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.

Preparing for the Change of Seasons

Posted on September 25, 2013 by MSAA

By Matt Cavallo

Many of us living with Multiple Sclerosis welcome the change of seasons. Gone are the dog days of summer and the pseudo-exacerbations (brief flare-up) associated with heat. While the heat is no longer a factor, the change of seasons can present other challenges to those of us living with MS. In a speech to the University of Lille (7 December 1854), Louis Pasteur said one of my favorite quotes, “Chance favors the prepared mind.” The following self-management techniques will help you prepare for the challenges that the change of season present for those of us living with MS:

Self-Management Tips for Change of Season Issues

1. Eating healthy: Fall and Winter are associated with a lot of festive eating. Halloween candy, Thanksgiving dinner and all the holiday parties, provide lots of yummy food and treats but also provide many opportunities for us to overeat. Some ways to keep your diet in check:

Eat three meals a day. Breakfast is the most important meal of the day. Skipping breakfast may lead to overeating later.
Eat smaller, more frequent meals to keep your energy up.
Avoid large portions and desserts that can increase fatigue.
Keep a food diary and write down everything you are eating to stay on track and keep you accountable for healthy choices.
Drink plenty of water. Dehydration can be confused with hunger.

2. Preventing falls: Rain and snow in fall and winter can lead to an increased risk of falls.

Safeguard your entrance and exits with mats to absorb moisture.
Wear appropriate shoes with proper treads to provide more grip on slippery floors and sidewalks.
Stock up on the supplies you need to weather any storm that hits, so that you don’t have to run out during a storm.

3. Exercise: Cooler months can mean less opportunities for outdoor activities, leaving some less active.

Find ways to fit in exercise despite the weather.
Work out indoors at a local gym or in your own living room with exercise DVDs.
Many local gyms, like the YMCA, have indoor pools. Aquatic exercise is good for those with limited mobility.
You can also use swimming to raise awareness for MS through the MSAA’s Swim for MS program.
Mall walking is a good way to get in exercise on a rainy day.
The key is to keep moving!

4. Managing stress: Fall and winter months can increase stress from increased holiday parties, financial expenses and family obligations.

Don’t overextend yourself.
Set a realistic plan for what you can commit to and stick to it.
Take time for yourself to relax and decompress.
Exercise and eating healthy will play a vital role in helping to keep your stress levels at a minimum.

Each season can bring a unique set of challenges for persons with disabilities, but preparation and knowledge of self-management skills will help you anticipate and overcome those challenges to enjoy the best of what the season has 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

Parenting with MS

Posted on September 6, 2013 by MSAA

By Matt Cavallo

Watching my oldest son, Mason, turn and walk into Kindergarten for the first time sent a flurry of emotions through my soul. I was feeling both proud and incredibly sad knowing that my baby was now a schoolboy. The sadness came from deep inside remembering back to how hard it was for my wife to conceive due to issues I was having as a result of my Transverse Myelitis and MS.

The pride came from thinking back to a childhood friend. When I was in Kindergarten, I had a friend in my neighborhood named Conner. His mother had Multiple Sclerosis and she was confined to a wheelchair. Even now, I remember Conner’s strength and the sacrifices he made as a five year old to care for his mother.

When I was diagnosed with MS, my biggest fear was that I was not going to be able to be the dad I had always dreamt of being. Deep down, I didn’t want my child to have to care for me in the way that Conner had to care for his mom. Now, eight years after my initial diagnosis of Multiple Sclerosis, I proudly walked my Mason to his classroom, hand in hand.

As he let go of my hand and I watched him walk into a new chapter of life, I knew that his understanding of the world was going to grow each and every day. With his new understanding of the world, comes a new fear. How do I explain to him that his daddy is different from the other dads? How do I tell him that I have a neurodegenerative disease and that the big, strong guy he knows might not be that way forever?

As a young dad with a chronic disease, I have been looking for a way to talk to my boys in words they can understand. Especially for Mason who now has more questions than ever before. One of this resources that I have found in my search is, Daddy’s Story: An Introduction for Younger Children to Learn about a Parent’s MS. This is an illustration book for younger children that helps explain MS in words they can understand (don’t worry, moms – there is a Mommy’s Story too). With this resource, I am able to have a conversation with my boys and answer the questions that they have about my condition.

Knowing that there are resources to help me talk to my kids about my MS in a way that they can understand has helped to mitigate my fears and focus on the pride I have in raising two people who are loving and caring individuals.

Greetings from the Northeast! An Update from Multiple Sclerosis Association of America Northeast Regional Director

Posted on August 30, 2013 by MSAA

By Lauren Hooper

Greetings from your Northeast Regional Director! As summer begins to wind down and fall approaches, MSAA has a few educational programs lined up in the Northeast Region, and I hope you’ll consider joining us if there are any coming up in your area.

On Tuesday, August 27^th, I traveled to Morristown, NJ for a program on symptom management in MS that focused on helping patients to identify the overall range of MS symptoms (especially symptoms with treatment options available) and how to best address them with their professional care team. Dr. Mary Ann Picone from Holy Name MS Center was the guest speaker, and she made sure to answer every attendee’s question during the Q&A session. It was such an interactive program, and as everyone was leaving, a few people stopped to tell me how nice it was to be able to talk to a physician outside of the clinical setting. Everyone seemed relieved to have had all of their questions addressed, and I was thrilled that they benefited so much from the program.

In September, my travels will take me to Maine, Massachusetts, Vermont, and Maryland. On September 14^th, I’ll travel to Bangor, ME for a patient program on “Tackling the Everyday Challenges: Recent Breakthroughs in MS Symptom Management & What’s to Come” (support.mymsaa.org/Bangor). On September 21^st, I’ll be in Braintree, MA for a program designed for parents and children to help build a better understanding of MS, called “Bridging the Communication Gap between Parents with MS and their Children” (support.mymsaa.org/DBBraintreeMA). On September 25^th, I will head to Burlington, VT for a patient program on “Cognition in Multiple Sclerosis” (support.mymsaa.org/Burlington). And I’ll wrap up September in Baltimore, MD on September 28^th with a patient program focusing on the African American experience with MS entitled “A Closer Look at the African American Community and Multiple Sclerosis” (support.mymsaa.org/Baltimore).

Later this fall, I am also planning on holding programs in Pennsylvania and New Hampshire, and I hope to get back to New York before the end of the year as well. If you don’t see a program in your area, please keep checking our Calendar of Events (support.mymsaa.org/calendar) regularly, as we are constantly adding new programs. I hope to see you at a program soon!

* Lauren Hooper is the Northeast Regional Director at MSAA.

Online Support for Caregivers of People with Multiple Sclerosis

Posted on August 26, 2013 by MSAA

As a caregiver or care partner it can frequently be a challenge to actually make it out and about town. While an in-person support group or activity may be ideal, sometimes it may not be a reality. Online groups provide an alternate way to connect to support without having to plan details and coordinate care to be able to attend.

Websites such as MSWorld: http://www.msworld.org/ and PatientsLikeMe: http://www.patientslikeme.com/ provide avenues for individuals diagnosed with MS and their caregivers to discuss their concerns. These groups allow you to connect through online message boards or forums.

So, when you can’t get out of the house but need to talk with another person who has “been there” an online resource may be the way to go. Please note that every online forum will have its own set of rules and privacy policies. Before you register for any website be sure you are comfortable with the terms agreement.

A Care Partner’s Emotional “Moons”

Posted on August 23, 2013 by MSAA

By Bob Rapp

It’s another one of those nights. The ones that you awake at 2 am for no particular reason and can’t fall back to sleep. The one I love is soundly sleeping beside me making those cute, soft, sleeping sounds. As I wait for the sandman to return, she turns to her side and I hear a soft but audible ow, ow, ow. She still sleeps but I know it is the cramping in her legs that she is feeling. While it passes quickly, I am left to contemplate the 3 emotions that circle around me like the moons of a planet. And like moons these emotions are present but are sometimes in hiding.

There is my sense of helplessness in small events such as her leg cramping and larger ones as she fights through her fatigue and struggles to get out of bed for the day. What can I do? I can’t stop the pain and discomfort. Medicine and science have yet to eliminate her symptoms or cure her illness. As her partner, I try to provide the care, understanding and support needed but the frustration I feel because I can’t “do more’ is real and at times heart breaking.

There are times when the uncertainty of MS leads to thoughts of what the future may bring. It is accompanied by anxiety and sometimes fear. Thankfully, like the moon that circles its host planet infrequently these emotions appear only occasionally. They are worthy of thought and planning but I have done a pretty good job of focusing on what is directly in front of me. The here and now. Getting as much as we can extract from each day.

The emotion that shines the brightest, the one that exerts the strongest gravitational pull and the one that dominates my emotional sky is my admiration for her indomitable spirit. She does what she is able to proactively manage her MS. She is adherent to her medications. She exercises up to two hours each and every day. She works part-time and wants to travel everywhere. And she even finds time to help with her own parent’s care, provide guidance to her two adult children and take care of me (sometimes not an easy job). She is not a Superwoman. She doesn’t climb mountains or run marathons. She is just someone trying to do the best she can to live the best life she can and by doing that she teaches me something every day.

I certainly would not wish a disease like MS on anyone. I know having the choice I would eliminate it from our lives. There is however much to be learned and much to be inspired by. In some very strange ways there is a richness of life that is gained by making this journey together.

What as a care partner are your emotional “moons?”

*Bob Rapp is the Chief Operating Officer of MSAA. He has been a care partner to a person living with MS for more than a decade.

Caregiving: How Do You Ask For Help?

Posted on August 21, 2013 by MSAA

When you are on a plane the flight attendant always guides you through the steps of what to do in an emergency. One of those steps involves the oxygen mask. They always say to secure the mask to your own face before assisting your child or others. The logic is that if the plane loses oxygen and you faint or become incapacitated you will not be able to help anyone else (let alone yourself).

Many times a caregiver or carepartner is so focused on all the things they need, want, or have to do for another that they prioritize the “to do’s” and completely forget about their own needs. It is important to remember that everyone needs help at some point or other, even the designated “helper.”

But how do I ask for help?

Know what you need – Identify a few key things and add them to your “to do” list
Prioritize your list – You shouldn’t always be last
Know who to ask –Learn which agencies do what
Have the conversation – Discuss your needs/actions with the person you’re caring for

Caregiver Recognition

Posted on August 12, 2013 by MSAA

By Matt Cavallo

I remember the feeling to this day. You know that sinking feeling in the pit of your stomach when something is happening that is outside your control. I was lying in my hospital bed, my wife and family surrounding me looking hopelessly as I drifted in and out of consciousness. The entire time I was thinking, “What did they do to deserve this?”

Everyone was handling the news differently. My dad told me that he met some people with MS that were hiking mountains and playing tennis. My mom was at church everyday holding community prayer to find a cure for her son. I even had a friend tell me that drinking Pedialite would regenerate spinal fluid after the spinal puncture somehow.

Then there was my wife, Jocelyn, standing steadfast by my side. Friends and family came and left the hospital, but she stayed each minute. As I looked at her, I believed that the hopes and dreams we had for raising kids and enjoying the family life were dashed at twenty eight years old. I was wondering if I was even capable of having children with the Transverse Myelitis rendering me without function from the waist down.

Eight years later, Jocelyn is still by my side. Through each MS exacerbation, treatment and therapy she has been there always. At times, her role as my caregiver has been a challenge. When I had my cervical fusion, she had to help me with things like bathing and getting dressed. She was providing my care while taking care of a two year old toddler and a newborn.

There will always be challenges for those who care for a person with a chronic illness. There are also resources that can help. Even though Jocelyn and I have achieved a pretty normal life despite living with MS, we are always looking for information to ensure this quality of life continues. A great resource for care givers is the Spring 2004 Motivator article, Caring. Caring provides helpful tips and resources such as safety, diet and stress for those caring for a person living with a chronic illness like Multiple Sclerosis.

Last week, my wife celebrated her birthday and each year I am more and more amazed with her. All my fears back in that hospital bed have disappeared because I know that she is there for me. We were able to accomplish all our hopes and dreams and today are living the family life we always wanted.

Happy birthday, Jocelyn! You are an amazing mother and caregiver. I don’t know where I’d be without you! Thank you so much for being there every day and providing the support and care I need to help me in my fight against MS.

At the MSAA, we would like to hear from you. Please take this time to comment and thank the person in your life that has been there for you on your journey.

Matt Cavallo

For more information about My Story, please visit me at:

http://mattcavallo.com/blog/

Matt’s Introduction

Posted on August 9, 2013 by MSAA

By Matt Cavallo

Hello and thank you for checking out the MSAA blog. My name is Matt Cavallo and I will be contributing a bi-monthly blog to the MSAA. Since being diagnosed with Multiple Sclerosis in May of 2005, I have dedicated my life, work and education to helping others live well with this devastating disease. My goal of this blog is to draw upon my personal experience to discuss relevant topics and resources for persons living with MS, as well as, for their caregivers.

My journey with MS started in 2005. At the age of 28 years old, I had an acute onset of Transverse Myelitis (TM). The onset of TM claimed my functionality from the waist down. I was unable to walk or go to the bathroom on my own. Six months later, I lost vision in my right eye due to Optic Neuritis. Following the bout of Optic Neuritis, I had a cognitive loss which dramatically affected my memory and word recollection. Finally, in 2010 I had a suffered a fractured C6 vertebrae, which resulted from damage left over from my TM onset. I had to undergo an emergency cervical fusion to prevent becoming a quadriplegic.

When I first started experiencing symptoms, I was depressed and afraid. I thought that at 28 years old my life was over. I would like to say I handled it better, but I didn’t. I pushed away my family, friends and even my wife, Jocelyn. I was sure that the hopes and dreams that Jocelyn and I had together were over because of my condition. I wasn’t sure that I would be able to have kids because of the TM and even if I could still have kids, I didn’t want them to have a sick dad that couldn’t participate in their life.

Today, I am happy, healthy and feeling great overall and am doing things that I never thought was possible when I was first diagnosed. Despite having MS for eight years and the complications that go along with it, I am living my dream. Following my diagnosis, I completed my Masters of Public Health Administration and now work as a consultant in hospitals across the US to help practitioners better service patients like myself. I also penned my personal memoir, The Dog Story, which has been tremendously well received globally by patients, as well as, caregivers who can relate to my story. Today, I am the proud father of two boys, Mason (5) and Colby (3). The most important thing to me is that I am able to be a father and even coached Mason’s baseball team this past spring.

Today, I have partnered with the MSAA because I believe that we can make a difference in the lives of persons living with Multiple Sclerosis. I will be writing a series of blogs that focus on maintaining a great quality of life despite having MS. My blogs intertwine my personal experience with MS with resources, programs and links that I have found helpful. I intend this blog to be interactive. Please comment, ask questions or suggest topics that you would like to learn more about. We are on this journey together and together, we can make a difference. Thank you for taking the time and for supporting the MSAA.

Come Chat with MSAA!

Posted on August 7, 2013 by MSAA

MSAA now offers an interactive one-on-one chat feature giving you new ways to ask questions and gather infomation. Click here to learn more about how to chat with MSAA .

Hope to chat with you soon!

Summer Travel Tips for Flying With MS – Part 2

Posted on July 31, 2013 by MSAA

By Jeri Burtchell

Most people who have MS take medications. Be sure to keep them in your carry-on bag to prevent mishandling or severe temperature changes. Keep a note in your wallet or purse with your emergency contact, medications, conditions, allergies and medical history in case anything should happen away from home.

Pack a sweater in your carry-on. Even if you are traveling from one hot place to another, airports and planes can be veritable iceboxes. Besides using it for warmth, a cushy sweater can double as a pillow.

Pack your own snack. Fruit or nuts, a sandwich or chips, are all going to be cheaper if you bring your own. Airlines occasionally provide snacks, but not always, and if they have snack boxes for purchase you can expect to pay premium prices. The only thing you can’t bring is a drink but most flights offer a free beverage.

Which to choose, the aisle seat or the window? Windows seats have the added benefit of not only providing a view, but a “wall” on which to lean if you tire easily. Aisle seats make trips to the restroom easier. Middle seats, for most passengers, are the least desirable.

Pack a wall charger for your smartphone in your carry-on. Your itinerary, email and family may only be an electronic device away, but if your battery dies and the airline lost your luggage, you will be cast adrift in an unfamiliar place, unable to access anything. You can usually find an outlet for your charger in any airport terminal.

If you rent a vehicle at your travel destination, ask for one similar to yours at home. Trying to figure out where the wipers and lights are while navigating a strange place just adds unneeded stress.

If you follow these tips, you can avoid unnecessary stress, leaving you free to enjoy your stay. Don’t overdo it, though! Be sure to drink plenty of fluids so you don’t dehydrate, take naps when you body tells you and pace yourself. Make your visit memorable for all the right reasons. Happy travelling!

*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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