Have a Safe and Happy New Year

Happy New Year 2016 (2)

From everyone here at MSAA Headquarters, we wish you a safe and Happy New Year. While we reflect back on 2015 a quote comes to mind:

“Year’s end is neither an end nor a beginning but a going on, with all the wisdom that experience can instill in us.”

-Hal Borland

As we move into the new year, use the challenges of the past as propellers for wisdom and guidance in 2016; with every challenge a new opportunity is born.

PLEASE NOTE:  MSAA’s offices will be closed Thursday, December 31st, through Sunday, January 3rd. 

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Making and Preserving Memories

By: Stacie Prada

As we embark on a new year, I think about the highlights of the past year. What makes me grin, what am I proud of accomplishing, and what was meaningful to me? How can I memorialize these things so that I can enjoy them in the future? I think it’s important to mark the passage of time, celebrate our successes, and keep our years from merging into each other without distinction.

When asked what one thing people would save in case of fire, they often say their photographs. I think this is telling for how important memories are to us, and I think this is helpful information for us to proactively add joy and meaning to our lives.

If we lose our photos, we will hopefully still have our memories. But what if we lose them with MS disease progression or aging? I may never reach a point in my life where I experience the extent of memory loss that people with Alzheimer’s and dementia experience. Still I think it’s helpful to look at the extreme cases and learn from them. People with dementia are sometimes able to recoup some memories through music, stories, and photographs, and this can improve their quality of life.

Creating Memory Triggers: We can work to improve our memory, but I also think it serves us well to create memory triggers that help us retrieve memories. I like to preserve memories physically through photographs and mentally through tying them to other things like music, people, food, and aromas. I try to enjoy the moment, feel it, and store it away in the subconscious. These are some ways I enhance my experiences and create memory cues:

• Take photographs. I love my camera and tripod attachment that will allow me to take a time delay photograph of everyone in the room – no need to have one person take the photograph and be left out of the photo. Have someone take action shots of you doing things you love. These will help you remember how you felt while doing them.

• Put photos in an album either in hard copy or digital format. Just make sure they’re accessible to look at. If you can add notes about the photo, all the better.

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• Pay attention to music. Buy the soundtrack to a movie you enjoyed. Make a playlist of the songs you heard for the first time this year or are meaningful to you at this time in your life.

• Journal about things you care about. This is a terrific way to remember your thoughts and how you felt at a specific time in your life.

• Relish the taste of foods you love. Tell people in your life your favorite foods. It’s pretty incredible how people tend to remember other people’s favorite foods.

• Take time to smell things and register them. Think about how a baby smells fresh from a bath, how a forest smells after a rain, or how baked goods smell fresh from the oven. Take a big whiff if you like something, and pause to appreciate it.

Preserving my memories is not a solely selfish endeavor. My memories involve my friends and family, and compiling them is a gift for them to share with or without me. My mother kept a scrapbook for our family when I was young, and the stories she wrote to accompany photographs truly tell a lot more beyond the photographs. She’s been gone many years now, but seeing her thoughts preserved in her handwriting brings her back to us in a special way. My sisters and I treasure them, and things we may have known at one time but hadn’t remembered are available to us now.

With MS, other neurological diseases, and just aging in general, cognition and memory can be something that declines. The idea of losing my memory is scary, but it’s less so when I can actively do things that may improve my life now and for years to come.

Resources:
• Music & memory is an organization that provides iPods with personalized playlists to people with Alzheimer’s and dementia that improves those people’s quality of life. https://musicandmemory.org

StoryCorps’ mission is to provide people of all backgrounds and beliefs with the opportunity to record, share and preserve the stories of our lives. They have an app that allows anyone to record their stories. https://storycorps.org/

*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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Wishing You a Safe and Joyous Holiday Season

Happy Holidays 2015

There is still time to share holiday greetings and raise awareness about MSAA! This season, our festive cards include artwork by artists living with multiple sclerosis. Please visit support.mymsaa.org/holidaycards to send a holiday eCard to everyone on your list!

PLEASE NOTE:  MSAA’s offices will be closed Thursday, December 24th, through Sunday, December 27th. 

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What Webster Doesn’t Tell You About MS

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Webster’s Dictionary defines MS as: a disease of the nervous system that causes the gradual loss of muscle control. But for anyone experiencing multiple sclerosis on a daily basis, you know that’s only half the story. Our fantastic contributor, Stephanie, wrote an article about the “Lesser Known MS Evils” and the community loved it.

Here are some of the odd, unexpected symptoms our MS community experiences:

“It itches, it burns, it’s even numb!”

  • Itching
    • The itching has been the most annoying for me. It always happens in one part of my back, and doesn’t stop with scratching
    • My hands itch all the time. I always thought I just had dry skin!
    • I get itchy skin all over my face and even my eye lids!
  • Burning
    • My tongue has felt burnt since I was diagnosed a little over 2 years ago. 
    • The burning has been so bad
    • It literally feels like I’m burning. I get so hot and sweat just pours off me!
  • Numbness
    • I can never tell if I’m cold or hot!
    • Sometimes the left side of my face just decides to go numb.
    • I get so much numbness. You would think if it’s numb, it wouldn’t be able to hurt. But nope. I get both 

“It’s like my body forgets how to…”

  • Swallow…
    • Nothing like having to explain that my body “forgot” how to swallow
    • I had trouble swallowing when I first was diagnosed. Took me hours to finish dinner!
    • I regularly choke on my own spit.
    • Mine mainly happens with drinks, especially warm ones, and every so often I “choke” for no reason. It can be especially embarrassing at work
  • Talk…
    • Finally some validation for being a “Low Talker!” Now, when my husband says, “Why are you screaming at me?” I can justify it!
    • The cadence of my speech has definitely altered over the last 2 years.
    • My voice has been shot for years and I can’t seem to pronounce basic words anymore
  • Breathe…
    • Sometimes my body forgets if it was breathing in or out…not a good feeling, especially when I’m alone.
    • I definitely experience the breathing and swallowing issue, that is so painful and scary
  • Write…
    • Itching is one of my worst also my handwriting has gotten so bad.
    • Oh the handwriting. On bad days, my penmanship looks like a 5 year old attempting to write with their non-dominant hand.
  • Think…
  • The only way I can describe it is like a short-circuit feeling in your head.
  • My family has been the saying that I’m losing it. YES! That’s exactly how I feel!
  • It’s like pregnancy brain…but ALL THE TIME

How about you? Any strange symptoms you’ve experienced from your MS? Maybe ones you didn’t even know could be due to your MS? Share with us in the comments!

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At This Time of Year

By: Bob Rapp

I am a partner to a person living with MS. My wife has been living with the disease for over 20 years and has done remarkably well. She has always been meticulous about her health. She eats well (except for the candy), exercises almost daily and is adherent to her medications. Things are not perfect but she has, and continues, to lead her life. She’s pretty tough and resilient.

A few months ago as some of her symptoms seemingly began to worsen, she had an MRI and the scan showed some new lesions. In consultation with her neurologist they decided it was time to change her DMT from the one that has been so effective for all of those years to a new medication that would hopefully better manage her disease. As people who have gone through this transition know, that is not as simple as it sounds. In some ways it is like losing a trusted friend, one that has been by your side for decades. You worry about the new medications effectiveness, you may experience side effects that you thought you left behind so many years ago and you worry about the future.

It is another of those unpredictable consequences of having MS. Another aspect that has to be managed. Another hurdle to be overcome. Another issue where the support of others is so important.

So what is my purpose in sharing this personal story during this holiday season? It is a simple one. To encourage everyone to enjoy these special days, celebrate what we have and the goodness in life. Laugh a lot and keep your friends, family and loved ones close. MS and the challenges it brings will be around but it need not consume our lives. Keep on living. Happy holidays!

*Bob Rapp is the Chief Operating Officer of MSAA. He has been a care partner to a person living with MS for more than a decade.

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Finding the Strength to Fight MS for the Holidays

By: Matt Cavallo

In September of 2010, I was faced with a devastating decision. I was experiencing severe spinal stenosis and a fractured C6 vertebra, which my doctors believed was a result of complications due to my initial onset of transverse myelitis five years earlier. My decision was to have an emergency cervical fusion to address the problem before it became more complicated. At the time, my kids were only three and one years old and I was worried that if I didn’t have the surgery I wouldn’t be able to participate in their lives the way that I wanted too.

Fast forward to December of 2010, I was out of the neck brace and going through physical therapy. I was weak, tired and had lost a lot of weight. The surgery was another in a long string of MS events that rendered me in a depressed state. I didn’t want to see friends or family and had become a shell of my former self at the house. The blinking of Christmas lights and singing of carolers was not enough to get me in the Christmas spirit.

I was working at the hospital at the time and my practice manager was throwing a holiday party. She insisted that I be there. I was feeling like Ebenezer Scrooge and issued a, “Bah Humbug” at the thought of kibitzing with my coworkers (even though they were doctors, nurses and therapists). My wife convinced me to go to the holiday party and I parked myself in a chair by the fire pit in the back yard for a couple of hours. My coworkers brought me food, drink and merriment, but I still could not find the spirit.

Was this going to be the year I gave up on Christmas? Was this the year that MS had finally won the battle?

My parents flew into town just before Christmas. My dad is a great Italian chef and the familiar aromas of my grandmother’s recipes were not enough to snap me out of my funk. His food smelled and tasted like memories of Christmas past. Now, here I am, Tiny Tim wondering how long I could feign a smile despite the depression and ill feelings MS had saddled me with this holiday season. I went to bed believing that maybe I did deserve a lump of coal in my stocking.

Then it happened.

Christmas morning 2010, two wild-eyed and blonde-haired boys rounded the steps to see the gifts that Santa had left for them. Their spirit and enthusiasm sparked a flame inside me. I knew that no matter how bad I was feeling or wanting to give up that these two boys needed me to be there in the moment with them. So I donned my Santa hat and let them sit on my lap on the floor as they ripped open the wrapped Christmas presents with delight. It was then that I realized the true meaning of Christmas was to find joy and be thankful for my many blessings despite difficult times. Regardless of what holiday you celebrate, I hope your season is filled with hope, joy and love.

Happy holidays everyone and a happy New Year, from my family to yours!
matt

Figure 1: Matt and Colby putting together a Christmas toy 2010

*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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5 Unique Ways To Support the Multiple Sclerosis Community

‘Tis the giving season. But it’s also a time for giving back. There are a number of ways you can show your support for MSAA and give back to the MS community just by doing some things that you’re probably already doing. Below are 5 ways you can make a difference this holiday season and throughout the year.

1.  Many of us shop online this time of year to check off items from our holiday shopping lists. Use Amazon Smile and a percentage of eligible purchases will be donated to MSAA. Just go to smile.amazon.com, sign in and select the Multiple Sclerosis Association of America (MSAA) as your charity, shop as usual and Amazon will donate directly to MSAA.

2.  If you buy or sell items on eBay, register with eBay for Charity and a portion of your eBay sales and purchases will be donated to help MSAA improve lives today! 

3.   Do you have an unused vehicle that you’d like to donate? Donate a vehicle to MSAA before the end of the year! Your tax-deductible contribution will help provide much needed support for MSAA’s vital programs and services. Cars, motorcycles, boats, RVs, and many other types of vehicles are accepted. Call and schedule a pick-up and we’ll take care of the rest. Call 1-877-667-2227 or visit www.msassociation-cardonations.org for more information.

4.   You can also fundraise for MSAA and show support for the MS community by participating in the country’s most unique marathon – the Rock ‘n Roll Marathon series, taking place in cities all across the country. The Rock ‘n Roll Marathon series has partnered with Everyday Hero so now you can run ‘n raise for the MS community! Find out when a Rock ‘n Roll Marathon is coming to a city near you and register here.

5.  Spread holiday wishes to all of your family and friends as you raise awareness about MSAA through our selection of colorful eCards. This season, our festive eCards include artwork by artists living with multiple sclerosis as part of our Art Showcase. Click here to send an eCard to everyone on your list!

Holiday eCard Compilation - 2015

However you choose to give back this holiday season, MSAA would like to wish you and yours a safe and enjoyable holiday.

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Some invaluable lessons (from some unlikely sources)

It’s that time of year when the holidays are upon us in full force. With the celebrations of Hanukkah starting last week and the arrival of Christmas and Kwanzaa in a bit under two weeks, the season is in full swing. It’s during this time of the year when many people find themselves taking moments to reflect on the year and what they found important, meaningful, challenging or inspiring. Certain experiences, teachings and life lessons are frequently pondered during the holiday season as people recount what they’re grateful for, things they’d like to learn, and notions they are still trying to grapple with. It’s funny to admit but during this time of year especially there are some very invaluable lessons that can be considered and reflected upon from influences around us. Granted most of these influences may be in the form of animated figures and storytellers, but their lessons are still valid and appreciated as guideposts of direction and conscience.

Take for example the beloved, though mostly outcast, Charlie Brown Peanuts character. Even though his actions of choosing an at first glance unattractive looking Christmas tree to use as a prop for his friend’s Christmas play were ridiculed and contested, in the end it gave way to a most memorable and impactful speech explaining the true meaning of the holiday and what ‘Christmas is all about.’

Lesson: It’s the meaning of the season and why it’s celebrated that matters most, not material items or commercialism.

Another recognizable figure during this time is Dr. Seuss’ the Grinch character. Now he had the most learning to do of all – with his heart two sizes too small. Again he thought the season was just about material possessions and how much the Who’s had. It angered him to see how they reveled in the holiday celebration and thought that by taking away their belongings this would dampen their spirit. But the Who’s blatant joy and celebration despite their loss taught the Grinch more, of course, that ‘perhaps Christmas doesn’t come from a store.’

Lesson: The holidays are a time for appreciating who and what you have in your life that brings you happiness and realizing what you’re grateful for, and being together, even perhaps singing a little ‘Fahoo-dores.’  

And lastly, perhaps one of the most influential, historical characters during this time of year? Why yes, it’s Mr. Ebenezer Scrooge himself, the feisty curmudgeon who could really suck the spirit out of the holiday season – if you let him. Scrooge’s memorable and extraordinary tale of being visited by three spirits on Christmas Eve really captures multiple lessons of the season. By redeeming himself and changing his ways by the end of the tale, which we can only hope continued even after the story ended, he was able to ‘keep the spirit of Christmas close to his heart’ and celebrate all year through.

Lessons: Think and consider those who are less fortunate than you, and when able, spread prosperity (in any form) to others. Think about your actions – they can affect others too, not just yourself. Gratitude and appreciation can go a long way. Keep the meaning and spirit of the holidays close to you always.

Now not everyone may recognize or know these characters mentioned above, but the message remains the same. No matter what time of year, you deserve to think about what’s important to you, what you enjoy, and how these things influence your day to day. Values and lessons are important to consider—not only during the holiday season, but the whole year through.

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One of the best things you can do for yourself…is be quiet

We spend so much of our time doing this and running there with music and podcasts, directions and instructions, jingles and audiobooks, theme songs and storylines. Our world is pretty loud and I’m as guilty as the next person. I put in my ear buds as soon as I step outside the door. Turn on something when I come home and have a constant barrage of stuff running through my head. The holidays only make it that much more apparent. There’s socializing and classic tunes, conversations of what to get the kids, where to go for the best deals and whose home you’re having dinner. Commercials run back to back from everywhere asking you to buy this or try that.

We’re inundated with sound.But from time to time we just have to stop. Put down the phone, step away from the TV, and power down the laptop. Ask the family for a few minutes and turn it off. Taking some time for silence and sitting, walking or laying in quiet, and just “being” is one of the hardest things to do. Just think about when you try to go to bed, the entire day wants to run a recap in your head as you struggle to find some quiet corner in your sub-consciousness to conk out in. I know it can be hard, but it’s worth the effort.

Take some time to really quiet the world around you and just be. Now I’m not so naïve as to think that while you intend to sit in silence your brain won’t sneak in with the to-do list or the last song you heard on the radio won’t rear it’s head wanting to say Hi, introduce itself and ask you if enough time has passed for you two to meet up (yep, I heart Adele too). But make some time to take a deep breath and exhale the catchy lyrics and never ending schedule for even a few minutes.

Silence, I’ve found, can be scary, we’re so used to the clamor that we aren’t sure what will happen when it’s gone. What will happen you ask?? I can’t answer you for sure but what I can say is that when I have intentionally sought out some quiet I’m able to feel my heart beat, hear myself slow down my breathing, relax my muscles into the lack of filled-in sound, and center myself.keep-calm-this-is-a-quiet-zone-8

Grab a cup of coffee or tea and settle on your couch, sit in a chair, close your eyes and breathe. You can even head outside and just quiet your mind and get some fresh (albeit possibly cold) air. During this holiday season I encourage you to take some time, even if it’s just 5 minutes, and be quiet in the silence. You may find you’re better able to tackle the wall of stuff you have to get done with some help from that few minutes you spent just sitting on the back porch.

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Gifts From The Heart

My husband loves a good deal. Seriously, he hates paying more than he has to for anything and loves telling everyone how much he saves. He’s in his glory this time of year, scouring the newspaper and internet for low, low prices. On Thanksgiving Day, as I was agonizing (OK, maybe a bit of an exaggeration) over dinner, my husband was checking his e-mail inbox and came across the following.

Grey Friday

Yes, you read that correctly. Thanksgiving Day, a day to be grateful for all we have, is being swallowed up by the spending holiday of Black Friday. I even saw a few companies refer to the week as Black Friday Week! It’s crazy! The way we are going, in 20 or 30 years, we will have lost the original meaning of all of our holidays. All that will be left will be the sales and deals galore. Don’t laugh, it could happen!

With Christmas coming up, that got me thinking. Maybe we should embrace the saying that “It’s the thought that counts”; not the price tag. So, I’ve put together a list of gift ideas that show an added personal touch (and that don’t break the bank).

1. Bake cookies and send along the recipe for future use.
2. Make homemade holiday cards.
3. Give the gift of your time. For example, offer to babysit to give young parents a break.
4. Put together a book of “secret family recipes” and give it to all family members, young and old.
5. Use your talents (such as knitting) to create unique presents.
6. Craft gifts (like wreaths) out of recycled or repurposed materials.
7. Pass along a family heirloom to the next generation.
8. Regift; if you don’t think you’ll use something, give it to someone you know will.

Sometimes, the best gifts are the ones that come from the heart.

Wishing you a Happy and Healthy Holiday Season!!

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