About MSAA

As a national nonprofit organization, the Multiple Sclerosis Association of America is a leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a toll-free Helpline; award-winning publications including a magazine, The Motivator; website featuring educational videos and research updates; S.E.A.R.C.H.™ program to assist the MS community with learning about different treatment choices; a mobile phone app, My MS Manager™; a resource database, My MS Resource Locator; equipment distribution ranging from grab bars to wheelchairs; cooling accessories for heat-sensitive individuals; educational events and activities; MRI funding and insurance advocacy; and more. For additional information, please visit http://www.mymsaa.org or call (800) 532-7667.

Happy Thanksgiving to the MS Community from MSAA!

The votes are in and we have a new MSAA Thanksgiving Card winner! The competition was a close one, but our big winner is…

Happy Thanksgiving

Pumpkin Floral Arrangement!

Coming in a close second place were cards showing a puppy and a kitten, a candle centerpiece, and a festive candy turkey with two small pumpkins. Sadly, our determined and colorful turkey was also defeated, but we’re sure he at least ruffled a few feathers in the process!

We would like to thank the more than 1,200 people who took part in this year’s fun election to select MSAA’s official Thanksgiving Card for 2014! MSAA’s winning online card “Pumpkin Floral Arrangement” is now available for you to select and send electronically to everyone you know. And since the other candidates received many votes as well, MSAA is offering all six cards for you to send!

Send a Thanksgiving eCard

This is a great way to send Thanksgiving greetings, while showing your support of MSAA, a leading resource for the entire MS community, improving lives today through vital services and support. At this time of giving thanks, we also want to express our sincere gratitude to the many individuals who have so generously contributed to support our vital mission.

Please note that MSAA’s offices are closed for the Thanksgiving holiday on Thursday, November 27th and Friday, November 28th. 

From all of us here at MSAA, please enjoy a safe and happy Thanksgiving!

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My MS Journey

By: Matt Cavallo

As an author and speaker, I have had the privilege of meeting people living with multiple sclerosis at MS events across the country. One of the ties that binds us is that we’re all different. Sure, we experience similar symptoms, whether they be vision, balance, memory related, or other, but each of our journeys is unique.

Whether you are just starting out as recently diagnosed person living with MS or are a seasoned traveler living with the disease for many years, there is a website available with resources to help assist you on that journey, My MS Journey.

My MS Journey organizes MS resources in a central location to help assist you with where you are at in your MS journey. The resources are categorized in an easy-to-use, searchable format. The following blog is step-by-step instruction of how to find information on the site.

5 Steps for Navigating My MS Journey

Let’s say for example that you were newly diagnosed and wanted a resource on how to talk to family and friends. My MS Journey can help using the following steps:

1. Enter the following link into your internet browser: http://mymsaa.org/journey/
2. Click on the picture or heading for your particular journey, in this case Just Starting Out:

MyMSJourney

3. Click on the section header to expand the section, and then click on the hyperlink to open the resource that you would like to select.

juststartingout 4. A new browser window will open up displaying the resource information that you were seeking.

includingfamilyandfriends 5. When you have finished accessing the information, you can either close the tab or click the My MS Journey tab to return to the main site.

Additional Functionality
While My MS Journey is categorized into sections with content and resources to assist you in each step of your journey, the home page of My MS Journey has additional functionality relevant to everyone living with MS.

A. Site Preferences – allows you to control your font size preferences, access keys, and print options to make the site more accessible for you.
B. Helpful links – these links provide tools and resources to help you better manage your MS, like the MS Resource Locator and Prescription Assistance Programs.
C. MS Trivia – impress your friends and family with how much you know about MS by participating in the trivia section. Once you make a selection, the right answer will be displayed along with how others answered.

The front page also allows you to share this site on social media. Sharing this site is important because of all the great resources provided by MSAA to help each one of us living with MS on our journey. Sharing resources that help each of us on our journey helps strengthen the MS community. Thank you for reading and I hope you take advantage of all the great resources that MSAA and My MS Journey have to offer!

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

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Having a Stress-Free Holiday Season When You Have MS

By: Jeri Burtchell

Each year, I judge how well prepared I am for the holidays by the way Halloween plays out. When I saw my son donning the same scary mask we bought several years ago, I realized I’m as ill-prepared as ever. We’re lucky it still fits, I think to myself as holiday dread settles squarely on my shoulders.

The problem with his costume is not that we aren’t creative, it’s just that life is busy and time slips through our fingers like greased marbles these days. We end up making last minute plans and this Halloween was no exception: get the plastic pumpkin off the top of the fridge and start searching the house for that mask (two hours before Trick-or-Treat officially kicks off). I’m not creating the perfect childhood memories for my son, I fret to myself as I look under the bed for the face from Scream.

The limitations that my MS fatigue and reduced walking ability have placed on me are showing. I’m not looking forward to Thanksgiving and Christmas with the same enthusiasm as I once did. I’m filled with angst as part of me wants the ultimate “joyful” experience, while the other part just wants it all to be over.

But the holiday season is stressful for everyone. The difference is some people thrive on the stress, which they call “anticipation.” But others like myself are filled with dread. Ever since I was diagnosed with MS in 1999 it seems like I stopped looking forward to the time between Halloween and New Year’s Day. I think it’s because I worry about stress triggering a relapse. And then part of me feels guilty because the children in the family aren’t getting the full “magical” experience.

While I do face physical challenges, my MS isn’t the only factor shaping our family holidays. Mom is 91, and though she’s still undeniably the sharpest knife in the drawer, she doesn’t get around as easily as she once did. Still other family members are living with everything from lactose intolerance to diabetes which influences the dinner menu.

But we are managing. Together our family is learning to adjust to our new collective “normal”. We’re redefining what our get-togethers look like. The emphasis is on comfort and ease while downplaying commercialism. So what if the tree isn’t up or we don’t have a full turkey dinner with all the trimmings? We can define the celebration on our own terms.

The holiday dinners will be potluck so that we can each focus on one dish and prepare it ahead of time. Nobody will be banished to the kitchen and make-ahead dishes can be prepared when the cook (or baker) is feeling up to it.

With dinner prepared in advance, we’ll be free to enjoy each other’s company. The conversations, the laughs, the squealing children, and the photo ops will fill our memories of the day.

If Mom has to take a nap or I have to go lay down for a while, that’s okay. Everyone knows we both have our limits.

At Thanksgiving we’ll draw names for Christmas gift giving. Everyone ends up with a present but only shops for one person instead of ten. With a $20 limit and the convenience of online shopping, we can eliminate the stress of holiday crowds. We’re trying to make it more about the get-together and less about “what-did-I-get?”

Over the past fifteen years, I’ve come to learn a lot about managing my MS. I need plenty of rest, I need to eat right, and I need to exercise. But it’s just as important to reduce the stress in my life. Not only is it bad for MS, but for everyone’s health in general. By reducing the amount of effort (and stress) it takes to pull off a family gathering, we’re really looking out for our health.

The holidays should be about family, love, togetherness, and appreciation for every positive thing in our lives.

So when next year rolls around and my son is reaching for the same old scary mask at Halloween, I’m going to go a little easier on myself. The mask can be a new tradition, a symbol of how we can let go of society’s expectations. It will signal the start of a stress-free holiday season and–with the help of my family–I know we can do this!

References:
http://www.healthline.com/video/managing-multiple-sclerosis

*Jeri Burtchell 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.

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The Overhead Solution

by Kimberly Goodrich, CFRE, Senior Director of Development

Several of my articles and posts have focused on the Overhead Myth – the commonly held belief that financial ratios are the sole indicator of a nonprofit’s performance. Over the last year, it has become widely agreed that stars and ratios do not clearly communicate a nonprofit’s impact or show that we are meeting our mission.

The Multiple Sclerosis Association of America has joined BBB Wise Giving Alliance, Charity Navigator and GuideStar in the pledge to end the Overhead Myth and move toward an Overhead Solution. Instead of focusing on the percentage of charity’s expenses that go to administrative and fundraising costs-commonly referred to as “overhead”-we need to focus on what really matters: trustworthiness and performance.

Last year, BBB Wise Giving Alliance, GuideStar, and Charity Navigator, published an open letter to the donors of America denouncing the use of the “overhead ratio” as the sole indicator of nonprofit performance. The letter, signed by all three organizations’ CEOs, marked the beginning of a campaign to correct the common misconception about the importance of a low overhead ratio.

A new open letter, published in October on www.overheadmyth.com, educates and encourages nonprofits to work towards an Overhead Solution. Specifically, the letter asks nonprofits to do three things, “(1) demonstrate ethical practice and share data about performance (2) manage towards results and understand your true costs and (3) help educate funders on the real costs of results.” The letter goes on to provide resources to help nonprofits in this critical endeavor to measure and report on what matters most.

Join us in spreading the word about this important topic. Nonprofits and their supporters are encouraged to learn from and share the latest Overhead Myth letter. We’d love to hear your thoughts and ideas. As always, please contact us if you have any questions at all.

Thank you for your support in this effort.

*About Kimberly

I am the Senior Director of Development at MSAA and have worked in the nonprofit arena for over 15 years. I love reading, running, theatre and the Green Bay Packers. I volunteer with the Disabled American Veterans teaching outdoor sports like skiing and kayaking to injured veterans and find that I receive much more from them than I am able to give.

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Happy Halloween 2014

Boo! From all of us here at MSAA, we’d like to wish the multiple sclerosis community a safe, happy, and fun-filled Halloween!

By Johnny Martin ecdl (Own work) [CC-BY-SA-3.0 (http://creativecommons.org/licenses/by-sa/3.0)], via Wikimedia Commons

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Remembering the MS Support People

By: Sheryl Skutelsky

I’ve personally switched MS medications 3 times over the 14 years since I was diagnosed. It was a little over a year ago that I went for monthly infusions.

I would walk into the infusion center, and no matter how hectic it seemed at times, there was Kristen always smiling. Especially in the beginning, this was a place of fear for me. My veins saw a needle coming, and they would literally slide to the side. Kristen had the patience of a saint, and the most amazing bedside manner.

Unlike so many, I wasn’t doing well on the medication. I began to experience severe joint pain, and I finally had to give up and move on to the next medication.

However, I will never forget the difference it made in my life to have a nurse like Kristen. She cared about each and every one of us, and I swear she could do 20 things at once and get them all right.

To this day whenever I visit my neurologist, and he says that I need bloodwork done, I’ll patiently wait until Kristen has a free moment – not just because she’s the only one that can find my vein on one try, but because her smile can light up anyone’s bad MS days.

*Sheryl Skutelsky, diagnosed in 2001, has learned how to live positively with multiple sclerosis. Sheryl’s passion has always been graphic design. Her symptoms have become an inconvenience to her work, so she now uses her skills and creativity to reach out to others about MS. Sheryl is a patient advocate speaker for Biogen Idec. She also writes for Healthline.com, and she is an Internet radio host with her own show, Fix MS Now. Check out her Fix MS Now page on Facebook which has more than 10,000 followers. You can help raise MS awareness one “like” at a time by visiting: http://www.facebook.com/fixmsnow.

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Continued Success after Therapy

By: Matt Cavallo 

Earlier this month, I wrote a personal story of my positive outcomes with therapy. I utilized Physical and Occupational Therapy, along with Speech Language Pathology to aid in my recovery from neck surgery. This was a scary time in my life, and I was extremely thankful to have each line of therapy to help me overcome my deficits. My personal challenge became what to do once I no longer qualified for therapy visits?

The best way to relate my therapy experience is to talk about my gym membership. I have a family gym membership and make my annual gym appearance sometime in January. Then, I don’t go for the rest of the year. I offer any number of excuses to my wife and kids as I watch them drive off to the gym each Saturday.

The truth is that the only way I would utilize that gym membership would be if I had a personal trainer – someone to look over my shoulder as I exercised that I paid for. Paying for the service holds me accountable and forces me to keep my appointments. I also prefer to work out with a trained professional, who understands my limitations and can design a routine where I won’t hurt myself. The problem becomes I get on a good routine with the trainer, but as soon as I stop using a personal trainer, I stop working out.

This is my same relationship with therapy. While I am actively participating in therapy, I do great. As soon as they give me home exercises, I don’t follow through. I know that the homework given by a therapist is specifically designed to help me functionally, but I just don’t do well when left to my own devices. The problem is that my lack of follow through is detrimental to my health. My neck surgery forced me to change my behavior. Here are a couple of tips that helped me have continued success after being discharged from therapy:

Tips for Continued Success after Therapy:

1. Request clear, written discharge instructions. Your therapist will develop a plan of care that you can continue on your own after you finish all your therapy appointments. Make sure that you get a copy of those discharge instructions at your last appointment.

2. Get a copy of your Home Exercise Program (HEP). Your therapist can provide you home exercise instructions with pictures. These instructions provide a handy reminder of the therapist recommended exercises, as well as a visual reference for how to safely perform the exercise.

3. Make sure you get your questions answered. During your last appointment, make sure that you have a list of questions for your therapist. You will want to make sure that any concerns you have are addressed. There is truly no such thing as a stupid question when it comes to your health and well-being. Even if you think your question isn’t appropriate, you may have a legitimate concern that the therapist isn’t thinking of. I always have my questions written on a piece of paper and take detailed notes.

4. Follow through. Where I am lacking is in the follow through. For my neck, I still have my HEP and discharge instructions. When it tightens up, I know exactly the stretches that help and reference the pictures to make sure I am doing it right. The problem is that if I consistently followed through and strengthened and stretched my neck, then I probably would feel consistently better – just ask my wife!

Therapy is a great start for managing your MS symptoms. Continuing to follow through after you finish therapy is the key to success. Following these steps may help to ensure that you are prepared for life after therapy. Continuing your home exercise program post-discharge will put you in a better position for continued success.

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

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Swim for MS: Give me a T-E-A-M!

With the start of the new school year and a new swim team season, MSAA’s Swim for MS has seen tremendous support. All over the country, swim teams are working together raising money to improve the lives of those living with MS.

Swim for MS encourages volunteers to create their own challenge, such as swimming laps or set distances over a chosen period of time while collecting donations for their personal fundraising goal. These challenges can be done individually or through group swims by teams of young and old alike. The NCMP Aquagirls, a Girls’ High School Swim Team from Iowa, created an event that would push them into swim shape early while creating awareness and raising funds. Their team captain, Rachel, challenged the team to swimming 50,000 total laps during the month of September. They collected pledges in August and September to raise over $1,000 for Swim for MS.

NCMP Aquagirls

NCMP Aquagirls

Lexie and team

Lexie & Team at her Swim for MS event

Volunteers also raise funds through a variety of unique one-day events such as pool parties, water-volleyball tournaments, and cannonball challenges. Unlike more traditional MS fundraising activities, Swim for MS allows individuals with MS at any stage in their journey – from the recently diagnosed to those with limited mobility – to benefit from water exercise and assist in raising donated funds for a vital cause. Lexi and her Swim for MS Team participated in a one day Swim for MS event held at her high school in Indianapolis and raised over $2,800 in September.

Just because October, November, and December are filled with back-to-back holiday parties, doesn’t mean you can’t organize a successful fundraiser! Stay on top of your game by encouraging a team effort for this fun event. Gather your Swim Team for a fundraising event everyone can do together. Show your school spirit by having a friendly competition between team colors, pick a side, and swim your heart out. Winning team gets bragging rights for the swim season!

On our SwimForMS.org website, you can read the profiles of some of our swimmers. They can inspire you and give you great ideas for your own Swim for MS challenge. We would like to thank everyone who has or will participate in Swim for MS!

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A Personal Story of Positive Therapy Outcomes

By: Matt Cavallo

I had one goal for after my anterior cervical fusion surgery: work as hard as I could to return to normal so I could be the dad I always wanted to be. This was not going to be easy. I had a serious neck injury with bone fragments cutting and flattening my spine with every movement. The pain I experienced was intense. Electric shocks shot up and down my body, freezing me in place whenever I tried to move. Instinctively, I held my shoulders tight together when I moved in order to take the pressure off of my spine, but it also made me look like the Hunchback of Notre Dame.

This was no way to live. My sons were only three and one year old, respectively at the time, and I feared that I wouldn’t be able to be the active, involved dad that I always wanted to be. In my deepest, darkest moments, I was afraid that I would become quadriplegic. Unfortunately, my doctors agreed with my fears and recommended immediate surgery. They said my neck problem was related to an earlier MS exacerbation I experienced of Transverse Myelitis and that even picking up my babies the wrong way could leave me damaged for life.

I was scared. I didn’t want surgery, but I also didn’t want the alternative. In September of 2010, I went under the knife. I didn’t know what to expect, but I was also working for a rehabilitation hospital at the time and received a lot of good advice prior to surgery. When I woke up from that surgery, I followed that advice.

First, I had an evaluation with a Speech Language Pathologist (SLP). While many people know that SLPs can work on cognitive and language deficits associated with multiple sclerosis, many don’t know that SLPs can also help with swallowing issues. My SLP coached me how to adapt my swallowing techniques while wearing a hard neck brace. These strategies helped me adapt during my recovery. My SLP also set expectations about what it would feel like to swallow with the titanium artifact in my neck. Without these compensatory strategies learned from my SLP, my recovery would have been much more uncomfortable and I probably wouldn’t have received the proper nutrition. As a side note, I did consult a Registered Dietician about liquid nutrition options before switching to regular food when I was first out of surgery.

Next, I had an Occupational Therapy (OT) evaluation. Learning to adapt with a hard collar wrapped tightly around your neck is difficult. Trying to dress or clean yourself up after going to the bathroom was impossible for me. My OT worked on activities of daily living (ADLs) including dressing and toileting. These strategies allowed me to remain independent with my ADLs post-surgery. Feeling independent with grooming, toileting and dressing helped my confidence. My wife was already having to dress and change my kids’ diapers. I didn’t want her to have to do the same to me. My wife did really step up and help me when I needed her the most, but my OT gave me the strategies to be as independent as possible during my recovery.

Finally, I had a Physical Therapy (PT) evaluation. First, my PT worked on my neck range of motion, turning from side to side, and rotating my shoulders back into place after all the atrophy associated with being hunchbacked. Then, my PT worked on strengthening my shoulders and neck to ensure that my range of motion and shoulders remained intact after therapy. My PT also gave me home exercises designed to keep the area strong and maintain the progress I made from the therapeutic interventions.

It has now been four years since surgery, and I am happy to report that I have achieved my goal. My quality of life is better now than it was prior to the surgery. I believe that I would not have experienced as much success without the help of my therapists. My PT, OT, and SLP each contributed, not only to my recovery, but also, to the strategies that I learned through therapy which I continue to use today. Most importantly, I am able to be the dad that I always wanted to be. I appreciate every day that I can go out and play with my boys.

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

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MS Means Managing Your Energy

SherylBy: Sheryl Skutelsky

It’s Football Season! So, what does that have to do with MS? Well, in my case an unexpected wonderful opportunity to travel to meet my son to see my very first live NFL game. This opportunity truly once again brought to light the ways in which I have to live my life a bit differently from everyone else.

My dad wanted a boy, but instead he got me, an only child. So, I was placed in front of the television from as early as I can remember to watch the Jets play. I was taught every rule and regulation.

I’ve lived my entire life in New York, but for some reason my son had been a Packers fan from as early as I can remember. He dreamed of getting tickets to Lambeau Stadium for over 20 years. He finally had tickets for the Packer’s first home game against the Jets, but he broke up with the girl that was supposed to accompany him.

I get a call from my 31 year old son, now living in Houston, asking me if I would like to meet him in Green Bay for my birthday to finally get to see my Jets play live. Instantly I was ecstatic and panicked at the same time!

MS means managing your energy to avoid overwhelming fatigue. I didn’t have enough warning to rest all week for this trip. I also remember my son telling me that as a teenager he often felt that I wasn’t there for him; I was always too tired. I hadn’t been diagnosed yet, and my son rationally understands now why I was always tired, but I didn’t want to let him down this special weekend.

Well, the Packers beat the Jets, and I came home a Packers fan, but more importantly, my son and I had such a special weekend together. He had tattooed the MS logo on his ankle for me several years ago which meant a lot, but this weekend he also showed me that he truly understood how I had to live a little differently with MS.

My son did all the driving, took care of me, kept me out of the sun as much as possible, and made sure I got time to rest. We had such a great time together in Wisconsin, and my son told me how proud he is to tell people how his mom doesn’t let MS stop her from enjoying life. After all, what more can a mother ask for?

*Sheryl Skutelsky, diagnosed in 2001, has learned how to live positively with multiple sclerosis. Sheryl’s passion has always been graphic design. Her symptoms have become an inconvenience to her work, so she now uses her skills and creativity to reach out to others about MS. Sheryl is a patient advocate speaker for Biogen Idec. She also writes for Healthline.com, and she is an Internet radio host with her own show, Fix MS Now. Check out her Fix MS Now page on Facebook which has more than 10,000 followers. You can help raise MS awareness one “like” at a time by visiting: http://www.facebook.com/fixmsnow.

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