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?

Where Do I Fit This In?: How to Prioritize When You Have MS

Posted on September 16, 2013 by Angel Blair

Let’s face it, life is hectic. It can be messy and chaotic, and that could be just your morning. We live in a world that thrives on fast-paced routines and schedules, so people rarely have time to manage their day to day, let alone trying to manage a chronic illness like MS. Medication and symptom management play a significant role in the course of this disease, so it can be challenging to find time in the day to fit these tasks in along with life’s expectations in general. How does one try to find time to rest, or jot down questions to ask the doctor at the next visit, or to document a new symptom that has come on? There seems to be a limited amount of hours in the day to complete all of these demanding limitless activities.

Here are some tips on how to manage these tasks along with the day to day:

Make time to take breaks. When you have a chance to rest, do so, even if for just a few moments in the day. It may be what you need to give yourself a boost or to take the time to write down a question for the doctor.
Have someone else help you! It’s challenging for some people to ask for help, but if it allows time for you to take care of yourself, ask!
Use the MSAA’s mobile phone application My MS Manager to help keep track of your symptoms and medical records, as well as current MS related news.
Prioritize! Sometimes there just isn’t enough time in the day to complete all tasks, but your health should be a top priority. Make yourself a list of attainable tasks to perform in a day, and make sure health related tasks come first.

What are some ways you manage the day to day?

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?

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/

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.

Staying Active with MS

Posted on June 28, 2013 by Ashley

Usually when we hear “stay active” people are referring to some sort of exercise. But, that’s not what I’m implying when I say it, I like to keep my mind active.

And I don’t mean keep your mind active by stressing about what’s going on in your life or how your MS is affecting you that particular day. I mean, test your brain. Play some games online that really make you think; get a crossword puzzle book; or you can play games on Facebook, like I do!

However, if it’s one of those days where you just don’t even want to think too hard, because your head just can’t handle it, get lost in a book! That’s my favorite thing to do! I don’t sit there and worry about what’s going on in my life when I get lost in reading a book that I can really get into.

I can’t even describe how time goes by when I’m doing these things and how I don’t worry about how I’m doing with my MS, or anything else going on in my life. My brain is being active, but not to the point where it’s stressful, it’s relaxing. Something I really enjoy that we do at MSWorld.org is every Friday Night at 8pm ET, we play “Trivia.” One of the chat hosts puts together an hours worth of trivia, and the whole chat room plays. It’s nothing that is a “competition” or makes you think too hard, it’s really fun and gets you thinking!

Of course, it’s always good to stay physically active with MS… that’s a given, but I like to have a workout session with my brain more often than physical workouts! Needless to say, the only physical workout I can endure with out “over doing” or hurting myself is swimming. And I’m not just talking about hurting myself from doing too much, but I have made a fool of myself at the gym because I’m a walking accident!

So since it’s Summer time, take this time to enjoy and get your brain working, but in a fun way!

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