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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MS Means Managing Your Energy

SherylBy: Sheryl Skutelsky

It’s Football Season! So, what does that have to do with MS? Well, in my case an unexpected wonderful opportunity to travel to meet my son to see my very first live NFL game. This opportunity truly once again brought to light the ways in which I have to live my life a bit differently from everyone else.

My dad wanted a boy, but instead he got me, an only child. So, I was placed in front of the television from as early as I can remember to watch the Jets play. I was taught every rule and regulation.

I’ve lived my entire life in New York, but for some reason my son had been a Packers fan from as early as I can remember. He dreamed of getting tickets to Lambeau Stadium for over 20 years. He finally had tickets for the Packer’s first home game against the Jets, but he broke up with the girl that was supposed to accompany him.

I get a call from my 31 year old son, now living in Houston, asking me if I would like to meet him in Green Bay for my birthday to finally get to see my Jets play live. Instantly I was ecstatic and panicked at the same time!

MS means managing your energy to avoid overwhelming fatigue. I didn’t have enough warning to rest all week for this trip. I also remember my son telling me that as a teenager he often felt that I wasn’t there for him; I was always too tired. I hadn’t been diagnosed yet, and my son rationally understands now why I was always tired, but I didn’t want to let him down this special weekend.

Well, the Packers beat the Jets, and I came home a Packers fan, but more importantly, my son and I had such a special weekend together. He had tattooed the MS logo on his ankle for me several years ago which meant a lot, but this weekend he also showed me that he truly understood how I had to live a little differently with MS.

My son did all the driving, took care of me, kept me out of the sun as much as possible, and made sure I got time to rest. We had such a great time together in Wisconsin, and my son told me how proud he is to tell people how his mom doesn’t let MS stop her from enjoying life. After all, what more can a mother ask for?

*Sheryl Skutelsky, diagnosed in 2001, has learned how to live positively with multiple sclerosis. Sheryl’s passion has always been graphic design. Her symptoms have become an inconvenience to her work, so she now uses her skills and creativity to reach out to others about MS. Sheryl is a patient advocate speaker for Biogen Idec. She also writes for Healthline.com, and she is an Internet radio host with her own show, Fix MS Now. Check out her Fix MS Now page on Facebook which has more than 10,000 followers. You can help raise MS awareness one “like” at a time by visiting: http://www.facebook.com/fixmsnow.

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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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Summer Reflection

By: Matt Cavallo

For me, having MS sometimblog pices means more sleep. This is especially the case for me with two young boys, who don’t tend to sleep in and have endless amounts of energy. I find that when the seasons turn to fall and the long sunny days turn to long dark nights, I find myself chronically tired and needing to hibernate. When I feel like I need more sleep, I draw on lessons learned from the summer.

This June, my wife and I decided to drive to take the kids to Legoland in San Diego. San Diego is about a five hour drive from my house, so we loaded up the minivan and hit the road for a three day vacation. Prior to that vacation, I put it in my mind that it was going to be hot and that I was going to be waiting in long lines for the rides, but that I needed to give my kids a vacation to remember.

The first day took a lot out of me. The drive was exhausting. Even though the kids behaved and there was only a little traffic, driving that long can be taxing. However, once we got to the hotel, the kids wanted to play. Even though I was exhausted, we met up with friends and went to the beach. I spent the entire time at the beach playing in the water with the kids. After about twelve hours of going non-stop, we went to the hotel and I crashed.

The next morning came too early, but the kids were up and ready to go. I felt like if I could just get a little more sleep, I would have energy for Lego Land. More sleep was not to be had but we spent an awesome twelve hours running around the amusement park, going on the rides and playing the games. The sun was brutal and beat me down as I waited for ride after ride. By the time we got to bed, I was so exhausted that I didn’t think I could possibly pull it together another day.

The next day came and I needed just a little more sleep, but that was not going to happen. It was day two at Lego Land and the kids were ready. It was a repeat of the first day and the kids were having the time of their lives. We spent another twelve hours roaming the park being roasted in the early summer sun. By the time we got back to the hotel, I thought I was going to pass out from exhaustion, but the kids wanted to swim at the pool. So even though I had expended all my energy at the park, I needed to dig down and find the inspiration for one more hour of activities.

While I was sitting at the pool watching the boys swim, I thought that this is what life was all about. It turned out that I didn’t need more sleep. Sure I was tired and the sun and MS fatigue were wearing on me, but I needed to be there. At this moment, having MS meant time with my sons. So many times, I had let my MS fatigue get the best of me, but I fought through it to create memories that will last a lifetime.

As I look forward to the fall season and the long nights, I think back to that summer vacation. I look back at how I was fatigued and didn’t think I would make it, but created precious memories. For me it is all about getting going, because for me getting started is the hardest part. This fall, I am not going to require more sleep. I am going to spend more time with my sons, because that is what motivates me to keep going. What lessons from summer are you going to use to keep going this fall?

*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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National Preparedness Month

September marks the observance of National Preparedness Month, a time when individuals are encouraged to make safety plans and preparations in case of emergencies, such as natural disasters, for the protection of themselves and family members.

Family standing outside house illustration

With the atypical weather conditions experienced throughout different parts of the country this year especially, like the harsh winter months and peculiar storms, it is important to have emergency plans in place to prepare for such conditions. Discussing strategies with your family members or neighbors can help to increase cohesiveness and coordination when planning for emergency situations. Individuals with disabilities should develop strategies that will accommodate personal needs in case of an emergency as well, including how to move within the household if the power were to go out and safe exit strategies if you need to evacuate the home.

Websites like the Centers for Disease Control and Prevention and ready.gov provide information and materials for individuals to make plans and build safety kits for emergency preparedness.  Here are some additional tips to consider when creating emergency plans:

  • Develop a plan that is accommodating for everyone’s needs in the household. If someone has a disability, try to consider and incorporate those needs into emergency plans and evacuation strategies.
  • Ensure all household members are aware of the plans and what their role is in implementing them.
  • Stay informed about emergency preparedness by checking media and news sources often.

Increasing awareness of how to protect yourself and the ones you care for in an emergency can aid in making thoughtful and careful decisions in unexpected situations. Take this time to learn more about National Preparedness Month and educate others as well!

 

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