Just Do It, pushing past the fear

Posted on April 30, 2014 by Samantha Schech

In my attempt to become more physically active this year and try something new, I found myself curious to adventure out into the “exercise class” realm of the fitness world. Historically, I have always been a very strong person, weight lifting and cardio training on a machine has always come fairly easy. I can maneuver through a gym and get my routine done pretty easily. But needless to say, I am not the most coordinated person, I could never visualize myself taking a class where following a routine was required.

For the longest time I have wanted to try a Zumba class, but the fear of other’s judgment has held me back. In my strive to be perfect, it was hard for me to imagine not being good at something. I could just imagine myself surrounded by a group of women who can seamlessly follow the direction of the instructor and dance their hearts out for an hour. Not to mention, the room is encased in mirrors, adding to my fear of seeing myself look ridiculous.

Last week I made the call to a local fitness studio to inquire about their classes, I spoke with the owner and told her how I had wanted to join for a while now, but hadn’t come around to it. Her immediate response was “what’s taken you so long, get your butt in here”! It didn’t take long to persuade me, and the next day there I was.

I have to admit, I did think about chickening out at least a dozen times, but I pushed myself to move past my fear and go to the class. It is easier said than done, but we should not allow ourselves to miss out on life’s great opportunities because of fear, especially fear around the perceived thoughts of others. My fear of not being perfect and that everyone in the class would laugh at me almost prevented me from enjoying myself.

Although the class was hard and I was behind on almost every step, I wasn’t the only person. Looking around, the majority of the women were not the Britney Spears backup dancers I had imagined. We were all there for the sole purpose, to dance, have fun, and burn some calories.

The moral of this story is, we all have things we are afraid of but every once in a while we have to push past the fear to give things a chance. Maybe it works out, maybe it doesn’t but at least we would know for a fact instead of imagining a scenario in our heads.

Is there anything that you have wanted to do, or try, or ask, but have been held back because of fear? How do you plan to move past it?

I Got a FitBit to Get a Bit Fit

Posted on April 28, 2014 by MSAA

By: Jeri Burtchell

Like that commercial for cassette tapes from the 70s wondered, “is it live or is it Memorex?” I’m becoming unsure of what symptoms are due to my MS, and which ones I would have had anyhow. Now that I’m a quinquagenarian (who knew people in their fifties had a name?), I’m realizing not everything can be blamed on MS.

There’s new research that shows exercise can help MS fatigue which to me seems counter-intuitive. If I can’t even stay awake in the afternoon, how am I expected to exercise?

Inspired by friends who are losing weight and exercising, I have decided to become more fit. My goal was simple: I just want to get up in the morning and not hobble about like a wooden marionette. Maybe stretching and walking would be good for me.

It turns out that I’m one of those people who needs to measure progress and see rewards. I needed a tracker. While researching the various gadgets I happened on FitBit and I fell in love with the Flex. It’s a wristband that tracks steps, miles, calories burned, and even tracks your sleep. It seemed like the perfect solution.

If you are in your fifties and have MS and decide to buy one of these, do NOT leave the default settings in place. The daily step count goal is 10,000 steps. If you’ve never paid attention to how many steps you take in an average day, you’d be surprised, but you might also already know that 10K steps is pushing it for a 50something, otherwise inert person.

The package came on a Saturday so I gathered the kids and we headed off to nearby Ravine Gardens State Park where the azaleas were in full bloom. Criss-crossed with trails for the physically fit, the park is circled by a paved road so you can also enjoy it from the comfort of your Honda. In retrospect, that’s probably where I should have been.

The energy and excitement the kids were feeling was contagious. I was excited to start getting fit by becoming more active and I planned to do it by walking. I knew I couldn’t keep up with their pace however, so I let the kids go on ahead planning to meet back in the parking lot.

This ravine was not new to me. Thirty years earlier I had walked it often when my oldest son was small. I remember pushing a stroller and casually communing with nature. So the sign at the park entrance that clearly stated the drive measured 1.8 miles had to be wrong… or maybe 1.8 miles was nothing, since my FitBit also said I should be able to walk 5 miles in a day.

I started out strong, pacing myself and walking confidently, breathing in the fresh air and appreciating the sun-dappled flowers.

But before long I found myself wilting, and searching out the nearest bench to rest on. That’s okay, I thought to myself, there’s no hurry. I can rest as often as I like.

Soon, however, I was about halfway around the circumference of the park when panic set in. I really didn’t think I could make it out of the park. I dialed my son’s cell phone to let him know maybe he should send one of the many park employees for me, riding one of those golf carts.

His number went straight to voicemail and my texts went unanswered. As usual, he’d forgotten to charge it.

Sitting on a bench I weighed my options. Walk until I fell on my face, stay on the bench until someone came looking for me, or take my time and make slow progress, sitting often on benches along the way.

I opted for the latter. My fun excursion into the world of the fit became a fight to make it to the next bench where I could collapse and wait until my poor legs felt they could try again.

A good two hours after our trip to the park began I finally straggled into the parking lot where both kids ran up to see if I was okay.

That was four weeks ago and since then I have learned a lot. I have learned that while I’m not a teenager any more, I can walk a mile working out to exercise videos. That way, if I get exhausted I’m already home. I’ve also learned I need to listen to my MS.

I may have overdone it that first day in the park, but I haven’t given up. In the month since I started, I have lost almost five pounds, I no longer need to nap, and I have more strength. There’s no denying that my FitBit is helping me to get fit — one little bit at a time.

References:
http://contributors.healthline.com/mind/listen-your-body-msers

*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.

What do you wish people knew about living life with MS?

Posted on April 25, 2014 by MultipleSclerosis.net

There is often an unspoken understanding among people who have been diagnosed with MS, but it can be quite difficult for those without this condition to fully comprehend what day-to-day life is like for someone with MS. The effects of MS are far-reaching, impacting individuals physically, cognitively, and emotionally, with symptoms often unseen.

We asked the MultipleSclerosis.Net community what they wished people knew about what it is like to live with MS and to share some of the common misconceptions associated with this condition. More than 300 responded with insightful feedback. Here is a summary of the responses we received from our community members:

MS is real, not an excuse:

No one chooses to have MS, nor can we control how it affects us
Not all MS symptoms are visible; you may look okay on the outside, but feel like you are falling apart on the inside
People often make the assumption that we are faking our symptoms or that we are hypochondriacs because they can’t see what we are experiencing
The limitations associated with MS aren’t necessarily visible, and it’s not possible for others to push us past our own limits
MS can be both extremely painful and exhausting, and at times we just need to rest

MS is unique to each person and is not predictable:

Every patient experiences MS progression at a different pace; it is not a “one size fits all” condition
Symptoms can change daily, or even hourly
Having MS can be a roller coaster ride with ups, downs, twists, and turns, but there is nothing fun about it
It is impossible to understand what it is like to live with MS unless you actually have it
It may seem like MS is trying to take away your self-worth every day by slowly making you unable to do the things that you were able to do yesterday
Even if yesterday was a particularly difficult day, today may be better
MS can knock you off your feet – literally and figuratively

It can sometimes be both stressful and depressing to have MS:

MS can take away our dignity by slowly and quietly taking away our mobility and cognitive thinking
MS is a multifaceted condition that can be incredibly difficult to live with; it not only affects us physically, but mentally and emotionally as well

The effects of MS are constant and can impact more than just the individual with the diagnosis:

We never stop thinking about our MS, even when we are feeling well
MS diagnosis can be devastating, affecting both the patient and his or her loved ones
We need our friends and family to be open-minded and understanding

There is no cure for MS, but it is not a death sentence (and can make you stronger in many ways):

There is a continued need for research with the hope of one day finding a cure
There is no miracle potion that will cure MS
MS doesn’t change who a person is, but it can change what a person is able to do
Hearing a doctor tell you that you have MS can be incredibly frightening, but over time, people with MS are able to educate themselves about their condition and face it head-on
MS isn’t always debilitating
It is not contagious
MS is associated with many challenges, but these challenges can ultimately make you stronger

What do you wish people knew about MS? What do you think are the most common misconceptions about MS?

Latest Issue of The Motivator Now Available for the MS Community

Posted on April 22, 2014 by MSAA

The Motivator is MSAA’s award-winning magazine provided to the MS community and to our generous supporters. Distributed twice per year, this publication addresses the physical, emotional, and social issues that arise with MS, and provides information and support to many individuals affected by this disorder.

We’re pleased to announce that the Winter/Spring 2014 issue of The Motivator is now available to read!

Cover Story:
The Emotional and Psychological Symptoms of MS
… The symptoms of depression, anxiety, and pseudobulbar affect (PBA) are described, along with effective treatment strategies. Important information is also given on how these symptoms affect roles and relationships, sexual function, and self-image.
Read the full story

Feature Story:
…Competitive “biosimilar” drugs may soon be considered for approval. Read about how these “highly similar” drugs may affect procedure, treatment, and cost.
Read the full story

Program Notes:
…Details on MSAA’s new Swim for MS online Aquatic Center are highlighted. This national program initiative supports the awareness, understanding, and availability of swimming and aquatic exercise as a positive wellness opportunity for the MS community.
Read the full story

Read the latest issue of The Motivator

Celebrating our Earth

Posted on April 21, 2014 by Samantha Schech

With the hassles of our daily lives, it is often difficult to stop and smell the roses. When rushing from one place to another, we may miss the beauty around us. With so much going on in our personal lives, we need to be reminded to practice self-care, and take a break. This Tuesday, April 22nd, take a break from the hustle and bustle and enjoy your surroundings. April 22nd is universally known as Earth Day, the one day out of the year that we are reminded to honor the environment and pledge to respect our Earth.

This Earth Day, take a moment to enjoy what nature has provided. Throughout the country, many individuals choose to participate in community wide Earth Day events; here are some ways how you can celebrate the Earth in your own home.

Use power minimally:

Allow the sun’s natural light to enter the home and light up your surroundings.
Utilize nature’s natural dryer and hang clothing outside to dry.
Unplug electronic devices that are not in use.

Prepare a fresh local meal:

Check out your local farmer’s market and support local agriculture. Click here to find one near you!
Try to avoid the oven – prepare a fresh dish from your findings at the market.

Garden:

Plant a tree, or flowers for your home. Trees, shrubs, and grass all help to eliminate carbon dioxide from the air.
Ask your local gardening center for tips on low maintenance plants and the best plant for your area.

Reduce, Reuse and Recycle:

Learn about your community’s recycling program. Many cities offer programs to encourage recycling!

What activities do you have planned to celebrate our earth?

Time to Cool Down – Cooling Vests for MS Heat Sensitivity

Posted on April 16, 2014 by Angel Blair

Though spring has just begun for many around the country, some individuals may already
be thinking about the upcoming summer months and what that means – heat! For individuals with MS who experience heat sensitivity with their MS symptoms, the idea of facing the heat and humidity the summer season brings can be stressful. But it’s important to know there are some ways you can cool your body down and feel some relief with those hot and humid days. MSAA offers a Cooling Equipment Distribution Program which provides different ice-pack style cooling vests and accessory options that can be worn on the body for relief from the heat. With differing vest styles ranging from those that can be worn under or over your clothing, and kit accessories that include cooling wrist and ankle wraps, the program has something to fit individual needs. For more information, see the MSAA website at https://mymsaa.org/msaa-help/cooling/.

*Please note the program eligibility requirements within the application.

New Year’s Resolution Follow Up

Posted on April 14, 2014 by MSAA

By: Matt Cavallo

Raise your hand if you have stuck to your New Year’s resolution. Believe it or not, we are a quarter of the way through 2014 and reserving the right to recycle our resolutions for next year. I’ll be the first to throw myself under that bus! Seeing as we are a quarter of the way through the year, I wanted to follow up on some of the goals that I set and challenge myself to recommit to my original 2014 goals.

In January, I wrote that I was carrying about twenty one pounds of extra weight. This extra weight was making my legs weak and numb, my fatigue levels were high, and my clothes were uncomfortable. I resolved to lose twenty one pounds. My thinking was that in addition to my multiple sclerosis, the extra weight was contributing to the weakness in my legs and fatigue. My plan was to eat right, eat less and exercise more.

Eating right is a challenge to me. My line of work has me traveling the country almost every week. Seven out of eight weeks between January and February, I traveled. In fact, I am writing this right now on a flight from St. Louis back home to Phoenix. Between living in hotel rooms and the demands of my job, I didn’t have the strength or energy to get a healthy meal when there was a convenient drive-thru option. These eating decisions were the reason that I was struggling to button my pants!

Despite traveling extensively, I was determined to not have to buy new pants. I made the decision that I was going to lose weight on the road by changing my habits. First, I started with breakfast. The hotels that I stay at always have a breakfast buffet. There is an endless supply of bacon, eggs, toast and pastries. Most mornings I can smell the bacon long before I reach the buffet. As much as it pains me, the first change I made was skipping out of the buffet line and heading right to the yogurt and fruit. This change has been hard for me, and there are some days that I can’t resist a big breakfast, but I find that starting the day on the road with yogurt, fruit and a glass of water can be fulfilling and helps my digestive process.

For lunch, I have also been eating lighter. I work in hospitals, so I generally eat lunch at the cafeteria. The cafeterias generally tempt me with yummy burger, pizza or fried chicken options. Again I hold my nose and walk past temptation to the salad bar. I typically eat a salad and top it with some chicken. In the past, however, I would have smothered my healthy salad with a nice creamy ranch dressing, but lately I have opted for the lighter vinaigrettes. These dressings coat the salad easier, so you use less, and they are typically fewer calories than the creamy dressings I prefer.

These decisions that I make for breakfast and lunch afford me some slack at dinner. While my preference at the end of a long day of work on the road is for a double-stacked greasy drive-thru burger, large fries, and chocolate shake, I have been choosing healthier options. Instead of driving through, I place orders that force me to get out of the car. Instead of greasy, fried goodness, I have also been choosing lighter, grilled options.

The other thing that I am doing is consuming smaller portions. Part of it has to do with the fact that I don’t want to buy new pants, but I have found that once I cut back on my portion size, my body got used to it pretty fast. When I was consistently eating heavy meals, I needed more food. Now that I am eating less, I find that I get fuller faster. I am by nature a fast eater, who in the past would clean my plate before others around me had barely started. I now make a conscious effort to slow down and enjoy the food. By doing this, I don’t always have to clean my plate. Drinking more water throughout the day has also been a daily goal of mine. I found that some of my hunger may have been more related to being dehydrated than actually hungry.

With all of these changes, I have lost eleven pounds, which is halfway to my goal weight. My legs feel lighter, and I am less fatigued. And yes, my pants are now less of a struggle to button!

While I am winning the battle with diet, I am losing with exercise. I have made my annual post-resolution trip to the gym. I worked out, felt great and haven’t been back since! There is a free gym in every hotel where I stay, but I find myself alone in my room catching up TV shows or movies that I can’t watch at home because of the kids. I do tend to take the stairs instead of the elevator and keep true to my daily walks, but I know that I would feel so much better if I could just commit to working out.

So, a quarter into the year, and I am doing OK with my resolutions. I have lost half of my goal weight by making better eating decisions which included eating healthier and having smaller portion sizes. It was a struggle at first, but I feel better only ninety days into this year than I did last year. While I am doing well with diet, I have not followed through with exercise. Much like diet, once I establish a routine, I’ll be used to it and it will become natural. I am not there yet. However, New Year’s is not the only time for resolutions. You can recommit to feeling healthier anytime during the year. Are you accomplishing your resolutions? What are you going to do to get back on track? Invest in yourself because you are worth it, and be the change you want to be.

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

Spring into Action

Posted on April 11, 2014 by Ashley

Well, it’s officially spring… although I know a lot of people up north would disagree with the cold weather… but I thought I would talk about some of things that I do to “Spring into Action” around this time of year.

Since the weather is actually REALLY nice in Texas right now, I’ve been trying to spend a lot of time outside… and for those of you who enjoy the outdoors as much as I do, there are some things we need to take into account. Like… how long should we stay outside? For me, it’s all about reading the signs my body gives me. If I start to feel overheated, I go into shade, or go inside. If I’m REALLY overheated, like I get in the 100+ Degree Weather we have in Texas during the summer, a cold shower always helps!

Now, before it gets TOO hot outside, there are some things you can do that will help you manage the heat later on. Do you have any MS Cooling Packs? If not, I highly recommend checking out MSAA’s Cooling Distribution Program. I’ve come to find that the Cooling Neck & Upper Spine Wrap, from Polar Products, really cools my core temperature. Also, there are those little Wrist Cooling Wraps that help as well. Also, when sitting outside on those hot summer days, I LOVE my Cooling Seat Cushion. Now these are just my personal opinion that I’ve found through trying different types of cooling products that help me out, and that I also don’t have to put on under clothing.

When it comes to any type of cooling product used for Heat Intolerance & MS, I feel like it’s a personal preference. The ones listed above are what I use when I’m just sitting outside, watching the kids play, etc. But when it comes to doing things outside like going on walks, yard work, etc. This is when I would use my Cooling Vest. There are A LOT of different types to choose from, so again, personal preference. By clicking on any of the links above, it will take you to different things offered by Polar Products. But there are other Cooling Product Companies out there; I just listed the ones that I have personally used.

Now, I know that a lot of us made some promises to ourselves for the New Year to become more active, eat healthier, etc. I’ve been doing that… and I have a gym membership… and I can say that the exercise that I can do the easiest is swimming. I did make sure that the gym I got a membership to had an INDOOR pool, because with the way the weather has been lately, you never know what you’re going to get.

I’m not going to say it was REALLY easy beginning exercising regularly again, but I do enjoy it. I think one of the most frustrating things I’ve been dealing with is the fact that I was so used to what I was able to do BEFORE I got MS, when I was in Athletics in school, Swim Team and things like that. But I’ve come to the realization that if I don’t want to overdo and aggravate my MS & MS Symptoms, that I have to make a new routine. It takes time, but I feel like I have more energy now. I don’t go to the gym every day, but I do try and walk a little bit on the days that I don’t.

Now about this whole “eating healthy” thing… let me just say that I am a born & raised Texan, and I love my southern food and Mexican food… so this is a REALLY tough issue! I’m not being REALLY intense with it, but I am watching my portions and things like that. I won’t ever be able to stay away from carbs and all of that yummy stuff that I crave, so I decided I wasn’t going to make a plan that I wasn’t going to fully stick with. But by watching my portions and having small snacks in between meals, it’s pretty easy, for me anyway. Oh, and let me just tell you that I am a VERY picky eater and don’t eat the suggested fruits and vegetable intake that you’re supposed to, but I did find a yummy supplement at a health store that I mix with water in the morning and drink that with my breakfast (it tastes like candy, by the way) and that way, I have had my “suggested daily fruits and veggie intake.”

Okay – I hope I didn’t overload you with all that information, but I did want to cover a few of those topics that I know are really popular right now. I hope everyone is outside enjoying the weather- if it’s not too cold, that is.

For more information about Resources for your MS, check out MSWorld’s Resource Center.

Best Wishes!

Ashley Ringstaff – Volunteer for MSWorld.org

Spring Cleaning

Posted on April 9, 2014 by Angel Blair

To many people springtime symbolizes a fresh start. The change in seasons from winter to spring offers hope and the opportunity to make changes and do some “spring cleaning” for many. When people hear this term, different pictures may come to mind, like cleaning the house, washing windows, or cleaning gutters in preparation for upcoming summer months. However, the concept of spring cleaning can represent anything you want it to. One type of cleaning can be shown in the physical sense – like washing floors, walls and windows. Another form can include straightening out closets or reorganizing drawers and files. Or in another sense, this spring cleaning can be more personal in nature, one in which the ‘cleaning’ occurs on the inside. It may be an opportunity to make changes or adjustments to old routines, to set new goals, or to just make time for yourself, to clear your mind and open yourself up to new possibilities. Spring cleaning doesn’t have to mean giving the house a makeover; it can mean something more personal and private – a cleansing of sorts that may not necessarily be visually captured, but a cleaning that you know has occurred.

Is There a Relationship Between MS, Allergies and Histamine?

Posted on April 7, 2014 by MSAA

By: Matt Cavallo

Spring is in the air. So is pollen. With the pollen, my seasonal allergies are in full bloom. I am still sneezing from the last time I stopped to smell the roses. With my seasonal allergies at their peak, I wondered: is there a correlation between multiple sclerosis and allergies?

When I started my research, I was instantly disappointed. All of the initial research pointed to no correlation between MS and allergies. In fact, a 2011 study by the National Center for Biotechnology Information (NCBI) titled, Association between allergies and multiple sclerosis: a systematic review and meta-analysis, concluded that there was no connection between allergic diseases and MS.

While the initial research suggested no direct correlation between MS and allergies, the deeper I dug, a relationship between histamine and multiple sclerosis started to evolve. According to the Encyclopedia Britannica, histamine is a “biologically active substance found in a great variety of living organisms…In an allergic reaction—the immune system’s hypersensitivity reaction to usually harmless foreign substances (called antigens in this context) that enter the body—mast cells release histamine in inordinate amounts.” The definition goes on to explain that the antigens can cause inflammation. After reading this research, my questions became: Does the inflammation caused by these antigens contribute to MS symptoms? And is this partly why I feel worse when my allergies are at their peak?

My questions lead me to research more about histamine and MS. As it turns out there are research studies ongoing exploring the relationship between MS and histamine. A study of histamines and MS on Science Daily found an “unexpected connection between pathways involved in autoimmunity and allergy and suggests previously unrecognized connections between these very different types of immune responses.” The NCBI concluded in a 2013 study, Elevated CSF histamine levels in multiple sclerosis patients, that MS patients had higher histamine levels than the control group and that further exploration was needed.

I am not a scientist, nor am I a doctor. I’m just a guy with MS and bad seasonal allergies. I know that when I feel crummy due to my allergies, that my MS symptoms seem to flare. There are two sides to the argument: one suggests no relationship between MS and allergies, the other suggests that a key immune response to allergies, histamine, may play a role in multiple sclerosis. Until they are able to figure it out, I’m still not going to stop and smell the roses. Hopefully with science and research, one day I will be able to.

Resources:
http://www.ncbi.nlm.nih.gov/pubmed/20456246
http://www.britannica.com/EBchecked/topic/267004/histamine
http://www.sciencedaily.com/releases/2011/01/110131133317.htm
http://www.ncbi.nlm.nih.gov/pubmed/23659456

FOLLOW MSAA ON: