Greetings, I’m new here!

Hello MSAA friends! My name is Selena Fisher, and I just joined the MSAA team as a super excited Client Services Specialist. I have a Bachelor’s in Psychology, and am currently working towards my Master’s of Clinical Mental Counseling through Liberty University. I am married to my college sweetheart, and together we have three beautiful and highly energetic children (ages 6, 4, and 2).

When you call MSAA to speak with a specialist we get to learn a little bit about you. I would love to give you Continue reading

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Reminiscing of Summers Past

As a kid summer always seemed like such a charmed time. Mostly because school ended and we were ‘free.’ For some the season brought trips, vacations and activities that weren’t done during the school year. For others just having time off and spending days with family and friends was treasured. Reminiscing of summers from my childhood has now become a favorite pastime of mine.

Growing up we weren’t fortunate to have lots of family vacations or trips. But we did our best to keep ourselves occupied in our day to day. We did have certain things to look forward to Continue reading

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A Grandmother’s Love

When my sister and I were little we used to wish for a different grandmother. I know that sounds terrible! But we were young, we didn’t know any better, and we thought our grandmother was the meanest woman alive at times! LOL.

Looking back at that now I can laugh because that was ridiculous. Yes, my grandmother was tough and strict sometimes, but whose isn’t? She really did mean well and just wanted us to be safe and well taken care of. Being a kid if you heard “no” then that adult was just plain mean, and your opinion gets tainted. But as we grew older Continue reading

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MS and the RSVP

Do you go with the last minute RSVP? Or end up canceling plans?

Most invitations sound great when they come, but for many with MS, it’s simply impossible to predict the way one might feel the day of the event. Symptoms can change, flare-ups can occur, and/or exhausting fatigue might set in. The desire to go may still strongly be there, but the physical strength and wellbeing are not. A response of “maybe I’ll be there” is often necessary for those living with MS, and sometimes, it’s the Continue reading

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I’ll Be There for You…

Relationships are pretty often thought of strictly in the context of romantic attachments. Especially this time of year as we emphasize love and romance, couples, and all that comes along with it. But there are other relationships we sometimes forget to emphasize. Friends, family, co-workers, support group members, or neighbors. All of these, too, are relationships. It’s difficult in a world where things move a mile a minute and there is so much vying for our attention to remember to think of these other relationships and place some emphasis on them as well. Not just when the stores turn to red and pink and the costs of flowers rise to somewhat ridiculous levels.

While romantic relationships are important and make up a good portion of our understanding of relationships, support and encouragement for many often comes from those they are not romantically linked to. Friends who are there for us when we need a shoulder to cry on or a hand up when we are weak. Support group members who share their own story and listen to ours as we all try to live our lives as best we can and make the most out of all we have. Neighbors or co-workers who help us pass the time during work or who we bond with over community concerns and celebrations. These relationships, just as important as romantic ones, help shape both who we are as well as those around us and are strong bonds during trying and uncertain times. This month in addition to celebrating and relishing any romantic relationship we may be in and acknowledging the importance of this in our lives, let us take some time to also thank and celebrate the other relationships in our lives with people we love… just not in that way. Remind your friends and family what they mean to you or show appreciation and gratitude to your co-workers or support group members. It may not be the stuff of Hallmark movies but I’m sure they’ll really appreciate it that you took the time.

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There’s No Place Like Home…?

So the holiday season is here and for some of us that means a lot of extra time spent with family. Now for many people this is a welcome and joyous gathering; spending time with loved ones and those you may not see all year round is longed for and appreciated. For others, being with family may be a bit more stressful, so one’s strength and will can find that it’s tested more so this time of year. Now don’t get me wrong, I’m not saying that all family occasions and activities are taxing, they can be very pleasant at times, but there are those moments where we find ourselves maybe wishing we were at Ebenezer Scrooge’s house for Christmas dinner (the Ebbie we see before his change of heart, lol).

I think most of us can relate to those relatives who can bring out the worry, stress and anxiety in us—and for whom we do our best to place a smile on our face and grin and bear their remarks and actions because they come from a place of concern. I know some say that family only wants the best for us, but do they have to work so HARD at it? Tough questions, unrealistic expectations and lingering comments can be very trying to endure, especially for those coping with their own changes or challenges and expectations. No one’s arguing the fact that we do ultimately want to treasure and appreciate the moments we have with family, because we all know that special moments can be fleeting and life can be very unpredictable when it wants to be. But why do some of these moments have to be so hard sometimes? Why can’t we get through a meal or activity without that moment of discomfort because someone asks an unwelcome personal question or comments on something they don’t know anything about?

Again, I’m not saying that all family get-togethers and events bring about these types of feelings; I’m merely trying to validate that these moments do occur for some and they are not without frustration or stress. The question is; how do you approach these more interesting of family encounters, especially around the holidays? What would Ebenezer do? (The changed Ebbie at the end of the tale, that is).

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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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Love Conquers All… (Including MS!)

By: Meagan Freeman

Valentine’s Day brings to mind images of unconditional love, commitment, and romance. We see the theme as we stroll through any store during the month of February, the candy hearts, the red roses, and the chocolate. Sometimes, we forget what this concept truly means, and get caught up in the “commercial” aspects of the holiday, instead. If anyone is looking for a true story of love, hope, inspiration, and unending devotion, I have one for you.

My grandparents met on a Southern California Beach in 1944. My grandmother wore a bright yellow bathing suit, as she sat in the sand under an umbrella. My grandfather always described her as “the most beautiful girl I have ever seen.” Both of my grandparents served in the military during World War II, and both were stationed in Santa Monica, CA. It was love at first sight, according to both of them. This bond grew in the following year, and they were married in a beautiful ceremony in 1945. This strong bond they had formed would be tested in the coming decades, and it would carry them through the most difficult times.

In the following decade or so, my grandparents had seven children, three girls and four boys. My mother was the oldest child. Sadly, my grandmother began to develop neurological symptoms such as weakness and emotional instability. Eventually, she experienced seizures on a regular basis. This led to a fairly rapid decline, leaving her wheelchair bound by age 40, and bedridden by age 45. Eventually, she was diagnosed with a rapidly progressive form of multiple sclerosis. The advice regarding MS in the 1950s-1960s was generally to “get in bed and stay there,” and “do not ever exercise.” As we know, this is some of the worst advice for MS patients.

When my grandfather was faced with the decision whether to move his beautiful wife to a nursing home or keep her in the family home, he insisted she remain with him. He lovingly cared for her for over a decade in the home, all while raising the seven children and working to support the family. He helped her to dress in her best clothes during family gatherings, brushed her hair, and made sure she was a part of the family in every way. My grandfather was a photographer, and he took hundreds of incredible family photos, always including my grandmother.

Eventually, my grandmother lost her battle with MS. My grandfather carried on for many more years, visiting the grandchildren (myself included,) gardening, attending church, and waiting for the day he would see his wife again. His faith was strong that he would see her again someday, and he spoke of her often. He passed away in 1994, and on their grave is the quote that sums up the undying dedication they showed for one another through the most difficult times life could throw at them: “Suffering disappears, love remains.”
Love is indeed forever.

meagan feb blogMy grandparents on their wedding day, 1945

 *Meagan Freeman was diagnosed with RRMS in 2009, at the age of 34, in the midst of her graduate education. She is a Family Nurse Practitioner in Northern California, and is raising her 6 children (ranging from 6–17 years of age) with her husband, Wayne. She has been involved in healthcare since the age of 19, working as an Emergency Medical Technician, an Emergency Room RN, and now a Nurse Practitioner. Writing has always been her passion, and she is now able to spend more time blogging and raising MS awareness. She guest blogs for Race to Erase MS, Modern Day MS, and now MSAA. Please visit her at: http://www.motherhoodandmultiplesclerosis.com.

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Hard Family Conversations and MS

By: Matt Cavallo

During my initial hospital stay and subsequent diagnosis of MS, one of the biggest challenges that I faced was talking to my family. We had a history of multiple sclerosis in my family. My dad’s sister, Loretta, was diagnosed with MS in the 70’s and she passed away in 1981 due to complications of the disease. During that time, there was little in the way of treatment available to help her. Not only that, but the disease progressed very quickly. She passed when I was only four, but I still can remember her. She was in a wheelchair and she couldn’t talk, she could only mumble and moan.

While I was laying in my hospital bed contemplating my diagnosis, I was thinking that I shared the same fate as my Aunt Loretta. The whispers around my bed from my family members supported my fears. As a result of these fears, the conversations changed. Family members started treating me differently. They were walking on eggshells around me, careful not to divulge any of their true fears of my future. Even with treatment, as my functionality returned, everyone held their breath for MS to strike again.

Six months later I had another drastic exacerbation. Then, twelve months after that another one. It seemed like I was following Aunt Loretta down a perilous track. And my family treated me that way. It was to the point where I didn’t want to have conversations with them because I wanted them to remember the person I was and not the person I had become with MS.

However, there were a couple of things I had going for me that my aunt didn’t have. One was timing. In 2005 there was a lot more knowledge about the disease and many more treatment options available than when she had it in the 70s. The second thing was history. I knew my Aunt Loretta’s story and I didn’t want mine to end the same way. Family members told me that she didn’t like the advice she received from a doctor, so she never went back to that doctor. I used that information to motivate myself to learn as much as I could no matter if the news was good or bad, scary or hopeful. I just wanted to get the most objective, up-to-date information available to fight. Lastly, I had hope. In the seventies there was little known about the disease. Today, there is research and scientific breakthroughs, social support networks, and hope.

If I could go back in time with all I know today about living with multiple sclerosis, the fear and egg-shell conversations with my family would be dramatically different. I would use the resources around me, like My MS Journey, to educate myself and ease my family’s fears instead of staying silent.

Today my family conversations are no longer about the horrors of MS. My family and I now talk about my future and my kids and all of the awesome stuff that normal people talk to their family about. Today we are a normal family and I just happen to carry the torch of multiple sclerosis. I have had it for approaching ten years now and I am still working, playing, being a dad and living the life I always wanted to live. That makes me proud to talk about my MS journey and how I have lived a great life despite my diagnosis.

Resource:
https://mymsaa.org/journey/

*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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Family Ties

The relationships that we hold with family members are some of the most significant and influential ties that we will carry throughout our lifetime. These bonds, whether good or a little rocky at times, help to build the foundation of our relations with other people. Because these relationships hold so much meaning and importance, individuals put forth much effort into maintaining them to ensure they remain intact. What helps to make this possible?

A key element in all types of relationships is communication. Being able to disclose feelings, concerns, and needs to others is important and can build strong ties in the connections. Reading other people’s minds can be a challenge, so talking openly about things is a good step to knowing what the other person is feeling. This isn’t easy for everyone; it can be difficult to bring matters to other people’s attention and talk about different issues, especially if they are personal or sensitive in nature. Because of this it’s important to think about whom you feel comfortable disclosing things to if challenges arise.

Having that go-to person/support in place is essential to communicating effectively and being able to share your personal experiences. Sometimes you may seek this type of support outside of your family structure which may inadvertently upset family members. So then with family, you may need to have a discussion about communications barriers or discomforts to be able to disclose why communication is difficult. This can help to reduce confusion and misconceptions in these relationships, and still leave the communication lines open. As family remains one of the strongest ties in connecting to others, communication will remain an integral part of this system.

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