Women and MS – Ask the Expert

Did you know that on average, women are three times more likely than men to develop relapsing forms of MS? While we don’t yet know the cause of MS, many researchers and physicians are working to clarify aspects of the disease and provide more information to women who may be affected by the condition.

In an excerpt from the cover story of our Fall 2008 edition of The Motivator, Connie Easterling, a nurse practitioner who serves as clinical coordinator of the MS Care Center, Neurological Services of Orlando, explains how Continue reading

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Most Influential Who?

By Lauren Kovacs

I have been fortunate to have several influential people through my MS journey. I reflect on them based on the struggle of the moment. Every moment with MS changes. Thus, influence changes.

I look to my mom who was a military wife for years. She carted four small kids all over to globe to meet my dad at his new duty station. I reflect on her when I combat new MS monsters. Fear of the unknown is not going to get me.

I look to a gymnastics coach I once Continue reading

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It’s OK to Be a Little “Selfish”

By Lisa Scroggins

People who have MS are like snowflakes: they have the same diagnosis, but each one will have a unique portfolio of signs and symptoms. It’s really a bizarre feature of MS, that despite similarities, the way symptoms appear can be drastically different. Many of the symptoms are invisible to others, yet have a profound effect on the person. Even so, most folks with MS understand pretty well the weird sensations and feelings of discomfiture that each one of us experiences.

Family members operate in a similar way, in that they all have their own relationship with each of the others. Some are closer than others, and some have little to talk about. While as a person with MS, you don’t get to choose your symptoms, you can choose the people with whom you surround yourself. Most of us know that drama and conflict are burdens on our nervous systems which we can ill afford. As demyelination strips us of some important “insulation,” we have to compensate for the less-than-ideal environment that we are left with. Emotions as well as signs and symptoms all emanate from our brains, and as MS uses a lot of our reserve, we have to rethink the best use of what we’ve got. This means that on a difficult day, when symptoms are aggravating, it’s not the ideal time to drag up an old argument.

Many of us cling to notions of what the “perfect” family looks like and even subconsciously try to recreate that at special times. It’s prudent to bear in mind that emotions are likely to be running high, just because of the sentimental character of beloved holidays. Combining that with any worsening of old symptoms or the entry of new ones has explosive potential. It’s very important to protect yourself from stormy interactions if at all possible!

What I’m really trying to say, is that if you have MS, you really must be selfish at times (like the holidays) of high stress. I use the word “selfish,” but truthfully, your selfishness will pay off for the people who are closest to you. If you’re able to refuse to engage in ancient dramas, to get upset about inane things like “who should do X,” and “why don’t you do Y?”, you will have gone a long way toward preserving the quality of this time for you, and for those closest to you. I wish you all a serene, sometimes exciting, and happy time, whichever holiday you are celebrating.

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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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Embracing New Traditions When You Have MS

By: Matt Cavallo 

Some of my favorite childhood memories stem from the holidays. On Christmas Eve,  my Grandmother prepared a wonderful homemade Italian feast followed by a bonfire in the front yard where the whole neighborhood would gather to sing Christmas carols. Although the weather was never above freezing, we were warmed with a sense of unity in song accompanied by the melodic sound of my cousin’s saxophone.

When my wife and I decided that we were going to move away from my hometown in Massachusetts for a new life in Arizona, I knew that I was leaving behind those traditions that I cherished. I also knew that my boys wouldn’t have the same experience that I did growing up. I was worried that I would be depriving my children of those memories that I held so dear.

I had  more pertinent factors to consider in my decision, however. My MS was progressing and I no longer wanted to fight the elements that go hand in hand with living in the Northeast. I love the colors of fall, but I no longer wanted to rake the leaves. There is something so peaceful about looking out the window and seeing the first snow falling, however, the strain of shoveling the driveway and front steps after the snowfall was no longer worth the pain. Life seemed to be becoming too physically draining to really enjoy it.  I knew I was ready for a change but wasn’t sure how to start over. Would a change mean robbing my kids of childhood memories? Was I being selfish by putting my health before my family?

The first winter in Arizona was sunny, warm and free of snow.  Despite the health improvements and ease of my new lifestyle, I was still missing the Christmas ritual and traditions that I grew up with. I decided that I had two choices: revel in the sadness of what I was “missing” or create new traditions to enjoy. I chose the latter.

Maybe this isn’t the case for you. Maybe you have lived in the same place your entire life, but are experiencing limitations due to your disability. Although you didn’t move, you may no longer feel that you can participate in the holiday season the way you used to.  Don’t let these limitations take the joy out of the season you once loved. If this rings true for you, here are some steps to help you embrace new traditions:

  1. Set new expectations – If your disability is affecting your ability to participate in events, try not to relive how you used to participate.  Instead, create new expectations for how to enjoy the same events. For example, if you used to stand up and lead the band, pass the baton. You can still enjoy the music if you sit and listen.
  2. Focus on the positive – It is easy to get down on yourself during this time of year remembering days before your disability. There is an old saying that I love, “Whether you think you can or you can’t, you are right!” Be positive, believe in yourself, and you will enjoy the holidays even if it is different than it used to be.
  3. Take advantage of new technology – If you can’t be there in person, take advantage of new technology to bring you as close as possible to friends and loved ones. Skype or Google+ Hangouts are a great way to participate in an event without physically being there.
  4. Keep your memories alive but update the tradition to fit into your current life – There are certain foods that take me right back to those old days at my Grandma’s house. Learning those recipes and recreating those dinners have been a way for me to remember the past while living in the present.
  5. Tell your story – People around you view you as a fighter for battling your illness. Use this time of togetherness as a way to share your story, allowing the people you are closest to a better understanding of who you are today.

Four years later, our new family traditions are every bit as meaningful as my childhood memories. We have made great friends in Arizona, and we get together to form our own lasting memories for our children. Whether it is taking the kids up to Santa’s Village in Flagstaff or watching a parade of boats decorated in Christmas lights at the lake, these new traditions are every bit as meaningful as singing in my Grandma’s front yard, minus the frostbite.

In many ways, these new traditions make the holidays more meaningful to me. I have experienced a lot of loss with my MS. With that loss, I realize how precious each moment in life can be and have begun to live in the moment and enjoy it. Embracing these new traditions has taught me that this season is still the most wonderful time of the year despite having MS.

Happy Holidays everyone!

Please note, MSAA offices will be closed December 25th through December 30th.  We apologize for any inconvenience this may cause, and will respond to all comments and inquiries upon our return.    

*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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