Ahhh Spring…

162309-It-s-SpringThe birds, the flowers, the sun and the showers! This season is a rejuvenating time where we can cast off the dusty winter and break out the cool breezes of spring. Over the winter all of our favorite outdoor activities close down in anticipation of cold weather (how rude). Park gates shut earlier, boardwalks are silent and activities in general slow to a standstill. Things take a break for winter and sleep waiting for this time of year to come back round again. Now that spring has started to reappear across the country, it’s a great time to get back out to some of your favorite spots. There are festivals and farmers markets. Concerts and exhibits. Parks reopen and stay open longer as the sunshine stretches well past 5 PM allowing you to explore your city or county well into the evening.

There are events both small and large to be attended and taking a look at your state, county or city website can give you an idea of what activities or happenings are going on in your neck of the woods. You may find a new concert series you didn’t know was happening, an art or food festival near by or something new your town is trying out for the first time. Here in Philadelphia we are gearing up to host our first ever Chinese Lantern Festival at the end of the month. In DC the cherry blossoms are all the rage while in Texas the rodeo is kicking up. Seattle is getting expressive with their art festivals and the Wisconsin Film Festival starts at the end of the week.

This spring make yourself a promise to get out and explore one new activity your area offers, you may be surprised by what you find!

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This is Spring? (When expectations don’t quite match realities)

So the spring equinox supposedly arrived for us living in the northern hemisphere on March 20th this year, marking it as the first official day of ‘spring.’ However, for those of us living on the east coast, it hasn’t quite felt like spring this past week. When it comes to weather changes we can usually deal with the clichéd ‘April showers bring May flowers’ notions, and even March’s infamous reputation that it ‘comes in like a lion and out like a lamb,’ because we’re hopeful that the next beloved season is right around the corner.  But with temperatures in the 40’s and flurries impeding on morning commutes this past week, it appears that spring has decided to abdicate its duties (at least for the time being). Not quite what we expected so far, right?

Ok, now the weather has been increasingly unpredictable over the years due to a number of factors and elements so it’s not a total surprise that our desired seasons don’t occur quite how we hope. But it further highlights this notion that sometimes what we expect to happen doesn’t quite match reality; and this becomes the continued barrier we encounter and struggle with through all phases of life. We know that life itself and the day to day can be very erratic—with varying degrees of triumphs or defeats, but when additional factors are added to the mix it can be even more challenging to match expectations to reality. No one holds the expectation that they will become ill or be diagnosed with a chronic illness, so again reality doesn’t match up at times.

When expectations aren’t met and life continues to generate its own agenda-not taking into account how you feel about it, this can be extremely frustrating and overwhelming. So when this happens, what can you do? How can adjustments be made or things tweaked so you’re not getting constantly knocked down or totally thrown off course when life throws a wrench in your plan? You can PUSH BACK. Now this can be very much easier said than done sometimes, but how else can you let life know that you’re still very much a part of it even though it may not be what you expected? And this doesn’t have to look a certain way. Each person has their own unique personality and attitudes and the ability to use and embellish character strengths to the exponential degree. You demonstrate resilience and take control over how you react to changes you encounter. You work on showing life how its changes will work around you and your needs, not the other way around.

Again, this is not an easy thing to do. It can be devastating when life doesn’t work out the way we hoped and expected it to. But this is where there can be strength in numbers-where people can reach out to others for support and find hope. Learning what others have done to overcome a situation, where they’ve found their strengths and how they’ve pushed forward can be incredible assets to embrace. Everyone has experienced moments where reality doesn’t happen like we expected, but we find ourselves together in that, and once again surrounded by potential hope.

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2016 Improving Lives Benefit Recap

On March 30th, we held our third annual Improving Lives Benefit in Philadelphia, PA. The proceeds of this event benefit the multiple sclerosis community through the programs and services we provide.

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(Pictured above from left: MSAA Board Chair James Anderson, Honoree Susan Russo, Honoree Douglas Franklin, and MSAA President & CEO Gina Murdoch)

We want to truly thank you for your contribution this year – your support and generosity are crucial to our mission of Improving Lives Today. With the help of supporters like you, MSAA was able to raise more than $130,000 – which will make a tremendous difference in the lives of numerous individuals and families with MS.

Please visit our online ad journal for a list of supporters and event sponsors at support.mymsaa.org/adjournal.

Donations for this event are still welcome. You can donate by clicking the button below.

give now

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Spring Resiliency Reminders for MS

If you live along the east coast, like most of us do here at MSAA, signs of spring are showing. We have battled another harsh New England winter and are looking forward to the first signs of spring. Spring has always been my favorite time of year; to me spring flowers represent resiliency. The tiny buds fought the tough winter to show their beauty to the world once again.

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“Resilience is very different than being numb. Resilience means you experience, you feel, you fail, you hurt. You fall. But, you keep going”. — Yasmin Mogahed

Having a diagnosis such as MS can inspire and drive an individual to find the resiliency that is buried within. For those with Relapsing Remitting MS, the ebb and flow of life between relapses is proof of the resiliency that exists. For those with more progressive forms of MS such as Secondary Progressive MS or Primary Progressive MS, the daily adaptation and adjustment to a new lifestyle is also proof that resiliency exists. Recognizing and acknowledging that change isn’t always a bad thing and learning to be OK with the new normal is also proof that resiliency exists in MS.

Share the ways you have remained resilient with MS in the comments below.

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April 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 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.

April Artist of the Month:
Debra Robert – Lake Worth, FL
Constellation des Colores
Debra Robert - Constellation des Colores

About the Artist:
“I have been painting for over 25 years. I have a BA in theatre arts and an MFA in film producing. My career has taken me around the world, working in live events/concerts/conferences for over 20 years.

Now diagnosed with Multiple Sclerosis (MS), I had to retire from my exciting, vibrant career. I am determined to put my energy into art full-time, surrounding myself in a world of color and light. I pull my inspiration from years of the lighting design, sounds and imaginative shapes from live performance production.”
Read more

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March is almost over…But before we go

This month we’ve been highlighting MS Awareness as we present different topics important to and associated with MS as well as ways in which we can educate ourselves and those around us. In addition to MS Awareness, March is also Social Work Month. Social workers play a vital role in overall health and wellness, mental health, as well as in areas far outside of the health sciences.

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Social workers have been around since before the 1800’s working diligently on issues of injustice, inequality and to help empower individuals and communities to use their collective strength to make a difference. Some of our most noted alums here in the United States started institutions such as the Hull House in Chicago in 1889, which was established to help the surrounding low-income neighborhoods have access to education programs, health care services and recreational opportunities. In addition to reaching out to low-income communities, social workers throughout history have partnered with the Red Cross to treat soldiers returning from war, been civil rights activists, served on presidential cabinets and worked in legislative arenas as catalysts for change. Social workers are often thought of as the caseworkers in hospitals or with children and family services. While those are two of the important roles that social workers take on, social workers also work with the military or international businesses as well as be political campaign workers, community organizers, run nonprofit organizations and are behavior and mental health professionals. Our first lady Michelle Obama has an MSW (Master of Social Work) on her team to initiate new programs and services across the country.

Social work as a profession has evolved from those early years but some things still remain. The individuals who enter into social work are dedicated, compassionate, innovative, inclusive and hard working professionals who cover a bevy of occupations and can be found in almost every avenue. We meet people on some of their worst days and walk with them through circumstances and over obstacles while assisting them to build on their own strengths to come out the other side better equipped to tackle some of life’s uncertainty. It takes a special person to be a social worker and partner with others to be the difference someone may need.

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Thank any social workers you know for all their hard work not just in the month of March but whenever you get the chance.

 

 

 

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MSAA and MultipleSclerosis.net Partner for a Live AMA

MSAA recently partnered with MultipleSclerosis.net to co-host a live Facebook “Ask Me Anything”. For one fast-paced hour on March 22nd, everyone from the multiple sclerosis community was invited to ask questions about living with MS and have their questions answered by MSAA Client Services Specialists and MultipleSclerosis.net staff and patient advocates.

Read more about this AMA and find out what topics were discussed at MultipleSclerosis.net.

AMA March 22 2016

A special thanks to our friends at MultipleSclerosis.net for allowing MSAA to be a part of this special MS Awareness Month event and for helping improve lives today for the entire MS community!

 

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MS and Making Plans: Community Thoughts

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There is a lot about MS that is difficult for “healthy” people to understand, and one of the most frustrating things is that it can be really difficult to make plans in advance. You just never know how you are going to feel the following day, or even the following hour. One of the amazing contributors at MultipleSclerosis.net, Matt Allen G, wrote a wonderful article about his frustrations with being unable to make plans with friends in advance, and then some people not understanding why those plans may have to change at the last minute. Matt’s words really resonated with our community, and so many other people shared their thoughts and experiences with us. Here’s what our community had to say:

It’s emotionally draining

  • My head tells me I can do it but my body won’t let me. For me this is the worst. I look around during my house and there is such that needs done but I just can’t. Depressing.
  • I get so sad and discouraged when I see people posting pictures of everywhere they go and the fun they have…and I do well to get to the store once in a while.
  • This is one of the hardest parts of staying in the family dynamic.

MS Doesn’t Care

  • MS doesn’t care if your children need you to drive them here, there, and everywhere. MS doesn’t care if you got all dressed up and now you need a nap. I have gotten all dressed for church and then as my husband is backing up the van I ask him to stop as I need to go back in the house. Then I take a nap, fully dressed, too tired to undress.
  • I have an international trip coming up, and the anxiety alone is killing me, but I figure you only live once. If I let this disease deter me from making plans and living my life as best I can while I still can I’ll always regret it. Tomorrow is not promised to anyone. You never know when there’ll be a “next time”.
  • I never know when I am going to feel better; 10 minutes good, then it’s downhill.

Tips

  • I always get trip insurance and have used it. It takes the pressure off. Make sure it covers pre- existing conditions as most don’t. I think it is Travel Guard. You have to purchase it within 2 weeks of booking a flight or trip. Really truly despise this part of living with the monster.
  • My experience has been to make plans with the people who understand that I will do what I can. I go, do what I can and find happiness that I did what I could and had an experience that I will remember.
  • I stopped making plans because I never know how I’ll feel. One day at a time.
  • Fatigue and meltdowns make it so difficult to do things around the house. I’ve learned to do things as I can because pushing to finish anything isn’t possible for me.

No one understands

  • This sums up my life perfectly. I HATE the unpredictability of this disease. Especially when “I look so good!” but my body’s numb. Or I can’t lift my leg. People just don’t understand what its like. No matter how much they try to empathize they’ll NEVER understand it. Like the phrase goes, “no one Gets MS Until they GET it”.
  • This is something I wish all my family and friends understood.
  • No one understands what MS is doing to you… You have to listen to your body. You will lose people because they just don’t understand… Keep positive and Never ever give up!!
  • I wish my grown children would understand this.

I won’t let MS run my life

  • It never stops me. I’m going to Thailand, jumped out of a plane, to work I drive a modified car, and I play wheelchair basketball for my local team.
  • One day at a time is all you can do.
  • It’s not about having a good day. It’s about having a good minute!

What about you? Do you struggle with planning? Do you find that friends and family don’t understand?

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Relapses: Not Always Easy to Define or Diagnose

With a majority of MS patients diagnosed with relapsing-remitting MS, the idea of defining and recognizing the signs of relapse becomes very important. This topic can cause both MS patients and neurologists to debate the issue, and some of the lines can be blurry, to say the least. The official definition of a relapse is as follows:

“During a relapse, inflammation is occurring along the nerves and the myelin, causing patients to have a temporary worsening or recurrence of existing symptoms and/or the appearance of new symptoms. This can range from a few days in duration to a few months, followed by a complete or partial recovery (remission). Acute physical symptoms and neurological signs must be present for at least 24 to 48 hours, without any signs of infection or fever, before the treating physician may consider this type of flare-up to be a true relapse.” (MSAA, 2016.)

The new physical signs and symptoms must be separated from a previous relapse by at least one month. As you can see, this definition leaves a great deal of room for interpretation, and every neurologist responds to relapses in very different ways.

Some neurologists treat each relapse with steroids, and do not perform MRIs each time. Steroids are anti-inflammatory medications, almost like “Mega Ibuprofen.” Steroids are very effective at calming the inflammation that causes MS symptoms, but they come with a load of side effects that always need to be considered and weighed. Treatment can be done with IV steroids (Solu-Medrol,) or with oral steroids such as Prednisone. Other neurologists insist on performing MRIs before ordering steroids. Some neurologists prefer to save steroids for only the most severe relapses such as weakness and vision loss, and do not use them for sensory symptoms such as numbness and tingling. It is very much a matter of opinion, and there truly is no “right or wrong” answer in this area.

My own neurologist does not perform MRIs for my relapses, because he does not believe that there is a clinical correlation between the MRI and clinical symptoms. A clean MRI does not necessarily indicate that we are not experiencing relapse, and vice versa. It is also possible that we may be experiencing a pseudoexacerbation. Pseudoexacerbations are temporary increases in symptoms caused by external factors such as heat, which go away after a short period of cooling off. These can also be the result of infections and fever.

I have had RRMS for almost 7 years, and in that time I have experienced very active disease. On a daily basis, I experience new and varying symptoms, ranging from buzzing/tingling/numbness, to burning/pain/spasm, to weakness/vision loss/bladder issues/cognitive issues. These symptoms come and go very unpredictably, and it is truly maddening. The one thing I have learned is that I can’t allow myself to panic if I experience something new, because most often these symptoms with leave as quickly as they appear, within a few hours. However, if they do persist beyond 24-48 hours, make sure you contact your neurologist and get advice, because if there is something you can do, you should! I am always grateful to get my neurologist’s advice in these situations, because it can be very difficult to assess our own symptoms in an unbiased way. Don’t ever hesitate to ask for advice in this area, because it can be very confusing for even the most experienced MS patient!

*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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MS Relapse and Symptom Management Resources

During this final week of MS Awareness Month, MSAA has been focusing on the often overlooked issue of relapse management. MS relapses (or exacerbations) are initially experienced by most people diagnosed with multiple sclerosis. During a relapse, individuals have a temporary worsening or recurrence of existing symptoms or the appearance of new symptoms ranging from a few days in duration to a few months

MSAA’s MS Relapse Resource Center was developed to help you learn, engage, and gain a better understanding of MS relapses. Visit the MS Relapse Resource Center to learn more about relapses, watch a video or webinar, download our relapse brochure, and browse all of the tools available on this comprehensive section of our website. You can also take the new MS Relapse Awareness quiz to test your knowledge!

And if you’re looking for more tools to help better manage your MS and symptoms, check out the features of the My MS Manager app in the video below. To learn more about the app and to download it for free to your mobile phone or tablet, visit mymsaa.org/mobile.

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