Multiple Sclerosis Around the World

Posted on August 6, 2014 by Angel Blair

Looking at MS around the world, the Multiple Sclerosis International Federation is an international organization offering support and advocacy for those with MS throughout different countries. Their initiatives include communicating information about MS to a global audience, especially where there is little MS support. They also work and coordinate with other MS organizations to advocate for research efforts and campaigns to help those living with MS, including World MS Day each year. They have several member organizations throughout different countries, and act as an international hub of MS information and support.

With MS affecting individuals throughout the world, it is imperative to have an international resource in place to turn to when information, support, and advocacy are needed. Through publications, newsletters, and weekly MS research updates, the MSIF offers those with MS increased awareness of the disease and its impacts. The group provides an opportunity for those countries without much MS awareness to receive additional support and resources.

As MS continues to be researched and investigated across the world in regards to its potential origin and treatments, the MSIF stands as a pioneering network to keep those in MS communities around the world apprise of new developments.

For more information about the MSIF, visit their website.

Adding Up MS: Hey, What Does That Number Mean?

Posted on August 1, 2014 by MSAA

Did you know that estimates indicate that as many as 2.5 million individuals across the world may be living with MS currently? MS is generally referenced as a “rare” disease, but that number doesn’t seem small to me!

Where you are living in the world will determine a number of factors, including what diagnostic tools are available to accurately evaluate and diagnose a person with MS. After all, those figures might be harder to estimate in countries that do not have trained neurologists, MRI equipment, and other supportive medical testing. If people are not diagnosed or seeking medical care, then they are unlikely to be “counted” or projected into estimates.

Another major challenge is that many countries – including the United States – do not have an official MS Registry, which is a legislated or mandatory accounting of each person diagnosed with a particular condition within a particular country (or other geographic area such as a state). Without a registry, scientists and epidemiologists must rely on other factors to try and “guestimate” how many people in any particular area may be diagnosed with MS. These types of disease registries do exist in the United States for other conditions, such as ALS (Lou Gehrig’s Disease).

Countries such as Denmark do maintain an MS registry. Since the 1950’s Denmark has collected specific information on anyone diagnosed with MS. This type of registry has provided Danish researchers and scientists of other countries valuable information for clinical research and prospective studies. Hopefully someday the United States legislature may agree that a national MS registry could bring many benefits to individuals living with MS.

So, when you see that 2.5 million number, think of all the people who don’t see a doctor because they can’t access one or cannot afford medical care. Think of all the people who are diagnosed with something else because their physicians don’t have appropriate diagnostic equipment. Yes, researchers have tried to extrapolate an “accurate” number, but who is being left out?

When I hear that figure, I think, what does that number really mean, and how does that number impact the MS community? Does the lack of a registry leave researchers without critical information which could be collected to better understand the MS process and who is diagnosed with MS? Is less funding spent on MS research, including causes, treatment options, and individual quality of life and well-being because MS is perceived as “rare”? These are questions that cannot be answered because the true number of people living with MS is unknown, but it is still important to pose the questions.

For more information regarding projected figures of individuals living with MS around the world see the Atlas of MS 2013.

Communicating Effectively with MS

Posted on July 30, 2014 by Samantha Schech

By: Matt Cavallo

One barrier to accepting that you are now a person living with multiple sclerosis is communication. When I was diagnosed with multiple sclerosis, it seemed that every conversation I had ended up being about my MS. Whether it was family, friends or co-workers, inevitably during the conversation the person I was talking to would pause and ask, “So, how do you feel? You look great.”

While these conversations were well-intentioned, no one picked up on the fact that I didn’t want to talk about my disease. All I wanted was to do was have regular conversations about sports, work or the weather. The kind of conversations we would have before I was diagnosed. More and more I found myself avoiding conversations rather than reliving my diagnosis over and over again.

This was causing a tremendous amount of stress in my life and that stress was affecting all the relationships in my life. Whether it was at work, friends, family or my wife, all these relationships were suffering as a result of the breakdown in communication. I then realized that I wasn’t going to be able to control the way the people talked to me about my disease. If I wanted to end the stress of talking to people about MS, I was either going to have to cut everyone out of my life or change how I communicated my illness.

For me, change does not come easy. One of my 7 Steps to Living Well with a Chronic Illness, is Learning to Communicate Effectively. I believe that when you are diagnosed with a chronic illness, like MS, you go through five stages of grieving: denial, anger, fear, grief and finally, acceptance. Learning how to communicate effectively is what helped me go through these stages. Instead of losing relationships because of my MS I started to make changes that allowed me to accept my MS.

Excerpt from 7 Steps to Living Well with a Chronic Illness
Rediscovering My Purpose

I remember sitting in my doctor’s office in the spring on 2007. I had previously shared with her a draft of my memoir, The Dog Story: A Journey into a New Life with Multiple Sclerosis. She loved the passion in which I describe my writing. She said that I had an articulate, succinct way of telling my patient experience story. She also said that there was an opportunity to share my story at an upcoming patient support group meeting. Without thinking about it, I agreed to speak at the meeting.

Then on my way home, a rush of anxiety and fear overwhelmed me. What had I agreed to? I had never given a speech. I didn’t know what to say or where to start. When I got home, I talked to Jocelyn about the upcoming speech. Given all that I had been through with my disease process, she thought that it would be good for me to attend the support group in general. She also thought that I would be good as a speaker. I was skeptical…

… I put on a blue blazer, a button down white shirt, a pair of jeans and some blue tennis shoes. My cousin came with me to film the event. As we drove, the butterflies started to mount in my stomach. I walked into the hotel lobby and followed the signs to the meeting room for the support group.

In an instant I had forgotten everything that I was going to say. I started sweating and paused for what seemed like an eternity. All eyes were on me and the projector beam was like a white hot piercing spotlight in an interrogation room. The doctor introduced me and I walked to the front of the room, raised my right hand and waved.

“Good afternoon everyone!”

I collected myself and began again. Eventually I started to feel my rhythm. The sweat was no longer pouring and I found my confidence and timing. The crowd even erupted with laughter when I interjected a joke. I was surprised. It was a subtle joke, but they got it. When that happened, the words started rolling off my tongue and I told my story better than I ever had rehearsed it. The audience loved it. Everyone came up to me afterwards and said how much my talk meant to them. I was touched.

Looking back, standing up in front of that crowd and sharing my story changed the way I felt about communicating my MS. Up until that point, I was not comfortable talking about MS at all. And it wasn’t because I was sharing my story in a front of a room full of people that caused the change in me. It was everyone in the audience who shared their story with me after the talk that helped me understand that I wasn’t alone. People shared similar experiences and how hard it was to talk about their illness. Since that day, I have made it my mission to spread the word about living with MS.

If you are going through difficulty with you MS or having a hard time accepting your diagnosis, it is OK. You are not alone. Learning to communicate your story of living with MS will help you in accepting your condition. Once you learn how to effectively communicate your story with MS you will find that you are not alone and that you really do look great!

*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/

6 Ways to Support the Multiple Sclerosis Community

Posted on July 11, 2014 by MSAA

Looking for some creative ways to support individuals living with multiple sclerosis (MS)? In the following list, we’ll show you six different ways you can help MSAA improve lives today—without breaking the bank.

1. AmazonSmile— AmazonSmile is a great way to support the multiple sclerosis community without spending extra money. Simply select the Multiple Sclerosis Association of America as your charity of choice, and Amazon will donate 0.5% of the price of your eligible purchase to MSAA! Click here to learn more or to make a purchase.

2. eBay Giving Works— Do you have some things lying around the house that you’d love to sell on eBay? If so, you can choose to donate a portion of your sales to MSAA. Visit eBay’s Giving Works website to learn more.

3. Counter Punch Wine— Calling all wine lovers! Purchase wine bottles by using MSAA’s promotional code and receive a 10% discount! The best part? MSAA will also receive 10% of your purchase—helping us to continue improving lives today for people living with MS. Please visit www.counterpunchwines.com and enter the promo code: MSAA

4. CafePress— Get all your MSAA and Swim for MS swag here. Everything from bags and water bottles to t-shirts and bracelets make great gifts. Check out the full inventory.

*We’re sure you’ll love our shirts, but we can’t promise you’ll look this cute wearing them.

5. PuraVida Bracelets— Help us raise awareness of multiple sclerosis by purchasing an MSAA bracelet from PuraVida. $1 of each bracelet purchased will go directly to MSAA. Visit PuraVida’s site to learn more.

6. Host a Pool Party— Now that summer’s here, invite your friends and family to the pool and have a Swim for MS themed pool party! Provide games, snacks, music, and ask for donations at the door. Your only pool party requirements for this easy event are fun & sun! Email swim@mymsaa.org to start planning your event.

However you choose to show your support for the MS community, MSAA would like to wish you and yours a safe and enjoyable summer. If you or a loved one struggle with MS symptoms during the summer heat, please visit our website to learn more about MSAA’s Cooling Program or call MSAA’s Helpline at (800) 532-7667 ext. 154.

Keeping Your Cool During the Warmer Months to Help Manage MS Heat-Related Symptoms

Posted on June 25, 2014 by MultipleSclerosis.net

The summer months are upon us, which means warmer temperatures and the potential for a worsening in MS symptoms. Fatigue is one of the more common symptoms of MS, and it can impact a person’s mood, sleep, and overall quality of life.¹ As many of us know, there is a well-established link between MS-related fatigue and heat sensitivity,² so the warmer summer months can be especially challenging for a person with MS.

Last summer, one of the MultipleSclerosis.net contributors, Ashley Ringstaff, wrote about some of her trips and tricks for dealing with the summer heat. Since Ashley lives in central Texas, she is no stranger to brutally hot summers. She also has 2 very energetic children who love being outside, so staying in an air-conditioned house all day isn’t an option, even if she wanted it to be. Ashley’s recommends using cooling products (not just cooling vests), including those that are available through MSAA’s Cooling Program and Polar Products. She also uses an outdoor garden hose mister and outdoor fans when she is sitting on her porch, and she even likes the inexpensive handheld fans when she is following her boys around. She noted that staying hydrated, is of course, also extremely important.

Caregivers also understand the importance of helping a person with MS stay cool to minimize heat-related symptoms. Last summer, Patrick Leer shared his story about making lifestyle adjustments to help his wife during the warm summer months. He made sure to keep a cooler packed with water bottles and a neck cooler that he received at an MS walk. Patrick also mentioned unique considerations for planning a family vacation at the beach – he would book a room with a view of the beach so his wife could stay inside with air-conditioning and enjoy watching their daughter play outside in the sand. They even managed to find a beach hotel with an ice rink, which seemed to be made for families just like theirs!

Because heat can exacerbate MS-related fatigue, we recently asked our Facebook community if they experience more fatigue in warmer months, and how they manage MS-related fatigue. Here are some of the highlights from our community members’ responses:

Managing MS-Related Fatigue in the Warmer Months

Keeping cool using different devices

Soak small towels in water for your neck, face and top of your head and reload it at water fountains or hoses.
Use a cooling vest.
Carry ice packs in your pockets with a travel sized spray bottle full of cold water.
Carry a small damp towel in the spring and summer to help cool your head and face.
Use Frog Togg cooling cloths.
Wet bands that you put around your neck really help; also drink plenty of water, use air conditioners and fans.
Take cool showers.
Some individuals may benefit by wearing long sleeves and a hat when outside. Sweating is nature’s way of keeping you cool, so long sleeves can absorb perspiration and keep you cooler. Limiting time outside to 15- or 20-minute periods with rest in between can also help.

Consuming cold food/beverages

Eating crushed ice throughout the day can help.
Keeping a cold drink with you helps tremendously so you can cool yourself from the inside out. Iced beverages and popsicles help.

Other tools to combat heat-related fatigue

Exercise helps but it is sometimes difficult to shake the symptoms to get up the energy to go exercise.
Acupuncture and reflexology can help.
Try to get as much done in the morning to mid afternoon.
If prescribed by your doctor, taking a medication such as Provigil® (modafinil) that promotes wakefulness can help.

MultipleSclerosis.net moderator, Christie Germans, mentioned that she relies heavily on air conditioning as well, and she’s able to get a discount on her electricity bill due to her MS diagnosis. She recommends exploring your gas/electricity provider’s website for discounts available for medical needs. Multiple sclerosis will likely be listed in the “qualifying medical needs” list. Or, contact your neurologist’s office. You may be able to save as much as 30% on your bill! For her full response, click here.

Do you experience more symptoms in the warmer months? How do you manage MS-related fatigue?

References

1. Induruwa I, Constantinescu CS, Gran B. Fatigue in multiple sclerosis – a brief review. J Neurol Sci. 2012;323:9-15.

2. Marino FE. Heat reactions in multiple sclerosis: An overlooked paradigm in the study of comparative fatigue. Int. J Hyperthermia. 2009;25:34-40.

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.

Vitamin D and Multiple Sclerosis

Posted on June 11, 2014 by Samantha Schech

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.

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