About MSAA

The Multiple Sclerosis Association of America (MSAA) is a national nonprofit organization and leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a Helpline with trained specialists; award-winning publications, including, The Motivator; MSAA’s nationally recognized website, featuring educational videos, webinars, and research updates; a mobile phone app, My MS Manager™; safety and mobility equipment products; cooling accessories for heat-sensitive individuals; MRI funding; My MSAA Community, a peer-to-peer online support forum; MS Conversations blog; a clinical trial search tool; podcasts; and more. For additional information, please visit www.mymsaa.org or call (800) 532-7667.

Creating the Support Network I Want

Posted on April 18, 2018 by MSAA

By Stacie Prada

Living with a chronic and progressive illness like MS includes living with fear, pain and diminishing abilities. It’s rough. It can make me grouchy and impatient. But it’s not a pass to treat people poorly. It takes more effort to be appreciative and pleasant when I’m tired and feel crummy, but it’s a tremendous life skill to cultivate. Sometimes I succeed, and sometimes I fall short of my goal. When that happens, I follow up with that person and try to repair any damage.

I’d rather people support me because they want to be there with me. If someone is helping me solely out of obligation or pity, their resentment or condescension will come through in every interaction. No thank you.

Feeling like a burden isn’t helpful to anyone’s physical or mental wellbeing. And being treated like a burden isn’t fair. Every person has challenges and limits, and we all have needs. Needs aren’t weaknesses. Some of our needs are just more visible or less common compared to what’s thought of as normal.

My best relationships are those of mutual admiration and appreciation. We help each other often, but we make sure we respect our limits so that nothing is done with resentment.

I’ve put together some guidelines for myself to build healthy and positive relationships:

When people show kindness or concern, accept it graciously. If I discourage it because I’m embarrassed, grouchy or feeling like they’re being pushy, they’ll eventually stop asking or providing support.
Notice when I feel better about myself after interacting with someone. Put extra effort into connecting with them.
Notice when I feel worse after interacting with someone. Consider possible reasons, and be honest about whether it’s me or them. See if there are ways to improve the relationship. Let it go if it’s not a critical relationship. Pursue sincere conversation or counseling for the relationships I’m not willing to let go.
Know that letting go of some relationships will be necessary for my health. This is really tough. Try to wish them well and move on.
Be a cheerleader for others. Share in their joys and accomplishments genuinely and without jealousy, and express sympathy and encouragement when they’re having a hard time.
Be willing to accept help. I’d love to be completely self-sufficient and strong, but refusing help pushes people away. Remember accepting help might make them feel better too.
Grant people grace when they periodically commit a friendship blunder. Hope they’ll do the same for me. People will never respond perfectly in every situation, and anyone expecting perfection is being unreasonable.

Striving to follow these guidelines has improved my relationships immensely, and it’s created a positive support network that I can count on when I need it. We support each other and don’t keep score. Having them around makes every challenge easier to tackle and every loss more tolerable to accept. Plus, the effort I put into adding positive energy in the world helps me feel I have value and just plain feels good.

*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/

National Volunteer Week

Posted on April 16, 2018 by MSAA

Celebrate National Volunteer Week April 15-21, 2018!

Welcome to National Volunteer Week! Established in 1974, National Volunteer Week began as a way to set aside a time to volunteer for a cause and to recognize the amazing people who dedicate their time and service year-round.

Volunteers are an essential part of any organization and it is no different for MSAA. Our selfless volunteers who have partnered with MSAA over the years help us spread the word, make our programs possible, serve as ambassadors for our online forum and improve lives today for the entire MS community.

What does service mean to you? Why do you volunteer? Let us know how you are celebrating National Volunteer Week by sharing your story with us on social media using the hashtag #MSAAVolunteer.

Do you have any interest in volunteering with MSAA? Visit our Volunteer page for more information, or contact us at volunteer@mymsaa.org.

It Takes a Village to Navigate This Life with Multiple Sclerosis

Posted on April 13, 2018 by MSAA

By Penelope Conway

Do you know that old saying “It takes a village to raise a child”? Well, I happen to know for a fact that it takes a village to navigate this life with multiple sclerosis.

I was always an independent person. One of those “I can do it by myself” kind of people. I could change the oil in my car, repair a leaking pipe under the house, open those impossible pickle jars and move furniture without even breaking a sweat. Having to shift that type of independence after MS came along was really hard for me.

I found that I needed help getting to appointments because my eyesight and motor function had decreased making it unsafe for me to drive myself, especially if going long distances.

I needed reminders (albeit sometimes annoying) for some of the simplest things in life like “be sure to set your trash out today for pick-up.” Something I wouldn’t have forgotten in times past.

I needed help pulling wet clothes out of the washing machine because my hands just couldn’t properly grip the wet clothes. Then folding the clothes and towels once they were dry would take me hours to complete.

I found that there were tons of things I needed help with. As an independent, I-can-do-it-myself kind of person, that was not an easy thing for me to come to terms with but it has gotten easier over time. I can still be a bit stubborn, but I know my limits and reach out when I know I need help.

If I can enlarge my circle of support, I am always willing to give it a try. I was even talking to my neighbor yesterday about calling on her if I have trouble opening those easy-to-open packages that aren’t really easy to open or when I can’t get a pill bottle open. She was more than happy to be asked to help out.

One thing I found to be extremely important is to let those that are helping you out know just how much you appreciate what they are doing. If they know you value their support, care, and love, it gives them a sense of purpose and they know that the things they do matter. Even the small things like picking up the mail or stopping by for a chat should never be taken for granted.

People need to know the time they put in to helping you makes a difference. They may say you don’t need to thank them, but thank them anyway. It always matters.

I have had some people that would always drag me down with their know-it-all advice and negative attitude, but do you know what I did? I cut my ties with them. Sometimes that is the healthiest thing you can do. MS is not any easy things to deal with and you don’t need any added stress to your day making things worse. Set up boundaries and don’t back down.

Surround yourself with positive people that lift you up. You deserve to be happy.

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (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.

Five MSAA Resources for Care Partners

Posted on April 11, 2018 by MSAA

MSAA strives to be a leading resource to the MS community by providing free programs and services. But did you know that MSAA’s free programs and services aren’t just for individuals with MS? Here are five MSAA resources that care partners can take advantage of, too:

MSAA offers in-person educational programs about a variety of topics related to living with multiple sclerosis that are hosted throughout the country. These programs are presented with guest speakers who are experts in their fields, allowing attendees the chance to ask direct questions from the people who know best.
This blog! MS Conversations features blog posts from many wonderful guest bloggers who are able to give insight and a voice to how individuals with MS experience their disease. While everyone’s disease course and symptoms may be different, their posts offer unique perspectives that only a person living with MS can provide.
MSAA’s award-winning publications are not just helpful for individuals with MS. These publications feature detailed information about various topics including: a general overview about multiple sclerosis, different therapy options, MS relapses, MS progression, and more.
My MSAA Community, the free online forum where people can feel free to share information and experiences with other friendly and supportive members. Care partners are welcome to share their questions and get answers from other members of the MS community who may have had similar experiences.
Feel free to also call MSAA’s toll-free Helpline at (800) 532-7667, ext. 154 to speak to one of our Client Services Specialists who are there to help answer any questions and offer additional resources if they are needed. Our Client Services Specialists can also be reached via our online chat feature, or via email at MSquestions@mymsaa.org

Care of the Care Partner

Posted on April 9, 2018 by MSAA

For most people with a chronic disease like multiple sclerosis, the biggest piece of your support network is your care partner. Care partners – whether they be a best friend, a spouse, a sibling, a parent, or other family member – are an essential part of any support network. But like the people they care for, care partners need help and resources to care for themselves and prevent care partner burn out.

The Family Caregiver Alliance reports that 1 in 10 care partners has experienced a decline in physical health as a result of caregiving. Due to the stress and daily struggles of life with a chronic disease, many care partners choose to spend their time and energy on their partner’s health and wellbeing, rather than their own. Some small, but very important things that all care partners should do for themselves to prevent health decline are:

Make appointments with doctors and dentists for regular checkups and screenings.
Have routine medical testing done such as checking cholesterol levels, blood pressure, mammograms, or prostate exams.
Make sure to get enough sleep. It is much easier to focus on tasks of the day if you are well rested.
Maintain social interaction with friends and family who are important to you.
Make sure there is still some “me” time. If you have a hobby that you enjoy, be sure to keep up with it, even if only in small increments.

Most importantly, care partners should always feel comfortable asking for help. Sometimes, one care partner is not enough and they need a break. Sometimes, an individual with MS needs specific kinds of help that requires a specialist. Resources are available for individuals with MS and their care partners for these situations, and many more.

To learn more about care partner resources, challenges, and care partner stories feel free to read over our cover story from the Summer/Fall 2014 edition of The Motivator, Care Partners: The People Who Make a Difference in Our Lives.

Primary-Progressive MS Ask Me Anything – A Recap

Posted on April 2, 2018 by MSAA

Last week, MSAA held its third and final Ask Me Anything session of MS Awareness Month 2018! Focusing on the topic of Primary-Progressive Multiple Sclerosis, MS Expert Steven Bromley, MD spent one hour answering 19 questions from our Facebook followers.

Some of the most popular questions from the AMA with Dr. Bromley include:

Is secondary progressive MS treated differently than Primary-Progressive?
What is the feedback from any of your patients who have now had their 6 month full dose of Ocrevus (after already having the first 2 half doses 6 months prior)?
Why does it hurt so much when I walk?
Is B12 injection helpful for MS fatigue?

Find the answers to these questions and many more on MSAA’s Facebook page or on the official transcript.

Progressive Talk

Posted on March 28, 2018 by MSAA

By Doug Ankerman

The word “progressive” brings to mind images of broad, dynamic thinking.

Progressive is fresh. Progressive is modern. Progressive is revolutionary in every aspect.

Progressive was NOT me in any way, shape or form.

Just look at me as a kid. Absolutely nothing progressive. Big ears. Big head. Eddie Munster hair. Shy. Backward. Sucked my thumb till I was eight-years-old.

My progressive aversion continued well into adulthood till finally being tagged “Secondary-Progressive” years into my MS journey.

It was the first-time I had been “progressive” at anything.

Though my new-found classification never bothered me because I figured I had had Progressive MS since day one. I never experienced the ups and downs of Relapsing-Remitting. It’s always been a gradual downhill slide. Like the most boring roller coaster ride ever. Like a driveway tilted just enough to let the rain run to the curb.

Having the label “Progressive MS” was no biggie to me because it is just that – a label. Someone’s opinion. A moniker. A mark. My hope is you feel the same way.

Whether your MS is RR (Relapsing-Remitting), SP (Secondary-Progressive), PP (Primary-Progressive) or CP (Chronic Progressive), it doesn’t matter. MS doesn’t define you. MS doesn’t limit you. So don’t let it change you.

After twenty-two years I have come to accept my progressive MS…it’s my not-so progressive sense of fashion that continues to embarrass my wife in public…

But I LOVE my cargo shorts, honey!

All this progressive talk reminds me today, March 28^th, is the first-ever Progressive MS Day, a day raising awareness for those living with the most debilitating forms of the disease. You can help spread the word in your social media by using the official hashtag: #ProgressiveMSDay.

Join me as I give #ProgressiveMSDay a well-deserved sitting ovation.

Keep moving my friend.

*Doug writes about MS and other stuff on his humor blog at myoddsock.com, Facebook.com/myoddsock & on Twitter @myoddsock.

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.

Brain Preservation and Cognition Ask Me Anything – A Recap

Posted on March 23, 2018 by MSAA

This past Monday night, MSAA held its second Ask Me Anything session of MS Awareness Month 2018! Focusing on the topic of Brain Preservation and Cognition, MS Experts Rohit Bakshi, MD, FAAN and Jack Burks, MD spent one hour answering more than 20 questions from our Facebook followers.

Some of the most popular questions from the AMA with Dr. Bakshi and Dr. Burks include:

Can cognitive loss be remedied or regained?
Does the loss of cognition have anything to do with the loss of social etiquette?
Is it possible after a diagnosis of MS to have no further physical symptoms or relapse of MS for a period of 5 years, but to suffer significant cognitive losses during that 5 year period?

Find the answers to these questions and many more on MSAA’s Facebook page.

Cognitive Issues and MS

Posted on March 21, 2018 by MSAA

It has been said across the internet that “we only use 10% of our brain.” If you’ve ever walked into a room only to forget why you were there, you might agree. Generally speaking, most scientists now seem to agree that we use every part of our brain, but we may only use 10% of total brain function at one time. Brain function, cognition, and the way we process information is still one of the biggest mysteries of the human body that scientists are actively trying to unravel and understand.

One of those mysteries that scientists and researchers are trying to better understand, is how brain function and cognition are affected by chronic diseases like multiple sclerosis. Approximately half of all individuals with MS experience some kind of cognitive issues as a result of their disease. Most often, these cognitive issues affect:

Memory
Decision-making
Attention span
Speed-of-information processing

It can be difficult to measure the impact of cognitive issues, as there is no way to establish a baseline for everyone. Researchers are still looking into the best ways to evaluate cognitive deficits for individuals with MS, since MS can affect each person in different ways. Depending on where lesions are in a person’s brain, can affect the type and severity of the cognitive issues they are experiencing.

While there are not currently any medications or disease-modifying therapies that target cognitive function, there are strategies available for people experiencing cognitive issues. From brain games, to Cognitive Behavioral Therapy, to extensive note-taking, each strategy is designed for specific brain functions affected by MS.

To learn more about these options and for more information about cognitive issues, take a look at our cover story from the Winter/Spring 2015 edition of The Motivator, Cognitive Issues with MS: Research, Strategies, and Support.

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