Spreading Awareness: Advocating for Client Needs

This week, in honor of MS Awareness Month, I spoke with a group of nursing students at Rutgers University in New Jersey regarding chronic illness and the role nurses play in patient advocacy and referral. This event highlights the importance of spreading awareness and educating those working directly with individuals affected by this disease.

While explaining the various factors associated with MS, we explored a variety of resources available to individuals. Nurses have a unique and valuable role in the medical team – they are often the first person a client sees in a medical team giving them the opportunity to hear and learn the ins and outs of an individual’s life. With this knowledge, nurses have the opportunity to discuss options and make referrals for clients.

It is vital that nurses view themselves as patient advocates and make referrals or speak to the medical team regarding any concerns they may have for the clients care. Some conversations are difficult to have with physicians; clients feel pressure during the short visit and do not get a chance to discuss their concerns. Often times, working closely with a nurse for some of the non-physician or non-medical related concerns can be helpful.

Hopefully the conversation with the nursing students set them up to become better patient advocates in their future roles as nurses!

Have you worked with a nurse for assistance with referrals to organizations or assistance programs? How was that experience for you?

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March is MS Awareness Month

By: Ashley Ringstaff

I know there are a lot of questions many people with MS ask themselves… and some of those questions are based upon being involved in the MS Community. How can we get involved? How can we make a difference?

I thought I would try and share my thought on this subject, for the month of March, which is recognized by many as Multiple Sclerosis Awareness Month. There are a lot of events that you may see online, on social media, and many other places. But how can we get involved?

I do a lot of advocacy for multiple sclerosis all year round, and I don’t usually attend huge MS events in order to do so. I do small, but meaningful things to raise awareness about multiple sclerosis.

The obvious one, is that I blog… but before I even started writing; I became a volunteer with MSWorld.org where I am a part of an Online Support Group for MS Patients & their Caregivers.

However, I feel that advocating really needs to go BEYOND just the MS Community, and advocated to the general public. When I have been out in public, someone will ask me what MS stands for, because I was wearing an MS t-shirt. So I explained to them what it was. Just passing along information to a few people can spread the word. Once you have given the person information, they will probably relay it to someone else they know.

I use my social media outlets to raise awareness about multiple sclerosis. I’ve done lobbying before; I do as much as I can. However, we can’t just depend on a few people to raise awareness for MS. We ALL need to take part in some sort of way.

Do you remember hearing/seeing about the ALS Ice Bucket Challenge? I saw a lot of people with MS wanting to do something like that, to bring awareness for MS. While it’s a good idea, it’s very hard to ‘copy cat’ an awareness project. But ALS is also a neurological illness with no cure, so the research being done for ALS, is most likely going to benefit the MS community in some way or another.

I’ve seen videos online of people at the mall putting up a booth, and having people who are shopping at the mall, “Try on MS”. There are so many things being done to raise awareness for MS around the World. I don’t feel like we all have to have a ‘theme’ to raise awareness, just spreading the word can do a lot.

However, I will be contacting my local news stations, letting them know that March is MS Awareness Month – and if they can do some sort of coverage on it. I’m going to make a shirt that says, “Ask me about multiple sclerosis” … original right? But it will get people wondering. Even if they don’t come up and ask me, more than likely, they will look it up on their phone.

Get involved with your local organizations group… whether that’s with MSAA, NMSS, or just something you and others you know with MS in your area get together once a month. Discuss with each other how you can make a difference in your community.

At MSWorld, we made a campaign to “Live Beyond MS: Breaking the Silence”. When I speak to people that have MS as well as their loved ones, they all want to know when a cure will be available for us. That’s a good question… but I’m not going to sit around and just wait for researchers to give me the answers we are looking for. Why? Because the bottom line is, the more people who know about multiple sclerosis, the more funding we will get for research, the closer we are to a cure, re-myelination, Stem Cell… the list goes on and on.

So, what is the conclusion to this article? Don’t wait for someone else to do something to bring awareness to MS… start doing it yourself, every bit you do makes a difference, whether you believe it or not.

xoxo
Ashley Ringstaff
MSWorld Volunteer
Diagnosed in 2010
Blogger for MultipleSclerosis.net
Follow me on Facebook
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MS Awareness Month: A Chance to Make a Difference!

By: Meagan Freeman

Every March, we have the opportunity to share our own stories and participate actively in spreading awareness about multiple sclerosis. The possibilities are endless, ranging from the MSAA “Swim for MS” fundraiser, MS biking events, MS walks, read-a-thons for our children in schools, and any other activity that might assist in spreading knowledge about our illness. This disease continues to be poorly understood by many, and it is still considered rare, with an incidence of 1 in 1000 in the US currently. The need for awareness has never been greater, and we can all have a hand in educating others. If we each take on the task of sharing information with those around us, knowledge can spread like wildfire.

Many patients find that they are unable to participate in these activities to support MS awareness. Many fundraisers are physical, such as running, walking, biking, and swimming events. Sometimes, the thought of participating in an event like these can be daunting for those with physical disabilities. Some patients might think, “How can I possibly participate in these?” There are a myriad of options for those who may not have the ability to actually take part in a physical event, however.

Fundraising while a family member or friend completes the physical part of the event is a wonderful option. I have had several friends participate in local MS “muckfest” and running events, while I took on the task of raising donations. I helped advertise and share information, while my runner friend completed the event. We managed to raise $2000 together last year alone. No amount of money raised is too little, and no one should feel like they cannot make an impact.

Another option is to spread awareness through blogging, speaking and writing. My personal contribution to MS awareness continues to be my blog. I started this blog with the goal of sharing my own personal experiences with MS in order to educate, and to ensure that no patient ever feels isolated or alone. The simple act of sharing your story may have a greater impact than you ever imagined. The thought of helping others simply by sharing your story is incredible! You never know who needs to hear your experience at that very moment.

Whether you choose to donate to an MS organization such as MSAA, to participate in an MS event, or simply share knowledge and educate through writing or speaking, you can make a difference. If every MS patient takes on the challenge of increasing awareness about our illness, we are capable of making sweeping changes. Let’s work together during the month of March (and beyond,) to increase knowledge, share our stories, and have a personal impact on finding the eventual cure for multiple sclerosis.

*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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March is MS Awareness Month

MSAwareness2015

 (right-click this image and save it to your computer to use on social media)

MSAA recognizes March as MS Awareness Month. Throughout the month, we encourage everyone to increase their knowledge, understanding, and support of individuals whose lives are affected by multiple sclerosis. MSAA is a great place to start to learn more about MS and you can discover the many ways we improve lives today through our vital programs and services.

MSAA offers the following ways to learn and support the MS community this month and throughout the year:

  • With 39 titles and growing, our MSi Video Library contains educational videos and webinars on a variety of topics specifically focused on the MS community.
  • In addition to MSAA’s award-winning magazine, The Motivator, we also offer many publications to educate the community including the recently published booklet, Improving Lives Today! A Guide to MSAA’s Programs and Services.
  • Throughout the year, MSAA hosts educational events for people with MS and their care partners – check out our Calendar of Events to find upcoming programs happening in your area.
  • MSAA’s Art Showcase highlights the amazing artwork created by talented individuals with MS. You can even send an eCard to family and friends featuring the artwork of your favorite artist to help raise awareness about MS.

Interested in helping the MS community?

  • Register today for Swim for MS and help raise awareness and funds that directly support the MS community! Getting started is as easy as 1-2-3! Check out MSAA’s Swim for MS video.
  • Help us spread MS awareness by using MSAA’s “March is MS Awareness Month” badge (located at the top of this page) as the profile picture on all of your social media platforms. Don’t forget to use the hashtag #MSAwareness in your posts!

Thank you for all of your efforts to help spread the word and raise awareness about MS during MS Awareness Month! We greatly appreciate your continued support of our vital mission of improving lives today for the entire MS community.

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So Long March…

It’s time to say farewell to another month in the calendar year, and for most around the country, a hopeful farewell to the end of winter. It’s been a harsh season for most of the US, so with the end of March we welcome a warmer, though often rain consumed month of April. As we embark upon the end of this busy month, it also marks the end of Multiple Sclerosis Awareness Month, though only formally on the calendar. MS Awareness has the ability to continue the whole year round, and though its promotion in the month of March draws to a close, the MS community can continue raising awareness for the disease throughout the year. Continuing to increase education, advocacy and support for those with MS are some of the goals the community continuously strives for. So while the month of March comes to a close, it brings with it the opportunity to enter a new phase of the year with the same objective: to increase awareness of MS.

March MS Awareness Month calendar Graphic

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Spread Some Sunshine For MS Awareness Month

jeri

March is half over and MS Awareness month is in full swing. We’ve come a long way in helping people understand the difference between multiple sclerosis (MS) and the disease known for “Jerry’s Kids.” I have to admit, I even made that mistake when I was first diagnosed.

Lying there in the hospital bed, feeling vulnerable in the one-size-fits-nobody cotton gown, I listened as my doctor broke the news in his most apologetic tone.

“I can’t say for sure, but it’s possible you have multiple sclerosis,” he stammered.

“You mean like that disease with the telethon?” I asked.

“No, you’re confusing MS with muscular dystrophy,” he corrected me. But that was all I got. No literature or other helpful information that might explain it further.

So here I am, fifteen years later, reflecting on what has changed. Granted, it seems less folks are making that mistake, but we’re a far cry from the level of “awareness” needed to make MS a household word. Wouldn’t it be nice to see medical breakthroughs in MS as part of your typical nightly news program?

Maybe all MS needs is a good PR campaign. That’s where we who are living with it come in, sharing the importance of our cause and getting folks to pay attention.

But how do we go about affecting this change? How can you and I raise awareness so that the words “multiple sclerosis” roll easily off the tongues of healthy people? It takes communication on every level and that should start at home.

Don’t be overwhelmed thinking you have to have a grand plan or platform, or that your voice doesn’t matter. Every voice matters! And I’ve got a simple plan for spreading MS Awareness:

  1. Learn: You can’t explain MS to someone else until you are comfortable that you, yourself know what it is. So learn all you can.
  2. Simplify: If you’re trying to explain how MS affects you, do it with analogies. I always compare my nervous system to an old lamp and MS has caused its cord to fray. My brain flickers just like the light when the signals can’t get through. Depending on where it’s frayed, my symptoms will vary.
  3. Express yourself: Don’t think you have to be a writer, speaker, or artist to share what you know about MS. Use your own unique talents. If you like to bake, make cookies with “MS” written in frosting for a conversation starter. Maybe you’re into woodworking, so make a wallhanging or mailbox with an MS theme. Like to sew or make jewelry? Design your own MS emblems and add them to your ensemble in order to spark interest. Everyone has some gift to give to the MS awareness campaign.
  4. Get Social: The internet is a tool of empowerment. Share awareness graphics with your friends on Facebook.  MSAA_month_badge3Tweet links to Awareness fundraisers and events on Twitter. Create a video to help the newly diagnosed understand it’s not the end of the world.  Remember to use hashtag #MSAwareness when posting on social media.
  5. Reach out: Mother Teresa knew what she was talking about when she said “Never worry about numbers. Help one person at a time and always start with the person nearest you.” That’s the best advice I ever heard, after all, she made a difference, right? Start with family and friends and before you know it, you are telling the produce manager at the grocery store all about MS.

Think of awareness as sunshine. Every time we spread our MS message, sharing the need for research and funding, we shine a little more light on our cause–and our future looks that much brighter.

References:

http://www.healthline.com/health/multiple-sclerosis/youve-got-this

Credit:

Hope for a Cure” illustration by Jeri Burtchell

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Multiple Sclerosis Awareness (when you might not want people to be aware)…

Diagnosis Awareness Blog Post Image

March is MS Awareness Month. As an advocacy group, you will hear MSAA discuss our available resources, and encourage you to get out and be active about raising awareness for MS and supporting programs which benefit individuals with MS. We will promote and support expanding knowledge and information about MS. With all of that going on, it might feel like you need to wave a flag shouting, “HERE I AM. I HAVE MS!!!”

As the Manager of Client Services at MSAA, I wanted to acknowledge that there are times when you (or your friend or family member) may not want others to know about a diagnosis. While you may want to be an advocate to spread awareness and information to help people understand about MS, you may not want certain people (i.e. an employer, a new boyfriend, or a casual acquaintance) to know you or a loved one has MS.

There is nothing secretive about a diagnosis, but it is your (or your loved one’s) own personal health information. While some people might share that they had a heart attack or stroke with anyone they meet, others might feel medical information is no one else’s business and only talk about it with a doctor or close family member.

So, if you want to be an advocate but not shout a diagnosis from the rooftops, what can you do?

Infographic for blog

On social media sites:

Think before you post. Are you comfortable with everyone seeing your update or picture? If not, make sure to check your privacy settings before sharing personal (health-related) information so that only people you want to learn about your private information, such as close family or friends, can see your updates and pictures.

In person:

If you want to talk about MS in the community, know that not everyone who spreads information and encourages activity for a cause will be personally affected by it. If you don’t feel comfortable sharing your diagnosis, make it general: “ I’m helping out with a cause… Can you help too?” or: “There is a charity I support, and I wanted you to know about them and what they do” are generic ways to introduce information about “your cause,” even if you don’t want anyone to know it is personal.

In many of these situations, there may be a future point in time where you might want to share a diagnosis. On the job, you may decide to ask for a reasonable accommodation and share a diagnosis when needed. When your boyfriend goes from being casual to serious, you might feel comfortable disclosing. Likewise, if a casual acquaintance becomes a good friend, you may want to share. If not, there is no pressure. You can still be an advocate for MS without disclosing a diagnosis.

MSAA_month_badge2

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March is MS Awareness Month

The Multiple Sclerosis Association of America (MSAA) recognizes March as MS Awareness Month. Throughout the month, MSAA is raising awareness and improving lives today!

March MS Awareness Month calendar Graphic

MS Awareness Month is a great opportunity for everyone to learn more about multiple sclerosis and discover all the services and support MSAA offers. 

MSAA offers the following ways to learn and support the MS community:

  • Visit our website, mymsaa.org, which provides easy access to vital information, resources, and tools from your desktop, mobile phone, or tablet.
  • View any of our educational videos and webinars in our MSi Video Library ranging in topic from MS symptom management to understanding Medicare, and much more.
  • Read one of our publications, including MSAA’s award-winning magazine, The Motivator, and the recently published MS Research Update with the latest latest findings in MS treatments and research.
  • Attend one of MSAA’s educational events for people with MS and care partners – check our Calendar of Events to find upcoming programs happening in your area.
  • Check out MSAA’s 2014 Art Showcase, featuring creative and beautiful artwork by individuals with MS.

Help to spread MS awareness by using MSAA’s “March is MS Awareness Month” badge as your social media profile picture (right-click the image below, save it to your computer, then use it on your Facebook, Twitter, Google+, or LinkedIn account profile pictures). 

Also remember to use the hashtag #MSAwareness in your social media posts.

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We look forward to everyone learning more about MS during MS Awareness Month. And we greatly appreciate your continued support of our vital mission of improving lives today for the entire MS community.

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