Stories to Inspire: MS Client Swims for MS and More

By Peter Damiri

“I actually hugged my doctor when I found out I had MS,” explained Simone Sanders, 29, of Seaside, California. “After having so many symptoms for so long, I was relieved they found out what was wrong with me and that something could be done to help. But then, I was also frustrated that I had a chronic illness that had no cure.”

Simone struggled with a myriad of unexplained medical issues since her early 20s. Following the onset of several severe exacerbations, she underwent MRI testing and received the official diagnosis of multiple sclerosis.

“I lost my vision, couldn’t walk, and lost my job,” recalled Simone. “I couldn’t drive or go anywhere, wasn’t active, and became very depressed. But I found support from MSAA as well as talking with others who have MS. They pulled me out of my depression and helped me realize that I can accept my diagnosis of MS but do not have to be crippled by it.”

Now married to an Airman First Class in the United States Airforce and looking to start a family, Simone has since regained the majority of her vision and ability to walk, but still struggles with daily fatigue and a variety of periodic MS symptoms. However, rather than focusing on the negative, Simone maintains a powerful fighting spirit as she strives to improve her physical and emotional wellbeing through diet, exercise and a deep, personal commitment to help others with MS.

“I try to be as active as I can, running 5K charity races with my cooling vest from MSAA – which has been a lifesaver. I’m always looking for new ways to help the MS community and was happy to find Swim for MS,” said Simone.

“I had a passion for swimming ever since I was eight-years-old and was really good at it. After my diagnosis, it made sense to go back to swimming and exercising in the water, especially when I had access to a pool. Then when I heard about Swim for MS I said, this really fits with my interests and passion and it’s for a good cause for people like me.”

With the goals of swimming 1,000 laps in three months and raising $1,000 for MSAA, Simone began her Swim for MS challenge in late March. She bases her ambitious goal on her average swim of 10 laps per day, but also recognizes this can fluctuate due to her struggles with fatigue and other MS factors.

“Some days are really bad days and even some weeks are bad, but when I’m in the pool I know that I can push myself to do my best,” said Simone. “The coolness of the water helps keep me from being overheated and I can float to rest when needed.”

Recognizing the benefits she receives from her cool suit, Simone would like to dedicate donations from her Swim for MS fundraiser to help support MSAA’s Cooling Program as well as other vital services. She recently enlisted the support of her mother to help recruit donations from family members and plans to promote her Swim challenge to her new military family as well.

“Even though my goal is to swim 1,000 laps, I feel accomplished no matter how many I finish because in spite of everything I’ve been through, I’m still able to swim,” Simone said. “I tell myself every day to have courage and have faith. Have the courage to get up in the morning and have the faith to get through the day, and do the best you can.”

MSAA would like to thank Simone for granting us this interview, choosing to support the MS community through Swim for MS, and inspiring all of us to stay positive and keep fighting every day. To visit Simone’s webpage and support her Swim for MS challenge, please visit: http://support.mymsaa.org/goto/simoneswim. For more information on aquatic exercise and MS or how to start your own Swim for MS fundraiser, please access www.SwimForMS.org.

Simone Sanders - Copy

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Relationships and MS – check out the new issue of The Motivator

Motivator_WS16_emailheaderThe latest issue of The Motivator is now available to order, download, or read the DIGITAL EDITION right on your desktop, tablet, or phone!

Included in this issue of The Motivator:

Cover Story:Motivator_WS16_digital_spread

Making the Most of Our Relationships: Helping ourselves and those around us to cope with MS

… From family and friends to employers and coworkers, the diagnosis of MS can impact how we interact and care for one another.
Read the full story

Research News:
… Information is provided on three investigational medications as they make their way toward FDA approval, two of which are being studied for progressive MS.
Read the full story

Up Front:
… MSAA’s new President and CEO Gina Ross Murdoch talks about her exciting role as well as important events at MSAA.
Read the full story

Program Notes:
… The launch of MSAA’s redesigned and responsive website, ways to stay informed, and MSAA’s new video on pseudobulbar affect (PBA), are featured.
Read the full story

Read the latest issue of The Motivator – and be sure to check out all of the interactive features in the NEW digital edition by clicking “View Digital Edition” on the page!

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MS Mood Swings

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You can only blame lack of sleep for so much before you start asking “Why is my mood so inconsistent!”  Turns out, it’s not just fatigue – it’s actually a common symptom of MS! As with many invisible symptoms that can occur with MS, mood swings can have a profound effect on relationships and emotional health as a whole.

Our phenomenal contributor, Devin, described this frustrating symptom perfectly in his recent article “Invisible Symptoms of MS: Mood Swings” and the community rallied behind him sharing their own stories and support.

It became clear that this is not uncommon, and while difficult to manage, having the support of other people with MS can make all the difference. Here are just some of the comments our community members shared:

Sometimes, even I can’t figure out why I’m upset

  • I never thought my mood swings could be MS- related. Sometimes I can’t explain to myself why I’m reacting as I am.
  • Since my diagnosis, I cry at every chick flick and even the Budweiser Clydesdale commercials! I can’t seem to get my emotions together sometimes
  • There are times I know I’m picking a fight with my husband about something stupid, but I don’t even know why I’m upset!

I just thought I was crazy!

  • I always thought it was just who I am. An emotional roller coaster with frequent break downs.
  • The problem is most people don’t know about this symptom, so I get more depressed because I feel like people think I’m losing your mind.
  • I always know when my meds aren’t working because I start to feel like I’m going crazy – then I have a lot of people to apologize to
  • I just thought I had gone crazy: I didn’t think it could be a MS symptom. It puts my mind at ease to know I’m not alone.
  • I thought I was just a raving lunatic!

Knowing why is one thing; managing these swings is another!

  • It feels normal in the moment; not until after that I look back and realize just how moody I was being. I know it’s the MS, but I don’t know how to control it
  • I definitely get moody, but what can you do? I just live with it and try to stay strong! Laughter is key.
  • I can feel it coming on – as soon as I start to feel practically homicidal I isolate myself in my room and wait it out.
  • Knowing my MS was the cause of my mood swings was a relief, but finding ways to conquer them is the next challenge.

How about you? Have mood swings impacted your life? Have you found any good approaches for managing these? Feel free to share with the community – you are not alone!

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Easy Home Gardening Tips for a Fruitful Summer

Love the taste of fresh vegetables in the summer? Enjoy the feeling of tending to precious plants? Why not garden?

I have to admit, the idea of digging a big hole in the ground, then having to bend or stoop down to tend to it isn’t very appealing. But gardening can have many therapeutic benefits; in fact the therapeutic benefits of garden environments have been documented since ancient times and can help to improve memory, cognition, depression, and anxiety.

The interaction one has with the healing elements of nature helps to nourish the soul, and in this case the body as well.

Many fruits and vegetables can grow in easy, portable containers; making gardening more accessible for everyone. Local grocery stores, home improvement stores, or farmers markets sell the starter kits that come ready to plant! Pick a container and some potting soil and you’re one step closer to fresh fruits and veggies. While the initial cost to purchase the containers, soil, and plants may be high; consider the reward all summer of essentially “free” food.

plant

There are actually at least 35 fruits and vegetables that you can grow in containers; ones that actually thrive in this environment. Some more common and easy options are tomatoes, zucchini and summer squash, peppers, leafy greens (kale, spinach, lettuce), and citrus fruits.

tomato

 

Best-Fall-Vegetables-to-Grow-on-Your-Apartment-Balcony

 

 

 

 

Consider your outdoor space when planning your garden. Plant containers can be placed on tables, blocks, railings, hanging baskets, virtually anywhere! If you plan to use a large container, consider the overall weight when filled. Plant caddies are great for moving larger pots and can be purchased at the local home improvement or garden store.

Home gardening certainly has its trials and tribulations, but we can all learn from each other. Share your gardening experience in the comments below.

plant caddy

References:

http://www.npr.org/sections/thesalt/2012/02/17/147050691/can-gardening-help-troubled-minds-heal

The 35 Easiest Container and Pot Friendly Fruits, Vegetables and Herbs

 

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Hello there, Earth!

Today individuals around the world will celebrate Earth Day, an annual event known to promote environmental awareness and energy conservation. Sometimes it’s easy to take advantage of our planet and all the wonderfulness it has to offer. This is to no fault of our own—life gets busy and chaotic, and our day to day routines get in the way of appreciating the world around us. But if we consciously make the decision to stop just for a moment to take a look around at the beauty of the Earth, it will no doubt create a moment where being present and mindful of our surroundings will ignite this newfound appreciation and gratitude for the world in which we live. And there are some things we can do every day to try and preserve the splendor of the planet and its nature.

Earth-Day-2016-Poster-Earth-Day-Network

  • Recycle, recycle, and recycle!
  • Conserve energy by turning off lights and running water when not in use
  • Opt for using another mode of transportation instead of driving if able
  • Plant or garden to bring more life to the Earth
  • Raise awareness in your community for environmental protection causes

 

So this Earth Day, take a moment to join a movement, a cause, a venture to help care for our planet and all its beauty and glory. Our Earth is precious and allows us to do so much; shouldn’t we help take care of it in return?

 

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Uhthoff’s Phenomenon: Keeping Heat Related Symptoms at Bay

“Uhthoff’s what?” you may be asking yourself. Yes it is a funny name, but it has a more serious meaning. This common symptom of MS can be very troubling, especially when it happens abruptly. Uhthoff’s syndrome or phenomenon is described by clients as a dimming or reduction in vision, usually associated with exercise or overheating.

A 2011 study finds that approximately 60% of MS patients report heat sensitivity. Heat sensitivity is defined as a temporary worsening of MS symptoms when the weather becomes hot or humid. These symptoms are also common when running a fever, or participating in exercise activities.

While Uhthoff’s phenomenon relates solely to vision issues, in the Swedish study heat sensitivity was also discovered as a significant factor relating not only to fatigue but also to several other common MS symptoms such as pain, concentration difficulties, and urination urgency.

Heat sensitivity can cause a number of challenges to individuals with MS. One of the more challenging issues involves determining if the change in symptom is caused by MS disease activity, or other causes such as heat. This experience can be worrisome and cause individuals to fear that their MS is somehow getting worse, or possibly progressing.

So what can you do to combat the heat? Be mindful of how heat can impact your MS symptoms. Planning is the key to keeping heat related symptoms at rest; plan activities around cooler times of the day, either early in the morning or later in the evening.

What tips and tools have you developed to keep heat related symptoms at bay?

References:

http://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-11-27

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Spring Clean Up

SPRINGTIMESpring is the time of year when we think of new beginnings. Before moving forward, the first thing a lot of us think about is getting our current situation in order. In a lot of cases, that can be a daunting task. But it is an important one. Clutter can lead to health-related issues and affect one’s wellness. There is a link between disorganization and thoughts of low self-esteem and worth.

Clutter can weigh you down and cause you to make poor decisions that can impact your health. On the other hand, getting organized can lead to healthier choices, improve your relationships, improve sleep and it can actually help you feel happier and more relaxed.

  • When you do decide to start, take it slow at first. You don’t want to get too overwhelmed. Start small. Pick a small area or task that can be completed in 15 minutes the first few days.
  • Completing the task is important so you get a sense of accomplishment. Don’t make piles and walk away so you need to come back and finish later.
  • Be sure to separate piles of papers that you need to keep versus papers that can be recycled. When you’re finished, make sure the trash makes it to the trash can and important papers get filed neatly and logically so you can find them later.
  • Create some rules to use to help you get through things quicker. For example, if you haven’t used an item or worn a piece of clothing in a year, it is time to donate it. Remember, your items can be donated to a good cause to help others in need (plus if you keep good records of what you donate, you may get an added deduction on your taxes).
  • Lastly, don’t buy anything new until you finish your organizing to see what you already have. You don’t want to buy something you already own, but forgot you had!

Happy Spring cleaning!

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Meet MSAA’s Newest Guest Blogger – Lisa Scroggins

I am Lisa Scroggins, wife, mother, CPA. I was diagnosed in 1991, and my mother had MS. There’s more: two of my five siblings also have MS. So, obviously, I am a person with MS: a patient. I don’t like to be called an MSer. I also resist substituting different words for the letters, M and S, such as “Made Strong:” I like to think of myself as an advocate, and I have written to members of Congress on various issues. I’m currently in the process of trying to correct an inadequate parking situation in my community¹.

If I’m brutally honest with myself, I just don’t like being a disabled person, and I have hope that I can improve. Having officially stopped working because of disability, I am having an identity crisis, as well as an existential one. I know I have pretty severe limitations, which mostly have arisen in the past three to four years. There’s my first clue: it seems as though it’s very recent, but I just typed the truth: my walking ability has worsened over several years, not the one or two that I’ve been telling myself. It has been only a couple of years since I’ve worked, but it’s important to know that I experienced a life-changing series of events which have left me reeling to this day. In other words, it’s complicated.

I’ve had MS for a very long time. I’m lucky, in that for many years, my symptoms were invisible to others. Although they were always in the back of my mind, I had learned to compensate for them.

First example: I’m shopping in a Sam’s Club store. It’s a huge building, and as is typical, I’ve walked around for a while, just browsing for things that I might want to buy, when I realize that fatigue² is kicking in. I’m not prepared to check out, with all that entails: getting my payment and membership cards out, unloading my items to the conveyor belt, putting them back in my cart, storing my cards safely, but keeping my receipt ready to be checked before exiting, trekking to my car, unloading my purchases into my trunk, parking or maybe just abandoning my cart, climbing back into my car where I will rest for a few minutes, while hoping that no one is idling behind me, waiting for my parking spot—oh the pressure! Also, I’m a pretty good distance from the checkout lines, and those lines were fairly long at last glimpse. What to do? I head over to the book section. I park my cart so that hopefully, it won’t impede any other shoppers, grab a few books to peruse, and sit down on the floor to rest and look through the books. Occasionally, I get some questioning looks, but hey, you do what you have to do.

Second example: I have what’s known as a “neurogenic bladder.” Real world translation: I experience urgency, which means I have to pee now! It doesn’t matter when I’ve last relieved myself, or how much my fluid intake has been. (That commercial for an overactive bladder medication is spot-on and even cute! The bladder IS in charge and drags me where it will.) Whenever I enter a building, if I don’t already know where the bathrooms are, I focus on finding their locations. When driving, I have been known to pull over to the side of the Interstate when I couldn’t make it to the nearest restroom. The technique involves putting on my car’s flashers, exiting my car, rapidly walking over to the passenger side, opening both front and rear passenger doors to provide a modicum of privacy, grabbing a fast food napkin or two from the map storage compartment door on the front passenger side for, oh, come on, you know what it’s for (always kept stocked for emergencies such as these!), and doing the squat. There’s just no way to do this in a dignified manner. I always feel guilty for littering. The pre-MS me would never have done such a thing.

The nature of my MS has changed and its effect on me has been nothing short of dramatic. As isolating and terrifying as it is, I know there are thousands of other people going through the same thing. The need to redefine myself in this new state of existence, is a powerful one. In our culture, what we “do” defines us. I’ve been treading water for some time, trying to figure what it is that I “do” now. If it’s true that “necessity is the mother of invention,” I’m looking for some tools. Maybe we can search together.

¹ You may have thought, as I did, that the ADA fixed this stuff, but that is incorrect! An explanation in a future blog post is in the making
² Often cited as the most common and disabling symptom among people with MS.

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Keeping That MS Monster Asleep

By: Lauren Kovac

Ah, spring is in the air. It means pollen-covered cars, sneezing, and nesting. Getting organized for the coming season is something we all want to do. Organization can help MS people feel a small sense of control.

I was extremely organized, before the MS changed that. It messed up my neatness. Actually, it was more like a tornado barreling through my nice organized piles.

I have learned to turn a blind eye, take a deep breath, and have some chocolate. However, some things cannot be left. With MS, you constantly have to learn to find alternative ways to keep the MS monster sleeping.

With three boys and constantly using my clothes for target practice, a laundry mountain cast a dark shadow on my life. Getting the basket from my bedroom to the laundry room was an obstacle course. My solution is now to push it with my walker on a plant stand with wheels.

Spring means soccer too. Games are fast, so outings are short. I get some much-needed vitamin D and adult interaction. Enjoy outside while you can. Take advantage of nice weather, before the heat comes. It is nice to enjoy the fresh air without being a bug buffet.

Interaction face to face is nice too. I love our dog, but he can’t talk back. He is not a conversationalist. He only has one sound and it sounds like barking. He will whine occasionally, if you are eating cheese. His conversations are rather one sided.

I relish my weekly therapeutic horseback riding lessons. The quiet of the farm, the green pastures, flowering trees, and even the horse poop means freedom. Swirling whirlpools of shed horsehair in the breeze means I can enjoy outside.

Once it gets hot, I embrace my inner hermit. Until then, I soak in the lovely weather, take an allergy pill, and get some rays. I like being a toasted mushroom instead of a pasty one. Sun, interaction, horses, and watching my son’s soccer games are great ways for me to keep that MS monster sleeping.

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Ahhh Spring…

162309-It-s-SpringThe birds, the flowers, the sun and the showers! This season is a rejuvenating time where we can cast off the dusty winter and break out the cool breezes of spring. Over the winter all of our favorite outdoor activities close down in anticipation of cold weather (how rude). Park gates shut earlier, boardwalks are silent and activities in general slow to a standstill. Things take a break for winter and sleep waiting for this time of year to come back round again. Now that spring has started to reappear across the country, it’s a great time to get back out to some of your favorite spots. There are festivals and farmers markets. Concerts and exhibits. Parks reopen and stay open longer as the sunshine stretches well past 5 PM allowing you to explore your city or county well into the evening.

There are events both small and large to be attended and taking a look at your state, county or city website can give you an idea of what activities or happenings are going on in your neck of the woods. You may find a new concert series you didn’t know was happening, an art or food festival near by or something new your town is trying out for the first time. Here in Philadelphia we are gearing up to host our first ever Chinese Lantern Festival at the end of the month. In DC the cherry blossoms are all the rage while in Texas the rodeo is kicking up. Seattle is getting expressive with their art festivals and the Wisconsin Film Festival starts at the end of the week.

This spring make yourself a promise to get out and explore one new activity your area offers, you may be surprised by what you find!

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