The first “Ask Me Anything” on MultipleSclerosis.net!

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You may have heard of one of the latest trends in social media discussion forums, called “Ask Me Anything”, or “AMA”, popularized by websites like Reddit. An AMA is a common chat topic or general discussion forum thread in which people ask someone who is an expert in a certain area questions relating to his or her life or expertise. Last month, MultipleSclerosis.net hosted our first AMA event on our Facebook page, and it was amazing! The event was hosted by our team of moderators in honor of MS Awareness month, with the goal of providing a set time where members of our community could ask our team anything about MS symptoms (our chosen theme for this particular event). The results were tremendous! Our first AMA prompted over 240 posts in just one hour – including questions, comments, and replies – which averages out to about 4 posts per minute!

Though the main theme of the AMA was MS Symptoms, a wide variety of topics were discussed, including rights at work, discontent treating physicians, how to provide support to relatives and loved ones who have MS, how to manage fatigue, what it means to have secondary progressive MS, and what to do upon first receiving an MS diagnosis.

Our moderators and team answered the community’s questions based on personal experience as well as the wealth of articles on MultipleSclerosis.net. Here is a brief summary of some of the topics that were discussed!

I’m unhappy with the treatment I’m receiving from my current neurologist. One place to start is by taking a look at a registry of MS experts here. The National Multiple Sclerosis Society may also be able to provide recommendations for practitioners in your area. Additionally, attending patient meetings can be very helpful for coping with many aspects of having MS, and they also serve as a great source of information like names of good doctors.

What can I do to manage my MS fatigue? Believe it or not, exercise actually helps some people with MS manage their fatigue. – It stimulates certain chemicals in the brain to make us feel better. Working full time while taking care of one’s family is exhausting for MSers. Another idea would be to try meditation or yoga for its calming and healing effects.

What are my rights at work with regard to disclosing my condition, and receiving the support that I need? The ADA requires an employer to provide assistive equipment/aids so someone who is disabled can continue doing his or her work. It also prohibits the employer from firing someone for being disabled, but does not protect you from termination if the employer cites other reasons. It is also important to contact someone in your Human Resources (HR) department if your company has one. Those who work in HR are experts in this subject. Our expert, Cathy, also wrote a great article about helping those who are disabled look for work.

How can I be helpful to a loved one who has MS who lives far from me? One of the best ways to provide support is to be there for loved ones when they need to talk, and show an interest in how this is affecting her or her life. Ask her how she’s doing, and listen to her response.

What is secondary progressive MS? Secondary progressive MS is a type of MS. While relapsing-remitting MS is the most common type of the condition, secondary progressive MS impacts many in the MS community. Here is some more information on SPMS.

What does it mean to be in remission? Being in “remission” doesn’t necessarily mean that your symptoms completely disappear (some people will return to feeling exactly as they did before the exacerbation began). Stephanie wrote a very comprehensive article on relapses and remission in her MS 101 on understanding relapses.

Where should a person who was just diagnosed with MS start? You should start with a request to see a neurologist- preferably one who specializes in MS – and have a complete workup of your history and an MRI. Unfortunately, it can take a long time to find answers.

We truly appreciate all of our community members who participated in our first AMA, and of course our amazing team of moderators who were feverishly responding to all of the questions during a very exciting hour! We will definitely be hosting more AMAs in the future, so we will keep the community updated when we have the next one scheduled!

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MSAA’s MS Research Update Now Available

Research_Update_2015_email_BUTTON1The 2015 edition of MSAA’s MS Research Update provides a comprehensive overview of research findings on FDA-approved disease-modifying therapies, as well as study results on many experimental treatments currently under investigation. This update also presents directions for future research in areas such as stem-cell research, biomarkers, genetic studies, and more.

In addition to the exciting research aimed at relapsing forms of MS, several studies are also looking into the treatment of progressive forms of MS. To assist individuals interested in learning more, trials with progressive forms of MS have been highlighted in bold for quick identification.

Read MSAA’s latest MS Research Update here.

 

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Worth Fighting For

By: Matt Cavallo

There was a touching moment at my last neurology appointment. You see, I have been with my same neurologist since moving to Arizona in 2009. Throughout the years, he has been by my side through good and bad times. This time was different. He seemed less like my neurologist and more like he was proud of me.

In 2010, I was suffering from severe spinal stenosis due to a bone fragment that had chipped from my C6 vertebra. I required emergency neck surgery or faced the risk of being quadriplegic. After surgery, I fell into a state of depression. Relapse after MS relapse building to a surgical climax, I just felt like my quality of life was never going to be what it was before having MS.

I was ready to give up on myself. Not only that, but I was ready to give up on my MS treatment, as well. And I did. I was required to stop my treatment prior to surgery. Post-surgery, I didn’t want to restart my treatment. I had had enough. I was sick of feeling like a science experiment or a pin cushion. It seemed like even though I was on a treatment that another debilitating relapse could strike at any moment.

One month passed post-surgery and I was feeling OK. A little tired, but OK. Then a second month passed with no treatment. Now, unbeknownst to me, I started to forget simple tasks around the home and office. A third month passed and I was dragging my left leg, had blurry vision in my right eye and couldn’t follow simple instructions. However, due to the brain fog I was in, I convinced myself that nothing was wrong.

That’s when my neurologist stepped in. I didn’t tell him anything, but you see I worked for a neuroscience clinic that was associated with his practice. One of the nurses called him and he made a special trip down to the neuroscience clinic to check on me at work one day. As a result of his visit, I found myself in an MRI followed by the news that my brain and spine were blossoming with active lesions. He ordered me a round of solu-medrol and a follow up with him the next week.

During that follow up, he wanted to know why I was acting the way I was. Why was I going against medical advice? I told him I was done fighting and that I had already been through too much. He spent the rest of the appointment helping me decide that I was worth fighting for. That my multiple sclerosis would have periods of relapse followed by periods of remission and that I needed to use the available tools to fight it with all I could. And I did.

Good Times: Last week, I walked into his office feeling like Norm on Cheers. I got to visit with old coworkers and acquaintances and catch up with old friends. Then, it was time for the appointment and this appointment felt a little different. He did his protocol tests and talked to me about lab results from a recent blood draw. Then he took the conversation in a different direction.

“Matt,” he said, “How are your travels? I worry some time that your life on the road is going to wear you down.”

“You know me,” I responded. “I want to use my story to go make a difference in the world.”

“When I think back to when I first saw you, to where you have come, despite the challenges.” He paused. “I’m just…I’m proud of you.”

Given where we have been and reflecting back on the past five years together, the good and the bad, I was speechless. This is a revered neurologist, that has been practicing MS in Phoenix since 1978 and he is proud of me.

At first, I was speechless then I responded, “Remember when you told me I was worth fighting for? Well, I believed you.”

I believe that all of you who are reading this are also worth fighting for. The question is, do you believe it too?

*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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Spring Fling

Ahh, the time of year that brings colorful flowers into bloom and comfortable temps is finally here! April showers that bring May flowers help mark the arrival of spring type weather and a time for people to get outside and enjoy this time of year. It’s not too warm yet in most of the country, which allows for outdoor events to be enjoyed, not denied because of the heat. So what are some things people can get out and enjoy doing during this spring time?

Doing outdoor chores like gardening or yard work can be relaxing at times while you go at your own pace, or just sitting outside during this season can be refreshing, breathing in air that the winter months made most people hibernate against. Attending ball games, community events and outings, exercising or taking a ride can all be welcomed activities to appreciate this month. Spring doesn’t seem to last too long in relation to the sizzling summer and frigid winter months, so consider this period a ‘fling’ to do what you like, no matter what the activity is.

You can get together with people you enjoy spending time with and make up your own activities or events this season. Try something new – like a project or artwork you’ve always wanted to create, and have others help you to make it a fun group activity. It’s important to let yourself be present in the moment, especially if you’re engaging in something new, so that you can appreciate the situation for what it’s offering. The seasons come and go, so be sure to make your ‘spring fling’ a memorable one!

What’s your idea of a fun ‘spring fling?’

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Tips for Staying Organized

Organization is a personal character trait; to some it comes naturally, to others it is a struggle. One thing is certain; organization is about finding a system that works for you. There is no need to justify something that works to your benefit, regardless of other opinions of that system.

Consistency is one of the more important factors when discussing organization and managing one’s life. They say it takes 21-days or three weeks to make a habit. This may be true for some, but it is stressful to think about counting down 21 days just to find some level of consistency in a routine.

For those who struggle with being organized, or feel that they need more organization to help with day to day activities, the following suggestions or tips may be helpful:

Sort at the Source:
Stay on top of mail and paperwork as it comes through the door. Sort through the junk mail and place it in the trash or recycle bin. Place bills or other important documents in a space that is meaningful for you, and where you will know where to find them when needed.

Put it Away:
It sounds like something you would tell a child, but this simple step can help those who seem to misplace items. You are more than likely to remember where something should be, but is it in its place when you go to look for it? When you are done with an item, put it back in its place. When items get left out of place, they can easily be lost.

Allow Plenty of Time:
When we are rushed, mistakes can happen or things can get lost. Allow yourself plenty of time to complete a task and complete one task at a time. Time management and organization often go hand in hand.

What tips or suggestions do you have regarding organization? Have you found a process that works for you?

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Greetings from the Midwest Region!

By: Marie LeGrand

Greetings from the Midwest Region! I am the newest member of the team and as the Regional Director have had the pleasure of meeting so many wonderful people and formed great relationships during the last few months.

As a healthcare leader, my journey has taken me to unexpected places and provided me the opportunity to enhance client and patient satisfaction; by creating and implementing services that promote healthy behaviors, and designing plans around health program expansion and extension. Before joining MSAA, I developed disease prevention programs and monitored the effects within community settings. I worked collaboratively with other nonprofit organizations; in increasing HIV awareness and prevention within underserved communities and high-risk groups in the city of Chicago. Through program development, health promotion, partnership building, and research & development, I created culturally sensitive and educational materials on key health issues.

As the Midwest Regional Director, I will work with MSAA in creating awareness and providing education, programs and services to individuals living with MS and their families. I have had the privilege of speaking and listening to the touching stories of individuals, who have started support groups and fundraising events that encourage others to stay positive and involved while finding ways in which to overcome the challenges of MS. Through them, I am empowered and excited every time I am asked about my profession and the work that MSAA does nationwide for the MS community. I am also pleased when my guests come up to me at the end of a program and proclaim how happy they are with the quality of work that we consistently do for them and their families. For many, it is an opportunity to meet new friends and create connections that will last a lifetime. For others, it is a time to laugh and share stories of encouragement and perseverance as well as giving tips on how to live life fabulously with MS!

In the next few months, I plan to reach out to those living in rural communities and small towns working with expert clinicians and health practitioners in the field to answer questions that many have pertaining to their health. Oftentimes, it is a very scary experience to speak with clinical staff or a physician. The programs are an open forum for many to address issues that are left unanswered in a friendly and inviting environment allowing them to discuss pertinent topics that affect daily living. I have a few educational programs that I am excited about, which covers a variety of topics such as, “The African American MS Patient Experience”, “Multiple Sclerosis in Women”, and “Adherence Matters”. I hope through these programs, many will become more knowledgeable about their MS.

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Trying Something New

During the holidays I received a gift certificate to try yoga classes at an exercise studio in my area. I was always interested in trying this type of class and this was my opportunity to finally do so. I have to admit that I was a little nervous going to that first class. With feelings similar to the first day of school I didn’t know what to expect – what the teacher would be like, if I would be doing the exercises “right,” and if I wanted to come back. I don’t think I was alone in these feelings as I’m sure others have similar thoughts when trying something new for the first time, but I was worried about how it would affect my performance. I didn’t want to be the odd man out and have it be completely transparent that I had no idea what I was doing.

To my surprise, on the first day of class I wasn’t the only new student! I was relieved to see that there were several other new students joining the class and trying this yoga for the first time! This gave me comfort knowing that I at least wouldn’t be the only new face in the crowd of others more experienced and that perhaps these other folks shared in my own initial fears about trying something new.

The class turned out to be great – the teacher was encouraging and the exercises were dynamic and fun. It was a challenge on the mind and body in an uplifting and positive way, and something I felt so proud of myself for trying. I have continued attending the class and look forward to it each time I attend.

No matter the task, exercise, venture or opportunity that comes your way, the point is that you’re not alone in the initial fears or concerns or questions that you have about it. At some point everyone encounters something new, so it comes down to the question of if and how you’ll approach it, and if this something new has potential benefits for you. You won’t know until you try it, right?

What new venture will you try?

*Please remember to consult with your physician before starting a new exercise routine

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Managing Cognitive Difficulties

By: Meagan Freeman

When we think of spring, we think of renewal, spring-cleaning, organization and clarity. We think of new growth, birth, refreshment and a new beginning. This can be especially difficult for patients struggling with memory loss and multiple sclerosis. How do we achieve organization when we have a difficult time recalling why we walked into a room?

How many times have you misplaced your keys? Lost your phone? Forgotten someone’s name?

Cognitive difficulties brought on by MS are an incredibly tough thing to accept, especially in the very young. We aren’t supposed to experience memory loss like this in our 40s, 30s and even 20s. When that familiar face says “hello,” on the street one day, you know you recognize this person…but you think: “what was that name again?” Embarrassing to say the least.

Like any MS symptom, these changes are caused by lesions and brain atrophy over time. Medications used to treat MS symptoms may also be responsible for causing cognitive issues. Pain medications, anxiety medications, and muscle relaxants may cause patients to become sleepy, fatigued, and even confused. We should all be cautious when using these types of medications, especially when driving or doing other dangerous activities.

What can be done about these issues?

Occupational therapists, speech and language pathologists, and neuropsychiatrists can perform a specific battery of tests to determine the severity of the cognitive impairments. Then, computer-assisted tools such as memory aids, and other forms of cognitive rehab can be used to improve memory and learning. The other key point is that lesion load, or the number of lesions seen on MRI, can correlate with cognitive problems. Therefore, it is natural to assume that staying on a disease-modifying drug is important in keeping the lesion load low.

In my own life, I have experienced a great deal of cognitive decline over the last few years, and I am only 40! I began to notice that I was forgetting the reason I entered a room, where I put important things in my home, where I set my keys, and even names. I was horrified when I noticed these changes! Some of these things can be blamed on normal aging, stress (6 kids!), and perhaps lack of sleep/rest. However, I am quite sure that MS has a lot to do with it. All we can do as patients is educate ourselves, educate our families, and be aware. Communication with our providers is important as well, and we need to be sure that we are receiving every available treatment. Don’t ever assume that nothing can be done for you. Training your brain by reading, writing, and continuing to learn are excellent ways to keep the mind working! “Use it, or lose it,” as they say!

Use your spring-cleaning time to organize your life. Keep things in specific places that you will remember clearly. Label things, and use a pill sorter to remind you to take your medications, if needed. Write everything down, and set reminders in your phone. If we prepare for those moments of memory loss, we will find them less worrisome. Happy Spring!

*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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Preparing for Spring

Welcome April! We here at MSAA are looking forward to April and the wonderful blog posts scheduled. When thinking about spring, it is difficult not to think about spring cleaning. It’s a time to (hopefully) put away some of those winter sweaters and fuzzy socks and breakout the shorts and sandals. This period of transition is also a great time to think about organization and cleaning.

Did you know there are several suggested origins for spring cleaning based on religious and cultural practices? One is traced to the Jewish celebration of Passover. Prior to the celebration, the home is cleaned in order to rid the home of any bread that is leavened with yeast. Another suggested origin states that prior to the Chinese New Year, the Chinese sweep their floors and clean their homes to rid it of bad luck and misfortune that may have accumulated during the previous year.

Spring cleaning origins also date back to prehistory, and represents the time when it was easiest to conduct a good cleaning of living spaces. Extra light allowed people additional time to truly see the messy state of their caves, or huts.

In preparation for this month’s topics, we have linked below several blog posts that have been written highlighting organization and cleaning. This topic will continue throughout the month of April, please feel free to leave a comment under the blog with personal tips or suggestions.

Please note: MSAA offices will be closed Friday, April 3rd.

Enjoy these pieces over the holiday weekend:

Get Organized: Tips for starting your new organized lifestyle.

Spring Cleaning: The concept of spring cleaning can represent anything you want it to.

Keeping Track of your MS: “Tips” on how I keep track of my MS.

Resources:
http://home.howstuffworks.com/home-improvement/household-hints-tips/cleaning-organizing/spring-clean-in-spring2.htm

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Beat the Heat this Summer

Spring has sprung, or so they say; and while the first day of spring brought some cold weather and snow to some parts of the country, others are starting to think about the warm weather months. It is known that individuals with multiple sclerosis (MS) can be affected by the heat. The slightest increase in body temperature can intensify MS symptoms.

For those with this type of heat sensitivity, the spring and summer months can be a challenge. While family and friends start planning outdoor events and activities, individuals with heat sensitivity question what they will do all summer long.

Cooling products are designed to be used during these warmer months. Ice pack style cooling products allow an individual to place specially designed ice packs into a garment that is worn on the body. Through cooling technology, the body is provided with a safe cooling temperature that helps to reduce overheating.

MSAA offers a program for those who are income eligible to provide these ice pack style cooling products and accessories. For more information regarding this program, please visit the MSAA website at http://mymsaa.org/msaa-help/cooling/.

For those who may not be eligible for assistance through the MSAA program, the manufactures of these cooling items provide products and accessories that can be purchased. Visit Polar Products and Steele Body Cooling, and remember to let them know that MSAA referred you. There may be a discount offer available!

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