Talking with Friends and Family about Multiple Sclerosis & its Symptoms

Posted on September 23, 2013 by Samantha Schech

For this month, we focused our blog around managing MS. Some helpful tips were provided and the one that sticks out to me was about “asking for help”. Understanding your limits and what you are able to accomplish in a day is a great way to conserve your energy and focus on what is important. Often times it is important to involve those around you, but navigating the “how to” is a challenge.

For those who struggle with the symptoms of MS that may not be visible (i.e. fatigue, pain, and cognitive changes), the hidden symptoms of MS, asking for help from a friend or loved one can often be a daunting task. We frequently hear and read stories from individuals who feel guilty asking for help, because they don’t feel that they “look” sick. They fear they will be judged in asking for help.

It may be helpful, before you tell everyone about your MS symptoms to think; does this person play a significant role in my life? And, can I rely on them in the future if I need help? If the answer to both of these questions is yes, then it is time to put on your teacher hat and educate those identified helpers about what types of symptoms you experience and what they may look, or sound like, for you. MSAA’s The Motivator Winter/Spring 2013 edition discusses may of the hidden symptoms of MS: https://www.mymsaa.org/publications/motivator/winter-spring13/. This publication can be shared with friends and loved ones to further provide education and information.

Not every person with MS experiences symptoms in the same way, so providing information as to how MS looks and feels to you is very important. With more understanding and better education, we can hope to reduce the stigma around the hidden symptoms of MS and promote a more positive experience for both yourself and your loved ones.

Please share your experiences, have you had to educate your friends and loved ones about the symptoms of MS? What has worked for you?

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 🙂

The Time is Now to Start Something New: A Quick Step Guide for the MS Community

Posted on September 9, 2013 by Samantha Schech

“Your present circumstances don’t determine where you can go; they merely determine where you start.”

–Nido Qubein

As the summer comes to an end and we embark on the last few months of the year, it is time to challenge ourselves and start something new. Just as the kids prepare for the new school year, prepare yourself for a new task. Is there a goal you wish to accomplish, a skill you would like to learn, or maybe just a good book you’ve been meaning to read?

Starting something new can be scary, especially if you have tried unsuccessfully in the past. But from failure we can learn, and today is a new day.

First, decide what it is that you want to accomplish.
Second, set measureable goals for yourself, or mini-goals to help move you along.
Third, make it realistic. Many little successes over time reinforce your goals and set you up for success.
Fourth, set a deadline, but make sure to provide yourself with a reasonable amount of time to accomplish the task.
Last and more importantly, reward yourself! Even if you haven’t succeeded, you set out to try something new and have probably learned some things along the way.

Starting now, what goals would you like to accomplish?

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.

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

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.

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.

Parting Thoughts…

Posted on July 17, 2013 by MSAA

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

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

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

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

Swim for MS News – July 2013

Posted on July 12, 2013 by MSAA

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

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

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

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

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

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

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

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

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

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