Healthy Living with Primary-Progressive MS

Posted on March 26, 2018 by MSAA

It’s hard to believe we are headed into the last week of MS Awareness Month. This week we will be focusing on Healthy Living with Primary-Progressive MS. I know sometimes you may feel overwhelmed and discouraged by the lack of medical advances for PPMS patients. Please know that according to MSAA’s website, MS research and medications have been making leaps and bounds over the past few years. While scientists may need several years to accomplish such large goals, today’s approved drugs for MS are effective in slowing down disease activity for individuals with relapsing forms of the disease. This has been a dramatic step toward a cure. Plus, with studies now being directed to PPMS as well, researchers believe it will only be a matter of time before individuals with PPMS may also have access to several effective disease-modifying treatments. One medication — Ocrevus™ (ocrelizumab) — has been approved by the U.S. Food and Drug Administration (FDA) for the treatment of PPMS as well as for relapsing forms of MS. Ocrevus was made available to MS patients starting in 2017. MSAA’s website has several articles about this new medication and we recommend you talking to your doctor to see if this medication could work for you.

Outside of medical advances, it’s also a good idea to develop healthy habits to combat MS. Taking care of your overall health can improve your quality of life.

Here are some basic tips for a happier and healthier lifestyle:

Choose a diet rich in nutrients and vitamins.
Get regular exercise to help strengthen muscles.
Practice gentle exercise programs like tai chi and yoga to help with balance & flexibility.
Join a support group
Talk to family and friends about what you may be going through
Stay positive

Additionally, some people find that massage and mediation help to relieve stress and anxiety. Assistive devices that can help you maintain your independence and freedom are important too.

Also, it is important to stay current on new developments in the MS community. It is recommended that you educate yourself and join organizations that can provide you with information about PPMS and MS medical advances. One such organization is the Progressive MS Alliance, http://www.progressivemsalliance.org/

Finally, please join MSAA and Steven Bromley, MD for a live “Ask Me Anything” event exploring Primary-Progressive MS on Tuesday, March 27, 2018 from 6:00 – 7:00 pm Eastern. This online event will be hosted on MSAA’s Facebook page so please follow @MSassociation on Facebook and log in for the AMA on March 27, 2018 at 6:00 pm Eastern.

MS Awareness

Posted on March 9, 2018 by MSAA

By Lauren Kovacs

Guess what? Awareness goes both ways.

Yet another thing that MS folks deal with is awareness. You have to be aware of your own limits and make others aware, too. Who doesn’t want people to see MS? Sadly, awareness has to be spoon fed to others. Little bits. The taste is bitter so, go slow.

If you overdo the information, glazed eyeballs are the result. Some choking may also happen. Strained MS information spit back at us is the last thing we need. Like feeding a baby strained peas, take it slow. Be patient. Little bites.

I see MS awareness as conjoined twins when it comes to others. I give others the scientific/medical side and I always couple it with a simple explanation. MS is not easy for anyone to understand. Analogies help when explaining a symptom to others.

Yes, there are times I lied and said it was from my college cheerleading days. I tell them it was a neck injury from falling off a pyramid. What? I was, in fact, a college cheerleader and I did fall off a pyramid. Not a total lie. Plus it is way more glamorous and interesting. The people I have told this to were usually repairmen that I will never see again.

Lying is wrong, I know. Everyone likes a bit of drama though. I now say it is MS and let them digest it and ask questions, if they want. Boring. Most people need time to digest MS information. Awareness is part of that digestion. Frustration at others not grasping or understanding it is the greased pig of MS.

Heat and fatigue plague most of us. I never keep that to myself. This is when you get to play detective too. If you think the person can take a bigger bite, share. If not, back off a bit. You have to kind of see what the person can handle.

Know your own limits too. We are all super heroes, but even super heroes have limits. The Flash can only run so fast, for example. Super heroes know their limits and have enough humility to know when to stop.

It has gotten easier, as my MS shows now. People know I can’t regulate my temperature. The ice wraps and frozen drinks give it away. Maybe me looking like a wet dishrag was a clue. I make the drowned rat style look good.

Explaining neurological fatigue is not easy. We don’t really have chronic fatigue, but it is chronic. It never goes away and sleep doesn’t mean energy, ever. It helps that my sons and husband see when I begin to wilt. Around others I say it politely and do what I got to do. I exit the stage and if people boo and hiss, I let them. Take care of YOU. Self-awareness is important too.

Awareness is tough, but be aware that you are the one dealing with MS on a personal level. Fatigue and heat ruin YOUR fun. We are the ones who deal with what happens when we get too tired and/or hot.

Years ago, I once got too hot and lost vision in both eyes for about 30 minutes. My life stopped. Fear tore me apart. No one else knew and life didn’t stop for them. It was a very long 30 minutes for me.

We have roadblocks and we have to find a way around them. Even if people had known, would it have made my eyesight come back faster? If I had avoided getting hot, my sight would have been fine. Learn to be on top of your own awareness. Awareness goes both ways.

Multiple Sclerosis Around the World

Posted on August 6, 2014 by Angel Blair

Looking at MS around the world, the Multiple Sclerosis International Federation is an international organization offering support and advocacy for those with MS throughout different countries. Their initiatives include communicating information about MS to a global audience, especially where there is little MS support. They also work and coordinate with other MS organizations to advocate for research efforts and campaigns to help those living with MS, including World MS Day each year. They have several member organizations throughout different countries, and act as an international hub of MS information and support.

With MS affecting individuals throughout the world, it is imperative to have an international resource in place to turn to when information, support, and advocacy are needed. Through publications, newsletters, and weekly MS research updates, the MSIF offers those with MS increased awareness of the disease and its impacts. The group provides an opportunity for those countries without much MS awareness to receive additional support and resources.

As MS continues to be researched and investigated across the world in regards to its potential origin and treatments, the MSIF stands as a pioneering network to keep those in MS communities around the world apprise of new developments.

For more information about the MSIF, visit their website.

So Long March…

Posted on March 31, 2014 by MSAA

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.

Spread Some Sunshine For MS Awareness Month

Posted on March 17, 2014 by MSAA

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:

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.
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.
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.
Get Social: The internet is a tool of empowerment. Share awareness graphics with your friends on Facebook. Tweet 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.
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

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

Posted on March 7, 2014 by MSAA

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?

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.

March is MS Awareness Month

Posted on March 5, 2014 by MSAA

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

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.

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.

Vote for your Favorite Thanksgiving Card & spread awareness about Multiple Sclerosis

Posted on November 14, 2013 by John MSAA

For the third year in a row, MSAA is conducting a Thanksgiving Card Competition! We have six online Thanksgiving Card candidates (shown below), all vying for the top spot as MSAA’s most-popular Thanksgiving Card for 2013.

Please vote and then watch to see if your favorite card will emerge victorious! Once the voting is over next week and the selections are tallied, we’ll let everyone know which card is the top choice to email to friends and family, wishing everyone a Happy Thanksgiving!

To vote for your favorite online card design, please visit our Thanksgiving election poll (or go to support.mymsaa.org/voteforcard).

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