About Kyle

Vice President of Mission Delivery at the Multiple Sclerosis Association of America (MSAA). Kyle watches over an average of 200 movies a year, loves Sci-Fi/Fantasy novels, all things Japan, and could give a lecture on the history of comic books.

Spring Cleaning and MS

With the spring months upon us, so too comes the annual spring-cleaning tradition…”out with the old, in with the new,” isn’t that what they always say? And for many, the decluttering process is a very therapeutic activity, making your home interior both more aesthetically pleasing and increasing the accessible nature of your environment. But this type of deep cleaning of your home can also be quite taxing, even for those who are able-bodied and not living with a chronic condition like multiple sclerosis.

For those who are considering a potential “spring cleaning project”, but are concerned about their ability to do so, here are a few helpful tips to keep in mind:

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The Affordable Care Act and Multiple Sclerosis

The Patient Protection and Affordable Care Act (PPACA or ACA for short) passed in Congress as a landmark piece of legislation with the intent of securing more accessible healthcare for all Americans. At MSAA, we often receive calls with clients curious and/or concerned about what these changes to the healthcare landscape may entail for them. The Affordable Care Act has enacted numerous changes to both private and public health care coverage (this includes Medicare and Medicaid).

On the private insurance side, here is a short list of just a few reforms that will be enacted starting October 1st:

1. Pre-existing condition exclusions have been eliminated, and insurers can no longer deny applicants based on their MS disease status.
2. Insurers must justify any monthly premium increase of 10% or more before it can take effect.
3. No consumer will be subject to yearly or lifetime benefit caps, which was a major issue for those with MS.
4. If you need to purchase a private plan insurance, it will now be offered through an Enrollment Marketplace in each state.

For Medicare and Medicaid:

1. The percentage for what you pay inside the Medicare Donut Hole will be decreasing every year until it is closed in 2020 and the out of pocket expense will be 25% of the plan’s medication cost.
2. Medicare beneficiaries will receive free wellness exams every year to ensure adequate preventative care.
3. As for Medicaid, for those states that elected to participate, the eligibility criteria will expand to 138% of the Federal Poverty Level or $32,499 for a household of four, for example.

These are just a few of the major reforms that will be taking place under the provisions of the ACA. MSAA has enacted a new initiative to expand education on this topic, including webinars that will focus individually on the changes to Medicare and private insurance.
The first webinar, “Understanding Medicare in the New Era” will take place on October 15th at 8 pm and will be presented by Katherine Fitzpatrick of the Medicare Rights Center and MSAA Client Services Manager, Margaret Weisser and registration is currently open. Registration information for the second webinar on the new State Marketplaces and Private Insurance is forthcoming.

You can register for the Medicare Webinar at: support.mymsaa.org/aca1
We look forward to “seeing” you there!

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Bridging the Communication Gap Between Parents with MS and their Children in Georgia

On Saturday, April 27th, the Multiple Sclerosis Association of America (MSAA) in collaboration with Children’s Hope for Understanding Multiple Sclerosis (CHUMS) held a program entitled “Bridging the Communication Gap between Parents with MS and their Children” in Duluth, GA at Dave and Busters. The program which focuses on heightened communications between family members about multiple sclerosis (MS) was presented by Dr. David Rintell from Partners Pediatric MS Center at Brigham & Women’s Hospital in Boston and Sue Rehmus, Founder of CHUMS and Vice Chair of MSAA’s Board of Directors. The program is unique in that it is split into two facets, as parents receive a presentation from Dr. Rintell in one room while their children spend time with Sue in another area. Both groups work on learning strategies on how best to understand and talk about MS and the many issues come along with that diagnosis in the family dynamic.

The program in Duluth, which is the first in a series of these programs that MSAA will be facilitating, was wildly successful as 20 families participated. In the parents’ session the group learned about communications strategies relating to MS, as well as how to best enumerate on the various issues that may arise on a daily basis with children that may not have a firm grasp on the disease and its associated symptoms.

In the children’s room, the participants who ranged from ages 6 to 18, engaged in a number of “hands-on” exercises. The various activities enacted by the group included a the concept of “trying on” the symptoms of MS through household items, like blurry glasses, macaroni in shoes, and wearing gloves while trying to turn the pages of a magazine. These efforts gave a greater perspective to the children on what their parent with MS may experience on a day-to-day basis. One child specifically said, “I couldn’t wait to take those glasses off, but it makes me sad to think that my mom never has that choice.”

“Bridging the Communication Gap between Parents with MS and their Children” is a phenomenally multifaceted program that engages all levels of the family into the MS experience, please take a look at our calendar and see if this program is coming to a city near you this year. We’d love to have your family experience this opportunity!


Group picture from the program "Bridging the Communication Gap between Parents with MS and their Children."

Group picture from the program “Bridging the Communication Gap between Parents with MS and their Children.”

Dr. David Rintell from Partners Pediatric MS Center at Brigham & Women’s Hospital in Boston speaking with the parents at our April 27 CHUMS program.

Dr. David Rintell from Partners Pediatric MS Center at Brigham & Women’s Hospital in Boston speaking with the parents at our April 27 CHUMS program.

Sue Rehmus, Founder of CHUMS and Vice Chair of MSAA’s Board of Directors, getting ready to start the program with the children.

Sue Rehmus, Founder of CHUMS and Vice Chair of MSAA’s Board of Directors, getting ready to start the children’s portion of the program.

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Aquatics and MS

As we begin the new year, many of us will make a pledge to get more fit this year. As we heard from our PT specialist anyone with MS needs enter into an exercise routine with the supervision of a trained professional. With that said I would like to share my experience this summer with adapted aquatics.

This past summer I was able to experience a unique opportunity of an adapted aquatics class at the Shepherd Center in Atlanta, GA. As Swim for MS is a major part of MSAA’s work to enhance the quality of life of everyone affected by MS, and adapted aquatics is often a go-to complimentary wellness option for individuals those living with the MS, I was asked to take part in a local adapted aquatics class at Shepherd Center. Throughout my career, I’ve often recommended aquatic exercise for anyone looking for an exercise or social activity, but ironically I had never taken part in it myself. So on a weekday morning in mid-August, I jumped into the pool with five MS patients and got to work on some really fun and useful exercise techniques.

The class I participated in was for those considered “ambulatory patients” while a separate class for non-ambulatory patients was offered afterward. With adapted aquatics, everyone gets an opportunity in the pool!

The class began with standard stretching, and then leg strides from one end of the pool to the other, on the shallow end of course. During these initial exercises, I was able to get to know some of my fellow classmates and learn a little bit about how they were diagnosed and just what their day–to-day experiences with MS are like.

The class then picked up as we began to use underwater step-stools to exercise our leg muscles, while also utilizing balance techniques, this last exercise was one of the more challenging! . This was the point where I struggled the most. Finally, in the third portion of the class, we used water weights to exercise both our triceps and biceps. It was neat to see how water actually creates greater tension when using the weights than the fairly weightless pieces of equipment create on their own. All the while, I was making great friends of my classmates, talking to them about MSAA and some of our services and helping encourage them at any point of struggle. The look of sheer accomplishment on each class member’s face when they were able to get through an exercise they felt difficult was really inspiring!

In all, this was quite the eye opening experience. The value of these kinds of resources are incalculable. If you happen to live near an area with an MS-specific aquatic exercise class, please make sure you take advantage of it! Beyond just the wellness quotient, you get a chance to make some really good friendships as well!

For more information about aquatic exercise in your area, call contact our Client Services Department at(800)-532-7667, extension 154 or email: msquestions@mymsaa.org.

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Social Media and MS

Staying connected while feeling isolated is often difficult. Many living with multiple sclerosis (MS) venture to a local support group or in-person education program to seek out those who are also living with MS, but due to a lack of time, geography and other limitations, these options are not always available.

Luckily, in this new digital age, there are other options that exist through social media. These wonderful tools can help to keep you connected to your local community, and the rest of the world at large.

The easiest and most widely used tool for most is Facebook (www.facebook.com). Everyone is on Facebook – children, parents, grandparents, everyone you went to school with, and beyond! The most relevant part of this tool is that a number of great MS resources have pages including MSAA, local support groups, and even MS treatment facilities.

Another option is Twitter (www.twitter.com). Twitter is known for being the go-to social media outlet for celebrities, politicians, and others in the media. The idea behind Twitter is to push out information in very small bites (140 characters max). Try searching #multiplesclerosis using Twitter’s search function and you will be amazed at the conversations you’ll be able to strike up.

Are you looking for a venue to share your viewpoints or creativity with the world? Or simply seeking a sounding board? Consider Tumblr at www.tumblr.com or WordPress at www.wordpress.com. Both sites allow its users to create and customize blogs to share their feelings and thoughts on a variety of topics that can then in turn be shared with friends via email, or other social media tools like those above.

While these are just a few of a multitude of the new social media tools available, they are four widely used options allowing you to stay connected to the world without ever leaving your home.

You can connect with MSAA on Facebook: www.facebook.com/msassociation and Twitter: www.twitter.com/msassociation

Please also check out MSAA’s YouTube channel http://www.youtube.com/msaalink and Pinterest page http://pinterest.com/msassociation/link.

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MSAA’s Educational Programming

One of the hallmarks of the Multiple Sclerosis Association of America’s (MSAA) services that we provide on a regular basis to individuals living with MS are educational programs that include “thought leaders” in the MS field. These programs offer the MS community timely and vital information.

As a Regional Director at MSAA, it is my job to make sure that these programs are exciting, informative, intimate, and frankly, a good deal of fun.

In the planning process for these programs, it is incredibly important to us that these educational programs are truly interactive opportunities that allow people living with MS and their families or friends the chance to speak in depth with the presenting physician. It is our hope that these educational programs allow you to get that burning question answered that you’ve always wondered about in regard to a disease that, for many, is quite mysterious.

Across the country we have held educational programs on a wide variety of topics such as:

New and emerging therapies for MS

Symptom management in MS

The benefits of physical therapy

Programs such as our in-person S.E.A.R.C.H. series that overviews not only our new S.E.A.R.C.H. tool kit but also how it can apply in your regular interactions with your physician and care team in choosing the right MS therapy for you.

With five Regional Directors working hard to produce high-quality programming, it’s very likely there is an in-person program coming to your area. Please visit our calendar of events today!

We’d love to see you at one of our events!

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