Celebrating My Birthday Despite MS

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By: Matt Cavallo 

This weekend we were celebrating my birthday. A birthday is generally a cause for celebration, but when you are living with multiple sclerosis, sometimes you don’t feel like celebrating. Especially if you live near Phoenix and high temperature on the day of your celebration was 111 degrees. I was feeling fatigued, overheated, and wanted to stay in bed all day. I was considering cancelling the dinner, but there was one party guest that had been waiting months for this night.

I had promised my son that we would go to Rustler’s Rooste, a famous Phoenix steakhouse, known for serving Rattlesnake. My oldest son is currently obsessed with snakes. A couple months back, he attended a birthday party that had an entertainer with exotic animals. At that party, he got to handle a snake and has wanted one ever since. I made the mistake of mentioning to him that a Phoenix steak house served Rattlesnake as an appetizer. He made me promise that I would take him for Rattlesnake. Even though I didn’t feel like going out, he needed me to live up to that promise.

As I laid in bed before I needed to get up and get ready to go to the steakhouse, I contemplated how MS had stopped me from going to other social events in the past. For a period of time, I had isolated myself from my friends and family because of how I felt. It got to the point where people stopped inviting me to events because they knew I wasn’t going to show. Now, here I was on the verge of letting MS fatigue and heat intolerance affect celebrating my own birthday and sacrifice the promise I made to my son.

As the clock ticked closer to our reservations, my fatigue and heat intolerance were not letting up. Neither was my son’s talk of finally getting to live his dream of eating Rattlesnake. I had a decision to make: was I going to let MS win and stay home, or was I going to fulfill my promise to my son?

Despite the MS fatigue and heat, I rose to the occasion. I took an ice cold shower, and we went over to the steakhouse. The boys had a great time, and so did I. I was happy that I had forced myself to go. Cooling myself down helped me handle the heat. More importantly, I didn’t let my MS keep me from making memories with my boys. The biggest surprise was that my boys liked eating the Rattlesnake. My oldest said it tasted liked fried chicken!

*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/

 

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6 Ways to Support the Multiple Sclerosis Community

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.

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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.

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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

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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.

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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.

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Why I Choose to Medicate for my Multiple Sclerosis

I know that there are a lot of people with Relapsing forms of MS who wonder why we are encouraged to medicate. Especially, when these medications do not ‘stop’ progression, but have only shown to slow progression. It’s a big decision to make when choosing to medicate, if you do plan to do so.

I can honestly say that looking at the ‘world of MS’ from 20 years ago to now, it seems that disability rates have improved, along with patients Quality of Life.

I know that a lot of the MS medications available have side effects that are associated with the treatment, but the way I look at it is, at least we have options. We aren’t without medications to help slow our progression anymore. We also don’t have to all take ONE certain medication either.

I haven’t been one of those patients with MS, who gets on and stays on the first medication that I chose. Not one medication works for everyone living with MS. I have changed medications multiple times since my diagnosis, not because I ‘wanted’ to, but because I needed to.

So, the question people ask me a lot is, “Why do you choose to medicate, if you have failed multiple treatment options?” This isn’t an easy question to answer by any means. For one, I’m scared. I’m scared of the unknown… I’m scared to know what would happen if I didn’t medicate. Even though these medications don’t promise to STOP progression, they have shown to slow it… and I really don’t want to know what my life would be like if these medications weren’t slowing at least some of my progression.

Another response I have is, why not? What do I have to lose? Before I actually got diagnosed I was miserable and could barely function, and ended up being in a wheelchair. (I am no longer in a wheelchair, by the way.) I’ve already been at my lowest and it’s not somewhere I want to go again.

Whenever you read anything about multiple sclerosis, it states that it is a progressive illness. I don’t want to take my chances to see just how ‘progressive’ my disease can be.

So, as long as there are options available for me try, I will. I know that having flu-like symptoms with an interferon, or GI issues with Tecfidera aren’t pleasant, but the truth is, it could be a lot worse if we don’t deal with those side effects and get on a treatment.

Now I’m not just saying I play ‘eenie-meenie-minie-mo’ to choose a medication – this takes a lot of research and discussing these options with my neurologist and family. Something I use when wanting to compare the medications is MSAA’s S.E.A.R.C.H. Program. There are many resources available to those with MS when trying to decide which medication to take, so make use of them.

The medications available to MS patients have been increasing since I was diagnosed in 2010. Try to stay informed and educate yourself about what’s going on with MS Clinical Research. This way you know if a new medication for MS is on the horizon.

MSAA even has a Research Update publication that you can check out to learn more. As most of you know, I’m a volunteer for MSWorld.org, and we attend Multiple Sclerosis Conferences, helping to keep everyone at home up-to-date on all things MS. You can view all of MSWorld’s Conference Coverage at the Conference Center or YouTube Channel.

Best Wishes!

Ashley Ringstaff – Volunteer for MSWorld.org

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MSAA Attends 2014 Consortium of Multiple Sclerosis Centers

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. CMSC Booth

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:

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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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How do we know if we are doing a good job?

by Kimberly Goodrich, CFRE, Senior Director of Development*

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As the debate continues around ratings, ratios, and watchdogs, nonprofits around the country are focused on how to accurately communicate their value. If ratings do not suitably portray the efficiency of an organization’s operations – then how do we know our dollars are being well spent? What is our impact?

Impact, in the nonprofit world, refers to the change in behavior that is a result of the activities and resources provided. For example, an organization provides a class and information on the health risks associated with smoking cigarettes, and finds that 42 percent of attendees stop smoking, resulting in higher scores on overall health measures at their next checkup. If their mission was to improve health scores by decreasing the number of smokers, then this organization can clearly state this as their impact.

MSAA’s mission is to be a leading resource for the MS community and improve lives today. But how do we measure improvement? And how much improvement is enough? In the previous example, if the smoking-cessation classes improved health scores by 50 percent, this sounds great, but what if they only improved by 5 percent…is that enough? If 5 percent kept that person from having a heart attack, would it then be enough?

The improvement of a life is not easily shown on a graph or a financial statement. Sometimes we need to hear the stories that accompany the percentages and the ratios, the revenues, and expenses. The stories that remind us why we do what we do.

“From the bottom of my heart, I thank you – all of you, for helping me to live independently [through MSAA’s free equipment distribution program]. I put my shoes on by myself!! It has been years since I have done that! Thank you for the leg lifter. It lifted my spirits too!” -F from South Carolina

This is not to say that numbers do not matter. Last year, 1,040,554 people accessed our website for information – 814,776 of them for the first time. That’s a significant number of people who can have their spirits lifted and their lives improved.

MSAA has been able to improve these lives because of an increase in the number of generous donors who support us in this mission. We are incredibly thankful for this growing number of people who, through their vital contributions, experience the joy of creating an impact – and improving lives today!

*About Kimberly

I am the Senior Director of Development at MSAA and have worked in the nonprofit arena for over 15 years. I love reading, running, theatre and the Green Bay Packers. I volunteer with the Disabled American Veterans teaching outdoor sports like skiing and kayaking to injured veterans and find that I receive much more from them than I am able to give.

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Latest Issue of The Motivator Now Available for the MS Community

savas2The 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!

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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

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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

 

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Time to Cool Down – Cooling Vests for MS Heat Sensitivity

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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 http://mymsaa.org/msaa-help/cooling/.

*Please note the program eligibility requirements within the application.

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New Year’s Resolution Follow Up

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/

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Spring into Action

Spring into Action

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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Is There a Relationship Between MS, Allergies and Histamine?

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

*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/

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