About Samantha Schech

I am a Client Service Specialist 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.

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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Looking Back to Move Forward

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Subtle hints of fall have spread throughout the northeast – the falling leaves, cooler nights, pumpkins, and mums popping up in local stores. While summer is slowly on its way out, it is bitter sweet to reminisce about the times had. This summer we talked about ways to beat the heat, many of which involved remaining indoors, or doing activities in cool public places. Regardless of where you made your memories, it is important to keep those happy memories alive and present to take with you into the fall.

Journaling about an event or encounter that makes you smile will bring you back to that moment and hopefully increase your mood. You can look back at those journal entries and remember the good times that were had. Also having pictures or souvenirs from a trip or event can help to bring you back to that moment. Try taking a moment to close your eyes and remember how you felt at that time.

When times are hard or you are having difficult feelings about a situation, take a moment to re-focus your thoughts on one of those happier moments. Re-focusing your thoughts can help momentarily take your mind off of a certain problem or situation and better prepare you for dealing with the task at hand.

When looking back on those happy moments, focus on the feelings or emotions that were created in you at that time. Allow yourself to re-live that moment and take a deep breath.

What moments do you carry with you? How do they help you in times of stress?

 

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Assistive Technology for Individuals with MS

Over the course of years living with a disease such as MS, there may come a time when more assistance is needed to complete daily activities. Perhaps typing on the computer is becoming a challenge due to spasticity, or driving a vehicle has become difficult because of numbness in the leg. While it may not always be conducive to ask another person for help, perhaps a piece of equipment can aid in getting the task done more effectively. Assistive technology, or AT, is any item, piece of equipment, or software that is used to increase or improve the functional abilities of individuals with disabilities at school, work, home, and in the community.

Young woman with tablet computer and coffee

Assistive technology devices can assist those who may have difficulty with speech, typing, writing, cognition, walking, etc. In each state, a State Assistive Technology Project is available to provide information on assistive  technology and consultation about the type of technology piece that may be helpful. A borrowing program may also be available where the devices can be borrowed for up to a certain period of time to see if the device will be effective. Information about available loans to help with more expensive devices can be discussed as well.

In trying to determine the type of device that may be helpful for a specific need, working with a rehabilitation professional such as a physical or occupational therapist might help to clarify the type of device that would provide the best assistance. They can make specific recommendations of devices that can assist with a variety of needs and may also help with checking whether insurance will cover the item recommended.

What assistive devices have you used? What avenue did you take to receive the device?

 

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Identifying Community Resources for Individuals with MS

Working on the MSAA Helpline, we receive a wide array of calls asking for assistance locally within the community. Whether it is for in-home services, help with transportation, or housing assistance, the Helpline specialists work with the client to find a local group that can be of assistance. While it is challenging to find an MS-specific organization in the area, there are some local organizations designed to assist those living with a disability to keep them living independently in their homes.

One of the more common programs Helpline Specialists refer to is the Centers for Independent Living. These non-profit centers are consumer-controlled and located right in the community or surrounding area. These centers are staffed by individuals with disabilities and provide a variety of independent living services.

Fifty-one percent of staff, as well as the Board of Directors, within the Centers for Independent Living are individuals with disabilities. These centers provide four core services: information & referral, independent living skills training, individual and systems advocacy, and peer counseling.

While not MS-specific, the Centers for Independent Living understand the challenges faced when living with a disability and can make suggestions or provide direct programming to improve the quality of life of those living within their regions.

Search for your local Center for Independent Living and reach out to learn about the opportunities and assistance that may be available to you and your family. It can be challenging to reach out for help and support, especially if you are not quite sure of the need you may have. Start by talking with one of the peer counselors or support persons; in talking with them, you both may be able to clearly define some of the needs you may be having.

Have you reached out to community resources in the past? In which ways were they helpful to you?

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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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