With Memorial Day coming up next week, it’s time to think about stars and stripes!!! Memorial Day cookie cake is a quick and easy dessert to take to your Memorial Day picnic or family BBQ. This treat is soft, chewy and smells amazing. It will be loved by all. Continue reading
As someone who is usually hesitant to try new things I’ve found that if you give something new a try, it could result in some really nice benefits and rewards. A few years ago I wrote about trying yoga classes for the first time, and as it turns out it’s something that has really helped my pain issues when they come on. I attend hot yoga classes, and I know for many with MS this style is not an option if heat sensitivity symptoms are an issue with the disease, but yoga in other formats can be beneficial too. It’s more about the movements and mindset it creates that can be valuable to all. Continue reading
MSAA is pleased to highlight a few towns across the country to showcase local resources and support for the MS community. The first area we are highlighting is in and around Chicago, IL. The resources provided below can assist those who live in the area get connected to MS Centers and helpful programs throughout the region. We hope you find this guide to navigating local resources helpful! Continue reading
Not long ago I wrote some about my first trip to see an acupuncturist. It’s a recurring trip that I genuinely look forward to and enjoy. There are lots of other areas where you can find some alternatives that can be added to what you are already doing, or in place of something. Now each alternative therapy may not work for you specifically and you should consult your physician when it comes to any radical changes to your diet, routine or the programs you adhere to. Continue reading
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.
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.
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!
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.
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:
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:
ARCH National Respite Network:
Resource providing a respite services locator, funding and caregiver support contacts, webinars and publications for caregiver needs:
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:
Caregiver Action Network:
An organization providing education, peer support, and resources to family caregivers across the country:
Veterans Caregiver Support:
Support resources and tools are provided to those caring for veterans. Resources are also provided for specific conditions that include MS:
- 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
- Preheat oven to 325F.
- Grease a standard bundt pan.
- Whisk together flour, sugar, baking soda, salt, cinnamon, nutmeg, and cloves in a large bowl. Set aside.
- In a large mixing bowl, beat butter until fluffy. Add in eggs and vanilla and beat until mixed together.
- Beat in bananas and pineapple. Fold in pecans.
- Stir in flour mixture just until combined.
- Carefully pour batter into prepared bundt pan and bake for 70 minutes.
- Let the cake cool in the pan for 10 to 15 minutes before inverting onto a wire rack
- 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.
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.
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