Relationships and MS – check out the new issue of The Motivator

Motivator_WS16_emailheaderThe latest issue of The Motivator is now available to order, download, or read the DIGITAL EDITION right on your desktop, tablet, or phone!

Included in this issue of The Motivator:

Cover Story:Motivator_WS16_digital_spread

Making the Most of Our Relationships: Helping ourselves and those around us to cope with MS

… From family and friends to employers and coworkers, the diagnosis of MS can impact how we interact and care for one another.
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Research News:
… Information is provided on three investigational medications as they make their way toward FDA approval, two of which are being studied for progressive MS.
Read the full story

Up Front:
… MSAA’s new President and CEO Gina Ross Murdoch talks about her exciting role as well as important events at MSAA.
Read the full story

Program Notes:
… The launch of MSAA’s redesigned and responsive website, ways to stay informed, and MSAA’s new video on pseudobulbar affect (PBA), are featured.
Read the full story

Read the latest issue of The Motivator – and be sure to check out all of the interactive features in the NEW digital edition by clicking “View Digital Edition” on the page!

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Breaking the Chain of Toxic Relationships with MS

By: Matt Cavallo 

I come from a large, close-knit Italian family that lives in a small town about eighteen miles south of Boston. When I was first being diagnosed with MS, my little brother was on a downward spiral into the world of drug addiction. He is only eighteen months younger than me and as a result we have a lot of common friends. During this time, my friends were telling me about his erratic behavior that was putting himself and others in danger. I decided, as the big brother, that I needed to talk to my parents about his condition and as a family we needed to intervene.

The reaction I got from my family was unpredictable. My entire family turned on me. My mom and dad told family, friends, as well as, people at church and at the country club what a horrible person I was. They were spreading lies about me which was turning people in the community against me. My mother eventually wrote a letter to me disowning me from the family.

My family’s public smear campaign deeply impacted me. The stress of being disowned was exacerbating my MS symptoms. In a small town, gossip travels fast. I was uncomfortable going to public places in my hometown because of the stares and judgment that I felt when I ran into former family friends. The problem still remained that my brother’s addiction was progressing and no one was doing anything to stop it. Rather, they were doing everything to enable it.

As my family relationships deteriorated, the tolls on my health were evident. Even though I loved my family enough to tell the truth about my brother, it was apparent that my decision to do so cost me most of my life-long relationships that I had in my hometown. The only way I was going to be able to stop the stress that was killing me was to eliminate these toxic relationships. I had to come to terms with the fact that I had done all that I could do and that their reaction wasn’t about me, rather it was their denial about my brother.

With my family bonds destroyed, so were my ties to my hometown. Jocelyn and I decided to move back to Arizona, where we met during our college years. About that time, my brother’s drug problem had boiled to the surface. He was now an intravenous drug user entering rehab. It was at this time that my mother realized what she had done.

Right before we left for Arizona, she came and apologized. After that, my dad came and apologized, as well. They both claimed that they didn’t know how bad it had gotten with my brother and that they were in denial. They said that they didn’t mean to destroy their relationship with me and pleaded for me to let them back into their lives. I forgave them and let them back into my life and let them establish a relationship with our children.

The broken chains of our family would not be fixed overnight. My brother’s heroin addiction has now taken an emotional and financial toll on my parents. My brother also contracted Hepatitis from sharing dirty needles. During one of his rehab stints in Arizona, he apologized to me for everything that the family did to me in order to protect him. He was broken hearted that I had been cast aside for trying to stop him from destroying his life. He said that I was the only one who ever tried to help him before it was too late.

Working on these toxic relationships has reduced my overall stress level and has been beneficial to my health. While it was hard to cut the ties, the decision to do so has put me in a better place overall. In my case the old adage was true. I loved them so I let them go and the ones who truly loved me returned. The ones who didn’t are no longer a part of my life. As a result, my life is happier, healthier with a greater sense of self-worth than when I was fostering those toxic relationships.

This was adapted from a passage in my second book, 7 Steps to Living Well with a Chronic Illness. It is accompanied by a Toxic Relationship Exercise and strategies for how to reevaluate toxic relationships in your life. If you are interested in my brother’s story you can learn more on my blog.

*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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Taking a Break

Sometimes we all just need a break from things. No matter what’s going on around you—whether it be in your relationships, work, family roles, etc. there are times when we need to take a step back and reflect on ourselves and our needs. Everyday challenges and obstacles can be difficult enough, but throw something like MS into the mix and the stressors can sometimes multiply. MS demands much from everyone it touches; unfortunately it makes no exceptions or allowances if there are other things already going on—it’s selfish that way. So there are times when those caring for individuals whom MS affects need some respite care-time to themselves.

The term respite means taking a break or relief period from something that may be somewhat stressful, difficult, or challenging. Those who provide caregiving to others may need periods of respite, even if it’s just for a brief time where they can step outside of their environment and do something else. This can be very important in relationships where a loved one provides care for another family member. Relationships themselves require a lot of maintenance most of the time and for them to continue working there are moments where those involved need space and time to themselves.

It’s an innate, human characteristic to feel the need to distance yourself from others sometimes. There are times when we all need to pause and catch our breath and examine our own needs, especially if we’re providing care to others around us. We need to be able to self-care in order to be depended on. There are different types of respite services and resources available, especially to care partners so that they can take time for themselves or other things and know that their loved ones are being cared for.

The following resources can help when searching for respite service information:

Family Caregiver Alliance
Phone (800) 445-8106 www.caregiver.org

Caregiver Action Network
Phone (202) 772-5050 www.caregiveraction.org

Eldercare Locator
Phone (800) 677-1116 www.eldercare.gov

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Relationship Changes: How an MS Diagnosis Can Change Relationships

By: Stacie Prada

The personal growth that can come after an MS diagnosis affects our relationships drastically. In facing our fears, the unpredictability of MS, and grieving the future we envisioned, our relationships can’t help but change. The experience reveals the dynamics that no longer support our mental and physical health or the future we now need. A friendship or marriage can blossom, or it can crumble from the magnitude and pace of change. And the outcome doesn’t dictate the value of the relationship, determine the efforts taken to maintain it, or judge each person’s character.

I may have been on a life path where my way of interacting would have evolved this way without an MS diagnosis, but I think the diagnosis definitely accelerated my need to take care of myself.

I don’t relate to people exactly the same anymore. I strive to notice when I’m contributing to a poor dynamic, own my words and actions, and distinguish between my issues and other people’s issues. It allows me to have some control over my life instead of unconsciously reacting to circumstances. It also reduces the stress that comes from feeling responsible for other people’s feelings and actions and trying to fix everything.

Some people saw this as rejection or abandonment. Others embraced it, and our interactions flourished. To me it felt like I was supporting them with new behaviors that weren’t at my expense and inviting them to join me.

I appreciate all of these relationships regardless of where they are today. These people are all a part of my life and history. I want to support them in their own life paths that are best for them whether our paths continue to cross or not.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38. Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

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Social Wellness

As our blog theme for the month will focus on various concepts of wellness, I wanted to emphasize that wellness does not necessarily mean just in the physical sense with diet and exercise. Wellness can encompass many different factors, including spirituality or social well-being. As with many notions and ideas we have, wellness too can be perceived differently by individuals, and there’s not only one right way of looking at it.

Social wellness can be just as important as other types because of the impact it can have on one’s body and mind. Taking care of yourself physically is vital, but taking care of and being mindful of your social needs is equally essential. Human beings are meant to connect to others to find fulfilling emotional and thoughtful interactions. Reaching out to other people to make ties that create happiness and contentment is one of the most basic human instincts. Of course there can be interactions and relationships along the way that don’t always bring this sense of fulfillment or joy. But again, it’s part of our nature to either work through these obstacles to work on trying to change and repair these ties, or to dissolve them if they are causing increased stress and harm. The latter decision can be very difficult, but it’s important to know when a relationship is not providing positive benefits but rather draining energy and support.

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There are different ways for people to get socially connected to one another. Joining something like an art or education class, or attending social events in your community are some of the ways to increase connections. Throughout the MS community there are various internet group forums and discussions online, an MS Friends telephone line, support group settings and MS educational events. The form of communication can vary in social circles too, as some may feel more comfortable interacting online or may have access issues to physically attending outings. No matter the method, having affirmative social bonds can help to increase positive wellness.

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Finding Peace

Did you know that September 21st is known as the International Day of Peace, or World Peace Day? A day that encourages peace and the strength of positive ideas and movements, this internationally observed time is celebrated throughout countries across the world.

In a society that’s currently faced with some troubling and distressing times, it’s important to reflect on the idea of peace and what it means to you. It doesn’t have to look the same from person to person because everyone is unique in their own thoughts and feelings. It’s about carrying out behaviors and actions that can increase positivity and optimism and a sense of tranquility.

The things that can endorse and increase peace do not have to be grand gestures. It can be personal and private moments where you find strength from certain actions, or it can be doing good deeds for others and promoting positive thinking. The possibilities of peace can be endless because the gestures and concept behind it are endless.

You can find peace through meditation, songs, books, your relationships with others and yourself. You can choose to get involved in community activities or ask others to join events that help promote peaceful and positive thinking. No matter the task, the idea of peace can be translated in many different forms and its message remains everlasting.

What brings you peace?

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Positive Surroundings

I recently saw a quote that said “Negativity may knock at your door, but that doesn’t mean you have to let it in.” This really resonated because there are times in life that negativity does try to seep in and corrupt happiness and positive feelings. It emits toxicity and wants to take control over everything – and sometimes it’s hard not to feed into it and become consumed by it, especially when it presents with life circumstances that are unexpected and unwelcome.

It’s inevitable that at some point throughout life everyone experiences difficult times that unfortunately they have no control over. Things happen, obstacles or illnesses that we can’t foresee, but it’s important to know the aspects of your life that you do have control over. The people and influences that you choose to make a part of your life can be positive ones – you can make the choice to surround yourself with positive reinforcement and encouragement by choosing who you want to be a part of your inner support network. Are there times that we can’t control who are a part of our day to day lives? Of course. But sometimes you can control the frequency or duration of these interactions with others – even though sometimes this may be more difficult to accomplish. Let’s say if it’s family or friends that emit negativity, it can be more challenging to control and limit these exchanges because of the nature of the relationship. However, if there are moments that their negativity is all consuming and blocks out all that can be uplifting and positive, you can respectfully remove yourself from the situation.

One way to decrease negative energy is to purposely and consciously surround yourself with positive energy. Doing things you enjoy, communicating with others who make you feel supported and inspired and letting yourself experience good moments are ways to increase affirmation and optimism. When you have the chance to remove yourself from a negative encounter, be sure to book end it with a positive one, so that way at the end of the day, light conquers all.

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Sometimes Things Change…

Change is something that can be unavoidable at times and not always favored, nor asked for or necessarily welcomed. Though sometimes it can be difficult, there may be times when change is needed to make certain things more manageable. As it can be known to cause shifts in all types of roles, relationships, plans, or daily routines, adjusting to change can have impacts not just on yourself but those around you as well. One of the significant pieces needed throughout the change process is communication. Communication with family, friends, support networks, medical teams and others within your circle is important to be able to discuss what change has occurred and what can be done to accommodate it.

When dealing with something like a chronic illness, change can particularly affect family and relationship roles and dynamics. This can be difficult for all the family members involved. It can be difficult to change a routine and how things used to flow from one day to the next.  Say one family member has been known to be the ‘caregiver’ to the others, taking care of the household duties and responsibilities. What if they suddenly need to be the one being cared for due to an illness? This can create a shift in how the household duties are shared and now need to be assigned to others.

Communicating how these changes affect the relationships is important. Feeling frustrated, confused, or even angry at times is ok because things are different. The critical point is to make sure that these thoughts and feelings are expressed to ensure that all people feel they are heard and that their feelings are validated and valued. Seeking some type of family counseling supports can be beneficial to talk about change in a safe and open format—so that all of those affected can discuss it.

Has change affected any of your relationships? How did you approach this?

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Building a Relationship with Your Healthcare Provider

Not long ago, patients expected their doctor to tell them what to do about their health and doctors expected patients to follow orders. With the growth and expansion of technology, individuals are given an opportunity to read medical journals, watch health-related television, and visit information sites regarding their specific condition.

With the expansion of medical knowledge, there has been a shift in the doctor-patient relationship. Patients are now expected and encouraged to ask questions and have medical discussions about their care. Some doctors are more open to this relationship than others, so how do you build a relationship with a doctor who may not be as open to this type of relationship?

Communication in any relationship is a key factor; having a discussion with your doctor about what you are and are not comfortable with is very important. By having this conversation, assumptions about what you may or may not know about your disease, or the treatment options is avoided. You have a right as a patient to receive appropriate medical care and the right to have your voice heard.

Just like any relationship, if you do not feel comfortable or feel as though your voice is not being heard you have two choices, leave the relationship or work to change it. Have you had to have a conversation with your doctor about your relationship? What was that like for you? Do you have any advice for others?

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Hi! It’s nice to meet you. What do you do?

Such a direct question, right out of the gate! And it’s one we encounter often when meeting new people – report your name and occupation for informational purposes, please. Because of the nature of this interaction (which feels very unnatural at times), meeting new people can be intimidating. It can be an awkward situation with pressure to ask or answer certain questions that may be sensitive to you or the other person. It can also be stressful to open yourself up to new people because the outcomes can be uncertain. How will the other person interpret what you said? Will they be accepting of you? And the detailed request to explain what you do rather than who you are can feel uncomfortable too, especially for those who may not currently be in the workforce to identify themselves as their work first.

Ok, so new conversations don’t exactly occur like this: “Hi, I’m John. I like traveling, going to the opera, and fishing.” But they don’t necessarily have to evolve into interactions that make you feel like you’re filling out paperwork at the DMV either. There can be a balance, where you can actually learn about the person’s character and their likes before judging them solely by what they do or don’t do for a living. It may not feel like it, but perhaps those who are no longer working are at an advantage at times in this new meeting scenario. This leaves the discussion open to actually discussing matters that are not just work related!

Other topics of conversation can be brought into the encounter and people can learn who the other person is and not just what they do. Maybe this conversation flow can include “tell me something about yourself,” thus creating a whole new direction of discussion between new people.

Even though meeting people can be scary sometimes, it can also open up so many exciting doors for increased interactions and forming relationships with others, which can be of great value!

How do you meet new people?

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