Meet the Board

MSAA strives to be a leading resource for the entire MS community by improving lives today through vital services and support – and we could not accomplish this without the help of our volunteer board members. MSAA’s Board of Directors is comprised of accomplished professionals from across the country who volunteer their time to further MSAA’s mission. With our ongoing series, Meet the Board, we hope to introduce you to our wonderful volunteer board members!

MSAA is proud to highlight two volunteer board members this month – Wendy Scott and Ira Levee, Esq.

Wendy Scott
Member of the Programs and Services Committee

Professional Background: Wendy Scott is a professor of law at the Mississippi College School of Law, where she made history as the first African-American to serve as the Dean for the MC School of Law, which she did with distinction from 2014 to 2016. Professor Scott teaches Constitutional Law, Civil Procedure, Evidence, Native American Law, and Gender and the Law. Her scholarship focuses on constitutional theory and school desegregation and she is currently completing a book of dissenting opinions of Justice Thurgood Marshall with her coauthor.

Ira Levee, Esq.
Board Secretary and Member of the Development Committee

Professional Background: Ira Levee, Esq. is a Senior Legal Editor at Thomson Reuters/Practical Law and is an accomplished attorney with extensive experience in bankruptcy law as well as commercial and bankruptcy litigation. Mr. Levee is a member of the American Bankruptcy Institute and has provided legal services for the Volunteer Lawyers for Justice Bankruptcy Pro Bono Program (Newark, NJ) and the Honorable Morris Stern Bankruptcy Pro Bono Project (Rutgers University School of Law – Newark, NJ).


What inspired you to join MSAA’s Board of Directors?

Scott: “I was honored with a nomination to the MSAA Board by James Anderson. I had shared with Jim the story of Stephanie, my sister with multiple sclerosis, and the challenges she faced being diagnosed and affording the medicine needed for successful treatment. My family began donating to research, under the leadership of my sister Sandra, and we are now delighted to support the work of MSAA, which provides direct and needed services to people living with multiple sclerosis.”

Levee: “I have had a longtime association with MS, having served on the Board of Trustees of another MS non-profit organization. After leaving that group, I still wanted to volunteer to help those with MS. After speaking and meeting with several board members of MSAA, I knew this was a group of people that wants to improve the lives of those afflicted with MS. I was invited to join the Board in January 2017. I am proud to be a member of the Board and continue to be amazed by the dedication of the other Board members and more so, by the staff who never seem to stop. Their hard work inspires me to work harder for MSAA.”

What are your goals as an MSAA Board Member?

Scott: “I intend to learn more about multiple sclerosis and use this knowledge to propose ideas for more services. I especially appreciate the focus of MSAA on the particular challenges of women and minorities with multiple sclerosis. I hope to help educate even more communities about our work and find more people in need of the services we provide.”

Levee: “My goals are to get people more aware of all that MSAA has to offer those with MS and their families. This includes not only those with MS but individuals, corporations and medical providers, who can help support, financially and through other means, MSAA’s efforts. The services and products offered by MSAA are so valuable and important, but get little publicity. We need to get the word out through various events. As a Board member, I would like to see a program where Board members can meet people with MS to talk about MS and MSAA.”


Editor’s Note: MSAA is extremely proud and honored to enlist the support of Wendy Scott, Ira Levee, and all of our dedicated Board Members who volunteer their time, expertise, compassion, and leadership to help us achieve our mission of improving lives today for the entire MS community. We are very grateful for their service and look forward to their continued support as we strive to serve more people in more places than ever before. Thank you once again Wendy and Ira!

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What Does “I’m Tired” Mean to You?


For some, saying the words, “I’m tired”, may indicate a lack of sleep, or perhaps the end of a long, exhausting day. However, for those living with MS, these two words can mean so much more. Fatigue is one of the most common, and one of the most life-altering, symptoms of MS. Of the many issues associated with MS, fatigue is one that can have the greatest impact on daily life and an individual’s ability to do the things they love. We recently published an article titled, “What I Really Mean When I Say, ‘I’m Tired’”, where our contributor, Calie Wyatt, compared MS fatigue to sinking in quick sand. Cali vividly describes her ‘biggest demon’ as her unrelenting tiredness, and how it brings her down every day. She also tells us how difficult it is to get others to understand what it means when she says she’s tired.

In response to this article, we asked our community members to help explain what their fatigue feels like to them, and the response was overwhelming. Continue on for some of the great responses we received.

Mental and physical exhaustion

Feelings of extreme mental and/or physical exhaustion are some of the most common descriptors of MS-related fatigue. Many of our community members shared how debilitating this experience can be each day.

“Living with fatigue is grueling. I have days where trying to form a thought, let alone a sentence, is nearly impossible”
“I try not to put myself into situations where I get fatigued, because it can be dangerous because I can’t think straight and get anxious”
“I am tired 24/7. It has become my new normal”
“It is a weight pulling you down! Mentally and physically”
“It feels like your body is shutting down and it’s too weak to hold you up”
“I try so hard to forget my fatigue & be active & fun, but it ALWAYS drags me down. My mind knows I’m fun, but my body just won’t let me. I must constantly fight my body & pick my battles to do the most important things”
“I would often say it is like I am being dragged to the ground which eventually swallows me up”

Frustrating

Others who aren’t living with multiple sclerosis, or who don’t have fatigue that comes from a chronic condition, may struggle to understand MS-related fatigue and the ways it limits activities. This lack of understanding can be incredibly frustrating. Not to mention the frustration that already comes with the fatigue on its own.

“Trying to explain this tired we have is almost an exercise in futility. The only ones who get it, are those who have experienced it! Nothing ticks me off like saying I’m tired and having someone say, ‘me too’. What I wouldn’t give to be their kind of tired!!”
“I am frustrated by my fatigue. For me, fatigue affects my ability to think straight as well as being tired. The hardest thing for people to understand is how much effort I put into NOT getting fatigued.”
“Sometimes I want to scream, if I wasn’t so fatigued! My fatigue and exhaustion consume me. I also have fatigue that alters my daily activities for many months at a time. Stress doesn’t help. A description I’ve often used to describe the fatigue is that I feel like my batteries have been depleted, removed, and I’m just running on empty. And I can’t find any way to recharge them, and there are no charged batteries to be found”
“The fatigue is dominated by frustration and some anger; compounded embarrassment”
“It is frustrating to try to explain to people that yes, I look tired but getting more sleep won’t fix it and is harder than it sounds!”

Physically cannot move, talk or breathe

MS-related fatigue can be so intense, that it may feel like quick sand physically pulling the body down. This feeling can impact a person’s ability to carry out basic functions, such as moving, breathing, or talking.

“I’ve felt like I am too tired to even breathe”
“I say I feel like a melting ice cream cone”
“I would often say it is like I am being dragged to the ground which eventually swallows me up”
“There are days that I feel like I can’t move. My extremities feel as if they are made of lead and my head feels all fuzzy”
“I have days that I feel too “tired” to breathe, talk, move…. it’s gotten bad though, I know, when I just don’t feel like it’s worth trying to say anything. It just seems like the thought of talking is overwhelming…and I take constant big breaths because I don’t feel like I am getting enough air”
“I feel constantly tired and dealing with that heaviness and sinking in quick sand feeling. And don’t really care to have others understand anymore because they simply never will”
“I feel like gravity is 15X greater over my body right now”
“MS fatigue requires all my energy for blinking and breathing”

It’s quite clear that MS-related fatigue is not only debilitating and real, it’s also unique and unrelenting. Our community members did an excellent job trying to describe this frustrating experience, however, it’s hard to fully understand this phenomenon unless you are living with it every day. MS-related fatigue can be a constant struggle, and the words “I’m tired” often don’t even scratch the surface of what’s really going on. These two words can take on a whole new meaning for those struggling with MS-related fatigue.

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We’re In This Together

This month we’ve been focusing some of our entries on care partners. We often think of the individual who is diagnosed with MS or cancer or mental health but what is not as often associated are the family, friends and care partners who journey along with them. While each person’s story is of course very different and I don’t want to generalize the experience of everyone I thought it would be great to get more of a perspective from a care partner of someone living with a chronic illness. We’ll call him Tony and in addition to being a masterful golf player, jazz enthusiast and retired teacher he is also the caregiver for his wife who we’ll name Maria (west side story anyone) who has been living with a chronic illness, Parkinson’s Disease for the last decade. Tony was gracious in giving me some of his time for this.

Me: What is one thing you want others to know about being a care partner?

Tony: Oh, we’re just jumping right in! Umm, I think It’s important for people to know that it’s hard. And not just in the sense that people think of. I love my wife and I take care of her because I love her, I want her to taken care of, I’m physically able to and as old [fashioned] as it may sound I promised to be there for her in sickness and health. I know she would take care of me this way if our roles were reversed. Umm, but also being a care partner it’s hard. I know lots of couples who are no longer together and we shouldn’t shame them for that. It takes a lot to take care of someone in this way. It’s hard, you know… it’s hard.

Me: Yea, I think what you said about shame is big. We sometimes look at a spouse or a family member and ask why didn’t you stay and be there

Tony: Right, Yea. I’m in support groups with people in that boat. And I think people don’t realize how difficult it can be. The hardship it can be, mental[ly] and physically too. And it’s not usually for a lack of love that people don’t stay. Which is I guess what most people would think when they see that but it’s, it’s hard.

Me: Yeah. You mentioned support groups. Do you run one or what has that looked like for you?

Tony: I’ve been part of a couple of them. I’ve never run one…maybe I should have! But I felt lonely before getting connected to my [first] support group. When I walked in it was like having mirrors or copies of myself around. Here were these other people who understood me. Who listened not with pity but with understanding. I found a place where I could be less alone. Where I could be upset or angry and not feel bad about it. Not every support group was for me but being in those places I’ve found that I’m not alone and there are other people who are there in the same boat

Me: What was Maria getting diagnosed like for you?

Tony: It was kind of crazy. She has other members of her family who have diagnosed with it and I just didn’t think it would be her, it would be us. But it made me aware and think of a lot of things I never had before. Like what it was going to be like to take care of her and then who would take care of her if something happened to me.

Me: You always seem upbeat though.

Tony: There are days when it’s rough. But for the most part I think about the fact that I love her and she loves me and we’re in this together. She has lots she could complain about, but doesn’t… so why should I. We take it one day at a time, that’s all we can do

Being a care partner isn’t an easy thing to do and I’m sure Tony and Maria like all care partners have waves that ebb and flow. Seeking out a support group is a great way to find a group of people that can be in your corner.

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Support for the Supporter

Care partners are a vital source of support and assistance to those living with chronic illnesses like MS, and it’s important to realize that they need just as much care and support for themselves in order to maintain that role of care partner to others. Self-care often falls by the wayside as burnout and exhaustion from daily caregiving tasks overpowers all else; that is why calling out some of the crucial resources and services available to care partners is so important. In a previous post we talked about some of MSAA’s resources for care partners, so we thought it would help to expand on this to include some other types of community sources of assistance.

Offices of Aging and Disability Services:

These offices provide resources and services for caregivers that include respite care, homecare assistance and other community programs. Individuals can search by location for this office contact:

https://eldercare.acl.gov/Public/Index.aspx

Centers for Independent Living:

These centers offer information and referral services as well as some direct programs to those living with disabilities and are a good source of information to caregivers. To find one’s nearest location they can search by state/city/county here:

http://www.ilru.org/projects/cil-net/cil-center-and-association-directory

ARCH National Respite Network:

Resource providing a respite services locator, funding and caregiver support contacts, webinars and publications for caregiver needs:

https://archrespite.org/

Family Caregiver Alliance:

Organization that does policy and advocacy work for caregiver needs; they also offer caregiver education, online support groups and links to state by state resources:

https://www.caregiver.org/

Caregiver Action Network:

An organization providing education, peer support, and resources to family caregivers across the country:

http://caregiveraction.org/

Veterans Caregiver Support:

Support resources and tools are provided to those caring for veterans. Resources are also provided for specific conditions that include MS:

https://www.caregiver.va.gov/

https://www.caregiver.va.gov/Tips_by_Diagnosis/MS.asp

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Hummingbird Bundt Cake

Hummingbird Bundt Cake with Cream Cheese frosting is so yummy!  This moist cake is made with bananas, pineapple, pecans and delicious spices.  Every bite of this Bundt cake is satisfying and sweet!

Ingredients

  • 3 cups all-purpose flour
  • 2 cups sugar
  • 1 tsp baking soda
  • ½ tsp salt
  • ½ tsp ground cinnamon
  • 1 tsp ground nutmeg
  • ½ tsp ground cloves
  • ¾ cup salted butter, softened
  • 3 eggs, room temperature
  • 1 tbsp vanilla extract
  • 3 ripe bananas, mashed
  • 1 can-8 oz crushed pineapple (do not drain)
  • 1 cup chopped pecans

Cream Cheese Frosting

  • 8 ounces cream cheese , at room temperature
  • 1/2 cup (1 stick) butter , at room temperature
  • 1 pound confectioners’ sugar (about 4 1/2 cups sifted)
  • 1 teaspoon vanilla extract

Instructions

  1. Preheat oven to 325F.
  2. Grease a standard bundt pan.
  3. Whisk together flour, sugar, baking soda, salt, cinnamon, nutmeg, and cloves in a large bowl. Set aside.
  4. In a large mixing bowl, beat butter until fluffy. Add in eggs and vanilla and beat until mixed together.
  5. Beat in bananas and pineapple. Fold in pecans.
  6. Stir in flour mixture just until combined.
  7. Carefully pour batter into prepared bundt pan and bake for 70 minutes.
  8. Let the cake cool in the pan for 10 to 15 minutes before inverting onto a wire rack
  9. Let cool completely.

To make the frosting: Using an electric mixer on high speed, beat the cream cheese and butter in a large bowl until combined. On low speed, gradually beat in the sugar, then the vanilla, to make a smooth frosting.

Happy Baking!

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Creating the Support Network I Want

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:

  1. 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.
  2. Notice when I feel better about myself after interacting with someone. Put extra effort into connecting with them.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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/ 

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National Volunteer Week

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.

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It Takes a Village to Navigate This Life with Multiple Sclerosis

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.

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Five MSAA Resources for Care Partners

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:

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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
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Care of the Care Partner

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.

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