Wellness and MS

By Lisa Scroggins

Before I had to start using a walker to get around, I was still working full time, plus I had an hour one-way commute to work. Honestly, I worked far more than the 40 hours a week that counts as full time. But in those days, I used to joke that my healthcare was an additional part time job, in itself. Between going to the clinic every thirty days for an infusion, and handling refills for other medications, as well as the other “normal” things that everyone has to do (teeth cleaning, physicals, mammograms, etc.), it took up too much time, in my opinion.

I had it so easy! Now, it really is a kind of job. After I stopped working, almost three years ago, I told myself that I would dedicate myself to “rehab.” With a lot of other life details that intervened, I didn’t do the best job of rehabbing on my own. There was a little bit of denial; I believe that deep down, I thought maybe without the stress of my job and commute, I would just naturally “get better.” Probably, this won’t be a shock to anyone, but that’s not what happens! It took me awhile to come to terms with my new and unwelcome status. Much of the turmoil surrounding my leaving the workforce, and the other big changes that took place in our lives has calmed and life feels a little bit stable now. And so, my new job/work of rehab has begun in earnest.

I have come to embrace a sort of DIY wellness attitude, as I no longer enjoy a “yes, but” condition, as in “Yes, I have this disease called MS, BUT I can still work, and it is invisible to most people.” It’s plain to see that I’m disabled. After I left my job, I spent a good year and a half traveling to an MS specialty clinic that’s within a day’s drive for me, hoping that maybe there was a “holy grail” that the ordinary neurologist wasn’t hip to. There isn’t. I did learn a lot that I hadn’t known before, and I also learned a hard lesson: not all neurologists, even the specialists, have a decent bedside manner. I had a gut reaction to the specialist  the very first time I saw her, but told myself that as long as she might be able to help me, I shouldn’t worry about the touchy-feely part. I know better, and I’m not sure why I didn’t trust my gut, something I always told my kids to do. I’ve stopped going to that doctor, since her demeanor was so objectionable to me. While I may return to that clinic, it will be to a different neurologist. I’ve empowered myself to only seek out assistance from doctors who seem to care about me, something paramount for mental wellness.

Nowadays, I spend a lot of time reading and researching everything from up-and-coming medications to figuring out new and different ways to exercise. One new issue for me is pain. Except for the occasional flashpoint of trigeminal neuralgia, pain wasn’t an issue for me. In retrospect, this new symptom first started to occur about a year and a half before I stopped working, and if I hadn’t made a note of it, I wouldn’t have realized how it sneaked up on me. What’s worse is that it has continued to develop and progress. In some online MS groups, a lot of people with MS do have pain. Lots of them take powerful drugs to try to control it. As bad as my back hurts at times, I do not want to use a pain-killer, and would prefer not to add any more drugs at all. I have learned that when the pain seems especially bad, what helps me the most is to apply a cold pack. I tried heating pads, and those sticky thermal pads that you can buy in stores. My husband bought a pad that can be used for warmth or cold. On a whim, we tried putting it in the freezer then inserting it in its carrier and wearing it so that it covers my shoulders and upper back. For me, it’s far more effective than any of the heat methods I tried. I’ve gotten so smart that I no longer wait until the pain is excruciating, but actually try to ward it off. I know that my sarcastic attitude doesn’t always help me, but really, why on earth do I beat myself up for not knowing? What matters is that I found some relief. I try to be open to new ways, even if I don’t believe they will help. There are other approaches to managing pain, too. I take a lot more NSAIDS than I used to (usually Aleve or ibuprofen) but have deemed it necessary. I even tried some homeopathic stuff, but didn’t notice any affect at all. What does seem to help is sticking to a schedule of exercise. I know that it’s vital, but it remains a challenge to structure my day around that. The effort to manage my time so that exercise is a priority, yet doesn’t prevent me from doing other things remains a struggle. For example, it’s important to do food preparation, which involves deciding what to eat, making the shopping lists, planning the menus, and actually preparing the food, all of which used to be easy. I’m still learning how to structure my days so I have built-in rest times between tasks, and preventing pain and fatigue that destroy the rest of the day.

The other thing that really is phenomenal is the smorgasbord of information that’s available to everyone, including people with MS: the internet. It’s friend and foe both, and if you’ve dipped your toe into it at all, it’s easy to get overwhelmed. I have found a few resources that I turn to again and again, because I find them to be chock-full of information. My favorite online tool has been “MS News and Views,” hosted by a patient with MS. I am not a fan of watching videos on my smart phone or any other way when it comes to MS; I just prefer to read rather than watch. But what I like about this resource is:

  1. It’s run by a fellow patient and,
  2. Information is available in many ways: MSVN channel on YouTube, with recordings of presentations, E-newsletter, Blog-Talk Radio series archive, a Webinar Series, and much more.  The website is: www.msviews.org. The YouTube channel is called MSViewsandNews Learning Channel. There are presentations about exercise adaptations, nutrition, MRI’s, and medication. I have learned to love watching videos and this website is the reason! Some of the videos are almost as good as a visit to a doctor, in terms of the information and education made available.

Wellness in the context of a chronic, life-long disease may seem oxymoronic, but it’s not. I challenge you to take back some control and avail yourselves of a plethora of self-management.


What’s the reference point?

So this past month we’ve been talking about various issues related to the topic of wellness in our MS Conversations, but what really is wellness? And how do you know if you’re truly living ‘well?’ What is the guiding point to reference when trying to determine this? All good questions, but not ones that necessarily produce easy, one word answers. Wellness can encapsulate many different factors, and its outcome can definitely be subjective at times according to each person’s view of it. It can be defined in very unique terms and the way each person lives their life can differ because of this. That’s not to say that one person’s take on wellness is better over another, it’s just different and relative to their own needs.

There are many components to the notion of wellness and that’s why its possibilities are abundant. Capturing not only the physical piece, but the emotional, spiritual, social, and intellectual factors too, also contribute to the vast definition of what wellness means for each person. It’s not measured by just one part but by many, and who’s to say that if a person focuses on one piece of it at a time that they’re not still living ‘well’ in their own understanding of it. That’s why it’s so hard to quantify exactly what the picture perfect frame of wellness is; everyone is different and lives by distinct belief systems and practices. Because the concept of wellness can change so subjectively, it’s challenging to try and identify an exact point of reference for it. So instead, ask yourself questions that gauge your own well-being and include things that are most important to you—health, spirit, relationships, values, beliefs, the list can go on…



Wellness Covers A Wide Field

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

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

A Panda Named Roni - Susan Russo

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 - Paula Breiner

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

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

motivator-sf16-spreadRead 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

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!

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.

marketplace-enrollment-periodAs 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 15th to ensure coverage beginning January 1st.

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.







Columbus Day

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!

A week from now Medicare’s open enrollment insurance period will begin, running from October 15th until December 7th. 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.

Open Enrollment Period 2016Medicare 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:

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!







I’m Not Ready

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.