Dealing with Changes in Weather When You’re Living with Multiple Sclerosis Symptoms

Posted on September 20, 2013 by Ashley

Well, I can honestly tell you that I’m looking forward to the change in weather. Dealing with multiple days of 100+ degree weather is NOT fun.

The heat really bothers my MS, but then again so does weather change in general. I know I’m not the only one… but it’s really hard to deal with the way my MS “acts up” when the weather changes… it’s not something we can control (obviously).

By keeping an eye on the weather forecast, I know what to expect, but I also know that when the weather changes (which it drastically does in the great state of Texas) I need to take it easy. It sometimes feels as if my body is protesting the weather change… it doesn’t help that I have arthritis as well, from being a walking accident most of my life and breaking bones non stop.

I know everyone that lives further north, has a hard time dealing with cool weather, but I don’t have that problem, and I frequently joke on how I want to live in Alaska, or something. Where I wouldn’t have to deal with the constant heat here in Texas!

One way I’ve found to “help” my body’s aches and pains from the weather change is taking an Epsom salt bath. It really helps me relax, and I make sure not to have the water TOO warm. But, it does ease the ache my body gets when the weather is changing.

That’s all I have found that helps a little bit, when dealing with the weather… but I would love to hear how others cope with it.

It’s too bad we couldn’t conquer an Island, and name it MS Island, where it’s a wonderful 70 degrees outside constantly… One can dream 🙂

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.

*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/

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.

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.

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!

IRONMAN Part 2 – Race Day

Posted on July 2, 2013 by MSAA

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 8^th, 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.

An IRONMAN – Part I

Posted on July 1, 2013 by MSAA

By Lyle Anderson

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.

Tana Campbell’s Race of Hope – Part 3

Posted on June 14, 2013 by MSAA

By Tana Campbell

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

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