Spring Awakening

Posted on March 16, 2015 by Angel Blair

Boy oh boy, what a winter we’ve had this year! There wasn’t a part of the country that didn’t experience some effect of this peculiar and extraordinary season – whether it was ice, snow, freezing rain or just downright frigid temperatures, we’ve all had a taste of the season! I think at this point spring will be a welcomed phase of the year – even though that means some sweltering summer temps are right behind it. But until then, why not take advantage of the weather change (whenever it does occur), and do some things to enjoy the season?

Spring is a great time to get back outdoors after winter’s hibernation; no matter what type of activity, just breathing in some fresh outdoor air can awaken the senses. Traveling, gardening, walking, exercising, riding or sitting outside are all ventures that can be explored during this period. Spring is a good time to clean things out and get organized – to throw away the old and make room for the new in order to help you keep track of what’s needed.

Explore opportunities within your community – there may be different events and activities occurring during spring that you can participate in. It may also help to talk with your doctor about different activities you can do to help with any MS symptom management issues or finding a task that is appropriate for your needs. Every individual has their own preferences and favorite things they enjoy, so the arrival of spring provides a chance to do something new and start the season with novel hope and promise.

What will you do this spring?

Spreading Awareness: Advocating for Client Needs

Posted on March 13, 2015 by Samantha Schech

This week, in honor of MS Awareness Month, I spoke with a group of nursing students at Rutgers University in New Jersey regarding chronic illness and the role nurses play in patient advocacy and referral. This event highlights the importance of spreading awareness and educating those working directly with individuals affected by this disease.

While explaining the various factors associated with MS, we explored a variety of resources available to individuals. Nurses have a unique and valuable role in the medical team – they are often the first person a client sees in a medical team giving them the opportunity to hear and learn the ins and outs of an individual’s life. With this knowledge, nurses have the opportunity to discuss options and make referrals for clients.

It is vital that nurses view themselves as patient advocates and make referrals or speak to the medical team regarding any concerns they may have for the clients care. Some conversations are difficult to have with physicians; clients feel pressure during the short visit and do not get a chance to discuss their concerns. Often times, working closely with a nurse for some of the non-physician or non-medical related concerns can be helpful.

Hopefully the conversation with the nursing students set them up to become better patient advocates in their future roles as nurses!

Have you worked with a nurse for assistance with referrals to organizations or assistance programs? How was that experience for you?

March is MS Awareness Month

Posted on March 11, 2015 by MSAA

By: Ashley Ringstaff

I know there are a lot of questions many people with MS ask themselves… and some of those questions are based upon being involved in the MS Community. How can we get involved? How can we make a difference?

I thought I would try and share my thought on this subject, for the month of March, which is recognized by many as Multiple Sclerosis Awareness Month. There are a lot of events that you may see online, on social media, and many other places. But how can we get involved?

I do a lot of advocacy for multiple sclerosis all year round, and I don’t usually attend huge MS events in order to do so. I do small, but meaningful things to raise awareness about multiple sclerosis.

The obvious one, is that I blog… but before I even started writing; I became a volunteer with MSWorld.org where I am a part of an Online Support Group for MS Patients & their Caregivers.

However, I feel that advocating really needs to go BEYOND just the MS Community, and advocated to the general public. When I have been out in public, someone will ask me what MS stands for, because I was wearing an MS t-shirt. So I explained to them what it was. Just passing along information to a few people can spread the word. Once you have given the person information, they will probably relay it to someone else they know.

I use my social media outlets to raise awareness about multiple sclerosis. I’ve done lobbying before; I do as much as I can. However, we can’t just depend on a few people to raise awareness for MS. We ALL need to take part in some sort of way.

Do you remember hearing/seeing about the ALS Ice Bucket Challenge? I saw a lot of people with MS wanting to do something like that, to bring awareness for MS. While it’s a good idea, it’s very hard to ‘copy cat’ an awareness project. But ALS is also a neurological illness with no cure, so the research being done for ALS, is most likely going to benefit the MS community in some way or another.

I’ve seen videos online of people at the mall putting up a booth, and having people who are shopping at the mall, “Try on MS”. There are so many things being done to raise awareness for MS around the World. I don’t feel like we all have to have a ‘theme’ to raise awareness, just spreading the word can do a lot.

However, I will be contacting my local news stations, letting them know that March is MS Awareness Month – and if they can do some sort of coverage on it. I’m going to make a shirt that says, “Ask me about multiple sclerosis” … original right? But it will get people wondering. Even if they don’t come up and ask me, more than likely, they will look it up on their phone.

Get involved with your local organizations group… whether that’s with MSAA, NMSS, or just something you and others you know with MS in your area get together once a month. Discuss with each other how you can make a difference in your community.

At MSWorld, we made a campaign to “Live Beyond MS: Breaking the Silence”. When I speak to people that have MS as well as their loved ones, they all want to know when a cure will be available for us. That’s a good question… but I’m not going to sit around and just wait for researchers to give me the answers we are looking for. Why? Because the bottom line is, the more people who know about multiple sclerosis, the more funding we will get for research, the closer we are to a cure, re-myelination, Stem Cell… the list goes on and on.

So, what is the conclusion to this article? Don’t wait for someone else to do something to bring awareness to MS… start doing it yourself, every bit you do makes a difference, whether you believe it or not.

xoxo
Ashley Ringstaff
MSWorld Volunteer
Diagnosed in 2010
Blogger for MultipleSclerosis.net
Follow me on Facebook
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MS Awareness Month: A Chance to Make a Difference!

Posted on March 9, 2015 by MSAA

By: Meagan Freeman

Every March, we have the opportunity to share our own stories and participate actively in spreading awareness about multiple sclerosis. The possibilities are endless, ranging from the MSAA “Swim for MS” fundraiser, MS biking events, MS walks, read-a-thons for our children in schools, and any other activity that might assist in spreading knowledge about our illness. This disease continues to be poorly understood by many, and it is still considered rare, with an incidence of 1 in 1000 in the US currently. The need for awareness has never been greater, and we can all have a hand in educating others. If we each take on the task of sharing information with those around us, knowledge can spread like wildfire.

Many patients find that they are unable to participate in these activities to support MS awareness. Many fundraisers are physical, such as running, walking, biking, and swimming events. Sometimes, the thought of participating in an event like these can be daunting for those with physical disabilities. Some patients might think, “How can I possibly participate in these?” There are a myriad of options for those who may not have the ability to actually take part in a physical event, however.

Fundraising while a family member or friend completes the physical part of the event is a wonderful option. I have had several friends participate in local MS “muckfest” and running events, while I took on the task of raising donations. I helped advertise and share information, while my runner friend completed the event. We managed to raise $2000 together last year alone. No amount of money raised is too little, and no one should feel like they cannot make an impact.

Another option is to spread awareness through blogging, speaking and writing. My personal contribution to MS awareness continues to be my blog. I started this blog with the goal of sharing my own personal experiences with MS in order to educate, and to ensure that no patient ever feels isolated or alone. The simple act of sharing your story may have a greater impact than you ever imagined. The thought of helping others simply by sharing your story is incredible! You never know who needs to hear your experience at that very moment.

Whether you choose to donate to an MS organization such as MSAA, to participate in an MS event, or simply share knowledge and educate through writing or speaking, you can make a difference. If every MS patient takes on the challenge of increasing awareness about our illness, we are capable of making sweeping changes. Let’s work together during the month of March (and beyond,) to increase knowledge, share our stories, and have a personal impact on finding the eventual cure for multiple sclerosis.

*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.

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?

March is MS Awareness Month

Posted on March 2, 2015 by MSAA

(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.

Runaway MS Train

Posted on February 27, 2015 by MSAA

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/

Myoclonus – heightened sensitivity and MS

Posted on February 25, 2015 by MultipleSclerosis.net

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!

Flying High!

Posted on February 18, 2015 by MSAA

by Kimberly Goodrich, CFRE, Senior Director of Development

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.

Loving Yourself First

Posted on February 16, 2015 by Samantha Schech

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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