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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This is Spring? (When expectations don’t quite match realities)

So the spring equinox supposedly arrived for us living in the northern hemisphere on March 20th this year, marking it as the first official day of ‘spring.’ However, for those of us living on the east coast, it hasn’t quite felt like spring this past week. When it comes to weather changes we can usually deal with the clichéd ‘April showers bring May flowers’ notions, and even March’s infamous reputation that it ‘comes in like a lion and out like a lamb,’ because we’re hopeful that the next beloved season is right around the corner.  But with temperatures in the 40’s and flurries impeding on morning commutes this past week, it appears that spring has decided to abdicate its duties (at least for the time being). Not quite what we expected so far, right?

Ok, now the weather has been increasingly unpredictable over the years due to a number of factors and elements so it’s not a total surprise that our desired seasons don’t occur quite how we hope. But it further highlights this notion that sometimes what we expect to happen doesn’t quite match reality; and this becomes the continued barrier we encounter and struggle with through all phases of life. We know that life itself and the day to day can be very erratic—with varying degrees of triumphs or defeats, but when additional factors are added to the mix it can be even more challenging to match expectations to reality. No one holds the expectation that they will become ill or be diagnosed with a chronic illness, so again reality doesn’t match up at times.

When expectations aren’t met and life continues to generate its own agenda-not taking into account how you feel about it, this can be extremely frustrating and overwhelming. So when this happens, what can you do? How can adjustments be made or things tweaked so you’re not getting constantly knocked down or totally thrown off course when life throws a wrench in your plan? You can PUSH BACK. Now this can be very much easier said than done sometimes, but how else can you let life know that you’re still very much a part of it even though it may not be what you expected? And this doesn’t have to look a certain way. Each person has their own unique personality and attitudes and the ability to use and embellish character strengths to the exponential degree. You demonstrate resilience and take control over how you react to changes you encounter. You work on showing life how its changes will work around you and your needs, not the other way around.

Again, this is not an easy thing to do. It can be devastating when life doesn’t work out the way we hoped and expected it to. But this is where there can be strength in numbers-where people can reach out to others for support and find hope. Learning what others have done to overcome a situation, where they’ve found their strengths and how they’ve pushed forward can be incredible assets to embrace. Everyone has experienced moments where reality doesn’t happen like we expected, but we find ourselves together in that, and once again surrounded by potential hope.

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2016 Improving Lives Benefit Recap

On March 30th, we held our third annual Improving Lives Benefit in Philadelphia, PA. The proceeds of this event benefit the multiple sclerosis community through the programs and services we provide.

benefit

(Pictured above from left: MSAA Board Chair James Anderson, Honoree Susan Russo, Honoree Douglas Franklin, and MSAA President & CEO Gina Murdoch)

We want to truly thank you for your contribution this year – your support and generosity are crucial to our mission of Improving Lives Today. With the help of supporters like you, MSAA was able to raise more than $130,000 – which will make a tremendous difference in the lives of numerous individuals and families with MS.

Please visit our online ad journal for a list of supporters and event sponsors at support.mymsaa.org/adjournal.

Donations for this event are still welcome. You can donate by clicking the button below.

give now

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Spring Resiliency Reminders for MS

If you live along the east coast, like most of us do here at MSAA, signs of spring are showing. We have battled another harsh New England winter and are looking forward to the first signs of spring. Spring has always been my favorite time of year; to me spring flowers represent resiliency. The tiny buds fought the tough winter to show their beauty to the world once again.

april blog pic

“Resilience is very different than being numb. Resilience means you experience, you feel, you fail, you hurt. You fall. But, you keep going”. — Yasmin Mogahed

Having a diagnosis such as MS can inspire and drive an individual to find the resiliency that is buried within. For those with Relapsing Remitting MS, the ebb and flow of life between relapses is proof of the resiliency that exists. For those with more progressive forms of MS such as Secondary Progressive MS or Primary Progressive MS, the daily adaptation and adjustment to a new lifestyle is also proof that resiliency exists. Recognizing and acknowledging that change isn’t always a bad thing and learning to be OK with the new normal is also proof that resiliency exists in MS.

Share the ways you have remained resilient with MS in the comments below.

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

MSAA is very proud to present our 2016-17 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.

April Artist of the Month:
Debra Robert – Lake Worth, FL
Constellation des Colores
Debra Robert - Constellation des Colores

About the Artist:
“I have been painting for over 25 years. I have a BA in theatre arts and an MFA in film producing. My career has taken me around the world, working in live events/concerts/conferences for over 20 years.

Now diagnosed with Multiple Sclerosis (MS), I had to retire from my exciting, vibrant career. I am determined to put my energy into art full-time, surrounding myself in a world of color and light. I pull my inspiration from years of the lighting design, sounds and imaginative shapes from live performance production.”
Read more

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March is almost over…But before we go

This month we’ve been highlighting MS Awareness as we present different topics important to and associated with MS as well as ways in which we can educate ourselves and those around us. In addition to MS Awareness, March is also Social Work Month. Social workers play a vital role in overall health and wellness, mental health, as well as in areas far outside of the health sciences.

Social-Work-Month-2016-Home-Page-Slideshow-

Social workers have been around since before the 1800’s working diligently on issues of injustice, inequality and to help empower individuals and communities to use their collective strength to make a difference. Some of our most noted alums here in the United States started institutions such as the Hull House in Chicago in 1889, which was established to help the surrounding low-income neighborhoods have access to education programs, health care services and recreational opportunities. In addition to reaching out to low-income communities, social workers throughout history have partnered with the Red Cross to treat soldiers returning from war, been civil rights activists, served on presidential cabinets and worked in legislative arenas as catalysts for change. Social workers are often thought of as the caseworkers in hospitals or with children and family services. While those are two of the important roles that social workers take on, social workers also work with the military or international businesses as well as be political campaign workers, community organizers, run nonprofit organizations and are behavior and mental health professionals. Our first lady Michelle Obama has an MSW (Master of Social Work) on her team to initiate new programs and services across the country.

Social work as a profession has evolved from those early years but some things still remain. The individuals who enter into social work are dedicated, compassionate, innovative, inclusive and hard working professionals who cover a bevy of occupations and can be found in almost every avenue. We meet people on some of their worst days and walk with them through circumstances and over obstacles while assisting them to build on their own strengths to come out the other side better equipped to tackle some of life’s uncertainty. It takes a special person to be a social worker and partner with others to be the difference someone may need.

Social-Worker-Board-Exam-Results-June-2014-Quotes

Thank any social workers you know for all their hard work not just in the month of March but whenever you get the chance.

 

 

 

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