Communicating about Multiple Sclerosis with Young Children

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.

MommyStoryMSAA 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?

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March is MS Awareness Month

MSAwareness2015

 (right-click this image and save it to your computer to use on social media)

MSAA recognizes March as MS Awareness Month. Throughout the month, we encourage everyone to increase their knowledge, understanding, and support of individuals whose lives are affected by multiple sclerosis. MSAA is a great place to start to learn more about MS and you can discover the many ways we improve lives today through our vital programs and services.

MSAA offers the following ways to learn and support the MS community this month and throughout the year:

  • With 39 titles and growing, our MSi Video Library contains educational videos and webinars on a variety of topics specifically focused on the MS community.
  • In addition to MSAA’s award-winning magazine, The Motivator, we also offer many publications to educate the community including the recently published booklet, Improving Lives Today! A Guide to MSAA’s Programs and Services.
  • Throughout the year, MSAA hosts educational events for people with MS and their care partners – check out our Calendar of Events to find upcoming programs happening in your area.
  • MSAA’s Art Showcase highlights the amazing artwork created by talented individuals with MS. You can even send an eCard to family and friends featuring the artwork of your favorite artist to help raise awareness about MS.

Interested in helping the MS community?

  • Register today for Swim for MS and help raise awareness and funds that directly support the MS community! Getting started is as easy as 1-2-3! Check out MSAA’s Swim for MS video.
  • Help us spread MS awareness by using MSAA’s “March is MS Awareness Month” badge (located at the top of this page) as the profile picture on all of your social media platforms. Don’t forget to use the hashtag #MSAwareness in your posts!

Thank you for all of your efforts to help spread the word and raise awareness about MS during MS Awareness Month! We greatly appreciate your continued support of our vital mission of improving lives today for the entire MS community.

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Runaway MS Train

By: Matt Cavallo

I remember as if it were yesterday: January, 2007. I was sitting in my neurologist’s office after suffering my third relapse in eighteen months. At that moment, I felt that my MS was a runaway locomotive barreling down the tracks and I needed to somehow find the emergency brake.

My neurologist at the time was new to my case because my previous neurologist took a new position as a stroke specialist at a Boston hospital. I was in to see my new neurologist because I needed to switch medicines due to an allergy I had developed to interferon.

Prior to this visit, I had researched a breakthrough new treatment that had only been on the market for six months. This treatment had been voluntarily removed from the market due to unforeseen deaths during clinical trials and had just received FDA approval for a re-launch in the summer of 2006. Despite the risk associated with this treatment, it showed potential to be the emergency brake that I needed to stop the runaway MS train.

I took control of the conversation in my neurologist’s office right away, “Doctor, I have been reading online about the available options now that I can’t take interferon treatments. After comparing the two other options, I want to try Tysabri.”

There was a long, uncomfortable pause. Then he leaned forward and pushed his glasses up his nose towards his brow and said, “Matt, while I appreciate your research there is not enough published data on this new treatment. There were complications during clinical trials. I am not comfortable prescribing this treatment at this time. Not when there is a safe treatment option with a proven track record still available to you.”

I felt like I just took a gut punch and got my wind knocked out. I sat slumped for a minute in disbelief. He leaned back in his chair and continued, “I am going to write you a prescription.”

“Doctor,” I interrupted, “with all due respect, it is my body. I am in charge of what I put into it. This new treatment is showing great promise and I want to try it.”

“Well Matthew, I am not going to write you a script for it. You still have a platform option that may work equally well. Let’s start you on that.”

“Doctor, I am not going to start that treatment until I get a second opinion.”

Now, his demeanor changed. I could tell he wasn’t used to that kind of patient response. He recoiled, “Very well Matthew, if that is your decision I respect your wishes.”

With that, I left his office and after some more research, I found an MS specialist in Boston. I called her office and she said that she wanted to evaluate my case. I just needed a referral from my primary doctor to go and see her. So, I went to visit my primary care doctor and asked her for a referral.

“No,” snapped my primary doctor. “Our doctors, in our system on the South Shore are every bit as good as the ones in Boston.”

No? Why was everyone making this so hard on me? I didn’t understand what I had to do to get the treatment I wanted and was frustrated that everyone in the healthcare system was seemingly against me.

I called up the Boston MS Specialist again and broke the news that I couldn’t get a referral.

“Matt,” said the MS Specialist, “I am going to reach out to your primary doctor directly and ask for a one-time second opinion referral. Then, you are going to come in and see me and we will find you a new primary doctor that will refer you to me.”

This was eight years ago this month in February of 2007. That month, I started that new treatment and applied the emergency brake to my runaway MS train. This eight year anniversary also marked my decision to be my own healthcare advocate. It took a lot of courage to say no to the doctors, but in the end I felt like I took control of my own health. Today, I have great open relationships with my healthcare providers and we make decisions together as a team.

**Disclaimer**
The previous blog is the author’s real life experience and his personal treatment decision. This is not an advertisement for any particular treatment. What works for one person may not necessarily work for another person. Please consult with your doctor to decide as a team what treatment option works best for you.

*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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Myoclonus – heightened sensitivity and MS

There are many unpleasant symptoms that are well understood to be associated with multiple sclerosis, like fatigue, cognitive impairment, and spasticity. But there are also symptoms that occur in people with MS that aren’t commonly discussed, and may actually be overlooked by patients and physicians. One of our contributors, Matt, wrote an article about how his “startle reflex” is extremely sensitive, and it actually has a detrimental effect on his quality of life. This symptom, also known as myoclonus, impacts many people with MS, but it appears that many people don’t realize it was actually related to their MS. After reading Matt’s article, “Myoclonus – Why do I startle so easily?”, many of our community members shared their thoughts and experiences with us. Here’s what several of them had to say!

I experience this too!

  • I have this too!!!! Loud noises such as a loud TV or radio. People talking loudly or children screaming. My senses are all affected, including my hearing, eyesight, and smell.
  • So THAT’s what that is!
  • I have this problem too and I get really agitated by it. I’ve always been jumpy, but more so in the past 5 years.
  • I have this too. It’s gotten to where I can’t even be where there are large groups of people, and even the sound of my own voice will rattle me. And I have gotten to where I don’t like to talk or socialize at all because of how much noise bothers me.
  • I am also very sensitive to noise and I have strange sea like sound in my left ear.
  • Thank you Matt for an excellent accounting of your journey with Myoclonus. I too, have had a major relapse and experience a higher sensitivity to certain things, one being sound. My neurologist and I have been working on subduing the worst and working our way down.
  • Klonopin does not work for me. I take Nucynta at night and it helps, but the side effects are very unpleasant. It’s a very strong narcotic for pain. It takes away the “jerky” movement but it makes me incredibly anxious. I have not found anything else to remotely make the myoclonus better. I have high hopes for the future of medicine because I cannot fathom anyone living like this for the rest of their lives.

I didn’t know there was a specific diagnosis for this symptom!

  • I decided to share this as some of my friends might find it interesting. It is part of a long list of very odd symptoms I have acquired, and it was helpful to me when I found that this “weird sensory sensitivity” had a name, myoclonus. Psychologically, for some reason, the fact that there is a name for this condition is validating, and helps, somehow, to know that there are others dealing with this odd affliction that is not easily understood.
  • I’ve always thought my exaggerated startle reflex was related to MS, but this is the first time I’ve seen it in print.
  • I didn’t know what it was going on. It’s even worse in evening with the TV, my husband talking over the TV, the dog barking at the cat, etc. It’s sensory overload!! Now you’ve validated that it’s an MS symptom.
  • Good post Matt, I have same symptoms, but flashes of bright light, sound and other stimuli, including stress, are involved. I had not tried to find out what it was called, but I knew it was brain and spinal lesions behind it – I am glad to hear it has a name.
  • Oh my goodness, this was one of the new symptoms I developed about a year ago! My phone going off would startle me, the door slamming throws me into a panic attack, loud noises especially in the evenings seem so much louder and ear piercing.
  • I have this really bad and the doctor, not my neurologist, always told me it was my Graves’ disease.
  • I am so grateful to read this article. I developed this startle problem in the past 10 years since I was diagnosed with MS. I remember at times I was so startled it was actually painful. I don’t seem to do it as much as I once did, but good to know I wasn’t crazy. Thanks for your article.
  • I can not thank you enough for writing about this because, like many I never connected this with being a symptom of MS and I never told my neurologist that this was a frequent experience of mine.

People don’t understand the impact this has on my life

  • I was never so resentful. I have to keep reminding people who know I have MS to calm down so I can calm down too.
  • If someone raises his voice I begin trembling. I’m young, but old enough to not be comfortable about that observation. It’s getting worse too
.
  • I knew startling was MS, but it’s nice to know that others are affected by people walking behind them. I had someone come around my desk to look at my computer and I got so nervous I had to ask him to move away from me. I felt like a great big “meanie”, but you have to do what you have to do.
  • This particular symptom has affected me tremendously in the social aspect. For many years I could not have been more frightened to be around anybody doing anything because they feared that I would have uncontrollable muscle spasm. The reactions I got were not totally bizarre, however I noticed that it was not just me who was disturbed by my symptoms, yet most people tend to feel very uncomfortable around me because most people think that they are causing me to be scared.

I have something similar

  • For anyone who is experiencing sensitivity to sound, there is another condition called “Hyperacusis” that involves sensitivity to sound without apparent evidence as to the cause. The primary difference between the two, from what I’ve learned, is that it does not (necessarily) involve the muscular activity, but more often results in pain, fatigue, and a multitude of other varied cognitive symptoms. There are a few subcategories of hyperacusis; we just recently discovered “Acoustic Shock Disorder” as the most likely diagnosis.

What about you? Do you find that you startle easily? Did you know that this could be a symptom associated with Multiple Sclerosis? Share with us in the comments!

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Communicating Online

It’s all the rage these days – communicating to others through technology channels, especially online. Gone are the days where individuals only communicated in-person or by telephone. Now interacting with others may still involve a telephone, but mostly by way of text messaging and social media platforms do people stay tied to others.

Using online communication systems to interact has been steadily increasing with the technology age and will probably continue to do so. Individuals in the MS community use various types of online platforms and discussion groups to discuss MS-related topics and interests with fellow members of the community.

As this online communication trend continues, what are some ways to ensure your safety and comfort level when accessing these portals?

Read and review. Be sure to read and review any website and social media platform policies when engaging in online interactions. Your privacy is important, so be cautious of what information you share online and how it will be shared with others; only share and disclose what you’re comfortable with. Use discretion if disclosing personal details or identifying information about yourself. You want to ensure that your safety and privacy remain a priority when connecting to others.

If some type of interaction feels ‘off’ in some way, be mindful of that feeling and try to take the appropriate steps to disengage if necessary. Remember why you reached out in the first place, if you feel as though you are not getting the support or information you need, or that conversations are not healthy for you, you have the right to leave the conversation.

Communicating online can be a supportive and dynamic experience, so just be sure to do so safely and appropriately.

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National Love Your Pet Day

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In honor of National Love Your Pet Day, the “unofficial” national holiday set aside to give extra attention to and pamper your pet that you love every day. This is a good day to focus on the special relationship that you have with your pets.

Having a pet has proven to provide many physical as well as mental benefits. Therapeutically, a pet can lower blood pressure and have a calming effect over an individual, which can lead to diminishing some pain symptoms. Pets also encourage communication (who doesn’t talk to their pet), as well as provide support and comfort.

When feeling anxious or nervous about a new situation, perhaps lean to your pet for support. A pet is a perfect soundboard for thoughts and feelings and even better, they can’t talk back! Maybe there is an uncomfortable topic you wish to discuss with a loved one, try practicing speaking out loud to your pet exactly what you wish to say. The extra practice in expressing your thoughts can provide confidence and re-assurance in the situation.

While your pets can’t role play the situation back with you, having practiced saying a thought or feeling may help alleviate some of the anxiety around the situation. It may also provide you with the opportunity to hear how your words would sound to another person. Have you ever made a comment and then realized ‘that wasn’t what I meant to say.’ Practicing beforehand allows you to make changes to ensure that your message is properly received.

In what ways is your pet a support to you?

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Flying High!

by Kimberly Goodrich, CFRE, Senior Director of Development

Justin Yuhaze

Our local NHL team, the Philadelphia Flyers, is known for its recognition of those who give of themselves to their community. Their Flyers Hometown Hero program was developed to recognize organizations and individuals that make a positive difference in the lives of others. The Flyers award each Hometown Hero with two tickets to a Flyers game, a personalized Flyers jersey and recognition on the scoreboard during the game. Last night’s game against the Columbus Blue Jackets recognized South Jersey resident Justin Yuhaze for his contributions to MSAA and the MS community.

Justin was recently diagnosed with multiple sclerosis himself, an event that left him with the realization that he didn’t know much about MS. Immediately, he began educating himself about every aspect of MS. “I didn’t know much about MS at this point, but I stopped in at MSAA in Cherry Hill, NJ and they were able to provide me with books, magazines, and told me about an upcoming lecture on the history of medical treatments for MS,” says Justin.

Then Justin decided to participate in MSAA’s Swim for MS fundraising initiative, where he dove into action to help raise awareness and funds to support individuals, like him, who are living with MS. Justin and his wife Julie joined volunteers all across the country who have created their own swim challenge while recruiting online donations to support the vital programs and services offered by MSAA. Justin and his family surpassed their goal, adding to the more than $320,000 that has been raised through Swim for MS.

“We swam all over South Jersey in pools, lakes, and the ocean. Together we swam over 13 miles. By swimming, we can raise awareness about this incurable disease, and provide help to those who need it most. Our fundraising efforts can provide cooling vests, wheelchairs, fund MRI’s, and educational programs and services.”

Thank you Justin for being a part of Swim for MS and supporting our many vital services. Thank you Philadelphia Flyers for recognizing one of the many heroes who give back to their communities! Go Flyers!

To read more about Justin and his Swim for MS challenge or to make a donation, please visit his Swim for MS webpage.

*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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Loving Yourself First

What is love? Webster’s dictionary defines love as “a feeling of strong or constant affection for a person”. After a day like Valentine’s Day, it is hard not to question the concept of love. Perhaps you are in a long term relationship, maybe you have yet to find love, or have just ended a relationship. By definition, love doesn’t solely rely on a relation with another person, it can define the feeling you have for yourself as well.

Truly loving yourself and having the respect for the person that you have become can be a challenge for some. Uncontrollable events occur in life that may change the way that one perceives themselves. Perhaps there are goals or outcomes that seem unmet, or feelings that are unresolved. Coming to a place of understanding and acceptance of the uncontrollable events and embracing the change they may have created is the first step in loving who you are as a person.

By accepting the changes that have occurred, you allow yourself to move forward without any self-doubts or negative thoughts. But this too is a process. One does not wake up one morning and choose to accept the many years of life’s up and downs. Daily affirmations or positive thoughts about your self can be an effective way to practice self-love and acceptance. You can create your own, or utilize one of the many that can be found in books or online.

The Law of Attraction states, “like attracts like”, meaning, what you put out into the world, is what you attract. If you feel positively about yourself and love yourself, you will attract that same level of positive energy in another. When you don’t like yourself, or don’t feel yourself worthy of love, it can be difficult for someone to find that in you as well.

The change to a place of self-acceptance and love cannot occur overnight. If you feel as though you need additional support or help in removing the self-doubts or negative thoughts, a counselor may be able to assist in getting to the root of those feelings. Everyone has a right to be accepted and loved, personally and by others. If possible, seek help from a support group or counselor. It is never too late to make a change.

“The turning point in the process of growing up is when you discover the core of strength within you that survives all hurt” –Max Lerner

References:
http://www.merriam-webster.com/dictionary/love

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Love Conquers All… (Including MS!)

By: Meagan Freeman

Valentine’s Day brings to mind images of unconditional love, commitment, and romance. We see the theme as we stroll through any store during the month of February, the candy hearts, the red roses, and the chocolate. Sometimes, we forget what this concept truly means, and get caught up in the “commercial” aspects of the holiday, instead. If anyone is looking for a true story of love, hope, inspiration, and unending devotion, I have one for you.

My grandparents met on a Southern California Beach in 1944. My grandmother wore a bright yellow bathing suit, as she sat in the sand under an umbrella. My grandfather always described her as “the most beautiful girl I have ever seen.” Both of my grandparents served in the military during World War II, and both were stationed in Santa Monica, CA. It was love at first sight, according to both of them. This bond grew in the following year, and they were married in a beautiful ceremony in 1945. This strong bond they had formed would be tested in the coming decades, and it would carry them through the most difficult times.

In the following decade or so, my grandparents had seven children, three girls and four boys. My mother was the oldest child. Sadly, my grandmother began to develop neurological symptoms such as weakness and emotional instability. Eventually, she experienced seizures on a regular basis. This led to a fairly rapid decline, leaving her wheelchair bound by age 40, and bedridden by age 45. Eventually, she was diagnosed with a rapidly progressive form of multiple sclerosis. The advice regarding MS in the 1950s-1960s was generally to “get in bed and stay there,” and “do not ever exercise.” As we know, this is some of the worst advice for MS patients.

When my grandfather was faced with the decision whether to move his beautiful wife to a nursing home or keep her in the family home, he insisted she remain with him. He lovingly cared for her for over a decade in the home, all while raising the seven children and working to support the family. He helped her to dress in her best clothes during family gatherings, brushed her hair, and made sure she was a part of the family in every way. My grandfather was a photographer, and he took hundreds of incredible family photos, always including my grandmother.

Eventually, my grandmother lost her battle with MS. My grandfather carried on for many more years, visiting the grandchildren (myself included,) gardening, attending church, and waiting for the day he would see his wife again. His faith was strong that he would see her again someday, and he spoke of her often. He passed away in 1994, and on their grave is the quote that sums up the undying dedication they showed for one another through the most difficult times life could throw at them: “Suffering disappears, love remains.”
Love is indeed forever.

meagan feb blogMy grandparents on their wedding day, 1945

 *Meagan Freeman was diagnosed with RRMS in 2009, at the age of 34, in the midst of her graduate education. She is a Family Nurse Practitioner in Northern California, and is raising her 6 children (ranging from 6–17 years of age) with her husband, Wayne. She has been involved in healthcare since the age of 19, working as an Emergency Medical Technician, an Emergency Room RN, and now a Nurse Practitioner. Writing has always been her passion, and she is now able to spend more time blogging and raising MS awareness. She guest blogs for Race to Erase MS, Modern Day MS, and now MSAA. Please visit her at: http://www.motherhoodandmultiplesclerosis.com.

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Hard Family Conversations and MS

By: Matt Cavallo

During my initial hospital stay and subsequent diagnosis of MS, one of the biggest challenges that I faced was talking to my family. We had a history of multiple sclerosis in my family. My dad’s sister, Loretta, was diagnosed with MS in the 70’s and she passed away in 1981 due to complications of the disease. During that time, there was little in the way of treatment available to help her. Not only that, but the disease progressed very quickly. She passed when I was only four, but I still can remember her. She was in a wheelchair and she couldn’t talk, she could only mumble and moan.

While I was laying in my hospital bed contemplating my diagnosis, I was thinking that I shared the same fate as my Aunt Loretta. The whispers around my bed from my family members supported my fears. As a result of these fears, the conversations changed. Family members started treating me differently. They were walking on eggshells around me, careful not to divulge any of their true fears of my future. Even with treatment, as my functionality returned, everyone held their breath for MS to strike again.

Six months later I had another drastic exacerbation. Then, twelve months after that another one. It seemed like I was following Aunt Loretta down a perilous track. And my family treated me that way. It was to the point where I didn’t want to have conversations with them because I wanted them to remember the person I was and not the person I had become with MS.

However, there were a couple of things I had going for me that my aunt didn’t have. One was timing. In 2005 there was a lot more knowledge about the disease and many more treatment options available than when she had it in the 70s. The second thing was history. I knew my Aunt Loretta’s story and I didn’t want mine to end the same way. Family members told me that she didn’t like the advice she received from a doctor, so she never went back to that doctor. I used that information to motivate myself to learn as much as I could no matter if the news was good or bad, scary or hopeful. I just wanted to get the most objective, up-to-date information available to fight. Lastly, I had hope. In the seventies there was little known about the disease. Today, there is research and scientific breakthroughs, social support networks, and hope.

If I could go back in time with all I know today about living with multiple sclerosis, the fear and egg-shell conversations with my family would be dramatically different. I would use the resources around me, like My MS Journey, to educate myself and ease my family’s fears instead of staying silent.

Today my family conversations are no longer about the horrors of MS. My family and I now talk about my future and my kids and all of the awesome stuff that normal people talk to their family about. Today we are a normal family and I just happen to carry the torch of multiple sclerosis. I have had it for approaching ten years now and I am still working, playing, being a dad and living the life I always wanted to live. That makes me proud to talk about my MS journey and how I have lived a great life despite my diagnosis.

Resource:
http://mymsaa.org/journey/

*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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