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?

Fall is Upon Us!

Posted on September 11, 2013 by Angel Blair

As the calendar reminds us to say goodbye to the summer season and hello to the beginning of fall, it’s a good time to start thinking about what the change of season means to you. Some people see the season change as something to embrace; to take advantage of being outdoors to enjoy the cooler temperatures, or to prepare for upcoming fall festivities and holidays that approach just as quickly as the seasons change. Do you enjoy the cool, leaf laden fall atmosphere? What about the shift from longer days to longer nights?

Children heading back to school and stores stocking up on holiday decorations are just some of the hallmarks that depict the fall season. The sound of leaves crunching under feet; the orange, red and yellow colors that paint the streets and the sight of birds making their way south for the upcoming winter months are some of the scenes that represent this fall solstice. What do you like most about the fall?

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/

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.

Thank You For All That You Do

Posted on August 28, 2013 by Samantha Schech

This month we focused on offering support and resources to the caregivers providing love and support to many with MS. We shared tips, stories, and resources for the caregivers who have dedicated their lives to helping others. On behalf of the entire MSAA staff, we say Thank You!

“It is one of the most beautiful compensations of life, that no man can sincerely try to help another without helping himself.”
–Ralph Waldo Emerson

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

Caring for You When You’re Caring for Someone with Multiple Sclerosis

Posted on August 19, 2013 by Angel Blair

Being a caregiver doesn’t always mean having time to take care of yourself, but at times it is exactly what’s needed in order to maintain your own wellbeing. Yes, it may not always fit into your schedule while taking care of others, but it requires some consideration so that you may carry out these other responsibilities. As a caregiver, self-care means having to make time during the busy day to do something for yourself. For some this is difficult to achieve or even fathom, because the person being cared for is your top priority. But, if possible, you may be able to make minor changes or tweaks to a routine that creates the time and space for this much needed self-care. Though caregiving can be unpredictable due to the changing nature of illness, it is important to take advantage of times where you can be taken care of too. Here are some suggestions to find these moments of self-care:

Take rests when they rest.
Eat regularly! Eating meals together can have an added quality time component too.
Venture outside of the home when you can. Running errands, going shopping, or even just taking a brief walk can provide some alone time needed to rejuvenate yourself (To search for respite resources in your area, see the ARCH National Respite Network and Resource Center, http://archrespite.org/home).
Talk! Caregiving can be an overwhelming and emotional journey, so if you have the opportunity to talk or vent about your experiences, do so. If you would like an objective third party to listen who’s not a family member or friend, it may be helpful talking to a counselor/therapist about your experiences in order to safely and effectively express your feelings in this role.

Caregiving is no easy task. It takes a lot of hard work, determination and commitment. So while you’re busy taking care of others, be sure to remember you, and that sometimes you need care too!

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