About Samantha Schech

I am a Client Service Consultant here at MSAA. I have my Master's Degree in Social Service from Bryn Mawr College, a school just outside of Philadelphia. Originally from the Baltimore area, I am a huge Baltimore sports fan and am often heard cheering for the Ravens and Orioles. In my spare time, I enjoy cooking, traveling, and playing kickball with my friends in an adult sports league.

Communicating Effectively with MS

By: Matt Cavallo

One barrier to accepting that you are now a person living with multiple sclerosis is communication. When I was diagnosed with multiple sclerosis, it seemed that every conversation I had ended up being about my MS. Whether it was family, friends or co-workers, inevitably during the conversation the person I was talking to would pause and ask, “So, how do you feel? You look great.”

While these conversations were well-intentioned, no one picked up on the fact that I didn’t want to talk about my disease. All I wanted was to do was have regular conversations about sports, work or the weather. The kind of conversations we would have before I was diagnosed. More and more I found myself avoiding conversations rather than reliving my diagnosis over and over again.

This was causing a tremendous amount of stress in my life and that stress was affecting all the relationships in my life. Whether it was at work, friends, family or my wife, all these relationships were suffering as a result of the breakdown in communication. I then realized that I wasn’t going to be able to control the way the people talked to me about my disease. If I wanted to end the stress of talking to people about MS, I was either going to have to cut everyone out of my life or change how I communicated my illness.

For me, change does not come easy. One of my 7 Steps to Living Well with a Chronic Illness, is Learning to Communicate Effectively. I believe that when you are diagnosed with a chronic illness, like MS, you go through five stages of grieving: denial, anger, fear, grief and finally, acceptance. Learning how to communicate effectively is what helped me go through these stages. Instead of losing relationships because of my MS I started to make changes that allowed me to accept my MS.

Excerpt from 7 Steps to Living Well with a Chronic Illness
Rediscovering My Purposematt blog

I remember sitting in my doctor’s office in the spring on 2007. I had previously shared with her a draft of my memoir, The Dog Story: A Journey into a New Life with Multiple Sclerosis. She loved the passion in which I describe my writing. She said that I had an articulate, succinct way of telling my patient experience story. She also said that there was an opportunity to share my story at an upcoming patient support group meeting. Without thinking about it, I agreed to speak at the meeting.

Then on my way home, a rush of anxiety and fear overwhelmed me. What had I agreed to? I had never given a speech. I didn’t know what to say or where to start. When I got home, I talked to Jocelyn about the upcoming speech. Given all that I had been through with my disease process, she thought that it would be good for me to attend the support group in general. She also thought that I would be good as a speaker. I was skeptical…

… I put on a blue blazer, a button down white shirt, a pair of jeans and some blue tennis shoes. My cousin came with me to film the event. As we drove, the butterflies started to mount in my stomach. I walked into the hotel lobby and followed the signs to the meeting room for the support group.

In an instant I had forgotten everything that I was going to say. I started sweating and paused for what seemed like an eternity. All eyes were on me and the projector beam was like a white hot piercing spotlight in an interrogation room. The doctor introduced me and I walked to the front of the room, raised my right hand and waved.

“Good afternoon everyone!”

I collected myself and began again. Eventually I started to feel my rhythm. The sweat was no longer pouring and I found my confidence and timing. The crowd even erupted with laughter when I interjected a joke. I was surprised. It was a subtle joke, but they got it. When that happened, the words started rolling off my tongue and I told my story better than I ever had rehearsed it. The audience loved it. Everyone came up to me afterwards and said how much my talk meant to them. I was touched.

Looking back, standing up in front of that crowd and sharing my story changed the way I felt about communicating my MS. Up until that point, I was not comfortable talking about MS at all. And it wasn’t because I was sharing my story in a front of a room full of people that caused the change in me. It was everyone in the audience who shared their story with me after the talk that helped me understand that I wasn’t alone. People shared similar experiences and how hard it was to talk about their illness. Since that day, I have made it my mission to spread the word about living with MS.

If you are going through difficulty with you MS or having a hard time accepting your diagnosis, it is OK. You are not alone. Learning to communicate your story of living with MS will help you in accepting your condition. Once you learn how to effectively communicate your story with MS you will find that you are not alone and that you really do look great!

*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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Change and the Impacts on Your “Self” When You Have MS

“Change is the law of life. And those who look only to the past or present are certain to miss the future.”
-John F. Kennedy

By definition, the word change means to make or become different. But in what ways do we change? When I reflect on my life, I don’t think of my current self as any different from my past self. Certainly I have learned from my mistakes and have adapted, but I still think of myself as the same person I was many years ago. Maybe my taste in music or my physical appearance has changed, but morally and ethically I don’t think I have changed much.

Sometimes a chronic illness like MS may impact an individual’s views of themselves. By focusing only on the past and how MS may be impacting the present, like John F. Kennedy stated, you may “miss the future.”

I think that this quote is pretty powerful and allows for the opportunity to really think of who we are and what attributes of our “self” we consider important. In certain ways, all people may change over time, but focusing on the positive attributes of your life allows you to honor them and your sense of “self” and will guide you into the future.

What parts of your self have remained un-changed? In what ways are you honoring your self?

 

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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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Pushing the Limit When You Have Multiple Sclerosis

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Physical exercise for individuals with multiple sclerosis (MS) has been a hot topic over the last few years. While exercise is always encouraged to promote a healthy lifestyle and to increase physical function, many are still unaware of the types of exercise that can benefit those with MS.

At the Consortium of Multiple Sclerosis Centers (CMSC) conference last month, I attended a number of wonderful programs regarding exercise and MS, affirming the importance of an exercise routine. Many discussions were had regarding the level of physical activity and ways to work and improve the body’s ability.

In a recent article published by the Rocky Mountain MS Center, Dr. Timothy Vollmer discusses the importance of pushing oneself to the point of fatigue once a week during exercise. Similar to how a person might train for a marathon or endurance sport, Dr. Vollmer explains that when exercising using a normal routine, in order to see improvement one needs to push the limit of exertion once a week. By pushing the body’s limit, the body adapts and grows, making the activity less strenuous over time.

In many meetings at CMSC, researchers also discussed the idea of working the body to physical exertion. This is a major change in the minds of those in the MS community. Although the importance of exercise is stressed, research has not yet described the level of exercise that may be effective. I look forward to seeing how the paradigm shifts from “taking it easy” to “pushing beyond your limit” and what the research has to offer the MS community.

It is always recommended to start and continually monitor your fitness routine with a professional such as a physical therapist (PT). The PT can help determine your body’s capabilities and knows what your body’s limits are. A safe and effective fitness routine may help to improve physical function and promote a better quality of life.

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Vitamin D and Multiple Sclerosis

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Recently, new studies have begun to investigate a correlation between multiple sclerosis and Vitamin D. And, while it may be tempting to make changes to your daily routine based on the information presented in these studies, it is always important to discuss these changes with your neurologist first. As this information is passed throughout the MS community, it is important to be mindful of how your body absorbs Vitamin D.

One of the more natural ways the body absorbs Vitamin D is through the skin from sunlight. However, with the increase in cancerous skin diseases such as Melanoma, individuals are more vigilant regarding the exposure their skin receives and are using sunscreens to try and block some of the sun’s UV light. With this in mind, it may be important to talk to your doctor about other ways to increase the body’s exposure to Vitamin D. For many, taking supplements and being mindful to eat more foods enriched with Vitamin D assists in increasing the body’s Vitamin D levels.

Always consult with your doctor regarding the use of any supplements or in modifying your diet. Although you may find the foods and supplements to be helpful, they could also be harmful to individuals if not monitored closely.

 

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Doing What Makes YOU Feel Good When You Have MS

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Multiple sclerosis in itself is a complicated and often unpredictable disease. We here at MSAA hear on a daily basis about some of the trials and tribulations that our clients with MS face. One of the most valuable lessons that I have learned in trying to understand the whirlwind of information provided about MS is to find something that is meaningful to you and to your unique situation. With all of the information available, finding something that will make YOU feel good is a priority.

Through social media, websites, and support groups, information is provided about a number of hints, tips, or things that one person may have done to alleviate their symptom, which is wonderful, but unfortunately may not work for everyone. Not every individual with MS will experience the same symptoms and even for those who may, those symptoms may appear incredibly differently.

The point behind the story and the reason for the title is that everyone has their own needs, and each person understands and knows their body better than anyone else. These experiences and feelings are unique to you and should be treated independently to others’ beliefs and thoughts. Focusing and developing ways that make YOU feel good may help to improve your overall day to day.

Explore yourself; perhaps through journaling you can identify some needs that could be met in order to make you feel good. Guided meditation is another way to explore your inner thoughts and feelings. Sitting in a quiet space with yourself and learning about your body and the way that it feels at any point throughout the day can help to center you and focus on what your body needs.

What can you do for yourself today that will make YOU feel good?

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Developing New Ways of Thinking

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“Optimism is like a muscle. Gets stronger with use.”-Robin Roberts

Taking an optimistic view rather than focusing on negative thoughts can benefit your overall mental well-being. While it might take some time, eventually you may find that thinking positively starts to come more naturally. Consider putting some of the following tips into practice.

List five things that you are grateful for right now. Let this practice become a part of your daily or weekly routine. It may be helpful to hang your list in a spot where you may come across it often, so that you can take a moment to think about what you are grateful for.

Live in the present. Too much focus on future and past events can distract our minds from what is important today. Meditation and yoga can help in centering the mind and body, allowing you to identify with yourself in the present moment.

Surround yourself with positive people. Positive thought patterns are contagious, so surround yourself with people who make you happy and are optimistic.

Positive thinking and optimism does not come overnight, and you do not need to be a positive perfectionist. It may be challenging to try and find the positive in every aspect of your life – health, finances, relationships, and/or work. Focusing in one area will aid in building the skills to transfer into the other areas of your life.

What helps you to maintain positive thoughts?

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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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Celebrating our Earth

African-American family standing in park

With the hassles of our daily lives, it is often difficult to stop and smell the roses. When rushing from one place to another, we may miss the beauty around us. With so much going on in our personal lives, we need to be reminded to practice self-care, and take a break. This Tuesday, April 22nd, take a break from the hustle and bustle and enjoy your surroundings. April 22nd is universally known as Earth Day, the one day out of the year that we are reminded to honor the environment and pledge to respect our Earth.

This Earth Day, take a moment to enjoy what nature has provided. Throughout the country, many individuals choose to participate in community wide Earth Day events; here are some ways how you can celebrate the Earth in your own home.

Use power minimally:

  •  Allow the sun’s natural light to enter the home and light up your surroundings.
  •  Utilize nature’s natural dryer and hang clothing outside to dry.
  •  Unplug electronic devices that are not in use.

Prepare a fresh local meal:

  • Check out your local farmer’s market and support local agriculture. Click here to find one near you!
  • Try to avoid the oven – prepare a fresh dish from your findings at the market.

Garden:

  • Plant a tree, or flowers for your home. Trees, shrubs, and grass all help to eliminate carbon dioxide from the air.
  • Ask your local gardening center for tips on low maintenance plants and the best plant for your area.

Reduce, Reuse and Recycle:

  • Learn about your community’s recycling program. Many cities offer programs to encourage recycling!

What activities do you have planned to celebrate our earth?

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Dental Hygiene and Multiple Sclerosis

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Dental issues can create a problem for anyone, but especially for individuals with MS.  Gum disease, abscesses, and decay can all lead to infections, which may cause MS symptoms to increase.  Often in the management of other health-related issues, dental issues are overlooked.  In coordinating MS doctors’ appointments and follow up’s, it is often a challenge to coordinate dental care as well.

Overall dental health is important for many reasons.  It promotes healthy eating and digestion, allowing our bodies to absorb the right amount of nutrients.  It is also an important factor in enhancing the enjoyment of food and being social.

Individuals with significant fatigue and/or mobility impairment may find office visits beyond those required for their MS care to be particularly difficult to manage. It may be helpful to inform the doctor or office staff of any difficulties you may have with fatigue or mobility.  For many, sitting in the dental chair for an hour can be quite uncomfortable due to these symptoms. Talk with the office staff about ways that this can be managed.  Perhaps, many of the initial “question and answer” type things can be performed while sitting or standing in a more comfortable position.

If the symptoms of MS are impacting the ability to brush and floss, speak with your doctor about other tools or adaptive devices that may be helpful.  If the grip on your toothbrush is too small, perhaps wrapping something around the base such as tape or an ace-bandage may assist with making the grip better.  You may also cut a tennis ball and place the toothbrush through the ball for a larger grip, or fasten a bicycle-type handle to the base.

Although it is recommended to brush and floss, don’t forget about the power of mouth wash.  Many washes offer an antiseptic quality that assists with fighting gum disease.  With gum and infections causing many dental issues, mouth wash may be an appropriate additive to your brushing routine to help try to prevent infections and inflammation.

With the changes in the Affordable Care Act and individuals now receiving greater access to medical care, it may be helpful to contact your insurer to learn about your dental benefits.  For those without coverage or without insurance, there are still many ways to be seen by a dentist.

Check out the following tips on how to find dental care for the uninsured:

  • Check for a local federally qualified health clinic which offers dental services
  • Look into local dental schools. Most of these teaching facilities have clinics that allow dental students to gain experience treating patients while providing care at a reduced cost. Experienced, licensed dentists closely supervise the students
  • Dental Lifelines Network offers information about free dental services in the area for those that qualify.  You can look up information about your state’s program on the program’s website: http://dentallifeline.org/
  • Dial 2-1-1 and connect with your local United Way. You may be directed to free or reduced cost dental services
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