About MSAA

The Multiple Sclerosis Association of America (MSAA) is a national nonprofit organization and leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a Helpline with trained specialists; award-winning publications, including, The Motivator; MSAA’s nationally recognized website, featuring educational videos, webinars, and research updates; a mobile phone app, My MS Manager™; safety and mobility equipment products; cooling accessories for heat-sensitive individuals; MRI funding; My MSAA Community, a peer-to-peer online support forum; MS Conversations blog; a clinical trial search tool; podcasts; and more. For additional information, please visit www.mymsaa.org or call (800) 532-7667.

Summer Travel Tips for Flying With MS: Part 1

By Jeri Burtchell

Summer travel by air with multiple sclerosis doesn’t have to mean anxiety and exhaustion. With a few tips your journey can be smooth sailing. Here are some timely tips gathered from MS patients who travel frequently.

Before you leave home, search the internet for your destination to learn about the terrain you’ll be visiting, the weather, and your hotel’s amenities. You can even use Google Maps’ Street View to plan your excursions ahead of time. Having an idea of what to expect allows you to design your trip for maximum comfort. Likewise, when making hotel reservations, ask for an “accessible” room. They have more grab bars in the bathroom, and often lower toilets and sinks, wider doors. They are usually located closer to the elevators or on the ground floor.

When booking your flight, request a wheelchair. Even if you don’t use one at home, it makes conquering an airport much easier. Not only do you conserve energy and stave off travel fatigue, but the assistants who push you know where they are going and can get you there quickly–helping you catch connecting flights with ease. If you have a cane, bring it. Like a red flag, canes signal disability and airline staff go out of their way to assist you. No matter if you are having a good day at home and don’t expect to need it, air travel is taxing and you will be glad you brought your cane at day’s end.

If you are using a carry-on bag larger than a purse or small backpack, invest in a roller bag. The wheels and long handle are going to make lugging it around with you a lot easier. When checking bags, tie a bright piece of cloth on the handle of each one so you can spot them quickly in a sea of luggage that all looks the same on the carousel in baggage claim.

Security check points are notorious for long lines and hassles, but you can make things easy on yourself. Leave your belt at home and empty your pockets into a baggy stored in your carry-on ahead of time. If there is an outside zippered pocket on your roller bag, use that space for your ticket and ID, along with your ziploc full of liquids that need to be separate from everything else for inspecting. Slip-on shoes are a convenient alternative to ones that lace up and requires no sitting or bending to put them back.

Stay tuned for more tips on Wednesday!

*Jeri was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.

Share Button

Running on Empty

Have you ever been in a car which has run out of gas? If you haven’t, the car slows… you may coast a bit, but quickly movement putters out. For many people with MS, fatigue can be much the same, one minute you are moving around and then suddenly the momentum changes and your energy level drops. For some people, they may even feel that to take one more step or motion is too much and may need to immediately sit or rest.

In a car there is a gauge which shows you when the gas tank may be getting low, people are not so easy to read. Some people may even feel as though the internal gauge is broken.

So, what can you do to try and prevent your engine from stopping?

Some quick energy conservation tips:

  • Listen to your body
  • Plan for your day (try not to plan too much)
  • If you can, try to schedule rest breaks into your day or activity
  • Talk to your doctor about your experience

For more in depth information on MS Fatigue see the following link: https://mymsaa.org/about-ms/symptoms/fatigue/.

Share Button

Parting Thoughts…

The following is a post from Amanda Bednar, MSAA’s Manager of Community Relations, who will be sadly leaving us after 9 years of being a part of the MSAA family. We will miss her!

For the past nine and half years I have enjoyed being a part of the staff at MSAA as well as the larger multiple sclerosis (MS) community. When I first started here, I came aboard wanting to learn more about multiple sclerosis but more importantly, combine my skills as a communications professional and my desire to make a difference into a career. Looking back, I can certainly say that my career at MSAA has been all of that and more. I have come to have a profound respect not only for the MS community but for my colleagues and the work that is done to make sure MSAA’s mission continues. I am honored to have worked with so many kind and generous individuals.

The one thing I will miss the most are the emails and testimonials that I have been able to read from you, our clients. Every time I read a guest post in this blog or meet an individual at a program or speak with a client about their Stories to Inspire column in The Motivator, I am often left awestruck at the resiliency and determination of the MS community.

While I am leaving my day-to-day duties at MSAA, I will not be leaving the MS community. I plan on transitioning into a volunteer role, where I hope to still be able to continue supporting MSAA’s mission of improving lives today!

Share Button

Have you tried My MS Resource Locator?

MSAA offers an online database with resources in ten key topic areas that range from helping you locate a neurologist specialized in MS to finding a Social Security Disability Attorney.

In addition, each of the ten topic areas provides a “guide” designed to explain why specific resources are listed, highlight important questions to ask when contacting resources, and identify next steps.

Try it today! http://resources.mymsaa.org/

Share Button

Swim for MS News – July 2013

The July 2013 Winners are…
Missy Franklin Autographed Photo:
Congratulations Julia, for being the top Swim for MS fundraiser during the month of June!

Swimsuit Prize:
Congratulations Kara for winning a Swim for MS swimsuit! This suit was designed and made by HARDCORESWIM!

How do I Swim for MS?
Go the Distance – Individuals or teams set a challenge goal to swim a certain amount of laps, distance, or time during one day or over a set period of time.

Make a Splash – Participants turn fun pool activities into exciting fundraisers such as pool volleyball tournaments, cannonball jumping contests, and more!

How do I receive Community Service Credit?
If you or someone you know needs to fulfill community service hours – Swim for MS! Swim for MS is a “virtual volunteer opportunity” – this means that you contribute as much time as you can – when you can!

  • Register online at SwimForMS.org.
  • Set your challenge goal – Swim 100 laps in 10 hours and raise $150.
  • Ask your friends and family to support your cause.
  • Keep a log of hours swam and track your progress on your page.
  • Once completed, email swim@mymsaa.org to receive a confirmation letter of your hours!

Swim for MS Swimsuit Partnership
MSAA has partnered with HARDCORESWIM to provide exclusive Swim for MS swimsuits! HARDCORESWIM is based in Southern California and all items, from start to finish, are produced in the USA. Two different Swim for MS styles are available for men and women! Check out the Swim for MS page on their site and order your suit today!

In Other News
Please visit our Swim for MS News section on SwimForMS.org for more information on our CaféPress site, as well as our Swim for MS partners, Pura Vida and HARDCORESWIM.

If you have any questions, please contact us at swim@mymsaa.org.

Share Button

IRONMAN Part 2 – Race Day

By Lyle Anderson

The race started out great. But about 15 minutes into the swim portion of the race  a freak windstorm blew in. Winds were in excess of 50 mph. For those of you that don’t know an Ironman consists of a 2.4 mile swim, 112 mile bike ride, followed up by a full marathon. As the winds picked up, so did the waves! I felt like I was swimming in the ocean. We had 4- 5 foot waves. All of the swim support that was in kayaks and paddle boards were having to get rescued, as they were being tossed out of their boats. Swimmers were quitting by the hundreds!! I knew this could possibly be the only chance I ever get to do a full Ironman. So I made a decision to stick it out and finish the swim.

When I got out of the water I was expecting them to tell me good job, but we are cancelling the event. However that is not what they said and I was amazed that I had to get on my bike now and ride in these winds (which were now in excess of 60 mph). As I started riding my bike, I couldn’t help but wish I were back in the water. That swim seemed easy now compared to this bike ride. I had to dig really deep to fight off the battle within my mind to quit. For 112 miles I kept saying to myself I will just keep riding until someone asks me if I want to quit. Since that never happened I just kept of going. I finished the bike portion with only 10 minutes to spare to the cut off.

Now all I had left to do was run 26.2 miles. Believe it or not this was the easy part. I felt surprisingly good and knew at this point that I would finish. It was so refreshing to be off the bike. I wasn’t moving very fast but at this point I didn’t need to. We are allowed 17 hours to complete the full event. I finished in 16 hours and 5 minutes. As I ran across the finish line I heard the announcer say “Lyle Anderson from Hurricane, Utah YOU ARE AN IRONMAN.”  That phrase still to this day rings in my head like it was yesterday.

Because of this I was thrilled to make it to the final round of the Kona Inspired contest, which provides seven slots to individuals with inspiring stories of overcoming personal adversity for the IRONMAN World Championships in Kailua-Kona, Hawai`i.  For those of you who don’t know – the Kona Iron Man Triathlon is  like the Super Bowl of Triathlons. This is an event that the best of the best go to. Qualifying for Kona is not a realistic goal for me to try and achieve at this point in my life.  But through, the Kona Inspired program, which was introduces in 2012, I have a chance to get there and you can help me. Now through July 8th, 2013 you can vote for my video at: http://konainspired.thismoment.com?x=us-en_kona_821_.

Running and participating in Triathlons has opened my eyes to a whole new world of possibilities I never knew existed before. I realize now that anything is possible with a little work and mental preparation.

Share Button

An IRONMAN – Part I

By Lyle Anderson

Ironman

I was born and raised in Richland, Washington.  My family moved to Southern Utah in 1993,  where I still live to this day.  I have been married for 16 years and have four beautiful children.  I was introduced to running about seven years ago.  After being diagnosed with MS (multiple sclerosis) on my 30th birthday, I decided I still had a few things I wanted to accomplish in my life while I still have the ability to do so.

When I was first diagnosed I could barely walk.  My legs just wouldn’t cooperate with me. My eyes weren’t working right either which made things even more difficult. When my doctor first diagnosed me with MS she told me I could be in a wheelchair in 5 – 10 years. Looking back I’m sure she was just trying to give me a “worst case” scenario. I was totally devastated! My wife was pregnant with our 3rd child at the time and all I could think of was my wife’s Aunt, who also has MS and has been in a wheelchair the whole time I have known my wife. I had so much I wanted to do still in my life.  I guess this was the kick in the pants I needed to get my life back on track.  I started taking Rebif along with steroid infusions.  After a few weeks the numbness went away and my motor functions improved.

In 2010 with a little motivation from my father-in-law I ran my first full Marathon.  Since then I have completed 7-full marathons, 8-half Ironman distance races, 12-Olympic Triathlons, 7- Sprint Triathlons, 38-half marathons and more 5k’s and relays than I care to list. To top it all off in 2012 I decided to do the full St. George Ironman. This decision wasn’t something I thought I would ever want to do. However, they announced this was going to be the last year for the full race and I didn’t want to have any regrets if I missed it. With the encouragement of friends and family I signed up. The training was way harder than I ever thought it would be. But I took one workout at a time and before I knew it race day was here!

*Tune in tomrrow for Part II of Lyle’s story.

Share Button

Happy First Day of Summer!

While for many the “unofficial” start of summer is Memorial Day weekend, today is the summer solstice, which is the astrological start of the summer season. Typically this is the longest day of the year. This doesn’t mean our day has more than 24 hours in it – we just have more sunlight than any other day.

So what better way to enjoy all that sunlight than to jump into the pool for Swim for MS?!AWP_2012-MissyFranklin-7816

For those of you who do not know, Swim for MS is MSAA’s signature volunteer initiative which allows individuals to create their own swimming fundraising event while recruiting online donations to support MSAA’s mission of improving lives today.

How can you Swim for MS?IMG_5562

  • Host a summer pool party on the weekend!
  • Set a goal to swim 500 laps throughout the summer to raise $1,000!
  • Create a pool volleyball tournament with your friends!
  • Host a July 4th Pool Party
  • Participate in Swim for MS and pledge to swim 100 laps and improve your fitness by the end of summer!

For more information on how you can Swim for MS, please visit swimforms.org!

Share Button

Highlights from the CMSC and ACTRIMS Cooperative Meeting (2013)

MSAA’s article summarizing highlights from this year’s Fifth Cooperative Meeting of The Consortium of Multiple Sclerosis Centers (CMSC) and Americas Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS) is now available. National and international MS experts attended this exciting conference, where the latest findings in MS research, treatments, symptom management, and patient care were presented.

Topics highlighted in this article include:

  • new and experimental treatments for MS
  • pregnancy information for women with MS taking disease-modifying therapies
  • emotional and physical findings in MS
  • and much more!

Please be sure to take a look at this article that covers many important topics presented at this unique meeting.

Share Button

Tana Campbell’s Race of Hope – Part 3

By Tana Campbell

971041_394864957294592_2045192527_n

 

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

Share Button