End of Year Reflections

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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My MS Journey

By: Matt Cavallo

As an author and speaker, I have had the privilege of meeting people living with multiple sclerosis at MS events across the country. One of the ties that binds us is that we’re all different. Sure, we experience similar symptoms, whether they be vision, balance, memory related, or other, but each of our journeys is unique.

Whether you are just starting out as recently diagnosed person living with MS or are a seasoned traveler living with the disease for many years, there is a website available with resources to help assist you on that journey, My MS Journey.

My MS Journey organizes MS resources in a central location to help assist you with where you are at in your MS journey. The resources are categorized in an easy-to-use, searchable format. The following blog is step-by-step instruction of how to find information on the site.

5 Steps for Navigating My MS Journey

Let’s say for example that you were newly diagnosed and wanted a resource on how to talk to family and friends. My MS Journey can help using the following steps:

1. Enter the following link into your internet browser: http://mymsaa.org/journey/
2. Click on the picture or heading for your particular journey, in this case Just Starting Out:

MyMSJourney

3. Click on the section header to expand the section, and then click on the hyperlink to open the resource that you would like to select.

juststartingout 4. A new browser window will open up displaying the resource information that you were seeking.

includingfamilyandfriends 5. When you have finished accessing the information, you can either close the tab or click the My MS Journey tab to return to the main site.

Additional Functionality
While My MS Journey is categorized into sections with content and resources to assist you in each step of your journey, the home page of My MS Journey has additional functionality relevant to everyone living with MS.

A. Site Preferences – allows you to control your font size preferences, access keys, and print options to make the site more accessible for you.
B. Helpful links – these links provide tools and resources to help you better manage your MS, like the MS Resource Locator and Prescription Assistance Programs.
C. MS Trivia – impress your friends and family with how much you know about MS by participating in the trivia section. Once you make a selection, the right answer will be displayed along with how others answered.

The front page also allows you to share this site on social media. Sharing this site is important because of all the great resources provided by MSAA to help each one of us living with MS on our journey. Sharing resources that help each of us on our journey helps strengthen the MS community. Thank you for reading and I hope you take advantage of all the great resources that MSAA and My MS Journey have to offer!

*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/

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November 2014 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

MSAA is very proud to present our 2014 Art Showcase - celebrating the work of artists affected by MS.

We have received many wonderful submissions from across the country and are delighted to share their work and their stories with you. Please visit our online gallery to view all of the new submissions.

November Artist of the Month:
Terry Densford – Jacksonville, FL

 Terry Densford - Blue Blue

About the Artist:

I was diagnosed with MS on July 4th, 2011 – an easy date to remember…my MS affects my right side, from my face down to my toes, making it hard to speak, write, and other things we sometimes take for granted…

MS is something that hovers over my head. Will it get worse? If it does, how will it affect my life? When is the next time I will have another flare up? Where will I be? What will I be doing? Is my hand just asleep, or is it my MS? All normal questions I believe anyone who struggles with MS, unfortunately, asks themselves on a regular basis. All that being said, I consider myself lucky. I feel fortunate that I was diagnosed early; that there are medical advances out there that have helped me keep this disease under control. I push fear aside so I can continue to move forward. I intend to live my life as if there isn’t anything hindering its quality.”

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Be inspired – please send an online card featuring artwork by MS artist Terry Densford and spread awareness of MS and MSAA.

Calling All Artists with MS
It’s that time of year – MSAA is now accepting submissions for our 2015 Art Showcase! If you haven’t already done so, submit your best artwork by December 18th 2014 for a chance to be a part of next year’s Art Showcase.  

Submit your artwork for the 2015 MSAA Art Showcase.

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Being Careful to a Fault

There is a very common saying – “you can never be too careful” – which indicates that being cautious and careful in our actions is a good way to avoid all kinds of negative outcomes or disruptions in our lives. But there is such a thing as being too careful.

By cyclonebill (Iskaffe) [CC-BY-SA-2.0 (http://creativecommons.org/licenses/by-sa/2.0)], via Wikimedia CommonsI’m reminded of when trying to pour something how you typically line it up and pour carefully so as not to spill any liquid. Sometimes the angles or shapes of the object you are pouring will not match up in the right way, and if you pour too slowly some liquid can spill out the side. Alternately, if you are pouring slowly and carefully but the cup is heavy, your hand might begin to tremble or shake, causing you to spill. Sometimes you’ve just got to go for it, and take the risk of making a huge mess with the fast pour.

The same things happen in life; sometimes you decide you just need to make a change and go after it. It may not always work out, but life has its own ups and downs, and carefully laid plans don’t always work out either. If there is something you have been wanting or waiting to do but are too risk adverse, remember that there are times to try and line things up carefully and go through all the actions to obtain an outcome in a planned out way, and sometimes you just have to take charge and make it happen whenever that opportunity arises.

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National Day of Gratitude

“Feeling gratitude and not expressing it is like wrapping a present and not giving it.”
― William Arthur Ward

Thank someone on National Day of GratitudeRecently on Facebook, a trend has emerged where individuals are challenged to list three things that they are thankful for and re-post three new things for five days in a row. At the end of the five days, they are to nominate other friends to complete the five-day challenge.

Although sharing feelings of appreciation or value can occur on any day, sometimes it takes a nomination from a friend, or a national “holiday” to remind us to share those thoughts with others. The expression of personal emotions and feelings are often the most difficult to convey. Assumptions are made that the other party understands our feelings without ever discussing them. But as the quote at the top illustrates, having gratitude means nothing without sharing it with others.

So while it is important to personally remind ourselves of the things we feel grateful for, it is also important to share it. Writing a letter, posting to Facebook, or making a phone call are some of the ways to reach out to someone to say that you are grateful for them.

This Sunday, September 21st is the National Day of Gratitude. In what ways will you show your gratitude? Leave a message in the comments section to share your appreciation and gratefulness.

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September 2014 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

MSAA is very proud to present our 2014 Art Showcase - celebrating the work of artists affected by MS.

We have received many wonderful submissions from across the country and are delighted to share their work and their stories with you. Please visit our online gallery to view all of the new submissions.

September Artist of the Month:
Laura Patchen – Pittsford, NY

 Laura Patchen - Alma Mater

About the Artist:

“I was diagnosed with multiple sclerosis in November of 1998. At the time, my daughters were just 8, 10 and 13, and I had a flourishing career as a speech-language pathologist in private practice. I feared that my life would change, and it has, but not quite in the ways I thought it would. I had to stop working in 2005, due to physical and cognitive limitations. It was difficult to give up something I loved to do, but eventually, I’ve found other things, including painting.

The “Alma Mater” is the building my speech classes were held in….a wink to the past, and a fond memory. Life goes on, MS causes changes, but being able to document important memories in acrylics helps me cope.”
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Be inspired – please send an online card featuring artwork by MS artist Laura Patchen and spread awareness of MS and MSAA.

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You’re My Person…

rsz_shutterstock_84632779

So in our day to day we sometimes overlook things that are important to us. It’s not done on purpose or due to an act of spite; it’s realistic that things get pushed to the side when we have so many other things going on. In a world such as ours with life going a mile a minute, how can things not go unnoticed? But when you do have time to talk, to listen, and be with someone else, who brings out the best of who you are? Who’s your person? Who is that being you turn to when you need someone to confide in? What is it about this person that makes you feel so comforted in communicating with them?

Every individual is different; thank goodness for that! It’s a person’s quirks, attributes, and strengths that attract us to them in the first place. We like when someone is different from us so they can offer new perspectives on things, but we also like when we share the same interests and personality traits that make the relationship flow so well. We tend to look for connections that will hopefully bring out the best in us – someone to complement our traits and allow the best part of us to shine through. We confide in others when we need to vent, discuss things out loud, and find validation for what we’re going through. It’s comforting to know that someone else is there when we need to reach out.

Your go-to person may be a family member, friend, significant other, or someone else – the relationship title doesn’t make a difference. It’s the communication and bond you share that matters. Family members may drive you crazy at times, but sometimes they’re the ones you’re closest to, without even realizing it. If you are still looking for your ‘person,’ that one who you can confide in and turn to in times of need, take another look; they may already be a part of your life…..

Who’s your person?

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Identifying Communication Barriers

Young couple in bed - distressed and sleeping

Throughout our lives we have all experienced a time or two where a complete lack of communication has occurred and something has gone wrong, whether someone didn’t get the toilet paper at the store, or someone forgot to pick the kids up at daycare. It’s often easy to say that there is a communication problem, but finding a solution or working towards improving communication is a whole other beast to try and tackle.

Identifying that there is a communication problem is the first step in correcting it. It may also be helpful to try and determine the type of communication problem you are having. When specifically talking about relationships and communication, the following are some of the more common communication problems that can be seen:

    • The “assumers”: those who think they know what the other person is saying or thinking, but don’t ask how they are feeling. Most commonly you will hear from these individuals something along the lines of, “Oh, I don’t have to ask him/her, I know what they will say.”
        • By making an assumption about what another person might say or feel, you are closing out the opportunity to have a conversation about a topic.
        • Start by using phrases such as, “Would you like to?” or, “What do you think about…?”
        • Avoid using phrases such as, “I know what you’ll say,” or “I probably already know the answer.”
    • Those that “read between the lines”: these individuals create false scenarios about every possible answer, thought, or feeling that could be occurring in the other individual. Most commonly, these are the “what if” individuals, who you will hear say things along the lines of “when he/she says ____, do you think they mean ___ what if they really think____?”.
        • By creating these scenarios, the individuals are removing themselves and distancing themselves more from the individual.
        • If you are unsure about a person’s response, use some clarifying statements to learn more about how they may really be feeling: “Can you tell me more about that?” or “Help me understand what you’re saying.”
        • Avoid using phrases such as, “I know what you’re really saying is ___.”; this type of statement pushes the other party further away and does not make them feel secure in their responses to you.
    • The “keep quiet and this will pass” type: for this type of individual, it is the complete lack of communication that leads to more issues in the relationship. These individuals choose not to pose questions or speak to their partners in hopes that things will get better on their own.
        • By choosing to not speak up about concerns that may be bothering you, you are sending a message that things are OK, and the things you were hoping would pass may not.
        • Open yourself up with some feeling statements like, “I feel like ___ when you say/do ___.” When focusing on yourself and your feelings, you give the other person the perspective of how they may be influencing you.
        • Avoid using phrases that may indicate blame such as, “You never ask me about my day.” Using these phrases may spark a defensive reaction from the other individual.

These are just a few examples of some of the communication challenges that individuals may face. It can be difficult to think of ourselves as doing something bad or wrong, or in any way hindering our relationships. But I encourage you to look at your current relationships and think about how your communication styles may be influencing the relationship. In what ways can you see yourself making changes? Have you found something that works for you and your partner?

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Celebrating My Birthday Despite MS

Pic 1

By: Matt Cavallo 

This weekend we were celebrating my birthday. A birthday is generally a cause for celebration, but when you are living with multiple sclerosis, sometimes you don’t feel like celebrating. Especially if you live near Phoenix and high temperature on the day of your celebration was 111 degrees. I was feeling fatigued, overheated, and wanted to stay in bed all day. I was considering cancelling the dinner, but there was one party guest that had been waiting months for this night.

I had promised my son that we would go to Rustler’s Rooste, a famous Phoenix steakhouse, known for serving Rattlesnake. My oldest son is currently obsessed with snakes. A couple months back, he attended a birthday party that had an entertainer with exotic animals. At that party, he got to handle a snake and has wanted one ever since. I made the mistake of mentioning to him that a Phoenix steak house served Rattlesnake as an appetizer. He made me promise that I would take him for Rattlesnake. Even though I didn’t feel like going out, he needed me to live up to that promise.

As I laid in bed before I needed to get up and get ready to go to the steakhouse, I contemplated how MS had stopped me from going to other social events in the past. For a period of time, I had isolated myself from my friends and family because of how I felt. It got to the point where people stopped inviting me to events because they knew I wasn’t going to show. Now, here I was on the verge of letting MS fatigue and heat intolerance affect celebrating my own birthday and sacrifice the promise I made to my son.

As the clock ticked closer to our reservations, my fatigue and heat intolerance were not letting up. Neither was my son’s talk of finally getting to live his dream of eating Rattlesnake. I had a decision to make: was I going to let MS win and stay home, or was I going to fulfill my promise to my son?

Despite the MS fatigue and heat, I rose to the occasion. I took an ice cold shower, and we went over to the steakhouse. The boys had a great time, and so did I. I was happy that I had forced myself to go. Cooling myself down helped me handle the heat. More importantly, I didn’t let my MS keep me from making memories with my boys. The biggest surprise was that my boys liked eating the Rattlesnake. My oldest said it tasted liked fried chicken!

*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/

 

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Just Do It, pushing past the fear

In my attempt to become more physically active this year and try something new, I found myself curious to adventure out into the “exercise class” realm of the fitness world. Historically, I have always been a very strong person, weight lifting and cardio training on a machine has always come fairly easy. I can maneuver through a gym and get my routine done pretty easily. But needless to say, I am not the most coordinated person, I could never visualize myself taking a class where following a routine was required.

For the longest time I have wanted to try a Zumba class, but the fear of other’s judgment has held me back. In my strive to be perfect, it was hard for me to imagine not being good at something. I could just imagine myself surrounded by a group of women who can seamlessly follow the direction of the instructor and dance their hearts out for an hour. Not to mention, the room is encased in mirrors, adding to my fear of seeing myself look ridiculous.

Last week I made the call to a local fitness studio to inquire about their classes, I spoke with the owner and told her how I had wanted to join for a while now, but hadn’t come around to it. Her immediate response was “what’s taken you so long, get your butt in here”! It didn’t take long to persuade me, and the next day there I was.

I have to admit, I did think about chickening out at least a dozen times, but I pushed myself to move past my fear and go to the class. It is easier said than done, but we should not allow ourselves to miss out on life’s great opportunities because of fear, especially fear around the perceived thoughts of others. My fear of not being perfect and that everyone in the class would laugh at me almost prevented me from enjoying myself.

Although the class was hard and I was behind on almost every step, I wasn’t the only person. Looking around, the majority of the women were not the Britney Spears backup dancers I had imagined. We were all there for the sole purpose, to dance, have fun, and burn some calories.

The moral of this story is, we all have things we are afraid of but every once in a while we have to push past the fear to give things a chance. Maybe it works out, maybe it doesn’t but at least we would know for a fact instead of imagining a scenario in our heads.

Is there anything that you have wanted to do, or try, or ask, but have been held back because of fear? How do you plan to move past it?

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