Expediting Travel When You Have Multiple Sclerosis

Posted on June 18, 2014 by MSAA

If you are traveling this summer, you may need to do a little extra planning to ensure you have the best experience possible on your trip.

Groups like Able to Travel sponsored by the United Spinal Association act as travel agents for accessible vacation planning and accessible guided tours and cruises. You can also do it yourself by calling ahead to hotels, restaurants, and venues to ensure accessibility of rooms, bathrooms, and fun activities.

If you are using an airport, you can actually call the TSA 72 hours in advance of your trip to arrange for a quick experience getting through security checkpoints (http://www.tsa.gov/traveler-information/travelers-disabilities-and-medical-conditions). Additionally, many airlines offer assistive services for boarding and navigating the airport, so be sure to make the airline and flight attendants aware of any needs you may have in advance of your flight.

There are also helpful websites like Flying with Disability which may offer helpful tips and suggesting for easing travel burdens.

Remember to do your homework before paying for services or using a company you are unfamiliar with to plan your trip or travel with, and most importantly – enjoy your trip!

The Benefits of Aquatic Exercise and MS

Posted on June 16, 2014 by MSAA

By: Matt Cavallo

Walking was always something that I took for granted until that one day that I couldn’t do it anymore. Then, as I watched the world walk by me, I yearned to be up on my feet ambling about. The problem was that no matter how strong my mind and determination were, my legs would simply not respond. It was hard for me to understand that the problem was in my spine and no amount of mental fortitude could overcome the spinal lesions caused by multiple sclerosis.

I was confined to small, assisted steps. I was able to travel only from my bed or couch to the bathroom and back. My wife brought food and drinks to me when she was home but when she was at work, I usually didn’t eat or drink. I was ashamed that I lost functionality the way I did. I didn’t want people to take pity upon me. I had always been this big, strong athletic guy and now I couldn’t even walk down three steps to get out of my house.

My doctor was confident that I could regain functionality and learn how to walk again. I wasn’t so sure. He said that the Solu-medrol would act to reduce the swelling in my spine, and little by little sensation would return to my legs. He did caution me that I would have to relearn how to walk and ordered me to have aquatic therapy. I was skeptical, but I gave it a shot.

The results were truly amazing. When I started exercising in the pool, my legs felt lighter and easier to move. The exercises really help to strengthen and balance me on my feet. While I was in the water, I felt free again. After three weeks of aquatic therapy, I was walking with a cane for short distances. I was not negotiating steps or hills, but I could get around the house on my own. More importantly, I was able to go to the bathroom again by myself. I was amazed at my progress. In just three short weeks, I was completely independent with walking.

Today, if you saw me in the street you wouldn’t think that I ever lost function of my legs. One of my secrets is that I continue to work out in the pool. I live in Arizona and can use my pool most of the year.

Now, if you are having immediate problems with strength, balance or mobility, you should contact your physician right away. If you are looking for a strengthening exercise routine that you can do on your own, you’ve come to the right place.

MSAA has a new online Aquatic Center that you can access at http://SwimForMS.org. The Aquatic Center has tools and inspirational videos for the MS community. Some of the resources include: guides for patients and healthcare professionals, a handy tip sheet about aquatic exercise and MS, information on how to find an aquatics facility in your area, and inspirational videos from three individuals sharing their personal stories about how water activities have positively impacted their lives.

Even if you don’t live in Arizona, you can still turn any pool, at any time into your own personal gym while raising awareness for MS.

*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/

Vitamin D and Multiple Sclerosis

Posted on June 11, 2014 by MSAA

Recently, new studies have begun to investigate a correlation between multiple sclerosis and Vitamin D. And, while it may be tempting to make changes to your daily routine based on the information presented in these studies, it is always important to discuss these changes with your neurologist first. As this information is passed throughout the MS community, it is important to be mindful of how your body absorbs Vitamin D.

One of the more natural ways the body absorbs Vitamin D is through the skin from sunlight. However, with the increase in cancerous skin diseases such as Melanoma, individuals are more vigilant regarding the exposure their skin receives and are using sunscreens to try and block some of the sun’s UV light. With this in mind, it may be important to talk to your doctor about other ways to increase the body’s exposure to Vitamin D. For many, taking supplements and being mindful to eat more foods enriched with Vitamin D assists in increasing the body’s Vitamin D levels.

Always consult with your doctor regarding the use of any supplements or in modifying your diet. Although you may find the foods and supplements to be helpful, they could also be harmful to individuals if not monitored closely.

Highlights from the 2014 American Academy of Neurology’s Annual Meeting

Posted on June 4, 2014 by MSAA

Please read MSAA’s article summarizing highlights from the American Academy of Neurology’s (AAN’s) 66^th Annual Meeting, which was held in Philadelphia and concluded in early May. Neurologists from around the world attended this exciting conference, where the latest findings in MS research and treatments were presented.

Topics highlighted in this article include:

Updates on approved treatments for MS
Study results on experimental treatments
Medications under investigation for progressive forms of MS
Pregnancy information for individuals taking disease-modifying therapies
and much more!

Read the full article on highlights from this year’s American Academy of Neurology’s (AAN’s) 66^th Annual Meeting

MSAA Attends 2014 Consortium of Multiple Sclerosis Centers

Posted on June 2, 2014 by MSAA

Several members of the MSAA team traveled down to Dallas, Texas last week for the 2014 meeting of the Consortium of MS Centers (CMSC). The meeting had approximately 2,000 registered participants (the largest CMSC ever) ranging from doctors, nurses and researchers, to nonprofit organizations like MSAA.

MSAA set up our booth and reached out to attendees to try and ensure that providers are aware of our services and can refer to them as needed.

Some of the partners MSAA works with were also in attendance, including the vendors who work with MSAA on our Cooling program:

The annual CMSC meeting is one of the best opportunities for education, sharing, and collaboration for professionals who serve the MS community. MSAA staff attended a number of helpful classes, lectures, and interactive sessions on everything from research and study updates related to causes and treatments to efforts to improve quality of life and comprehensive MS care.

Stay tuned to MSAA for more information and knowledge learned at the 2014 CMSC.

Swim Cap Giveaway – Sign Up to Swim for MS

Posted on May 21, 2014 by MSAA

Temperatures are rising across many parts of the country, and people with and without MS will soon be looking for a way to keep cool or have fun in the summer sun. Therefore, now may be the perfect opportunity to start learning more about MSAA’s Swim for MS initiative.

Swim for MS is a national fundraiser in which volunteers are encouraged to create their own swim challenge while recruiting online donations to support the Multiple Sclerosis Association of America (MSAA) and the MS community. Swim for MS is unique because MSAA does not plan the event – you do! Your fundraiser can be as unique as you want it to be.

Your own Swim for MS fundraiser can take many different forms. Many individuals participate in ongoing Swim for MS fundraisers as well as in one-day events. Some choose to swim outdoors, while others love the convenience of an indoor pool. In addition, many Swim for MS fundraisers involve teams filled with passionate swimmers who all have one goal in mind – improving lives for the MS community. You can see several examples of such fundraisers by visiting SwimForMS.org.

MSAA is also pleased to announce that we are giving away Swim for MS swim caps to every participant who registers for Swim for MS in May! Sign up within the next ten days to receive your official Swim for MS welcome kit, as well as our new Swim for MS swim cap! In addition to the swim cap in May, we have added one more surprise Swim for MS item to registration boxes this month. You’ll just have to register to find out what it is!

Besides the Swim for MS fundraising component, Swim for MS also features an online Aquatic Center, which contains resources for people living with MS who wish to learn more about how aquatic exercise can benefit them. For individuals who may have difficulty with traditional land-based activities, the unique properties of water combined with its cool temperature can create an inviting and sometimes ideal exercise environment for people with MS. Visit the online Aquatic Center to learn more.

You Can Contribute to Finding the Cure for Multiple Sclerosis:

Posted on May 12, 2014 by MSAA

If you are looking for a way to get involved or change the future of MS research, the Accelerated Cure Project and NARCOMS (North American Research Committee on Multiple Sclerosis) are great places to get started!

I want to bring attention to these two organizations, which you may not be familiar with and encourage you to look into their websites if you are interested in learning more about what they do.

The Accelerated Cure Project maintains an MS-research repository and also will be launching an online patient powered research effort. They focus on making sure researchers have access to the biospecimens (for example blood, or CSF fluid) they need to conduct research, and then aggregate the results of all of the studies performed using these research samples.The sharing of research information and results helps to expedite the MS research process.

NARCOMS is a voluntary MS registry with over 37,000 registrants currently. They support the increase in collective knowledge of the MS experience through surveys and other activities in hopes that the collective knowledge gained about the MS experience will be helpful to researchers and will also promote a greater understanding of 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

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.

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

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