A Little Bit of Light

It was only a sunny smile,

and little it cost in the giving,

But like morning light it scattered,

the night and made the day worth living.

F. Scott Fitzgerald

Fitzgerald is the author of my all-time favorite book and this poem that, though short, reminds me the important role that light can play. Light is not only the opposite of darkness and necessary for many of the things we routinely do, but it’s also a great symbol. This time of year we routinely hear words such as peace, joy, good will (yes I know that’s two words) and my favorite of all – Hope. Light reminds me of the hope that we can have and sometimes have to fight for. It’s not easy at times with all that the world throws at us to hold onto hope and it can be difficult to get back when it seems it’s gone. But it’s also one of the things at this time of year we think on as one year prepares to give way to another. When we start to wonder what might be.

There is this amazing festival in Thailand (northern Thailand to be more exact), called Yi Peng, where people set afloat thousands of paper sky lanterns or Khom loi and fill the night air. This festival has been adopted and is celebrated around the world including here in the US. Cities and communities around the country hold lantern festivals during the year, giving participants opportunities to not only come together to partake in and watch something breathtakingly spectacular, but also to reflect. Many people assign to their lantern some significance or importance. Maybe your lantern could symbolize turning over a new leaf or good wishes for starting down a new path. It could also stand for letting go of something you’d been holding on to, making peace with something or someone you’ve had a hard time with. Or it could symbolize your hope for yourself and those around you. Light, as Fitzgerald puts it, has the power to scatter the night and while he is specifically talking about the light a smile can bring, I’d add in that hope in it’s many forms brings forth a powerful light as well. This December, as 2016 begins to wind down, take some time to yourself to find where you can relight your hope and scatter the darkness. Maybe make today a little brighter.

eventi

If you are interested in seeing first hand one of the incredible lantern festivals and, like myself, cannot go to Thailand check out The Lantern Fest.

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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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December 2016 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

MSAA is very proud to present our 2016-17 Art Showcase – celebrating the work of artists affected by multiple sclerosis (MS).

We have received many wonderful submissions from across the country and are delighted to share their work and their stories with you. Please visit our online gallery to view all of the new submissions.

Paula Breiner – Tamaqua, PA
Snowy
Snowy - Paula Breiner

About the Artist:
“I started painting last August to help strengthen my hand, to better my thinking and concentration. I haven’t drawn or painted since high school back in the 80’s. I find painting to be very relaxing and stress free, which is what an MS’er needs in their life.

I was diagnosed in 2006. My husband is my rock, I don’t know where I’d be without him. I belong to an amazing support group and we have all become family, I love and cherish each of them. We have 2 beautiful daughters and 4 amazing grandkids. I do lots of crafts with my grandkids and we all reap the rewards. I have MS, it doesn’t have me. One day at a time.”
Read more

Send an eCard

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What YOU Wish People Knew About MS-Fatigue

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MS-related fatigue is not “regular” fatigue, but it’s hard to help people who don’t have MS understand what this type of fatigue is really like. We recently shared an article by one of our community experts outlining some things others may not know about having MS-related fatigue.  So many of our community members shared their feelings with us, so we wanted to capture some of their thoughts on what they wish others understood. Here’s what they had to say.

Wishing Others Would Simply Understand

“I know I work, and by the time I get off, my body doesn’t want to move, much less think. I can be somewhere and be just as lost because of the fatigue. I feel your pain that if you don’t have MS you don’t understand”

“Thank you so many times over. I started crying reading this. I have tried so many times to explain the difference between being tired and fatigue, I feel to no avail. My fiancé tries to understand but gets so frustrated with me when all I want to do is sleep”

“I have had this issue since my diagnosis, and like you said, when I say I am tired, people tend to go straight to their own tiredness and talk straight over me if I want to explain”

Cognitive Fog Troubles

“I am one of those who still work, but the stress of the job causes brain fog and cognitive issues and mental exhaustion. It’s not that I can’t do my job, it just takes me longer”

“More and more it’s not just physical fatigue, but a mental fatigue as well. My once very capable brain slows down to a point that the simplest math task or organization plan has to be figured over and over again until I’m annoyed and frustrated with myself”

“Spot on! I often find my brain sending me messages to give up. I can compare it to the feeling of sprinting until you can’t sprint any longer. Your brain tells you to stop, give up. The same is true for me with MS. My brain is telling me to give up”

Frustrations, Life Changes, and Never Giving Up Hope

“I always get the, ‘you’re just getting older.’ Hello!! I’m 34, how’s that old? Isn’t that like the prime of your life? People run marathons well into their 50’s!”

“On day after working, my then 10-year old son asked me to play a board game, I replied, ‘I’m too tired.’ He shot back, ‘mom you’re always too tired.’ That broke my heart”

“I can feel great, go out to dinner, order my food, and by the time it gets served, I’m so fatigued I don’t feel like picking up my fork to eat”

“You have the fatigue, but you still try to do things. It takes twice as long, since you drop things or are off balance. This leads to frustration, then anxiety, and full-blown stress. And your mind keeps playing the tune, ‘I wish I could feel good for just one single day.’ And to top it all off, it’s a beautiful day and you just want to enjoy it. The day in the life of a person living with MS”

“Remember that MS is not what defines us. We can still have a good life if we remain positive and keep trying. We CAN NOT let it get us down. We are all better than that. And for me, I try to remember that I am not in this alone, and sometimes that helps me get through the day… In between naps!”

Thanks to our community for your awesome responses. Keep sharing with us, and with each other, how you handle MS-related fatigue, and what you wish others knew about your struggles!

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No more stress? Is that even possible?

stress-and-post-its-penelope-cBy Penelope Conway

Stress is not a good combination with Multiple Sclerosis. I hear all the time how stress needs to be limited to keep from triggering an exacerbation, but how do you do that in a world full of “I want it now” people and “it can’t wait” situations?

There are hundreds of lists on the internet explaining what you can do to avoid stress, but listing things out and doing them are two different things. Then if you add MS into the mix of things, it seems an impossibility.

Maybe your day starts something like this…

You wake up in the morning to a busy day planned. You didn’t hear the alarm clock earlier so you are already being rushed to get your day started. It’s early, you’re exhausted and your body isn’t cooperating. You take a shower, and even though you did every cool down technique you know, your body is simply too weak to keep going at the fast pace you have set for yourself.

You take a moment to rest then push on to get dressed so you can get out the door to make up for missed time. All the while, playing through your head is a rundown of everything you must do today. You have lists created, app alarms set on your phone to remind you of your time constraints and post-it notes scattered everywhere.

You do your best to hold back your frustrations but before you have even left the house to begin the day, you are feeling overwhelmed and defeated.  Somehow MS just doesn’t fit into a busy day and somehow you always seem to forget that tiny little fact.

The unexpected happens much more often now that MS is a part of your world. You get tired faster, weak muscles limit your functionality, your vision messes with your ability to complete even the simplest of tasks, dizziness and vertigo trip you up, and your thinking gets all muddled in the process. It’s hard planning for the MS unexpected. I always say a life with multiple sclerosis is like a box of chocolates…you never know what you’re gonna get. (Thanks Forest Gump for the inspiration.)

I have discovered that stress makes you extremely tired and can cause MS to worsen, but it’s stressful to avoid stress so you end up stressed out anyway. It’s really not easy trying to avoid stress. Ugh…just thinking about it is stressing me out.

So how do you fit a life with MS into a stress free list found on the internet? Well, for me that’s an impossibility. It seems MS doesn’t like lists or plans. It kind of has a mind of its own and doesn’t seem to want me to know ahead of time what it has in store for me throughout the day.

When life become overwhelming, and many times even before it gets to that point, I find that I need to take a moment to step back from all my commitments, work, and obligations. I need to take a moment to pause and re-examine everything. Literally.

Is there anything I could change or remove from my day that would help ease the load? Do I really need to vacuum the house today, tomorrow or even next week? If I wait and take a shower before I go to bed rather than when I get up in the morning, will it help? Can I recruit someone to pick up a few things from the store for me so I don’t have to go? Will the world fall apart if the laundry isn’t finished?

You are more important than the chaos that surrounds you and way more important than the stress that it can cause. Work on changing your workload bit by bit, little by little, moment by moment. You won’t be able to quit everything (which I happen to think would be nice to do at times) and you won’t be able to stop the world from spinning out of control, but you can make a positive change in your own life.

Take time to slowly work your way out of those over-commitments by finding others willing to step in and help. You may need to juggle schedules around and say no to people you normally wouldn’t say no to, but in order to simplify your life and relieve the pressures weighting you down, you have to do it. It’s not an option.

Do what you can today and leave the rest for another day. Take one step closer to living stress free, and before you know it you will be enjoying your life….even with Multiple Sclerosis.

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (http://positivelivingwithms.com/) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.

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Happy Thanksgiving from MSAA

thanksgiving-ecard-cWishing you and your family a Happy Thanksgiving from all of us here at MSAA!

To send a Thanksgiving eCard to your friends and family, go to support.mymsaa.org/holidayecards.

Please note: MSAA will be closed on Thursday, November 24th and Friday, November 25th.  We will be back in the office on Monday, November 28th.

Happy Thanksgiving!

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Working Together with the Spasticity Alliance

By Kyle Pinion, MSAA’s Director of Advocacy and Public Policy and Southeast Regional Director

Have you ever woken up one day and found that your legs have painfully, and involuntarily, tightened? Or perhaps you were sitting in your favorite chair one afternoon while watching the football game and in the middle of a great play realized that your arm muscles clenched in a way that was incredibly uncomfortable. Those who are living with the progressive forms of multiple sclerosis are likely to understand this symptom all too well: spasticity is a tightness of the muscles, typically occurring in the legs, groin, and buttocks, though not exclusive to just these regions. While treatable in ways that can potentially reduce its effects, this symptom of the disease can be very debilitating and contribute to disability.

What you may not be aware of is that those living with MS are not alone in experiencing this troubling manifestation of their disease state. Many other condition-based populations see the effects of spasticity first-hand, such as those who have suffered a stroke, people living with cerebral palsy, and even those who have dealt with traumatic brain or spinal cord injuries. As such, advocacy organizations that represent each of these conditions recognize that greater amounts of information and resources are needed to help people living with spasticity grasp a better understanding of its effects and how to best seek treatment. To that end, the Multiple Sclerosis Association of America, United Spinal Association, United Cerebral Palsy, National Stroke Association, and the Brain Injury Association came together in June and initiated the planning process for what would turn into the Spasticity Alliance.

SpasticityAs MSAA’s representative for our regular Alliance meetings, it’s been fascinating to learn about the larger scope of spasticity’s effect on other disease states beyond our own organization’s purview. I’m so thankful to be able to share not only resources that have proven to be mutually beneficial, but also stories of people who experience this troubling symptom on a day-to-day basis.

When the Spasticity Alliance website launched in July, the outpouring of support from both the patient and professional communities was utterly overwhelming, as many deeply appreciated this pooling of efforts by advocacy organizations to provide resources and educational material for those living with this challenging and painful manifestation of these individual conditions – a manifestation that is all too little discussed. As we close out 2016, we’re looking forward to the further growth of the Alliance website, with very exciting plans on the horizon to make it an even more engaging and informative experience for our clients when they visit.

In the meantime, if you or someone you know has experienced spasticity, please visit the Alliance’s site at spasticityalliance.org. If you have any further questions regarding issues related to this symptom, please feel free to reach out to our Client Services department at (800) 532-7667, ext. 154 or via email at MSquestions@mymsaa.org.

Additionally, if anyone living with MS, or their family members or friends, would like to share their story for the Alliance’s site, please do not hesitate to reach out to MSAA and we’d be happy to discuss this with you further. Your stories really can make a difference through encouragement, fellowship, and education.

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New Recipe of the Month – Gram West’s Pumpkin Pie

MS Conversations Recipe of the MonthToday’s recipe is from our dear friend, Lynn, in South Jersey…Lynn writes:

At Thanksgiving, more than any other time of year, I’m reminded of my Grandmother (“Gram”) who passed away from a neurological condition in 2010. Growing up in South Jersey, I only got to see Gram twice a year: once when she and my grandfather came to visit us in NJ, and then again when we visited them for Thanksgiving. I always remember spending time with just her in the kitchen, making pumpkin pies to enjoy after our Thanksgiving meal. It was “our thing,” and we always loved watching our family fight over who got the biggest slice of pie. This time spent with my Gram is something that I will always treasure, and to this day, I honor this memory by making pumpkin pies for any winter family holiday, using the following recipe which she handed down to me.

– Lynn, in South Jersey

Gram West’s Pumpkin Pie
(Makes 2 pies.10 minutes to prepare, 70 minutes to cook.)

Ingredients:

  • 2 unbaked pie crusts (I use Pillsbury Pie Crusts)
  • 4 eggs, beaten
  • 1 can (29oz) pumpkin OR 3 3/4 cup freshly cooked and mashed pumpkin
  • 2 cups firmly packed light brown sugar
  • 2 tablespoons flour
  • 1 teaspoon salt
  • 1 tablespoon pumpkin pie spice
  • 1 heaping teaspoon cinnamon
  • 1/2 teaspoon ground nutmeg
  • 1/2 teaspoon ground ginger
  • 1/2 teaspoon ground cloves
  • 12oz can evaporated milk
  • 12oz regular milk

Directions:

  1. Preheat oven to 425 degrees.
  2. Lay pie crusts in pie plates, and flute the edges if desired. Put each pie plate onto a small cookie sheet (this makes for easier insertion and retrieval from the oven when you bake them). Cover the edges of the crust with a pie crust shield. If you don’t have one, you can use aluminum foil. This will help keep the crust edges from burning.
  3. In a large bowl, combine the eggs and pumpkin.
  4. Blend in the brown sugar, flour, salt, and all of the spices. Mix well.
  5. Add the evaporated milk, then fill the can with regular milk and add that. Mix well (be careful, it splatters easily).
  6. Pour the pumpkin mixture into the pie crusts.
  7. Bake at 425 for 25 minutes.
  8. Reduce heat to 350 degrees and continue baking for 40-45 minutes, until a knife inserted near the center comes clean. (Depending on your oven, you may need to bake longer.)
  9. Cool the pies. Once cool, store in refrigerator.

*We hope you enjoy our Recipe of the Month selections on MS Conversations. Just remember: these entries may not necessarily be a part of an MS-specific diet; these are simply recipes compiled from MSAA staff and friends either from their own family recipe collection or based on recipes we think you might enjoy. As always, make sure to consult your doctor about any food or nutrition questions as they relate to your MS.

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Last Chance for Thanksgiving eCard Vote

2016-thanksgiving-ecardsHave you voted yet for your favorite MSAA Thanksgiving eCard?

There’s still time to cast your vote for your favorite holiday greeting! Voting closes on Friday, November 18th at 3:00 pm (Eastern) so make sure you get your vote in at support.mymsaa.org/voteforcard!

Didn’t get a chance to vote?  No problem!  We’ll be announcing the winner the week of Thanksgiving on Facebook and via email.

Be the first to know which Thanksgiving eCard was triumphant by following us on Facebook or signing up for email.

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Stress Management Tips

The holiday season is fast approaching.  This time of year brings lots of great things like family traditions, fun activities, and opportunities to celebrate with friends.  Unfortunately, holidays can also be stressful and unpredictable. Dealing with fatigue and managing your MS symptoms can add to your stress if you aren’t careful.

So, here are four tips to help you manage the stresses of the season so you can have happy holidays!

Plan ahead

Planning your holiday schedule of activities in advance can help to reduce anxiety and limit fatigue.  Planning ahead will also help you identify the things you really want or need to do and weed out anything unnecessary or unpleasant.

Relax

It is important during the holidays to take time for YOU.  Even just a few minutes to relax and recharge can reduce stress levels and help you cope with all of the chaos.

Eat healthy

We all know that holidays bring sweet and savory treats, late nights and unusual schedules.  Be sure to stick to a healthy eating plan and reward yourself by having a  few treats during the holidays.

Support

If you are feeling lonely or stressed, make sure you have a close friend, family member or someone you trust that you can call on.  Maybe attend a local support group or call the MS Friends helpline to talk about how you are feeling.  Multiple Sclerosis Friends: 1-866-673-7436

The holidays don’t have to be stressful.  Take a step back and organize your schedule for the holidays, and make sure to take time for yourself.  By doing so, you can enjoy time with family and friends.

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