also in this format, assistive devices can be utilized in order to journal more freely and openly without the struggle of pen and paper. Even a voice recorder or video recorder could assist with journaling!

By journaling routinely you will get to know what makes you feel happy and confident. You will also become clear about the situations and the people in your life. Journaling about stressful events helps you come to terms with them, thus reducing the impact of these stressors on your physical health. Journaling about anger, sadness and other painful emotions helps to release these feelings. By doing so, you will feel calmer and better able to stay in the present.

Tune into yourself. Journaling can benefit individuals with MS, by connecting the mind and body. Journaling about a symptom creates awareness around the symptom; when did it start, what you were doing when it started, and did anything make it better or worse. Symptom tracking through journaling is an effective way to help manage your MS.

Through your expressions you’ll discover that your journal is an all-accepting, nonjudgmental friend. And may provide the cheapest therapy you will ever get. Best of luck on your journaling journey!

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Latest Issue of The Motivator Now Available!

Read about the following topics in MSAA’s latest issue of The Motivator:

Cover Stormotivator winter_spring 2013y:
* The Hidden Symptoms of MS
This article describes some of the hidden symptoms of MS (including pain, fatigue, sleep, cognition, and vision), along with management strategies.
Read the full story

Research News:
* American Academy of Neurology Meeting Highlights
* Tecfidera™ Approved for the Long-Term Treatment of MS
Read the full story

Health and Wellness:
* The Affordable Care Act and You
The Affordable Care Act (ACA) aims to increase the availability and affordability of health insurance for millions of Americans who lack coverage. Beginning in January 2014, this historic initiative will significantly impact a substantial number of individuals with multiple sclerosis and their families.
Read the full story

Already receive a printed copy of The Motivator magazine in the mail? Interested in receiving The Motivator electronically only? Let us know! Please visit support.mymsaa.org/motivatorupdate.

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