Meet the Board

Posted on February 28, 2018 by MSAA

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 new 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 – Eric Bossard and Steve Bruneau

Eric Bossard
Member of the Audit and Finance Committee, Communications and Marketing Committee, and Development Committee

Professional Background: Eric Bossard founded Commonwealth Insurance Advantage in 2016 in an effort to expand his outsourced risk management and insurance expertise globally. In addition, he co-founded Archway Insurance in 2002 as an outsource risk manager, which placed insurance coverage on behalf of brokers nationwide. In 2006, Mr. Bossard was instrumental in the acquisition of Alliance National Insurance Company (formally UMI Insurance Company), a New York domiciled property and casualty insurance company where he originally served as president and chief operating officer. He is currently one of the owners.

Steve Bruneau
Treasurer and Chair of the Audit and Finance Committee

Professional Background: Steve Bruneau is a product-development expert and business leader who draws upon his engineering, information-technology (IT), and business skills to develop award-winning, patented products and services that have jump-started businesses ranging from startups, to Fortune 500 companies, to programs for the United States Military. Mr. Bruneau is presently the Chief Operating Officer for Pulsar Informatics Inc. in Philadelphia, Pennsylvania. Steve also presently serves as the Business Manager for Bruneau Family Care, P.C. in Mount Laurel, New Jersey.

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

Bossard: “Former chair and current board member Jim Anderson and I are longtime friends. I was in the process of making a professional change and he was aware that an integral part of this change was to become more involved volunteering. When I met with newly elected president Gina Ross-Murdoch she displayed a level of enthusiasm rarely seen in the nonprofit arena. This organization truly demonstrates there is more to life than the moment we all live in.”

Bruneau: “From the time I was young I have been involved in service organizations. I came from a modest family and appreciated the help that we got from so many places growing up that continuing to pay it forward is not only the right thing to do, but it is very rewarding. When my kids aged out of youth sports and the local school system, I wanted to find other organizations where I can apply my energy to do good things…and I stumbled across the MSAA in all seriousness.

My wife is a primary care physician and we have our own medical practice. There are many patients who need assistance in one way or another and when I came across the MSAA and its mission of helping people today, it struck a chord with me that I couldn’t help but get excited about.”

What are your goals as an MSAA Board Member?

Bossard: “I am dedicated to expanding the awareness of what we as an organization provide to the MS Community which is to Improve as many Lives as we can Today…be it cooling vest, our help line or covering the cost of an MRI. In addition, I am eager to help develop new and exciting fund-raising activities for the organization.”

Bruneau: “I want to bring my professional experience and talents to the team to help the organization grow and expand its value to the MS community. MSAA has such a tremendous, dedicated staff of people who work tirelessly to help those with MS get the support and services they need and with my IT background, I think I can help evolve our internal and customer facing systems to ease the burden of providing our services while increasing the impact, responsiveness, and value to those with MS and their caregivers.”

Editor’s Note: MSAA is extremely proud and honored to enlist the support of Eric Bossard, Steve Bruneau 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 Eric and Steve!

Always Adjusting to Life with MS

Posted on February 26, 2018 by MultipleSclerosis.net

Recently, one of our community contributors, Nicole, wrote a thought-provoking, and emotionally charged piece titled, “Still Learning How to Live with MS.” The title of the article rings loud and true to her message within it. Nicole outlines a Sunday morning where she feels on top of the world. She feels an extra kick of energy, and a desire to take on the day. She adds more chores and errands to her to-do list than normal, and although she is questioned on this decision by her husband, she continues on with her grand plan. Throughout the day, Nicole feels great, but by early evening, she feels weariness set in. Although this is a common pattern for her at this time of day, this fatigue is heavier and consumes her more and more as the minutes tick by. She is so weary, she is unable to eat on her own, nor get fully ready for bed.

She reflects on this day and realizes that although she has been living with MS for almost 18 years, there are still days that get away from her and bring unexpected tribulations. She recognizes that, although she hates her MS, she still needs to respect its limitations and continue to learn from it. Especially when it comes to slowing things down, asking for help, and taking a break—despite what her short-term energy levels feel like. After this article was posted, comments poured in from across our community, and it became apparent that Nicole was far from being alone in her experience. Some of the sentiments shared by our community members are collected and shared below.

Always battling the fatigue

Many of our members weighed in on their constant battle with fatigue, and how although it is a constant, it can still be incredibly frustrating and knock them off of their feet (both literally and figuratively).

“I fight with myself every day. I expect myself to do more and be more than I can do or be. I never get my stuff done all the way. My fatigue is horrendous. Sometimes I get so tired, I just have to nap because I can’t do any more that day or moment and if I try to stay up, sleep overpowers me. I hate asking for help too or needing it. I feel helpless.”

“The least little thing wears me out. Tried to play with my great grandson who is 2 and a half, and it just about did me in. I was so exhausted and hurting so bad that I went to bed at 7:00pm.”

“You hit the ‘brick wall.’ Happens to me all the time. Need at least three days to recover completely.”

“It’s still difficult for others to understand what happens to me if I don’t rest…lots. The amount of energy that is needed to push myself through a day is exhausting. I explain that I can manage some things, but not all things. I have to keep reminding them of this spms that takes my strength and makes my life very different from theirs. Most do not understand the utter exhaustion.”

“So true and so hard to restrict what you do when you feel like you can do it, but pay hard for it later.”

“It’s hard being an “A” person in a “B” body.”

Constantly trying to take control when energy is high and forgetting limitations

So many of the comments shared with us revolved around trying to capitalize when energy bursts strike. Although this may be a rare occurrence, some of our members feel tempted to take full advantage of them, only to be back to extreme fatigue and pain later. Balancing energy and the desire to get things done with true physical limitations is a constant learning curve.

“Yes, it is hard to pace yourself. I have had MS formally since 1990. I try not to overdo it, but when I am feeling good, I forget and try to get everything done. We have to remember that we will pay for it later. Keep going and don’t give up!”

“Key word being ‘forget.’ Usually, I start each day with positive thoughts and energy. I can do anything until I can’t. Then I remember. Each day ends the same with fatigue and pain. And then, a new day is here to repeat itself. I do this ‘forget’ thing all the time. I need to pin a list of ‘don’ts’ on my shirt.”

“‘Sometimes I want to be like everybody else’ is what gets me in trouble every time. After 10 years you’d think I would know better, but sometimes it’s worth trying. It’s getting harder thought to push myself. I shut down quicker than I used to and just can’t do it some days no matter how much I want to.”

“Thanks for reminding me again to respect my limitations. I also forget. Your thoughts are timely because I was just saying how I’m tired of not doing much. I always want to do more and not plan so much for fear of exhausting my body to only suffer another exacerbation! My only advice to myself is to try to appreciate what I can do and find goodness in those accomplishments, as few as they may be sometimes. There is so much beauty in enjoying little things. I try to tell myself, when you slow down, you see more! Hang in there, and know you’re not alone.”

“As others, I can relate. I have learned to limit my chore or errand list and I now even literally write the word REST on my lists, so I don’t forget to take the time out. I think the still learning how to live with MS is an ongoing process for us.”

Do you feel as though you’re constantly learning from your MS? Whether it’s learning to battle fatigue, remembering and respecting limitations, or a completely different experience we didn’t mention, share with us if or how your relationship with MS is evolving.

What’s New?

Posted on February 23, 2018 by MSAA

By Lauren Kovacs

I know this is very hard. Fear is paralyzing, even without MS. You wonder why you didn’t wear your brown pants when trying something new. I am not suggesting Bungee jumping in your wheelchair or am I?

Branch out a bit. I skied the Swiss Alps, was a gymnast, a college cheerleader and hiked the Highlands of Scotland. Physical freedom may be way out of reach now for most of us now. Wheelchair wheels don’t do well in mud and sheep poop. Do something small instead. Be adventurous. My adventurous thing is leaving the house wearing regular jeans.

Try something new to you. People may not be impressed that you can do something, but you might. When I rode horses, for therapy, they had me ride backwards to work other muscles. I hated it and was terrified. But, not many people have seen the southbound end of a horse while it walked around the ring. Try. You may surprise yourself.

I have terrible hand coordination. I got a Knifty Knitter hoop and made hats. Takes me days, but when I am done I know I accomplished something. Others may not appreciate your hard work, but you know. Maybe you need to see and touch your accomplishments.

Pick a new thing and try it. I tried painting with my non-dominant hand. I used to be a great painter and it was so bad my kids could not even tell what it was. I no longer paint, but I tried it.

Maybe try a new thing when no one is around. I tried painting when the kids were at school. It was an epic fail, but the important thing is to try. It was a horse in a field and my kids thought it was a rock and I had to work hard to even get them to guess.

Try things that are completely new. Painting with my non-dominant hand was a disaster. I saw the mess on paper, when I was trying something I used to be good at. It just pointed out how MS has taken everything. Don’t set yourself up for disappointment.

Now, if an opportunity involves something very new, I try it. Ok, bungee jumping will never happen. I stay away from what I used to be able to do. Set yourself up for success. Trying what you used to do might cause failure. Trying something totally new might be your thing.

You may find you are awesome at fly-fishing, for example. What you used to shy away from or dismiss could be a great activity. Maybe you can pick out great lures for fly-fishing. Playing guitar with your toes might be for you.

Gender norms might need to be crossed. I know a guy who took up knitting. Be brave. It is like when my mom made me eat Lima beans, when I was a kid. I still hate Lima beans. Don’t knock it until you try it. Feel free to knock it out, if it is not for you.

Benefits of Yoga

Posted on February 21, 2018 by MSAA

Attempting to try a new exercise routine can feel intimidating, whether it is something you have thought about trying for years, or an impulsive decision. It’s not always easy, but stepping out of your comfort zone can be good for your body and keep your muscles from getting too complacent. One exercise routine that is gaining popularity is yoga.

An estimated 20 million Americans practice some form of yoga for exercise, and more than a third of those people are fairly new to the practice. Yoga is a gentler form of exercise that focuses on stretching and breathing, which can offer a number of benefits including increased flexibility and improved respiration.

There are many different types of yoga available for a range of experience and flexibility levels, as well as yoga practices designed for people who may have limited mobility due to a chronic illness, like multiple sclerosis. Many traditional yoga poses can be adapted to be performed in a seated position on a chair or laying on a bed, rather than sitting or laying on the floor. Yoga can offer specific benefits to individuals with MS by helping:

Reduce fatigue
Reduce spasticity
Improve range of motion
Improve balance

Yoga may not be for everyone, but if you are looking for something new to try as a way to stretch your muscles and get some exercise, look into yoga as a possibility*. If you are interested in learning more about yoga designed for people who have MS, check out our story from the Winter/Spring 2008 edition of The Motivator, Health and Wellness: Enjoying the Benefits of Yoga.

*As with any form of exercise, be sure to check with your physician before you begin a new workout routine.

Trying New Things: The Rewards Usually Outweigh the Risk

Posted on February 16, 2018 by MSAA

By Stacie Prada

I’m realizing I have a pattern of planning ambitious goals or adventures when I’m feeling my lowest. My guess is that it helps me to look forward to something. It’s a way for me to get outside of my head where I’m thinking about how tough things can be.

It’s reasonable to limit activities when you have health issues. Addressing nutrition, rest, fitness and overall well-being is a full-time job. Just the idea of adding a new activity or event to my schedule can create anxiety for what it will take to make it happen.

Doing things outside of my routine usually involves budgeting my energy leading up to and following the event. The lure of staying home and resting is comforting, and conceding to that tendency isn’t a bad decision. It’s often easier and causes less conflict with people who care about us to stick to activities that clearly help our physical health. They may think, and we may agree, that we may be compromising our health and taxing our bodies by pushing ourselves.

I think the key to why this matters is that having a chronic illness can make a person feel weak, powerless and like a victim. Feeling like that is depressing. Setting goals or doing things outside of our comfort zone creates a feeling of adventure and accomplishment. It adds to a sense of strength and empowerment. This is one area of life where I think one can help offset the other. It’s hard to feel powerless when you’re kicking butt doing something you’ve never done before.

It was at a very low point in my health that I found a Groupon for doing trapeze (read about it here) and decided to give it a shot. I bought it and planned going with a friend. Assuming I would feel better at some point and planning the excursion was something that inspired me. It also distracted me from how I was feeling at the time. I went on to do the trapeze class, love it, and go back many times. I tried it, succeeded, and built up my physical confidence.

Conversely, I don’t even need to succeed by someone else’s standards to feel empowerment. There are times when we find ourselves in a situation where we can take the safe route or we can jump in to a new experience. I once endured an uncomfortable and socially horrifying event at a professional conference dinner, and I now think of it as an achievement for me. Picture this: I enter a hotel ballroom where only two tables have people sitting at them. One table with ten place-settings is full. The other has eight twenty-year-old Japanese students. With two seats open at that table, I embraced the moment and asked them if I could sit with them. One of the young men said I could. I sat down, and then the other tables filled up around us. I quickly realized I was now sitting at a table with eight Japanese men where only one of them spoke English. I don’t speak any Japanese. I conversed with the one young man about professional topics to find some commonality. While I did, it was clear the rest of the men were commenting about me and laughing at me. They weren’t subtle, and I’m positive I wasn’t being paranoid. I found myself in a situation where I felt I needed to stay gracious and endure. It was a sit-down dinner, and I felt stuck until dessert had been served and cleared. At an opportune moment, I thanked them for welcoming me and jumped to an empty chair at an adjacent table. My guess is the time at that table was only about 30 minutes, but it felt like hours.

Having dinner with men I didn’t know, where we didn’t speak the same language, and where I was being laughed at was a difficult and social disaster. But I hold it up as a benchmark experience. It’s a figurative badge of honor for me to believe that if I can experience that, then I can probably survive any social interaction. It helped me feel a lot more confident, and that’s a huge deal given how shy and insecure I used to be.

This experience helped me build my social and emotional confidence. Trying trapeze helped me with my physical confidence. Both of them reduce the chance that someday I’ll have regrets for what I didn’t try. Any chance we have to push ourselves outside our comfort zone for things that seem intriguing will have a reward. That reward may be for accomplishing it well, and it may be for just enduring and surviving. Either way, we win.

*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/

Something Old…. Something New

Posted on February 14, 2018 by Ro Washington

Trying new things can be difficult. It means venturing outside of our comfort zones and, in some cases, putting ourselves in situations that can be both challenging and to be honest, frightening. But charting a course for a new terrain can also mean that we find something that we love that we would have never found otherwise or learning something about ourselves we didn’t know or just being able to check something off our list to say we tried it. No, we don’t need to try everything there is in the world… stay away from beets, they’re kinda gross and I don’t recommend getting into legal trouble, I hear it’s no fun… but in all seriousness when we take a chance outside of our usual circle we may find something that surprises us.

This year I’ve made a commitment to try something new every month. It doesn’t have to be huge, overly flashy or very expensive, but I want to continue to push myself past what I usually do and tap into somethings I have not before. This past month (I know it’s February but I haven’t done my new thing this month so go with me) the new thing I gave a try was acupuncture! Now before the Trypanophobics (having a fear of needles) in the audience run for the hills, hear me out. Acupuncture has been practiced by many cultures, often specifically associated with Chinese culture, for thousands of years. It’s a form of healing that yes, does utilize needles. But before you go grab your sewing kit and try to cure your own headache know that to become a trained acupuncturist is not just learning to not make people bleed with thin pieces of medal. It takes a study of the human body, pressure points, muscles, nerves, an awareness of the interconnectivity of pain and stimuli and a host of other factors to be able to safely and effectively administer acupuncture. I’ve had it on my list of things to try for some time and decided, heck this was the time. I did my do-diligence and researched clinics in my area and came across one in my very own neighborhood with trained and certified acupuncturist…. And away I went.

Now even though I wanted to try this out, I was still nervous which I’m sure didn’t help the strained muscles I was trying to ease to begin with. But here’s the thing… it was a great experience. The clinic, which looked more like a message parlor was welcoming and calming and the process… was painless. Well to be honest there was a pinch or two in the beginning but less than when you get your flu shot. The session was 30 minutes and honestly after 5, I forgot the needles were even there and fell asleep…that’s how relaxing it was. Now the question I’m sure somebody is asking “yeah but did it work?” Yes… and no. Immediately after I had the needles removed by my acupuncturist the pain felt eased but not gone. This I learned was normal. Similar to most things it didn’t take one day for the muscles to tense and become soar so it wouldn’t be reversed in just one session. The acupuncturist explained to me that most people come a few times within the first week or two to have their procedure done and then the spacing between visits becomes greater. Not what I was expecting, mostly because like most of you I live in a world that readily expects some things to happen quickly and on my schedule. But it did help, I woke up the next day and the treated muscles did feel less taught than usual.

So is acupuncture right for you? It might be. If you have thought about it or are interested in it I would encourage you to seek out a clinic and acupuncturist that’s right for you. Is it worth a try, definitely. It doesn’t involve medication or overly complicated procedures and can be administered in as little as 30 minutes. Is it costly, the cost is dependent on the clinic but most of the ones I found in my area worked on a sliding scale according to income. Do be sure to do your research first, ask questions of the team regarding licensing, training and to walk you thru the steps. If you are still nervous go visit the clinic. I personally enjoyed the experience and have scheduled sessions at a regular interval which I’m also enjoying. It’s something new and as a bonus is something good for me. Happy venturing!!

Valentine’s Day Puppy Chow (for humans)

Posted on February 12, 2018 by Melissa Young

Valentine’s Day Puppy Chow is the perfect treat for the holiday. An amazing combination of salty and sweet! With a few simple ingredients you can munch on this fun sweet treat right away.

This recipe is so easy and you only need a few ingredients.

Ingredients:

Chex Mix Cereal (any variety)
White chocolate chips – 1 package
Powdered Sugar – about 1 cup
Mini Pretzels Twists
M&Ms – Valentine colors
(2) Gallon-sized Plastic Bags
Parchment paper

Directions:

Grab a cookie sheet and line it with parchment paper. Set it aside. Next, you’ll divide your Chex Mix between two plastic bags and set aside.
Now, melt your white chocolate in the microwave for about 20 seconds, mix and heat again until melted.
Pour the candy in the plastic bags and toss/shake around to coat all the cereal.
Add your powdered sugar and toss that to cover the candy coated cereal pieces.
Now, add in your pretzels and mix.
Finally, place it on your cookie sheet and sprinkle your red, pink & white M&Ms.

Happy Valentines’ Day!

Let Today Be the Start of Something New

Posted on February 9, 2018 by MSAA

By Penelope Conway

I woke up this morning yet again to the reality of multiple sclerosis. Sometimes it feels like I’m stuck in the movie Groundhog Day with Bill Murray. Do you remember that movie? Every morning the alarm clock would go off and the same day would begin…over and over and over.

I don’t know when it started for me, but day after day my life became a blend of naps, computer screens, brain fog moments and doctor appointments. Trying something new just didn’t seem to fit into the mix of things.

From the outside everything in my world looked fine. I had a roof over my head, food in my pantry, an internet connection to get online with and friends both near and far, but what couldn’t be seen were the limitations I began having because of MS and the stresses that came with those limitations.

I failed at everything I tried to do. I had a hard time clipping my own fingernails, couldn’t drive safely even to the corner store, ran into walls that weren’t even in my way, tripped on air, forgot appointments and dropped everything I got my hands on. Talk about depressing…ugh! No matter how hard I tried, I couldn’t find the stop button for the out of control spinning chaos that surrounded me.

If someone approached me with even the thought of getting out and doing something new, at that time in my life I had become so defeated that I couldn’t hear what they were saying and would lash out at them for even suggesting such a thing. All I could see were the things I couldn’t do. Those were not some of my proudest moments, but great friends help you get through the rough patches in life, and thankfully I have great friends.

I call them my Push Coaches. They pushed me to see past my limitations and helped me to see that there is always more than one way to doing something. I discovered that the only real limitations I had were the ones I created for myself and realized that trying new things actually made me happier in life.

As weird as it may sound, stepping out from my daily routine brought excitement to my day and became a welcomed change of pace to the day-in and day-out rut I had gotten myself into.

Sure, my legs may not work well anymore, my hands may fumble with everything I get a hold of, and vertigo may keep me from seeing straight, but those things should never stop me from trying something new. I was determined to try something new at least once a day.

At first I did simple things like taking a different route to the grocery store or wearing crazy colored socks. Those simple changes to my day surprisingly made me smile more. After a short period of time I found myself seeking out other things to try like community art classes and volunteering at the local hospital. I began looking forward to the changes in my day.

It takes a lot of courage to get out there and do something new. If I could be your Push Coach today, I would encourage you to step out from your daily routine and try something new. Change your hair color, try a new tea flavor, join a book of the month club, enroll in cooking classes…just get out there and try something new.

Don’t let MS keep you from having new and exciting adventures in life. Besides, you just might surprise yourself and find a hidden talent you didn’t even know existed.

*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.

What is it that stops us?

Posted on February 7, 2018 by Angel Blair

So I don’t think I’m alone when I say it scares me to try new things. The idea of doing something novel and different is terrifying sometimes and causes all sorts of wonky feelings. I know it’s important to try to experience new things and to step outside of your comfort zone once in a while, but this often elicits feelings of anxiety and stress, so why is that? What is it that stops us from trying new things and reaching beyond what we’re used to doing? It can be a gamut of things, but what is it specifically?

For me I think the main issue is the fear of failure. I’m not too naïve to believe that everything is and has to be done perfectly, but it’s always been an innate expectation for me to do the things that I know well, and to thus shy away from the unknown for fear that it won’t be done right or perfectly. This may be the case for others too; the idea that we won’t succeed at or conquer something, that feelings of inadequacy will abound and really derail us from trying things again. The unknown of new things can be frightening, it’s a normal and reactive response for many to not want to try because we don’t know what’s on the other side. But you also have to think, if no one ever tried anything new, we wouldn’t have all of the wonderful things we have today. Innovations, technology, art, and music were new to its creators and inventors, and without them taking the leaps they had and diving into the unknown, we’d be lost without these treasures.

It’s surely not easy trying new things – nothing ever is that results in success and beauty and grace. But isn’t it worth it, to try that one new thing to quiet expectations and norms? To settle the fears that taint the mind and to make the decision that if you attempt something different and it doesn’t work out, that that’s ok? Fear can be overwhelming and deafening and can interfere with bold choices at times, but it’s our own insecurities that often interfere with achievement. We have to be kind and patient with ourselves long enough to experience the new and see what could have been. So what will you try?

National Love Your Pet Day

Posted on February 5, 2018 by MSAA

Dogs, cats, rabbits, hamsters, fish – no matter the species, pets serve as great companions!

Some pets act as service animals, performing everyday tasks that may be difficult for people living with disabilities. Other animals serve as emotional support, lending an ear whenever you’re feeling down and just want someone to talk to. No matter how you feel your pet supports you, one thing remains clear – pets are always willing to give unconditional love no matter the circumstance.

February 20^th is recognized as National Love Your Pet Day, and MSAA would like to help you share your special relationship with your favorite animal!

Please share a picture of your pet with us by adding a comment on the blog or our social media pages. Additionally, feel free to tag us (@msassociation) in a separate post about your pet on your personal social media. We’ll collect all of your shared photos over the next few weeks, and then we’ll post a photo collage on our social media accounts on February 20^th in honor of National Love Your Pet Day.

We can’t wait to see your pet photos and hear more about your furry friends!

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