About John MSAA

Senior Director of Digital Communications at the Multiple Sclerosis Association of America (MSAA). Lover of comic books. Player of guitars. Fan of the Sixers, also the Phillies (still, somehow...).

March 2017 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

Posted on March 6, 2017 by John MSAA

All-New Artists for MSAA’s 2017-2018 Art Showcase!

As part of MS Awareness Month, MSAA is very proud to present our 2017-2018 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:

As in the past, we will highlight one Artist of the Month throughout this year and share their artwork and their story.

Presenting MSAA’s Artist of the Month for March!

MSAA is very excited to present the first Artist of the Month for our 2017 Art Showcase:

March Artist of the Month:
Shana Stern – Los Angeles, CA
Shiver and Shake

About the Artist:
“I was a dancer, a writer, a mum, then a person with MS. The unrelenting symptoms and medications stripped everything which made me ‘me’. I was lost.

Then, I discovered painting. Unable to hold a paintbrush, I created my own unique method using my fingers and knuckles.

Those parts of me which felt lost thrive again. I don’t dance on my toes but with my hands. I don’t need words for stories just paints. My art helped me find joy, purpose and the strength and confidence to believe in myself again. I may have MS but MS does not have me.”
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Symptoms that Effect Relationships – The Infestation of Fatigue

Posted on February 24, 2017 by John MSAA

By Lauren Kovacs

Relationships can be with your spouse, sibling, friends, parents or any living thing really. Sadly, MS contaminates everyone and every thing. It is ever changing. There is usually one symptom that takes the cake.

For me, the winner is fatigue. I swear a cloud of sleepy juice stalks me. It lurks behind corners and lays on me like a wet blanket. It will mess with every relationship and can smother events.

I often have to skip functions because of fatigue. The way I deal with it does not always jive with a particular gathering. Routines with MS work well, but not every event works around your routine. MS is not always flexible. People are happy to let babies nap; however, full grown adults don’t seem to get that same level of understanding.

I take half my “awake” medicine in the morning, nap, and then take the other half. This usually helps, but caffeine gum and coffee are heavily leaned on too. Not the best options.

My spouse knows my routine. Most people very close to me know it. There are times when my routine can’t be followed. Boy Scouts, soccer games, and Taekwondo sometimes jump in the path of my routine. I bend MS, as much as I can, in those situations.

The biggest effect of this is guilt. I fight guilt over missing the Pinewood Derby because I had to be at Taekwondo in the morning. I have guilt because I had to miss a soccer game because I have to nap. My parents had to go instead. It is a ripple. Asking for help often rolls into guilt.

I have to rest and miss some things and rely on my spouse, parents, or whoever. I deal with this balancing act all the time. I try not to tip the scale. Guilt and pride are always battling.

The guilt of asking for help and the pride of doing it myself tip back and forth constantly. People get mad because you didn’t ask for help, but the guilt of being a burden is often worse.

We carry heavy and complex weights to the scale. You have to try and balance that scale. Do the best you can. Others often do not see this part of MS. Getting those scales to balance can cause fatigue. Take a deep breath, do what you can, and have some chocolate.

January 2017 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

Posted on January 6, 2017 by John MSAA

MSAA is very proud to present our 2016-17 Art Showcase – celebrating the work of artists affected by multiple sclerosis (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.

Marion Carney-Howard – Cleveland, OH
Winter Fun

About the Artist:
“I’m currently a house wife with three sons and three stepchildren for the past year since taken ill. I’m 48 years young and love art, music, dance as well swimming. I’m not a professional artist and sometimes surprise myself at my ability. I think I get my artistic flare from my dad who was a professional artist and photographer.

My art reflects my inner being. My submission is a memory I had of my sons playing outside with their friends and how much fun they were having. The medium I use is Paint Shop Pro and Polyvore as well acrylics and watercolor.”
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December 2016 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

Posted on December 2, 2016 by John MSAA

MSAA is very proud to present our 2016-17 Art Showcase – celebrating the work of artists affected by multiple sclerosis (MS).

Paula Breiner – Tamaqua, PA
Snowy

About the Artist:
“I started painting last August to help strengthen my hand, to better my thinking and concentration. I haven’t drawn or painted since high school back in the 80’s. I find painting to be very relaxing and stress free, which is what an MS’er needs in their life.

I was diagnosed in 2006. My husband is my rock, I don’t know where I’d be without him. I belong to an amazing support group and we have all become family, I love and cherish each of them. We have 2 beautiful daughters and 4 amazing grandkids. I do lots of crafts with my grandkids and we all reap the rewards. I have MS, it doesn’t have me. One day at a time.”
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Working Together with the Spasticity Alliance

Posted on November 23, 2016 by John MSAA

By Kyle Pinion, MSAA’s Director of Advocacy and Public Policy and Southeast Regional Director

Have you ever woken up one day and found that your legs have painfully, and involuntarily, tightened? Or perhaps you were sitting in your favorite chair one afternoon while watching the football game and in the middle of a great play realized that your arm muscles clenched in a way that was incredibly uncomfortable. Those who are living with the progressive forms of multiple sclerosis are likely to understand this symptom all too well: spasticity is a tightness of the muscles, typically occurring in the legs, groin, and buttocks, though not exclusive to just these regions. While treatable in ways that can potentially reduce its effects, this symptom of the disease can be very debilitating and contribute to disability.

What you may not be aware of is that those living with MS are not alone in experiencing this troubling manifestation of their disease state. Many other condition-based populations see the effects of spasticity first-hand, such as those who have suffered a stroke, people living with cerebral palsy, and even those who have dealt with traumatic brain or spinal cord injuries. As such, advocacy organizations that represent each of these conditions recognize that greater amounts of information and resources are needed to help people living with spasticity grasp a better understanding of its effects and how to best seek treatment. To that end, the Multiple Sclerosis Association of America, United Spinal Association, United Cerebral Palsy, National Stroke Association, and the Brain Injury Association came together in June and initiated the planning process for what would turn into the Spasticity Alliance.

As MSAA’s representative for our regular Alliance meetings, it’s been fascinating to learn about the larger scope of spasticity’s effect on other disease states beyond our own organization’s purview. I’m so thankful to be able to share not only resources that have proven to be mutually beneficial, but also stories of people who experience this troubling symptom on a day-to-day basis.

When the Spasticity Alliance website launched in July, the outpouring of support from both the patient and professional communities was utterly overwhelming, as many deeply appreciated this pooling of efforts by advocacy organizations to provide resources and educational material for those living with this challenging and painful manifestation of these individual conditions – a manifestation that is all too little discussed. As we close out 2016, we’re looking forward to the further growth of the Alliance website, with very exciting plans on the horizon to make it an even more engaging and informative experience for our clients when they visit.

In the meantime, if you or someone you know has experienced spasticity, please visit the Alliance’s site at spasticityalliance.org. If you have any further questions regarding issues related to this symptom, please feel free to reach out to our Client Services department at (800) 532-7667, ext. 154 or via email at MSquestions@mymsaa.org.

Additionally, if anyone living with MS, or their family members or friends, would like to share their story for the Alliance’s site, please do not hesitate to reach out to MSAA and we’d be happy to discuss this with you further. Your stories really can make a difference through encouragement, fellowship, and education.

New Recipe of the Month – Gram West’s Pumpkin Pie

Posted on November 21, 2016 by John MSAA

Today’s recipe is from our dear friend, Lynn, in South Jersey…Lynn writes:

At Thanksgiving, more than any other time of year, I’m reminded of my Grandmother (“Gram”) who passed away from a neurological condition in 2010. Growing up in South Jersey, I only got to see Gram twice a year: once when she and my grandfather came to visit us in NJ, and then again when we visited them for Thanksgiving. I always remember spending time with just her in the kitchen, making pumpkin pies to enjoy after our Thanksgiving meal. It was “our thing,” and we always loved watching our family fight over who got the biggest slice of pie. This time spent with my Gram is something that I will always treasure, and to this day, I honor this memory by making pumpkin pies for any winter family holiday, using the following recipe which she handed down to me.

– Lynn, in South Jersey

Gram West’s Pumpkin Pie
(Makes 2 pies.10 minutes to prepare, 70 minutes to cook.)

Ingredients:

2 unbaked pie crusts (I use Pillsbury Pie Crusts)
4 eggs, beaten
1 can (29oz) pumpkin OR 3 3/4 cup freshly cooked and mashed pumpkin
2 cups firmly packed light brown sugar
2 tablespoons flour
1 teaspoon salt
1 tablespoon pumpkin pie spice
1 heaping teaspoon cinnamon
1/2 teaspoon ground nutmeg
1/2 teaspoon ground ginger
1/2 teaspoon ground cloves
12oz can evaporated milk
12oz regular milk

Directions:

Preheat oven to 425 degrees.
Lay pie crusts in pie plates, and flute the edges if desired. Put each pie plate onto a small cookie sheet (this makes for easier insertion and retrieval from the oven when you bake them). Cover the edges of the crust with a pie crust shield. If you don’t have one, you can use aluminum foil. This will help keep the crust edges from burning.
In a large bowl, combine the eggs and pumpkin.
Blend in the brown sugar, flour, salt, and all of the spices. Mix well.
Add the evaporated milk, then fill the can with regular milk and add that. Mix well (be careful, it splatters easily).
Pour the pumpkin mixture into the pie crusts.
Bake at 425 for 25 minutes.
Reduce heat to 350 degrees and continue baking for 40-45 minutes, until a knife inserted near the center comes clean. (Depending on your oven, you may need to bake longer.)
Cool the pies. Once cool, store in refrigerator.

*We hope you enjoy our Recipe of the Month selections on MS Conversations. Just remember: these entries may not necessarily be a part of an MS-specific diet; these are simply recipes compiled from MSAA staff and friends either from their own family recipe collection or based on recipes we think you might enjoy. As always, make sure to consult your doctor about any food or nutrition questions as they relate to your MS.

November 2016 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

Posted on November 4, 2016 by John MSAA

MSAA is very proud to present our 2016-17 Art Showcase – celebrating the work of artists affected by multiple sclerosis (MS).

Susan Russo – Pearland, TX
Honor and Sacrifice

About the Artist:
“I was diagnosed with RRMS in 2001. This disease has changed my life in an amazing way. Funny how diseases tend to do just that. You either give up or battle on. I choose to battle on.

I’m not perfect. I have rough days. I cry. I get angry. But then, I pick up a paint brush and I start to create whatever I am feeling. I get lost in a beautiful world of lines and shades and colors. The creation of something visually beautiful helps me to refocus on the fact that I am so much more than my MS.”
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October 2016 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

Posted on October 3, 2016 by John MSAA

MSAA is very proud to present our 2016-17 Art Showcase – celebrating the work of artists affected by multiple sclerosis (MS).

Dani Red Hawk – Greenville, SC
Blood Moon

About the Artist:
“My art production is a bit improved over last year. If I could just beat away the fatigue I might really churn some art work out. However, while not always satisfied with each piece, I am most grateful for the completion.

It is such a joy to participate in the MSAA Art Showcase! To my fellow artists: You have brought much inspiration and enjoyment to not only me, but friends who have perused the website. I hope this past year has been a good (or good as can be expected with MS) one for you all.”
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September 2016 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

Posted on September 7, 2016 by John MSAA

MSAA is very proud to present our 2016-17 Art Showcase – celebrating the work of artists affected by multiple sclerosis (MS).

September Artist of the Month:
Karen Bloom – Kendallville, IN
Fall Leaves

About the Artist:
“I was diagnosed with MS in 2008 and was a paraplegic within a year. Because my legs were affected so drastically, I expected the same of my arms/hands and gave away all of my oil painting supplies and most of the artwork I loved.

I began venturing back out into the world and taking risks, including trying painting again. It turns out I should not have given up on my artwork for over six years. My hands are still mine!”
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August 2016 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

Posted on August 1, 2016 by John MSAA

MSAA is very proud to present our 2016-17 Art Showcase – celebrating the work of artists affected by MS.

August Artist of the Month:
Carol Tomlin – Woodbine, NJ
Summer at Old Faithful Inn 1904

Carol Tomlin - Summer at Old Faithful Inn 1904

About the Artist:
“In 2003 I began stumbling while scouting for deer hunting areas with my husband Clarence. I was soon diagnosed with MS. Hands now shaky, I can no longer enjoy painting and even had to leave my job. With time on my hands I continued to exercise by working the family farm.

Determined to paint again, I had a cabin constructed on the place where my husband and I loved to sit together and watch the wild game in the back yard. There I found the peace I needed to steady my hand and paint again.”
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