Wellness: It’s More Than Just Physical

This month on the MS Conversations blog we’ll be talking about different aspects of wellness and its importance and impact on various parts of one’s life. With it being MS Awareness Month, it’s good to be aware of and shine light on your own well-being and state of wellness, because this can encapsulate many diverse pieces. One aspect of wellness I wanted to discuss is occupational wellness. Now usually when we hear the term ‘wellness’ we think of our bodies and the physical side of this concept, and while this is a significant part, it’s not the only piece of the puzzle.

In talking about occupational wellness I realize that everyone’s situation is unique and the workforce may or may not be a current part of one’s day to day. This is not to say that the elements of occupational wellness can’t be relevant and applied to different situations or encounters experienced by all. Some of the factors related to this piece of wellness are important to consider for any facet of life, again because it circles back to your overall state of wellness. Some basic principles of occupational wellness include satisfaction, motivation, leisure, balance, inspiration and accomplishment. No matter if you’re currently a part of the workforce or engaged in other types of activities and routines, these components are an integral part of daily life to try to acquire to help achieve wellness.

Within the workforce it’s important to try to find work that you enjoy doing—that you’re passionate about and that keeps you interested and continuously learning. Being able to work well independently and with colleagues, and communicate often are essential pieces to this, in addition to being inspired by the work you do and wanting to constantly challenge yourself in it. Sometimes it’s easier said than done, but if you find something, whether it be in work, or another kind of activity or endeavor, make sure it’s something that means something to you. When you engage in a pursuit that has purpose for you and that you can get behind, that makes all the difference.

So again, occupational wellness is just one piece of the puzzle, but it has multiple factors that are easily transferable to other aspects of life and overall well-being. Whatever it is you do – stay engaged, focused, and most of all, inspired.

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March 2017 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

All-New Artists for MSAA’s 2017-2018 Art Showcase!

As part of MS Awareness Month, MSAA is very proud to present our 2017-2018 Art Showcase, celebrating the work of artists affected by 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:

Art Showcase Logo - 2017 Showcase 2017 Four Seasons Art Showcase Logo

As in the past, we will highlight one Artist of the Month throughout this year and share their artwork and their story.

Presenting MSAA’s Artist of the Month for March!

MSAA is very excited to present the first Artist of the Month for our 2017 Art Showcase:

March Artist of the Month:
Shana Stern – Los Angeles, CA
Shiver and Shake
Shana Stern - Shiver and Shake

About the Artist:
“I was a dancer, a writer, a mum, then a person with MS. The unrelenting symptoms and medications stripped everything which made me ‘me’. I was lost.

Then, I discovered painting. Unable to hold a paintbrush, I created my own unique method using my fingers and knuckles.

Those parts of me which felt lost thrive again. I don’t dance on my toes but with my hands. I don’t need words for stories just paints. My art helped me find joy, purpose and the strength and confidence to believe in myself again. I may have MS but MS does not have me.”
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I Am Free in the Water

By Simone Sanders

I was an unusually tall child. I stood at almost five feet tall by the age of six. So, naturally, my family began to speculate about my future athletic potential. My grandfather, who was an avid swimmer, decided that my lanky, thin frame would best be suited for swimming. And so my lessons began at seven years old. I remember I felt two things the very first time that I jumped into the pool: cold and free.

On land, I was quite awkward. Being much taller than the other kids left me at the end of the line most of the time. My feet and hands were too big to swap shoes and winter gloves with the other girls in the class and adults always seemed to notice my height first. But the very features that made me awkward on land made me graceful in the water. My big feet helped me swim faster than the other kids. My hands helped me pull water behind my body more efficiently and my height made me superior in a race to the finish line. In the water, I was a winner.

Fast forward twenty years and I still feel like a winner when I swim. Living with multiple sclerosis on land is rough. I walk slowly. My hands and feet are numb and tingling. My vision is blurred from optic neuritis. I am tired all of the time and my brain is sometimes in a fog. But I am free in the water. I don’t have to drag my body because my limbs are light. My hands and feet are both cold so the numbness and tingling stops. My blurred vision doesn’t matter because there is nothing to see in front of me but the finish line. And if I am tired, I float. In the pool I am not disabled. When I am swimming, I am enough.

In a race against MS, I win.

 

*If you are interested in learning more about using your own passion for swimming to help the MS community, please visit SwimForMS.org.

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Stories to Inspire

Since 2013, Shana Stern has actively participated in MSAA’s Art Showcase campaign, where people living with multiple sclerosis (MS) submit images of their talented artwork for display on our website gallery, promotional materials, and social media platforms. Shana’s bold and vibrant paintings reflect not just her artistry, but also her willingness to rise above the ongoing challenges of multiple sclerosis. Diagnosed with MS in 1999, Shana battles a variety of symptoms including extreme fatigue, pain, drop foot, and visual difficulties. In addition, Shana also has a loss of feeling in her right arm and fingers, which limits her ability to hold or grasp any small object – including a paint brush.

Frustrated by constantly dropping the brush and her inability to control the path of the paint, Shana was forced to once again work around the impact of MS and find a solution. While sitting on the floor, Shana discovered that she could balance the canvas on her knees and paint with her fingers and knuckles. By adapting to this new and unique style, Shana has regained control of her artistic abilities and found an even deeper connection to her love of painting. “Getting lost in the music I paint to and helping the colors dance across the canvas with my fingers has become my mental, spiritual, and emotional therapy,” said Shana. “We may get knocked down a bit and have to work a little harder, but we are capable of great things such as bringing beauty and art into the world! Yes, I have MS, but I am an artist.”

Not surprisingly, Shana’s son Walker Reynolds, 12, also shares a love for art and the ability to reach beyond the ordinary to accomplish the extraordinary. Inspired by his mother’s spirit and determination, Walker also wanted to get involved with MSAA and help make a difference. While on the MSAA website, Walker discovered our Swim for MS fundraising campaign, where volunteers can create their own swim activity, set a challenge goal, and collect pledges from family and friends to help support the organization’s programs and services.

As a self-described “fish,” Walker’s love of swimming and the ability to raise funds while having fun in the pool made for a perfect match. Despite being 11 years old at the time and having no prior fundraising experience, Walker dove right in and registered for Swim for MS. Starting in June 2016, Walker dedicated his summer to swimming one minute for each dollar donated, with the ambitious goal of raising $1,600. On his fundraising page, Walker stated: “My goal is to raise $1,600, which is $100 for each year my mom has struggled with MS. Daily she battles fatigue, numbness, pain and vision loss (which stinks when I need homework help!). Because her symptoms are ‘invisible’ I want to educate others and also inspire others like she inspires me!”

With Shana and Walker’s permission, MSAA began promoting their remarkable story to the local media and within the MSAA community. By summer’s end, with the support of their family, friends, and other contributors, Walker not only reached, but exceeded his goal and raised more than $1,800 to help support the MS community. As one can imagine, MSAA is extremely proud to recognize the amazing love and inspiration of Shana Stern and Walker Reynolds by honoring them at this year’s Improving Lives Benefit.

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Ask the Expert

Featuring Carrie Bruce, PhD, CCC-SLP
Sr Research Scientist, School of Interactive Computing
Georgia Institute of Technology
Member of MSAA’s Healthcare Advisory Council


Question:
Due to my MS, I have trouble speaking and writing at times. Is there anything out there to help me?

Answer: When communication skills are impacted by MS or related treatments, a person’s quality of life can be significantly impacted. Even minor changes in a person’s speech or written communication can make it difficult to function at work, stay in touch with family or friends, and manage conversations with people in the community. There are various strategies and products that can help with writing and speaking.  A quick check of catalog and online companies shows thousands of writing aids, keyboards, voice and speech aids, and other products for improving communication.  Several online resources offer unbiased listings of these types of assistive technology, including assistivetech.net and abledata.com. Additionally organizations such as ataporg.org operate lending libraries or equipment closets for these products. In most cases, these specialized products meet the particular need for which they were designed and make it easier for a person to communicate.

Another option is to leverage devices such as tablets and smartphones that have useful built-in features and the capability to run applications (apps) that make it easier to write, type, speak, listen, and read information. For a person who has a hard time writing, speech input can be used to compose emails or texts, dictate documents, make shopping or to-do lists, and search for information. Word prediction and completion can also be helpful in offering suggested words that a person can choose from instead of typing the whole word. If a person has difficulty speaking, email and text messaging can be alternatives to phone calls or face-to-face conversations. Some people also find it helpful to use Skype, Facetime, or other video/audio calling apps because the visual connection makes it possible for callers to see each other’s faces and share other viewable information (e.g., an object that is the topic of discussion). Additionally, tablets and smartphones are able to run apps that produce spoken messages based on what a person types or selects from pre-stored choices.

New features are constantly being developed for smartphones, tablets, and other devices that are potentially helpful in overcoming communication difficulties. Don’t worry about staying on top of the latest trends, just focus on finding a solution that works well for you. For more information and additional resources, please contact an MSAA Client Specialist at (800) 5320-7667, ext. 154.

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Loneliness, Being Alone, and MS

One of the MultipleSclerosis.net contributors, Cathy Chester, recently published an article about MS and the feelings of loneliness—and how they are different from just feeling alone.  Cathy’s words really resonated with our community members, and we received a lot of amazing feedback about how other people deal with feelings of loneliness and MS. Here’s what they had to say:

Enlisting the Support of Animal Companions

“My constant companions, my dogs, the best friends you could have. I am glad I have my dogs, they are far more loyal than any human being I’ve met in decades”

“I’m thinking of getting another dog. I had dogs all my life, I don’t have any dogs now, and I think they will be able to benefit me. Hopefully, this will add to curing my loneliness”

“I work, read, watch TV and spend time with my dog. He is almost 10 and he is the reason I fight for what I do have”

“The only thing that really helps is my dog. He’s older, so not as active. He gives me the strength to continue in this world. He makes the days better. I don’t go many places without him”

“I don’t mind being alone at home, in my own space with my cat”

So many of you talked about leaning on a furry companion when you’re feeling down.  Pets can provide many benefits when living with a chronic condition, so long as you consider the means required to take on a full-time furry friend!

Finding Hobbies that Soothe the Soul

“I keep my mind occupied with my hobbies. I love TV and movies. I love reading for hours and hours at a time”

“I can still see enough to read my kindle, I have TV, and although not a fan of daytime TV, I have lots of DVDs. It could be worse, I know. So you just keep plugging along as best as possible”

“I can relate, some days are rough, but I try to sew a little every morning, which was something I enjoyed when I was young”

“Playing games on my tablet keeps my mind occupied most of the time”

While not all of our favorite hobbies are possible all of the time, many of you reported finding new hobbies or amending old ones to fit your new lifestyle.  TV, puzzles, sewing, low-impact exercises like yoga or stretching, or even just watching funny YouTube videos can provide a distraction and pick-me-up when you need it the most.

Adjusting Your Outlook

“I truly believe that God expects me to do something that might help others cope. We did not have a support group, so I started one in my area and I am very active in our MS Walk each year”

“I do what my body allows me. I used to be very active, now I take my happiness from what I can do. I have a lot of naps now. I don’t stress over things, it’s no good for me”

“I still try to push myself to do everything I can as often as I can. I have found that a lot of times when I sit and plan out every step involved in going out, which we have to do within reason, I can become overwhelmed and staying home seems safer. However, if I take proper precautions and don’t overthink it, most of the time I end up feeling so much better that I went. It takes a lot of effort, but usually pays off”

While we can often feel like MS is an insurmountable journey, there are many of you who have shared small mental shifts that have led you to positive outcomes.  A full mindset revolution may not always be possible, or even beneficial all the time, but sometimes, slowly embracing change, even when everything seems bleak, could be a step in a new, and positive, direction.

No matter how you combat your loneliness, just remember, you are not alone.  Our community is always here for suggestions, or even just an ear to listen when you need. Please continue to share your experiences with MS-related loneliness with us, we love hearing from you!

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Symptoms that Effect Relationships – The Infestation of Fatigue

By Lauren Kovacs

Relationships can be with your spouse, sibling, friends, parents or any living thing really. Sadly, MS contaminates everyone and every thing. It is ever changing. There is usually one symptom that takes the cake.

For me, the winner is fatigue. I swear a cloud of sleepy juice stalks me. It lurks behind corners and lays on me like a wet blanket. It will mess with every relationship and can smother events.

I often have to skip functions because of fatigue. The way I deal with it does not always jive with a particular gathering. Routines with MS work well, but not every event works around your routine. MS is not always flexible. People are happy to let babies nap; however, full grown adults don’t seem to get that same level of understanding.

I take half my “awake” medicine in the morning, nap, and then take the other half. This usually helps, but caffeine gum and coffee are heavily leaned on too. Not the best options.

My spouse knows my routine. Most people very close to me know it. There are times when my routine can’t be followed. Boy Scouts, soccer games, and Taekwondo sometimes jump in the path of my routine. I bend MS, as much as I can, in those situations.

The biggest effect of this is guilt. I fight guilt over missing the Pinewood Derby because I had to be at Taekwondo in the morning. I have guilt because I had to miss a soccer game because I have to nap. My parents had to go instead. It is a ripple. Asking for help often rolls into guilt.

I have to rest and miss some things and rely on my spouse, parents, or whoever. I deal with this balancing act all the time. I try not to tip the scale. Guilt and pride are always battling.

The guilt of asking for help and the pride of doing it myself tip back and forth constantly. People get mad because you didn’t ask for help, but the guilt of being a burden is often worse.

We carry heavy and complex weights to the scale. You have to try and balance that scale.  Do the best you can. Others often do not see this part of MS. Getting those scales to balance can cause fatigue. Take a deep breath, do what you can, and have some chocolate.

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MSAA’s 2017 Improving Lives Benefit

The folks here at MSAA are getting ready for this year’s Improving Lives Benefit, where supporters from across the country join us for the night to celebrate the accomplishments of MSAA champions in the MS community.

This year, our honorees are:

  • Shana Stern (MSAA Art Showcase Artist) – Diagnosed with MS in 1999, Shana has adapted her style of painting and creating art, as new symptoms and challenges presented themselves.  She has been an active participant in our Art Showcase since 2013.
  • Walker Reynolds (Swim for MS Volunteer) – Inspired by his mother Shana Stern’s determination and creative spirit, Walker wanted to give back to the MS community and did so by raising more than $1,800 for MSAA as a Swim for MS Volunteer participant.
  • William Saunders (MSAA Board of Directors’ Treasurer & Founder of Meeteetse Advisors) – Having served as the MSAA Board of Directors’ Treasurer for 8 years, William has been instrumental in helping the organization improve more lives in the MS community by supporting MSAA’s mission.

MSAA’s Improving Lives Benefit will be held on Thursday, March 30, 2017 in Philadelphia, PA at The Downtown Club.  If you are interested in attending, learn more at support.mymsaa.org/benefit.

While not everyone is able to make it to Philadelphia to help us honor these MSAA champions, anyone can participate in our national online auction.  Information on auction packages, which include a variety of starting bids, is available here.

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President’s Day at MSAA

Please note that MSAA’s offices will be closed on Monday, February 20, 2017 in observance of President’s Day.

The offices will reopen on Tuesday, February 21, 2017 at 8:30 am.

 

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Invisible MS Symptoms and How They Affect Relationships – Even When They’re Subtle

By Stacie Prada

Being diagnosed with and living with a chronic incurable condition can test and change every relationship a person holds dear. Invisible symptoms are especially tricky. I know after my Multiple Sclerosis diagnosis I didn’t want to burden others with my problems. Just because I had a life altering condition, I didn’t think it should affect everyone else.

One of the adult life lessons I’ve learned is that people who care about us WANT to help. Withholding our struggles increases stress on our part and creates a feeling of being pushed away on theirs. They hate feeling helpless. We do too, but we have more information at any point than they do.  Think about when you’re driving a car in inclement weather compared to when someone else is driving and you’re in the passenger seat.  When you’re driving, you know whether you have control of the vehicle or not. You know how well the brakes work, how alert you are, and how long it will take you to stop if something happens. A passenger has little information other than what they see and feel, and they have to rely on their trust in you. Having MS is like being the driver, and our friends are the passengers when it involves our health.

While their intentions to try to fix our problems, make us feel better, or help in any way they can may sometimes feel pushy and cause conflict, working through the unknown and developing a new relationship dynamic is well worth the effort. All of the relationships I still have today are intensely richer for the awkward conversations we’ve stuck with and the commitment we’ve made to interacting differently than we did before I was diagnosed.

Invisible symptoms like fatigue, pain, numbness, balance problems, bladder and bowel problems, cognitive issues and heat sensitivity can affect how we feel even when we think we’ve got it all under control. There are times when I think I’m doing fine or faking it well, and dear friends will say they notice I’m not feeling well. It’s especially impressive how well people know us when symptoms are subtle and we may not even realize we don’t feel as well as usual. For me I notice that my patience lessens and I have a tendency to feel more pressure from people by what they say.

I asked two dear friends what they had to say on this topic, and one said that what hurts her feelings is when I hold back and distance myself. I can justify it by saying I don’t want to worry her or bother her, but it’s more likely that I don’t feel like admitting I’m having an issue or that I’m not up for hearing advice in that moment. One skill I’ve tried to beef up is to recognize when I’m feeling pressure or don’t want to talk about something anymore and say so. I’ve noticed it’s harder to do this the longer I wait to say something, And while saying I’m not up for discussing something in that moment may hurt their feelings, I think it’s better than continuing to suffer silently. The other skill I’m working on is to tell them that while I’m not up for it in that moment that I do appreciate their concern and perspective. I also want to start saying that I think I can continue the conversation another time.

Being self-aware, communicating consciously and not reactively, and considering other people’s perspectives has made living and loving well with MS possible for me. It’s definitely improved my relationships, reduced my stress level and contributed to a life I love.

*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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