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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New Swim for MS Website Launches!

It’s Finally Here!

MSAA has launced our brand-new Swim for MS website! Check it out by visiting SwimForMS.org!

If you haven’t heard, 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.

It’s as easy as 1-2-3!

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

With our new and improved Swim for MS, you will now receive a Swim for MS Welcome Kit (coming soon) in the mail after completing your registration, which includes:

  • One Swim for MS t-shirt
  • One Swim for MS towel
  • 20 Swim for MS wristbands

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.

 

Thank you for your support, and happy swimming!

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Rock Out MS and Sharkfest San Diego

After carefully mapping out the direction of Active with MS, I finally decided the first event I wanted to do to inspire MS patients to be active would be an open water swim and that swim would go to benefit MSAA. After going to a MSAA event in San Diego, I learned MSAA was recruiting volunteers for a swim fundraiser. I grew up a swimmer, I love open water races, it was too perfect to not participate. After looking at the list of local races for the year in San Diego I decided on participating in Sharkfest on October 14th, a race that goes from the San Diego Convention Center to the Coronado Side of the Coronado Bridge, a distance of a little over a mile. While this should be a fun event for people to go to I really wanted to create an additional event that would allow me to meet more new people and have fun with my family and friends. To accomplish this I am putting together a benefit concert on October 12th to serve as the main fundraiser for my swim.

The concert will be at Robbie’s Roadhouse Bar and Grille located at 530 N. Coast Hwy 101 Leucadia, California 92024. The talented Jesse Cox Syn-Drum will be providing live music from 6:30-10:30 and there will be a silent auction. In addition the restaurant will be donating a portion of the money spent on food and drinks to the cause as well. If you are in the area come by and say hi and join in on the fun. I’m really looking forward to this event, I’m expecting a lot of people and I really want this fundraiser to be successful for MSAA. If you can’t make it please still consider donating to my race at

http://support.mymsaa.org/site/TR/Swim1Mile/General?px=1548101&pg=personal&fr_id=1100

MS will never get the better of me, I am determined to stay strong and beat it. I hope you feel the same way. I have MS right now but I still believe there is a chance that one day I won’t. In the meantime I will continue to stay active and create events like these for MSAA and hopefully find more people to join me.

No matter how you help the MS community, thank you. Stay active, Stay positive, Go forth and beat MS.

 http://activewithms.com/

 

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Getting Started

My husband Bob and I started planning the “Big Hike” over a year ago, and while there were many starts and stops we are finally on our way. We spent many months planning the logistics of the hike, securing funds and training. There are so many things to think about. I know that my family has finally accepted my decision. They were concerned about my hiking solo, which not something I would have done, as I know my limitations. Then, there were concerns on being out in the “wild” for such a long period of time (at least two months).  My mom, especially, didn’t realize that wild to me is being back on the streets of New York City. I do love New York but I am so accustomed to being out west that NY was analogous to “wild” for me.

My family has always been behind me, in spite of my seemingly strange adventures.  Moving to Costa Rica; to Italy; studying art; becoming a banker; and a plethora of diverse changes I’ve made throughout my life.

We had a deadline for funding of August 21, 2012. About a week before the deadline I received an email from Liz Mares. She was hiking the Arizona Trail, solo, in September. I immediately reached out to her and asked if she would consider hiking with another hiker.

It turned out that we had a lot in common and our hiking pace was symmetry. Liz is an RN and also an artist. She’s from Ohio, where Bob is from and lives in Arizona now. She had Lymes Disease, and is sometimes affected, and I have MS.

Our fundraising efforts had been slow but gently it was trickling in enough to start us out, with the hopes of donations during out hike (insert link to donation page). To make sure we were able to start the journey, we dug into our own pockets the initial amount needed to begin. While Liz and I will be on the trail, my husband Bob, will be providing support by following us in a supply vehicle and posting up dates on our progress. I am also excited that my dad, of 73 years, will be joining us for three weeks! We’ve also been offered help from Trail Stewards, friends, family, and other avid hikers.  And, my mom’s efforts will be in helping us fundraise, and moral support.

With so many blessings and the support of my loving and also patient husband we can now embark on this journey. Our first day on the trail was September 11.  I will do my best to provide updates through my blog (Hiking for Multiple Sclerosis) and this one provided by MSAA. I hope that you will find my story inspiring and please feel free to comment or leave words of encouragement! I will do my best to respond when I can.

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MSAA’s Artist of the Month – September 2012

MSAA Art ShowcasePresenting MSAA’s Artist of the Month for September 2012

MSAA is very proud to present our 2012 Art Showcasecelebrating the work of artists affected by MS.

September Artist of the Month:

Sheanean Chorette – Beggs, OK

Mystery Solved by Sheanean Chorette

 I was diagnosed a year ago with MS by doctor number 26. I knew something was wrong and it wasn’t just ‘in my head.’ I am strong and determined. My favorite word is ‘HOPE.’ I am a 42 year old wife and mother of 3. I have one grandson.

My love for art reaches back into my childhood. I was a doodler, always doodling on my papers at school. I am self-taught and have improved over time with practice and patience with myself. I teach an art class to 4th graders once a week at our local elementary. I have a passion for nature and art and often merge the two.”

Read more

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

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Presenting MSAA’s Artist of the Month for August 2012

MSAA is very proud to present our 2012 Art Showcasecelebrating the work of artists affected by MS.

August Artist of the Month:

Margie Kapaczewski – Philadelphia, PA

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House on a Lake by Margie Kapaczewski

 

 

 

 

 

 Change in life is inevitable. However, we create time stamps along the way…painting is my time stamp. It is the moment that I become intentionally lost in my thoughts and inspiration. I create my vision and stamp it onto a canvas, a paper, or a piece of material to keep forever.

With MS, memory is a gift…without MS, memory is still a gift. Art is my visual memory where I can reflect on a time with fondness or be triumphant as I was strong enough to make it through.”
Read more

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

 

Right-click here to download pictures. To help protect your privacy, Outlook prevented automatic download of this picture from the Internet.



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Welcome to MS Conversations!

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!

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