Have a Safe and Happy New Year

Posted on December 30, 2015 by MSAA

From everyone here at MSAA Headquarters, we wish you a safe and Happy New Year. While we reflect back on 2015 a quote comes to mind:

“Year’s end is neither an end nor a beginning but a going on, with all the wisdom that experience can instill in us.”

-Hal Borland

As we move into the new year, use the challenges of the past as propellers for wisdom and guidance in 2016; with every challenge a new opportunity is born.

PLEASE NOTE: MSAA’s offices will be closed Thursday, December 31st, through Sunday, January 3rd.

Making Comparisons with MS – Community Feedback

Posted on September 25, 2015 by MultipleSclerosis.net

There are so many aspects of living with MS that are frustrating, and sometimes those frustrations occur when interacting with people who do not have MS. One of our amazing contributors, Ashley Ringstaff, shared her feelings about people comparing their experiences with things like fatigue, pain, numbness, and other symptoms with those symptoms in someone who has MS. Many of our community members shared their thoughts and experiences with us after reading Ashley’s article, “You Can’t Compare…”. Here is what they had to say:

“Healthy” People Just Don’t Understand

This is something that I just cannot seem to communicate to certain people who don’t have MS or have never been chronically ill. “Healthy” people just cannot empathize, and I know because I used to be one and now my experience is completely different.
The best is when people who know I have MS contact me and tell me they feel they are having symptoms and think they might have MS too – as if I can diagnose them! I try to see it from their perspective but it’s very difficult. ‪Also when I say I’m fatigued- they say they get that way too all the time! I want to explain to them that they have no idea. But I just smile.
When I try to talk to family members, they say they get dizzy, or they stagger around, etc. I just stop talking and tell them they should get checked out. Even my husband doesn’t totally understand what I go through on a daily basis. I just get so frustrated that I can’t do everything I use to do.
I hate that my best friend who I haven’t been able to see that much in the past year constantly compares my issue with MS to her chronic pain in her hip, telling me she knows exactly how I feel.
When I tell people I can’t be in the heat (for me it’s anything above 70) they say “I don’t like the heat either”. I just look at them dumbfounded. I want to yell “When was the last time you got warm and couldn’t lift your legs to walk or think yourself.
You know, it is natural to feel this way. I am a 15-year stroke survivor and am irritated when someone (who has never experienced a stroke) says they know how I feel. The best common factor I’ve found is any type of trauma.

It’s really not possible to compare

You can’t even compare your symptoms with others experience who do have MS, or for that matter, I can’t even compare the last time I had a given symptom to what I experience this time.
I know there are many people in the world with diseases that are even worse than MS, so who compares what anyway? Just try to feel good for yourself and forget about complaining.
It’s next to impossible to explain what having multiple sclerosis is like to people.

“Healthy” People offer a lot of unsolicited advice

They ask how I am feeling, so I tell them. The response is always “have you tried such and such” or “that happens to me, too.” Now I only share my symptoms and feelings with medical professionals and a couple of friends who truly do understand. Family? Forget it.
I love when people say “you would feel better if you lose weight or eat healthier” or the classic “exercise would make you feel great”. My family and friends mean well but don’t always say the right things.

“Healthy” People are just trying to relate to us – it’s harmless

I like to be more optimistic – I believe, most of the time, they are trying to relate. Unless they are significant in my life, I don’t try to differentiate.
I feel the majority are trying to empathize. Most just don’t know how to react when you tell them you have MS because they don’t understand what it means.

What about you? Do you find that “healthy” people try to compare their symptoms with yours? Share with us in the comments!

My MS Manager – A Free Mobile App for the MS Community

Posted on June 19, 2015 by MSAA

My MS Manager is the first-of-its-kind mobile phone app designed specifically to help individuals with MS and their care partners better manage the ever-changing course of the disease.

In December 2014, MSAA re-launched the updated app with new features that will enhance usability.The updated My MS Manager app includes options to:

Track symptoms and disease activity
Input and store important medical information
Generate useful charts and reports for easy tracking of treatments, moods, symptoms, and more
And – exclusive to My MS Manager – connect directly with your physician via the app to share your progress and reports securely and as needed.

This convenient tool is available as a free download for both Apple and Android mobile devices.

If you need assistance with the app, please call (800) 772-8277, ext. 178 or email us at apphelp@mymsaa.org.

Loving Yourself First

Posted on February 16, 2015 by Samantha Schech

What is love? Webster’s dictionary defines love as “a feeling of strong or constant affection for a person”. After a day like Valentine’s Day, it is hard not to question the concept of love. Perhaps you are in a long term relationship, maybe you have yet to find love, or have just ended a relationship. By definition, love doesn’t solely rely on a relation with another person, it can define the feeling you have for yourself as well.

Truly loving yourself and having the respect for the person that you have become can be a challenge for some. Uncontrollable events occur in life that may change the way that one perceives themselves. Perhaps there are goals or outcomes that seem unmet, or feelings that are unresolved. Coming to a place of understanding and acceptance of the uncontrollable events and embracing the change they may have created is the first step in loving who you are as a person.

By accepting the changes that have occurred, you allow yourself to move forward without any self-doubts or negative thoughts. But this too is a process. One does not wake up one morning and choose to accept the many years of life’s up and downs. Daily affirmations or positive thoughts about your self can be an effective way to practice self-love and acceptance. You can create your own, or utilize one of the many that can be found in books or online.

The Law of Attraction states, “like attracts like”, meaning, what you put out into the world, is what you attract. If you feel positively about yourself and love yourself, you will attract that same level of positive energy in another. When you don’t like yourself, or don’t feel yourself worthy of love, it can be difficult for someone to find that in you as well.

The change to a place of self-acceptance and love cannot occur overnight. If you feel as though you need additional support or help in removing the self-doubts or negative thoughts, a counselor may be able to assist in getting to the root of those feelings. Everyone has a right to be accepted and loved, personally and by others. If possible, seek help from a support group or counselor. It is never too late to make a change.

“The turning point in the process of growing up is when you discover the core of strength within you that survives all hurt” –Max Lerner

References:
http://www.merriam-webster.com/dictionary/love

Do What Makes You Happy

Posted on January 21, 2015 by Angel Blair

Happy. It’s such a simple word that carries with it so many huge notions and feelings. It is strived for and achieved every day and thought of as an important goal by many. People wish to be happy. I think there is an innate characteristic that many people hold that strives to make other people happy also – to obtain their approval, to have others’ needs be granted and satisfied too. It is human nature to put other’s needs ahead of your own at times, especially in close and supportive relationships. But I think too often people tend to ignore or forget their own needs and their own paths to achieving happiness. It’s not through any fault of their own; when we care for others it sustains us and creates rewarding and happy feelings that tend to satisfy us. But what about the things you can do for yourself that make you happy?

Ok, so realistically life can be crazy and hectic at times, so who has the extra time to spend to do all of the things that ultimately make you happy? Challenges arise, life gets complicated, and things get in the way so it’s hard to focus at times. But sometimes it’s about the little moments, the small fragments of time where you can step away from the obstacles and do something that makes you happy, no matter the task. Life is too precious and too valuable to not do the things that you enjoy and that will bring you happiness and moments to treasure in the days ahead.

It doesn’t have to be every moment of every day, but when you can, take some time to think about what it is that makes you happy, what you would enjoy doing or something new you’ve wanted to try. We’ve again stepped into a new year where people can start things fresh and reflect on their wants and needs. So why not start these new beginnings by doing something that makes you happy?

We need a clean-up on aisle 7…

Posted on January 14, 2015 by MSAA

Sometimes it is easy to decide when to let something go. When a child outgrows his/her clothes or toys it may be easy to identify that those items would better serve someone else and then look to donate or trash/recycle the items based on their wear.

Other times it may be much harder to identify what needs to stay and what needs to go such that the clutter and chaos of too many “things” begins to build. It might be the clothes you were hanging onto in case you lost/gained some weight, not knowing which financial statements or receipts are important to hold onto, or it might even be the gifts and knickknacks which looked so cute when they were received but have never found a home on your shelves. For many people it is a combination of different types of clutter which may cause of sense of dread or feeling of being overwhelmed with not knowing how to get started with the clean-up.

Whatever is muddling up your life try the following tips to get started in clearing out the clutter:

1. Create a list. Compartmentalize where the problems lie so you can create a plan of action for how to deal with them.
2. Identify why you have held onto the items. Sometimes items hold sentimental value, monetary value, or serve a specific purpose and must be retained (i.e. tax papers).
3. Decide which task to tackle first and set a timeline.
4. Ask for help (sometimes it takes a helping hand to sort things out).
5. Get to work! Start on your first goal area with a keep, organize/file, and trash/recycle pile.
6. Don’t beat yourself up if the clean-up isn’t happening as quickly as you wanted.

Taking pro-active steps to clear out the clutter can help in the long run to reduce stress levels and help you to live a simpler life.

Winding Down from the Holidays

Posted on January 12, 2015 by Samantha Schech

As the holiday season comes to a halt, signs of the New Year are all around us. While families are taking down and storing away decorations, stores are preparing for the next holiday. Windows and aisles are filled with red and pink candies, hearts, and flower holding bears. With all of the displays and reminders about Valentine’s Day, it’s hard not to be swept back up into another holiday.

January is typically the month of New Year’s Resolutions, with everyone vowing to make changes or set goals for the new year. January can also be a time for a re-set. Before jumping back into another holiday, take some time to focus on you and do something that you enjoy, or perhaps have put off over the last few months.

Changing the mentality of getting a jump start on the new year to one of sanctity and calm, may be beneficial for people who find themselves getting caught up in the hustle and bustle of life and forgetting to care for themselves.

Take some time during the day, even as little as 10 minutes, to do something that makes you happy. Sometimes even just sitting in a quiet space and taking a few deep breaths can calm you and prepare you for your next task. It is OK to take time for yourself. By doing so, you are allowing your best self to come forward.

How do you plan to care for yourself this year?

How Small Changes Can Make a Big Difference in the New Year

Posted on January 7, 2015 by MSAA

By: Matt Cavallo

While most people are planning for their New Year’s resolutions, many of us with multiple sclerosis are just trying to feel normal again after all the holiday activities. The problem with the holidays is that they take us out of our normal routines and create financial and emotional stress. When we go outside of our normal routine or have increased stress, we unknowingly put ourselves at risk for an MS exacerbation, or relapse.

Last year I blogged, “Tips for Avoiding a Post-Holiday Multiple Sclerosis Flare”, which can be read by clicking here. Those tips include: developing a financial plan, changing eating habits, exercising, getting back on your schedule and setting attainable goals. You can enjoy the holidays, but it is critical to have a plan to get back on track.

Most times my tips come from lessons I’ve learned the hard way. Instead of taking my own advice last year I tried to be super dad and ran myself ragged. I spent the next couple of months trying to recover from the MS fatigue, was unable to take off the extra holiday weight and had to buy new pants with a stretchy waist band.

You see, you don’t have to wait until the New Year for a do-over. Resolutions can start at any time. Mine was to ditch the stretchy pants. I made sure to start working towards it before the holiday season began. I also made a couple of smart decisions along the way.

I took extra time off to make sure that I wasn’t stressed with last minute running around. Taking care of the gifts ahead of time also softened the financial stress of the season, because the costs were spread out. We didn’t stray too much from our regular diet, but did allow some holiday goodies. I also made sure to take extra time to rest. Taking the time off to spend with my family allowed me to be super dad and catch up on rest.

With all of the planning I did ahead of time, I am much less stressed and fatigued than last year. I am also down a couple of pounds and can ditch the stretchy pants. I’m still not exactly where I want to be yet, but I am working on it. A pleasant side effect of implementing a resolution before the New Year is that I actually believe that I have some attainable goals that I can stick to.

What I learned is that I don’t need a holiday to commit to feeling better. I cannot control what MS does to me, but I can control other things like fitting into my pants. Making small changes can have a big impact on how you feel or how fatigued you are. What little changes are you going to make in 2015?

Thank you for your continued readership and support. Wishing you and yours a happy, healthy New Year!

*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/

Here’s to a New Year!

Posted on January 5, 2015 by Angel Blair

It’s time to celebrate a new year again, and with it, new hopes and goals for the upcoming months. A new year symbolizes many things but one of the most aspiring qualities it holds is promise. Things can be changed, new strategies can be created and thus new journeys can begin during this fresh start. No matter the venture, people can make choices and set goals that work to accommodate their needs and wants to make the year a memorable one.

Though each New Year represents the passing of time, it also ignites new beginnings and reminders that time is precious and to make each moment count. Resolutions are a common theme this time of year and one of the most popular items to add to one’s agenda. If you create resolutions for yourself make them attainable so they’re something you can commit to and strive for within the year. Form resolutions and goals that you’re passionate about so your interest in them remains strong. The New Year is just that, new, so take time to learn what the year has to offer and what you can obtain from it.

What will you be doing in the New Year?

End of Year Reflections

Posted on December 15, 2014 by MSAA

There’s a song lyric that says “It’s hard to remember we’re alive for the first time. It’s hard to remember, it’s hard to remember, we’re alive for the last time” (Modest Mouse). This poignant sentiment sums up a lot about our daily lives.

When you’re in the thick of your day-to-day routine it is easy to become bored or stagnant. When you are struggling with something it can be reflexive to focus only on the challenges and obstacles in your way as opposed to the strength and persistence required to make it through.

It’s easy to get caught up in just another day and forget about the wonder and marvel of life, and all the precious moments that you get to experience. True, not all moments are wonderful, but when you lose the spark of hope and wonder you lose something bigger and not just your inner philosopher.

First, cut yourself some slack, nobody gets everything right. Reflect and recognize that each day is a new one. If you are so inspired you can chose to think that with each day comes opportunity and choice. We may not be able to control everything but we can control some things.

Second, remember that no one’s life is endless. When reflecting on your own precious life you may find that there are opportunities and adventures you want to undertake. As 2014 winds down think about the journeys (metaphorical and physical) that you want to take and write them down. Some people might call it a bucket list, you may never get to all of them but you can keep trying and remembering.

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