Cool Summer Activities

Posted on June 5, 2015 by Samantha Schech

As most schools around the country end their school year, many parents are finding themselves searching for activities that will preoccupy their children, but that are also accessible for the whole family. While many folks may opt for the parks or playgrounds in the warmer weather, individuals with MS may have to get creative to try and find activities that can be taken indoors during those warmer days to help avoid some of those heat-related symptoms.

But how can you entertain your children, before they tear through every cabinet in the household looking for something to do? Parents magazine provides some online fun activities that can be modified for any age group. Thinking about, or having a list of activities on hand may be helpful for days where MS symptoms are present, or fatigue has taken a toll.

Local programs are also available to children during the summer months. Many of these activities can be completed indoors to help beat the heat. Local libraries may have reading programs or special events; often they post these on their social events calendar or on a bulletin board in the lobby. Stores like Lowe’s, Home Depot or Joann Fabrics have free workshops available for families or children; you can call around to local stores to see if a calendar or events listing are made available.

Get creative this summer and see what fun activities you can find that can be completed indoors. Do you have any cool plans this summer?

Communicating about Multiple Sclerosis with Young Children

Posted on March 4, 2015 by Samantha Schech

The diagnosis of a chronic illness such as multiple sclerosis (MS) has the capability to challenge a family on multiple levels. As if the diagnosis of a disease such as MS was easy to explain and discuss with adult friends and family members. Explaining the diverse symptoms of MS to a young child is a new challenge all in itself.

Deciding when to have a conversation with your children regarding the MS diagnosis is a personal decision that every family should discuss. Children are by nature, curious individuals. They may pick up that things have changed, or that Mommy or Daddy is acting differently. Depending on the child, some families may choose to introduce information about the disease early on.

MSAA has published two books to help guide families through this conversation with young children. Mommy’s Story and Daddy’s Story are geared for children age’s three to seven, to provide a starting point for future conversations regarding an MS diagnosis.

For on-going supportive information for children, the National MS Society also publishes a newsletter, Keep S’myelin to provide stories and activities regarding different challenges a parent may face with relation to MS.

If a child appears to have a difficult time with the adjustment to a new diagnosis in a parent, it may be helpful to seek additional professional support. A child therapist can help the child to express some of the fears or concerns that they are having. Different modalities such as art or music therapy can help young children who may not verbally be able to explain how they are feeling.

Do you have young children, and have you spoken with them regarding an MS diagnosis? What resources were helpful to you during this time?

Celebrating My Birthday Despite MS

Posted on July 14, 2014 by MSAA

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/

Did Cupid Miss? Finding True Love Wherever it Lies

Posted on February 26, 2014 by MSAA

By: Jeri Burtchell

Ah, February! The prelude to spring and the time of year when happy couples profess their love for one another on Valentine’s Day. What could be wrong with that?

Well, sometimes real life falls short of “Sleepless in Seattle”. A study published in 2010 says that folks with MS have a greater likelihood of ending up divorced than other couples. Odds are, someone with MS who is reading this spent Valentine’s Day alone. No amount of chocolate can make that pill any less bitter to swallow.

When I learned the MSAA blog theme for February would be “love”, I decided to explore the less traveled paths to the heart. Instead of romantic love, this is for all of you who are facing MS head-on and doing it solo. For everyone who thinks the groundhog predicted six more weeks of loneliness.

Everywhere you look in early February, friends are doting on their better halves in tweets and status updates. Pictures of happy couples abound. Even those with MS seem happily connected to the “best husband ever” or “the most amazing wife.” You don’t see anyone saying “I’m single, yay me! I’m doing just fine.”

But there is love beyond romance and I want to draw your eye to it. If you focus on the love that you do have, then perhaps it will ease the sting of having to say “table for one, please.”

Most of us have the love of family that surrounds us. Think about that sister or brother, mother or father, aunt or uncle who is there for you. Helping you cope, caring how you feel, sharing good times and bad. That is love.

Even if you are divorced, there’s a good chance you have kids. They love you, right? Don’t roll your eyes at me that way. Romantic love may come and go, but the bond between parent and child will last a lifetime. That is also love.

No kids, no family, no significant other? Don’t stop looking for the love that seems elusive. Just look a little closer. You may be overlooking a love right under your nose. Literally. Look down. See some little eyes in a furry face looking back up? That, my friend, is love…or it could be hunger. (Nah, it’s probably love).

The unconditional love of a pet is real and powerful. Besides love, the Centers for Disease Control says that having a pet can lower our blood pressure and triglyceride levels, plus chase away our loneliness. They also give us a reason to exercise and opportunities to socialize while we’re at it. Just ask Sheryl about her Teeny Tiny Mighty MS Mascot.

What’s that you say? You have no family, no close friends? Your kids are grown and gone? You’re allergic to pets? All hope is not lost. The camaraderie of an online community may fill the emptiness you feel. Reach out and connect. Meeting others with MS can be rewarding, reassuring and often leads to lifelong friendships. I can honestly say some of the most meaningful friendships I have now began online.

Last but not least, there’s one final love you’ve had by your side all along, although you may have never noticed. You overlooked it while you were pursuing Prince Charming or Mrs. Right. It’s the person who will be by your side through thick and thin no matter what. It’s you.

When you learn to be your own best friend you’ll never be alone. Explore hobbies that give you satisfaction. Read books, go jogging, take a bubble bath, buy yourself a little something. When you see that gorgeous sunset, your first thought won’t be “Oh, if only I had someone to share it with.” Don’t gauge the pleasure of the moment by someone else’s reaction. It’s okay to love the sunset all by yourself.

So if February isn’t your favorite month and all this lovey-dovey stuff your friends are sharing gets you down, just try to focus on all the other love that surrounds you. And cheer up! March is just around the corner and we can soon celebrate MS Awareness Month together.

My parting shot to the romance of February as it heads out the door is, “Yay me! I’m doing just fine.”

References:

http://www.ncbi.nlm.nih.gov/pubmed/20483882

http://www.cdc.gov/healthypets/health_benefits.htm

http://contributors.healthline.com/family/my-teeny-tiny-mighty-ms-mascot

*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.

Spots Still Open for MSAA’s Children’s Program in Denver, CO

Posted on June 7, 2013 by MSAA

There are several open registrations remaining for MSAA’s upcoming patient education program at Dave & Buster’s in Denver, CO on Saturday, June 15^th at 9 am. The free program titled, Bridging the Communication Gap between Parents with MS and Their Children, invites parents and children to come together for special workshops which teach parents how to talk to their children about MS and enable children to learn about living with MS in a supportive manner through fun, interactive games and activities. The morning begins with a full breakfast buffet and ends with each child registered receiving a free $10 Power Card for video and arcade games following the program. Registration is required by June 13, 2013. To register, please call the RSVP at (800) 532-7667, extension 155 or RSVP online at support.mymsaa.org/dbdenverco.

The Denver event marks the third children’s program in a series of six this year which are scheduled across the United States. The presenters include Dr. David Rintell from Harvard Medical School and Sue Rehmus, MSAA board member and founder of her own nonprofit, Children’s Hope for Understanding Multiple Sclerosis (CHUMS). After a summer break, the remaining children’s programs will begin in the fall and are scheduled for September 21^st in Boston, MA; October 19^th in Baltimore, MD; and November 9^th in Orlando, FL. The response to these programs has been tremendous and we would love to get your feedback if you have attended pervious programs or want MSAA to bring a children’s program to your area. Please let us know by responding to this post, emailing us at msquestions@mymsaa.org or calling (800) 532-7667, extension 154.

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