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!

MSAA’s Artist of the Month for August 2013

Posted on August 5, 2013 by John MSAA

Presenting MSAA’s Artist of the Month for August 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 MSAA Art Showcase submissions.

August 2013 Artist of the Month:
Barbara Hall – Jersey Shore, PA

From the Artist:

“There are many faces to MS. I am one of those whose problems are hidden. Only my DR and I know what they are. So for the people who I have told, and that isn’t everyone, I am sure that they don’t take me too seriously. But that is ok. I have read that MS is the most misunderstood disease and I am sure that is correct.

I am just getting back to oil painting after many years of setting it aside because of doing other things. But I have found it so relaxing and rewarding for myself, even if no one sees any of my work. This MS Art Showcase is the perfect venue because finally someone else will view what I have completed.”
Read more

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

It’s that Time of Year Again….

Posted on August 2, 2013 by Angel Blair

Although the summer season has not officially come to an end, it’s that time of year again that reminds us to try to soak up what’s left of the summer sun. Though it may feel like the height of the summer season is passing, the heat may linger and stay well into September/early October as it has in the past. When this occurs we get to recapture the remnants of summer joys. If you like this season be sure to get out and embrace what’s left, because when you start seeing school supplies and Halloween decorations displayed while browsing in stores you know fall is just around the corner. Although for some the end to summer is a sad occasion, for others, especially those affected by the heat, it is a time well appreciated. So while it is not quite yet the official end of summer, time reminds us that seasons change, so enjoy what this season brings!

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.

Summer Travel Tips for Flying With MS: Part 1

Posted on July 29, 2013 by MSAA

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.

Running on Empty

Posted on July 26, 2013 by MSAA

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/.

What is a Pseudoexacerbation?

Posted on July 24, 2013 by Angel Blair

For many individuals with MS, the summer can be a difficult time. The heat and humidity may cause MS symptoms to flare and become agitated because of heat affecting one’s body temperature. For some who experience a worsening of symptoms in warm environments, this may actually be an example of a pseudoexacerbation. A pseudoexacerbation is a temporary worsening of MS symptoms, without the presence of actual myelin damage or inflammation. Other than heat, individuals may experience this as a result of other illnesses or infection. It is important to take note and be aware of what symptoms you are experiencing, how long they occur, and your environment surroundings. If you find yourself heat-sensitive, try to avoid warmer settings. Stay in air conditioned places, do outdoor activities either early in the day or after sunset when the temperature is cooler, and wear lighter weight clothing when needed. If you have concerns about or are experiencing new symptoms it is important to be aware of your activity and surroundings, especially during these warm summer months!

For more information on pseudoexacerbation, see the MSAA brochure, Understanding and Treating MS Relapses, https://mymsaa.org/publications/understanding-treating-relapses.

A Women’s Retreat

Posted on July 22, 2013 by Becky Remington

For the past 6 years, as a Regional Director for MSAA, I have done many patient and professional healthcare provider education programs, on many diverse topics related to MS. But my favorite programs are those aimed specifically for women with MS. We recently had a Women’s Retreat in Sheridan Wyoming, and 30 women with MS shared a very special weekend of fun, relaxation, education and friendship.

MS specialists like Amy McKay, a nutrition and exercise guru from Texas, shared dozens of tips to help maintain a high quality of life by trying to incorporate movement, healthy eating, balance in life, and finding- and sharing – happiness. The weekend included group discussions, new friends, and a chance to discover hidden talents and create a beautiful summer wreath. Add in the chick flick movie on Saturday night and you couldn’t find a happier group of women!

Of course we also learned about the newest MS therapies, and how to use the MSAA SEARCH program to determine, with your neurologist, the best course of treatment for each individual.

It is always hard on Sunday afternoon to say goodbye to all the new friends I have made at the retreats, and I see that sentiment echoed throughout the room. Many friendships, support groups and walking buddies are started during those three days!

When we have a women’s retreat in your neck of the woods, I hope you will consider signing up. We would love to have you!

The Other Side of the Lens – Working with Neurology Now

Posted on July 19, 2013 by Anna Webber

What a blessing this past year has been working with MSAA. After having announced my multiple sclerosis (MS) publicly, I have become overwhelmed with ardent, sincere responses and appreciation, stories, and gratitude.

Through my role as an ambassador for MSAA, I had the wonderful honor of being recognized in the publication, Neurology Now. Managing editor Mike Smolinsky and photographer Annie Levy requested a photo shoot and interview with an individual living with multiple sclerosis to feature in their publication, and I was chosen. It was a great honor to work with these two professionals.

Having my own portrait taken is, to say the least, a rare occasion for me. I knew Annie’s body of work, her stunning portraiture. Looking through her lens was not intimidating for me, but rather, it seemed no different than looking straight into her kind eyes. I was able to relax, feel comfortable, and be me. And of course, that is every photographer’s dream.

Finding out we lived so near to one another in Brooklyn, Mike and I were able to take some time to grab a coffee and meet in-person. For someone so busy to take the special time out of their day to get to know a subject made me realize that I was working with a rare and world-class group of people. After a full, enriching conversation, Mike and I had to part, knowing full well we could have gone on, and on, and on sharing ideas and stories until the sun went down.

Being recognized and working with the team at Neurology Now was a true joy, and an honor. Because of all the intricacies involved living with MS as a young female photographer, it feels liberating to speak openly to people who want to listen. Throughout the month my mailbox has claimed the most touching letters from Neurology Now readers all throughout the country. Getting to know these people and their stories, as well as feeling their gratitude and openness, has really been the true blessing. There is something about anonymity that can be a catalyst for conversation and sharing, straight away. Without judgment or fear, I have never known or have gotten to know others through such open lines of communication.

A very tender thanks to Neurology Now, MSAA, and to all the readers out there who I can now call my friends.

Check out Anna’s portrait in Neurology Now!

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