Wellness Covers A Wide Field

Posted on October 21, 2016 by MSAA

By Lauren Kovacs

Staying well encompasses physical and mental skills. Everyone has different needs and tricks. The key is to find what works for you. Maybe you choke up on the bat or spit in your glove.

For me, gluten reduction helps me stay ‘well-ish’. Eliminating it completely caused massive weight loss. I figured it out when my beloved donuts caused me to be super floppy. It turns out too much sugar contributed to the wet noodle effect too.

I did therapeutic horseback riding for years. It improved my gait, when I had one. After years, I had to give it up. I was wobbly and I was seriously freaking my Dad out who was my official side-walker.

Turmeric seems to help me be able to walk some. I use a walker in the house to keep my circulation going. Yoga helps, if you have energy. I like seated Yoga or I find exercises geared to seniors. I try to be active while reducing falls by being seated.

I schedule my day of any activity between 9-12. Not ideal, but I am worthless after lunch. I am in a different body, after lunch. I take half my “awake” medicine, nap and take the other half to get me through homework time with the kids. Combating fatigue is like walking a tight rope. One bobble one-way or the other will make you crash.

Be patient with yourself. We are standing in front of a pitching machine. It takes a lot of practice and there is a learning curve. You have to be ready to take a hit too. Strategy is important. Sometime you can smack the pitch and others you swing and miss.

Just like selecting your pitches, select how you respond to want MS throws at you. Days where you strike out miserably are going to happen. Maybe the pitch hits you and you have a bruise, but you advance to first base. You now have knowledge about avoiding that situation again. In my case, I learn to avoid a fall that way again.

Learn to treat yourself. Cheer yourself on out load. Positive affirming words to yourself out load can have a big impact. Just like a cheer squad helps to push a team forward, cheer for team YOU.

2017 Art Showcase Submissions

Posted on October 19, 2016 by MSAA

MSAA is now accepting submissions for the MS Ability Showcase and the Four Seasons Showcase!

A Panda Named Roni by Susan Russo

MSAA welcomes paintings in oil, watercolor, and acrylic, as well as pastels and drawings in pencil and ink. MSAA also accepts digital artwork.

Artwork will only be accepted from individuals who have MS. Submitted pieces must be two-dimensional. Sculpture, pottery, fabric, and other types of three-dimensional works cannot be accepted to either showcase. The MS Ability Showcase is open to all themes; however, submitted artwork to the Four Season Showcase must depict a specific season or holiday.

Snowy by Paula Breiner

Submissions will be featured on MSAA’s website beginning March 2017 in recognition of MS Awareness Month. Each month we will highlight one artist and his or her work.

Submissions will be accepted between now and December 16, 2016.

Submit your best work and view complete submission guidelines at support.mymsaa.org/showcase!

Read the Latest Issue of The Motivator

Posted on October 17, 2016 by MSAA

Service Animals and MS – read the newest Summer/Fall 2016 issue of The Motivator, available now in print and digital editions.

Read about the following articles in this issue of The Motivator:

Cover Story:
The Joys and Challenges of a Service Dog Partnership
Dr. Darbi Haynes-Lawrence takes readers along her eventful journey to partner with a service dog, encountering many benefits and hurdles along the way.

Up Front:
MSAA’s President and CEO Gina Ross Murdoch talks about record-breaking outreach, a new online community, and upcoming events to support MSAA’s vital programs and services.

Research News:
Information is given on newly approved Zinbryta™ (daclizumab) and two investigational medications, Ocrevus™ (ocrelizumab) and siponimod.

Read the latest issue at support.mymsaa.org/motivator.

My Wellness Litmus Test & Sphere of Wellbeing

Posted on October 14, 2016 by MSAA

By Stacie Prada

If I distill my health down to a litmus test to objectively judge my level of wellness, it boils down to this: How am I naturally behaving right now?

How I naturally behave is a reflection of the thoughts in my head and how I perceive the world. Am I struggling with something, or am I content? Am I interacting with other people positively without thinking, or is it taking extra effort to behave in a socially acceptable manner? Do I respond to inconveniences with frustration or compassion?

When our physical health is compromised and we’re sick, injured or chronically ill, it’s easy to be grumpy. After a car accident in high school, I lived with a constant headache for five years before having jaw surgery to correct TMJ misalignment. During those years, constant physical pain became normal. There were likely many moments I was grumpy. But living with pain didn’t preclude the wonderful times I experienced, nor did it override my sense of wellness. It was a part of the experience and something I worked on trying to improve. MS is like that for me. It’s an inconvenience and something I factor in to my daily decisions and life choices. With years of monitoring my health and adapting, MS has become only a part of my experience and not a constant dominating fear.

That said, MS does affect how I feel and can make me feel a little unwell at times. It doesn’t mean I’m not well. It may just mean I need an adjustment, a slight course correction to stay on the wellness path. Converting the realization that I’m not as well as I want to be can be done by thinking about the areas of my life that contribute to my wellbeing.

When I list them all, the list gets long, and I can overthink it pretty quickly. Thankfully ruminating is an enjoyable hobby for me. I loved reviewing wellness wheel graphics online and seeing how other people explain factors for health.

There are a lot of variations of the wheel of wellness and they can be used as a starting point, but I think it’s important to think about what you care about, not what you think you should care about.

I want to learn, contribute, be active, have meaningful relationships, feel good and look good. I want to be financially stable, have a tidy home and travel. For me being well means I can do at least a little of each without neglecting other aspects of my life that are important to me.

What if someday never comes? And what if it does? For me wellbeing is enjoying life today while planning for a future. The perfect day for me would include rest, activity, relationships, learning, contributing, creativity and celebration.

Look inside yourself, look outside yourself, and think about the mark you want to leave. If I wanted to score wellness for myself, it would be a complex equation with many, many variables. In my attempt to create an equation I visualized a sphere that magnifies based on my areas of health. When I focus on things I can control, say, do or believe, it bolsters my sense of wellbeing. It distracts me from things I can’t control, and it genuinely boosts my mood and love of life.

What would you add for your own sphere of wellbeing?

*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/

Insurance Open Enrollment is Coming!

Posted on October 12, 2016 by Angel Blair

That’s right, it’s almost here again-that time of year when individuals can enroll in a Marketplace health insurance plan. The open enrollment period to sign up for 2017 health insurance coverage begins November 1, 2016. Those who are uninsured can search for insurance plan options and assistance through the Marketplace to find a plan that works for them. Some may even qualify for lower costs on insurance premiums depending on your household information. Be sure to review the deadlines to sign up for insurance coverage to ensure that you are covered on a plan beginning January 1, 2017.

As this is an important time for those who are uninsured, it is too for those who have previously purchased health insurance through the marketplace. For the latter, if you are not satisfied with your current plan purchased for 2016 and would like to make a change, now is the time to do so. During open enrollment you can review other insurance plans to see if another plan better matches your needs.

For those currently enrolled in marketplace plans, you may receive a letter from your insurance company explaining if the company will either automatically re-enroll you for 2017 coverage, or if you will not be automatically re-enrolled. If your insurance company plans to automatically re-enroll you for coverage but you would like to make a change, it’s important to review other policies during the enrollment period and take action to change it by December 15^thto ensure coverage beginning January 1^st.

Whether you’re notified that you’ll be re-enrolled in your current plan or not, you do have to update your expected income and household information for the 2017 coverage year. This is to ensure that your premium tax credits are correct and that you will receive the appropriate coverage costs and plan options for the next year. A letter from the health insurance marketplace is also sent out to individuals currently enrolled that better explains the actions needed to receive the accurate premium tax credits for 2017.

In addition to updating your own income and household information, be sure to take the time to review the different insurance plan policies and prices for the new 2017 coverage year as these do change. You can also find helpful information with MSAA resources like My Health Insurance Guide and The Affordable Care Act and Multiple Sclerosis brochure that provides an overview of the insurance planning process and steps to help you PLAN ahead.

Resources:

https://www.healthcare.gov/

https://www.healthcare.gov/lower-costs/

https://www.healthcare.gov/quick-guide/dates-and-deadlines/

https://www.healthcare.gov/keep-or-change-plan/

Columbus Day

Posted on October 10, 2016 by MSAA

Please note that MSAA will be closed on Monday, October 10, 2016 in observance of Columbus Day. Our offices will reopen on Tuesday, October 11, 2016 at 8:30 am (Eastern).

If you have any questions, please feel free to call and leave a message on our Helpline at (800) 532-7667, ext. 154 or you can email us any questions at MSquestions@mymsaa.org.

It’s Almost Medicare Open Enrollment Time!

Posted on October 7, 2016 by Angel Blair

A week from now Medicare’s open enrollment insurance period will begin, running from October 15^th until December 7^th. This is the time when you can review your current Medicare plan and make changes if needed. You do not need to sign up for Medicare each year, but you can review your coverage and make adjustments if necessary to ensure your health insurance needs are being met.

Medicare beneficiaries who have a Medicare Advantage plan or Part D plan should receive documents such as ‘Evidence of Coverage’ or ‘Annual Notice of Change’ letters from your health plan showing coverage outlines and any changes that will occur. It’s very important to review these materials to make sure of any changes in the plan’s costs, providers, benefits, drug formularies, etc. so that if something is changing with your plan, you are aware of it and can make changes to your coverage if needed. These plans can change their benefits so it’s crucial to review your policy and any upcoming changes.

What can you do during the open enrollment period? According to Medicare’s website you can:

Switch from Original Medicare to a Medicare Advantage Plan and vice versa.
Switch from one Medicare Advantage Plan to another Medicare Advantage Plan or from one Part D prescription plan to another.
Join a Medicare Prescription Drug Plan (Part D Plan) if you haven’t done so.

The Medicare website offers a Medicare Plan Finder where you can search for and compare health plans, benefits, coverage and estimated costs. You can also contact Medicare directly at 1-800-MEDICARE (1-800-633-4227) for additional information and questions.

For additional help, you can receive individualized assistance and guidance in choosing coverage through your State Health Insurance Assistance Program (SHIP). This resource provides one-on-one insurance counseling and support, visit https://www.shiptacenter.org/ to find your local office.

MSAA’s My Health Insurance Guide is another helpful source for the MS community to find more information about insurance options and resources. This is an important time, so be sure to review your plan’s coverage and make changes if needed to make sure it’s right for you!

Resources:

http://www.medicareinteractive.org/get-answers/overview-of-medicare-health-coverage-options/changing-medicare-health-coverage/6-things-to-know-about-fall-open-enrollment

https://www.medicare.gov/sign-up-change-plans/when-can-i-join-a-health-or-drug-plan/when-can-i-join-a-health-or-drug-plan.html#collapse-3190

I’m Not Ready

Posted on October 5, 2016 by Ro Washington

This month we’re talking about wellness and this sort of fits in to wellness but it also just fits into life. I recently spoke with a young man and being the empath I sometimes am, what he said resonated with me on a person-to-person level. It’s not MS specific or specific for a gender, age, or race. This, I think, can be anyone and when I spoke with him it definitely was me. This young man not yet 25 years old had just found out he has MS and was not even out of the hospital parking lot contacted our helpline to…well honestly to vent. But not in an I just need to yell or scream or I need someone to blame way. His first words after Hello and the usual exchange of courteous pleasantries was “I’m not ready.”

Confused, I sat quietly trying to decide what, if anything, I should say in response and before I had crafted my next sentence he continued “I’m lost and I don’t know if you can help me but I am just not ready. I’m not prepared for this or know what to say or do. I am not open enough or smart enough for this. I’m not sick enough or old enough. I’m just not strong enough for this. I’m not ready.” We spoke for a while about the world he’d just entered, what he wanted to do next and what MSAA did. But mostly he spoke, listed and got lost in thought and I listened as he exhaled a breath he’d probably been holding for some time. Before finishing he asked me, “Do you have any idea what I mean?”

And I did; I do. I can’t relate to the diagnosis but I’ve been there, the I’m not ______ enough place. I’m not friendly enough, prepared enough, knowledgeable enough or good enough. I’m not helping enough, understanding enough, empathizing enough or listening enough. I’m not enough for them or won’t be enough to do this. I know I’m not alone in this (I don’t think I am at least), we all can get there from time to time. We aren’t ready, aren’t available, not right enough, rich enough or poor enough. We’re not well enough or sick enough or we feel we aren’t loved enough or able to love enough. We aren’t able to explain how we feel or why we feel the way we do. We’re not enough for them to stay or we aren’t ready to leave. I’m not sure, I’m not *you fill in the blank*.

It’s hard being able to admit the things we feel we aren’t. What we lack or perceive we lack. It makes us vulnerable and exposed, sometimes sad, but it’s also honest. Part of wellness, I believe, is acknowledging these “I’m not _____ enough” statements and facing the feelings they bring out in us. It’s taking the time to recognize the part they play in our lives and seek the assistance or understanding we need to address them. The “I’m not” statement doesn’t have to have the final say; it doesn’t have to be the whole story. I’m not sure if anyone will be able to relate…but just maybe they can.

October 2016 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

Posted on October 3, 2016 by John MSAA

MSAA is very proud to present our 2016-17 Art Showcase – celebrating the work of artists affected by multiple sclerosis (MS).

We have received many wonderful submissions from across the country and are delighted to share their work and their stories with you. Please visit our online gallery to view all of the new submissions.

Dani Red Hawk – Greenville, SC
Blood Moon

About the Artist:
“My art production is a bit improved over last year. If I could just beat away the fatigue I might really churn some art work out. However, while not always satisfied with each piece, I am most grateful for the completion.

It is such a joy to participate in the MSAA Art Showcase! To my fellow artists: You have brought much inspiration and enjoyment to not only me, but friends who have perused the website. I hope this past year has been a good (or good as can be expected with MS) one for you all.”
Read more

Do You Live Life in an MS “Bubble”?

Posted on September 30, 2016 by MultipleSclerosis.net

We recently shared an article with our MS community about living life in an MS ‘Bubble’. So many of our community members expressed feeling similarly to the author, Ashley, and feeling like they retreat to a mental hideaway when stress and depression of MS becomes too much to handle. Their responses were amazing, and we wanted to share some of them!

Preferring the “Bubble” to the Outside World

“The bubble is challenging sometimes, but it’s also safe. There are just some days where challenging myself isn’t worth the risk of falling, dropping things, etc. Trust me to know my limitations. I’m not lazy. I haven’t given up”

“Thank you for giving the perfect title to the place where most of us escape to from time to time as needed. People may not understand why we retreat to our “bubbles” but they are a safe place for us no explanation needed”

“I also live a lot of my time in a bubble…I sit with my back to everything, and play 1 level of 1 game for hours on my laptop. I tell my husband and son that I need to zone out for awhile and thankfully, they understand”

“I mentally prepare. No appointments, tell hubby having a recharge day, not doing anything. Sit, drink tea, watch lots of TV and/or read”

“Being trapped so much is why I’m on social media so much…I miss getting out, but I also really appreciate these online acquaintanceships”

Hiding in Your Bubble Instead of Engaging with Others

“This is just me. I definitely shut myself away in a bubble—90% of it was my illness, 10% was that I just found it hard to be around people. It’s hard to listen to everyone’s great lives when your own is crumbling around you”

“This is so true. I’m supposed to be meeting friends for lunch tomorrow, but my fatigue levels are terrible just now. I don’t want to cancel and I don’t want to let people down, but I also don’t want to fall asleep. It would just be easier to stay at home in my protective bubble”

“Sometimes people can be so cruel it makes me want to run home and stay there. I’m very comfortable by myself now”

Enjoying the Ability to Avoid Responsibilities and Daily Tasks

“Really! It can be challenging just thinking about moving or turning over in bed!”

“This is so right! People just don’t get how hard it is to do the simplest things. Like shower, get dressed, and go out. The first to get done. Maybe pj’s go back on and stay home is more like it”

“Thank you for saying it! Get so sick of people saying that going out will be ‘good for me’. NO it won’t! It will exhaust me and make me feel ill for days, sometimes weeks!”

“Hermits unite! Lol! People with NO energy don’t wanna move…let alone GO somewhere…”

“It’s just easier to stay at home than to get dressed which tires me out more than I can say”

“It’s just easier…I don’t even want to go on vacation”

Not everyone reported feeling safe and comfortable in their bubble, however. Some of our community members said they even try to fight the bubble as much as possible, and stay engaged and active. Let us know how you view or use your personal MS bubble, and how it affects your daily battle!

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