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:
http://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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Creating New Memories this Holiday Season

“What if Christmas, doesn’t come from a store. What if Christmas…perhaps…means a little bit more!”
― Dr. Seuss, How the Grinch Stole Christmas

Growing up, one of my favorite activities in school was around learning and exploring new cultures and how they celebrate holidays. Being so young and not yet having a chance to explore the world around me, I found it fascinating that people were different from what I assumed was the norm.

For example, in Germany, December 6th is St. Nicholas’ Day and “der Nikolaus” comes to the home of small children and brings gifts, such as sweets and chocolate, and puts them into the shoes of the children, who place them by their doors the night before. Then on the night of December 24th, Father Christmas brings presents to the children.

In Argentina, families celebrate starting Christmas Eve with a large family meal following with a fireworks display at midnight, toasting to Christmas. Many families stay up late into the night meeting with friends and family, then they will sleep all of Christmas Day.

To celebrate the New Year, people in Greece hang an onion on their door to symbolize rebirth and in the Philippines, women wear polka dot dresses and men carry coins in their pockets to symbolize prosperity and happiness for the new year.

The purpose of sharing these variations of holiday celebrations is to show that no matter how you choose to celebrate a holiday this year whether it is Christmas, Hanukkah, Kwanza, remember that it is OK to be different. Value time spent with family, not the gifts that are given, or the decorations that are hung. Create new memories this season and don’t be afraid to veer from the holiday norm. As the Dr. Seuss quote illustrates, the holiday spirit cannot be bought from a store, the holiday is what you make of it.

If you are looking for some inspiration from other countries on how to add some new culture to your holiday, check out the Why Christmas webpage to learn more about Christmas Around the World or 123 New Year to learn about New Year’s Traditions and Customs.

How do you plan to make new memories this holiday season?

References:
http://www.whychristmas.com/cultures/
http://www.123newyear.com/newyear-traditions/philippines.html
http://www.businessinsider.com/new-years-rituals-around-the-world-2013-12#in-greece-people-hang-an-onion-on-their-doors-3

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Holidays Past

The holidays are a time where people come together to celebrate the joy of the season, to honor past holiday traditions or to create new ones for generations to come. Holidays of the past can foster different types of memories – fond ones, funny ones, and those, “I still can’t believe that happened!” moments. For me, the holidays were always a hectic time, where you never quite knew what was going to happen. I do hold some fond moments about old traditions in our family, and though they may seem odd to others, every family is different and has their own ways of celebrating.

In my family, Christmas Eve was the night our extended family would get together to celebrate the holiday and exchange gifts through a Pollyanna. But the gift exchange and celebrating couldn’t happen until midnight, when it was really the start of Christmas day. As a child this was agony, as half of us would fall asleep before the countdown to midnight even began, and the rest of us were so tired that when it did come time to open presents and rejoice, we didn’t really appreciate the tradition at that late hour. However, this still remains a heartwarming memory for me, because for some reason or other throughout the years, this tradition is no longer. As more children were born into the family and members didn’t want to travel home so late, gifts are now exchanged at leisure, with no countdown or anticipation as years past. It’s still a nice tradition, but it’s different, and now we take time to reminisce about those past holiday memories and look back with joy.

Each holiday season brings varied traditions, moments, and feelings that are unique to each person and family celebrating the occasion. And even though things may change through the years, making holidays different from ones that came before, there are still memories to be made and joy to experience.

What are some of your holiday memories?

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Lasting Holiday Memories

Having just polished off the leftover bird from the table, cranberry sauce and stuffing galore, you may be experiencing a sigh of relief or even a moment of anticipation as further holiday and end-of-year festivities abound.

Whether you had a pleasant or taxing Thanksgiving, you probably are not thinking about what creates a lasting holiday memory, but inevitably as the season progresses you may just think back on past holiday seasons and some of the stand-out moments which are meaningful to you. Over time, sometimes even the mishaps and anxieties which were so troublesome to you at the time may even win out for most re-counted and favored memories.

For example, I’ll never forget the Thanksgiving my dog snatched a turkey leg right off my nephew’s plate (why he had a giant turkey leg, I have no idea). I chased the dog around the dining room and battled for it. When I finally broke his hold on the greasy turkey leg, riotous laughter erupted around the table.  At the moment he stole the food, my thought was, “Oh no, he ruined Thanksgiving,” but the reality was there was plenty of food to go around and everyone delighted in some comic relief. A few years later, and it has become a story we re-count when we talk about all being together and what we are thankful for (which does, in fact, include our dog).

Lasting Holiday Memories

So as the year winds down and you anticipate even more hoopla, remember that even the crazy, wild, and hectic moments can turn into those lasting, laughter-filled, or meaningful moments. Events may not turn out exactly as planned, but the love, support, and laughter of those that surround us and support us are what the holidays are all about.

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Happy Thanksgiving to the MS Community from MSAA!

The votes are in and we have a new MSAA Thanksgiving Card winner! The competition was a close one, but our big winner is…

Happy Thanksgiving

Pumpkin Floral Arrangement!

Coming in a close second place were cards showing a puppy and a kitten, a candle centerpiece, and a festive candy turkey with two small pumpkins. Sadly, our determined and colorful turkey was also defeated, but we’re sure he at least ruffled a few feathers in the process!

We would like to thank the more than 1,200 people who took part in this year’s fun election to select MSAA’s official Thanksgiving Card for 2014! MSAA’s winning online card “Pumpkin Floral Arrangement” is now available for you to select and send electronically to everyone you know. And since the other candidates received many votes as well, MSAA is offering all six cards for you to send!

Send a Thanksgiving eCard

This is a great way to send Thanksgiving greetings, while showing your support of MSAA, a leading resource for the entire MS community, improving lives today through vital services and support. At this time of giving thanks, we also want to express our sincere gratitude to the many individuals who have so generously contributed to support our vital mission.

Please note that MSAA’s offices are closed for the Thanksgiving holiday on Thursday, November 27th and Friday, November 28th. 

From all of us here at MSAA, please enjoy a safe and happy Thanksgiving!

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MS Clusters – How many of your friends and/or family also have MS?

There has been a great deal of research examining the role of genetics in the development of multiple sclerosis over the years. The current understanding is that MS is not directly inherited, however, genetics appear to play a role in increasing a person’s risk for developing MS.1 Experts currently believe that those who develop MS have inherited something in their immune system that makes them more reactive to whatever is causing the immune system to attack myelin. It is possible that something in our environment, potentially viral or bacterial, triggers the autoimmune response that leads to MS in a person who has an inherited susceptibility in their immune system. Because so many questions remain, we decided to ask our Facebook community if they are a part of an MS “cluster,” where multiple friends and/or family members have MS. Over 170 people responded, and here’s what many of them had to say!

Several people in my family have MS

  • My sister had MS. I have it now. She had PPMS and I have PPMS. There were 7 MS cases within 2 blocks of where I grew up. I have heard that genetics loads the gun and the environment pulls the trigger.
  • My dad and his brother and sister all have MS; that’s 3 out of 5 siblings.
  • My sister and I were both diagnosed with MS this year, one month apart. Interestingly my sister is adopted, so we are not genetically related. We both want answers. It’s so tempting to blame something environmental. No one else in family has ever had it, and my twin brother is fine.
  • I have two kids and two cousins with MS!!
  • Two of my maternal grandmother’s cousins, my mother, her sister, my father and now myself. We all live in Victoria, Australia, which is quite cold and has higher rates of MS and Vitamin D deficiency than almost all the rest of the country. ‪None of the neurologists we see had ever come across such a “cluster” before
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  • ‪I’m the 6th cousin on my father’s side of the family to be diagnosed with MS.
  • My dad, his sister, my sister, my half sister and I all have MS. That’s 3 of 5 kids (2 boys, 3 girls) with the same father that have MS.
  • My aunt has it and my great grandmother died from it. I believe my lifestyle in my 20’s was the ultimate trigger. But eating a mostly vegetarian diet and drinking tons of green tea has helped me in more ways than I could have hoped for.
  • I’m the third generation in my family to have MS.
  • I have MS, was diagnosed in ’87, but in retrospect I’m pretty sure I’ve had it since my early 20’s. In 2005 my daughter was diagnosed at 25. My family was puzzled that it isn’t supposed to be hereditary! Then in 2007 my husband and her father were diagnosed. He and I both grew up in the same town; maybe its genetic and maybe environmental?
  • I have 2 cousins on my mom’s side that also have MS. I’m the 3rd to be diagnosed.
  • I am the 4th in 3 generations that we know of.
  • I’m 55 and I’ve had it since age 30. We think my grandmother on my dad’s side had it, but she passed away in 1983. Now one of my daughters has it and one of my nieces has it; that’s it for now.
  • My daughter was diagnosed at age 16 years old, and 5 years later I was diagnosed as well.
  • My mother’s cousin, first born, had it. Her brother’s first born had it, and I, her first born have it; my brother’s first born has it. All were/are males except for me. Is there a first-born child link?
  • My sister and I both have MS, and we are the third generation to have this in our family.
  • My friend has 69 first cousins, and 19 of them have MS.
  • I have MS, my mother has MS, and her mother had MS and died from complications when she was 46 years old.

There are a lot of people who live near me who have MS

    • There isn’t a “cluster” in my family, but there is in my neighborhood. The house on left, house on right, house across street, and me – each has someone with MS. That is my whole block.
    • My sister had MS, but no one else in the family going back 10 generations had it. HOWEVER, a woman on the next farm had MS and now a young woman on the closest farm to ours has been diagnosed with MS; that’s in a community of 40 people.
    • I’m the only one in my family. Three of us from a very small country town who went through primary school together have it.
    • My co-worker had MS, then I had it, then another co-worker got diagnosed…all while active duty Air Force serving in same building. It’s a very interesting connection.
    • There’s a cluster here in northern California.
    • I grew up in the town of Tonawanda in Western NY. It’s located in between Buffalo and Niagara Falls. Many people I went to school with have MS.
    • I don’t have a family cluster, but 3 of us, all female, same age, lived on same block within 4 houses of each other, have MS. There could be more that we just were not in touch with after moving away. We were all diagnosed in 2005.

I’m the only one in my family who has MS

      • No one in my family on either side has MS.
      • I have it, but I’m the only one in my family. I was told that MS wasn’t hereditary.
      • I am the only one with MS. Diagnosed at 33 and I am 40 now. Praying no one else in my family ends up with it.
      • I am the first in my family. We went way back and couldn’t find anyone.
      • My dad was the first and only in our entire family.
      • I am the only one in our huge family.
      • I was told that MS is not hereditary?
      • I was told that MS runs in the family, but usually skips a generation; I am the first on both side of the family to ever be diagnosed with MS. I was diagnosed in 2007 when I lived in CO – which has the most people to be diagnosed with MS.

There are multiple autoimmune or neurologic diseases in my family

    • My mother has Crohn’s Disease. My youngest son has Type 1 Diabetes, my eldest has allergies, and I have MS.
    • I’m the only one with MS, but I also have neurofibromatosis (NF). I have over a dozen family members with some type of neurological problem. I have a nephew who has NF and Parkinson’s, and several family members who have epilepsy. I am 58 and was diagnosed with MS about 14 years ago. I’ve had NF all my life. I passed it on to my son and daughter.
    • I am the only one in my family to have MS, but my sister has Lupus.
    • My father’s three cousins (MS), his sister (ALS), he (peripheral neuropathy), my husband (MS), our daughter (MS – diagnosed at 10!)!!
    • As far as we know, my middle child, my daughter, is the only one to have it. My mother’s family all came from Sweden, which is a hotbed for MS. I don’t fully understand a lack of Vitamin D being a factor. We live in PA where we do get a lot of sunshine.
    • Four out of 6 of my siblings have MS, and my mother died from ALS.
    • My grandma had MS, my aunt has Lupus, and I have Neuromyelitis Optica.
    • I was diagnosed a year after a maternal cousin was diagnosed with MS. My cousin’s mom had severe RA, and my mom’s fraternal twin has Lupus.

Reference:

1. Aronson KJ. The epidemiology of multiple sclerosis–who gets MS and why? In: Kalb R, ed. Multiple Sclerosis: The Questions You Have – The Answers You Need. 5th ed. New York, NY: Demos Health; 2012:21-27.

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Adjusting to Change

rsz_older_caucasion_woman

Change is something that continually occurs throughout life for all people and to different degrees. Change may have very mild, subtle effects, or very significant effects depending on what’s being altered. Sometimes change can be a good thing, and sometimes not. One of the most difficult concepts to accept about change is that at times you have no control over it. In our individualized society we try to live by the mantra that we control our lives and what happens to us day-by-day, but this is not always the case. Sometimes the unexpected arises and we play no part in its occurrence. An unexpected illness, a loss, or other unforeseen situations are some of the incidences that can transpire due to no control of our own. When the unexpected occurs, what can you do to help adjust and cope with this new-found circumstance, that wasn’t necessarily welcome or planned for?

  • Talk to others about the changes that have occurred. Communicating to trusted loved ones, friends or your healthcare team can help you explore ways to adjust by receiving outside perspectives.
  • Reflect on what the change has affected. By recognizing what’s different you can make your own adjustments that will work for you in your day to day.
  • Explore your support resources. If change has had emotional, physical, or social impacts for you, it’s important to know who you can reach out to for help.
  • Bring focus to things that you enjoy and that you can control in your day-to-day. Make decisions that help to ensure that changes are modified to fit your needs.

Change can take some getting used to, especially if it’s something unpredictable. Though some things are uncontrollable and unforeseen at times, individuals do hold influence over the way they can approach change and react to it. It’s how you make the change work for you that’s significant.

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