Thank You Readers! My One Year MSAA Blog Anniversary

By Matt Cavallo: 

It was one year ago at this time, I started volunteering two blogs a month for MSAA. I was thinking about it today as my oldest son got ready for his first day of first grade. One of my first blogs was a back to school blog about parenting with MS, where I cried as I watched him go to school for the first time. I have shared many memorable blogs with MSAA since that time. From the one about a stranger “paying it forward” and buying my meal when he heard my MS story, to my recent birthday blog, each story is intended to provide inspiration and hope through my own journey.

My favorite part about writing the blog for MSAA is interacting with you, the readers. I have met so many wonderful people along this journey. Whether it has been through my personal website or social media, many of the readers of this blog have reached out to thank me for my contributions to this blog. I can’t tell you the tears of joy I experience from all of your feedback. It has been a pleasure sharing my stories here, and I it touches my heart that they are meaningful to you.

Thank you again for all the great feedback throughout the year. I promise to continue writing these personal blogs and sharing my stories and experience with you. Being able to connect with patients like myself makes it worth it. Together, we are making a difference in the lives impacted by MS. Take care and keep up the good fight!

Resource:
Parenting with MS – http://blog.mymsaa.org/parenting-with-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/

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Mining the Web for MS Resources

By: Matt Cavallo 

**Disclaimer: For any new or worsening MS symptoms, please contact your doctor immediately**

The internet is full of good (and not so good) information about multiple sclerosis. There are trusted sources, personal blogs, and social support groups regarding MS. Like everything else in life, when seeking more information about the disease, you must consider the source. The following blog will discuss some online traps that I have fallen into and how to avoid them.

In my mind, a good site for healthcare information should never promise a miracle or solicit patients for money. For example, I was following a very compelling Facebook thread posted in an MS support group linking to the story of a patient. I’m a sucker for a good story, so I started reading about this person and how they overcame all of their MS symptoms. At the bottom of the page, there was a link to their “miracle treatment,” and it brought me to a multi-level marketing website ad for some vitamins.

They drove me to the site with a good story, but their promise of a cure for MS was way off base. Multiple sclerosis is a chronic condition with no known cure, so to promise the people who click on this website a cure is false advertising. Be skeptical of buying any supplement that is either not prescribed to you by your doctor or that you have not discussed with your doctor prior to purchasing. This goes for assistive devices, as well. Before considering any assistive devices, contact your doctor or insurance company to see if the device is approved. You may get an idea from a website, but by going through your doctor and insurance company, you may find that the device, or a similar device, is covered.

As for trusted information, my favorite site is MSAA. In fact I like them so much, I am a contributing blogger for them. I found MSAA because I was looking for educational material to help explain MS to my young boys. What I found was a free picture book that I read to my boys that helped explain daddy’s condition. I found other resources, like their online Relapse Center. Every resource on the MSAA website is evidenced-based and peer- reviewed, so I know that the information is coming from a reliable source.

Another source for MS information that I trust is Healthine.com. Healthline takes complicated medical terms associated with MS and other chronic illnesses and puts them into slideshow format in words that are easy to understand. They also have great weekly columns from fellow MSAA blogger Jeri Burtchell and provide links to MS resources. MSAA and Healthline are my two personal favorite websites to find objective, clinically reviewed information about MS.

Social media is also a great place to find MS support groups and information about the disease. I belong to several social media support groups where members interact online. If you are going to engage in these activities, you must keep in mind personal biases. Participate in an online support group for support, but not for medical advice. These groups are great when you are having a bad day and want validation from your fellow MSers, but I have also seen solicitations or treatment recommendations based upon personal bias. Remember, you and your doctor should make all treatment decisions together, and what you read in an online forum may not be entirely accurate.

The internet is a great place to mine MS resources. There are trusted sources, like MSAA and Healthline, great personal MS blogs, and social media support groups. Just remember to be aware that some of these sites may be trying to solicit, not support you. Any research-based article will say something to the effect of “clinically reviewed” or have a clinical reviewer in the credits. Any website that promises you a cure is a red flag to stay away.

As a person living with MS, the best thing you can do is educate yourself to the disease and others’ experiences living with the disease. The internet is a great place to find resources, but make sure that you can trust the source. Let me know if you come across a good MS site that I haven’t mentioned. Happy mining!

MS Web Resources:
MSAA – http://www.mymsaa.org/
MSAA Relapse Resource Center – http://relapses.mymsaa.org/
Healthline Multiple Sclerosis Center – http://www.healthline.com/health/multiple-sclerosis

*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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August 2014 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

MSAA is very proud to present our 2014 Art Showcase - celebrating the work of artists affected by MS.

We have received many wonderful submissions from across the country and are delighted to share their work and their stories with you. Please visit our online gallery to view all of the new submissions.

August Artist of the Month:
Jennifer Attwood – Parker, CO

 Jennifer Attwood - My Little Piece of the Ocean in Colorado.

About the Artist:

“I have RRMS and was diagnosed with MS in 2007. I have received a much-needed ice vest and the approval of assistance with my brain scan MRI. I have taken up watercolor art media in the last year, 2013. A gift from my sister was a fantastic collection of brushes and paints. I have had many careers and led a very active life until I lost my job in 2009. I have a studio degree in Art education, but didn’t fall back on my degree until 1995…”
Read more

Be inspired – please send an online card featuring artwork by MS artist Jennifer Attwood and spread awareness of MS and MSAA.

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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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