Comprehensive MS Research Update Now Available from MSAA

MS Research Update

The 2014 edition of MSAA’s MS Research Update is a comprehensive overview of the latest research findings on the FDA-approved disease-modifying therapies, as well as many e,perimental treatments. This update features ground-breaking studies not only with medications, but also in areas such as stem-cell research, therapies for myelin repair and protection, biomarkers, genetic studies, and more.

In addition to the e,citing research aimed at relapsing forms of MS, a number of studies are also looking into the treatment of progressive forms of MS. To assist individuals interested in learning more, studies involving progressive MS have been highlighted.

Read MSAA’s latest MS Research Update here.

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Wait a second, did you get that?

Closeup portrait of cute young business woman

Being able to effectively communicate with others is one of the most basic human needs and functions. Babies and young children cry or throw tantrums when they don’t get what they want or need because they haven’t discovered any better ways to express their concerns or desires. They need to be heard, but they can’t express their concerns directly so they resort to raw emotion and yelling to get their needs met.

As we grow older, we are taught that there is a time and place for everything and that generally when speaking in public (school, work, etc.), you need to do your best to control your emotions and try to calmly verbally address your needs or concerns. For example, in a business meeting while you might feel like rolling your eyes at an inane comment, or may even feel like yelling when your point hasn’t been heard or addressed after asking for the 100th time, responding in either of those ways in a work setting is likely to get you a reprimand at best and unlikely to get you what you really wanted (for example a shorter meeting with highlighted objectives, or a specific problem or concern to be addressed).

These communication issues don’t only happen in the workplace setting as you might have times where you feel like your doctor is just not hearing what you are saying or a relative is being insensitive or un-relatable. When you end up in these frustrating situations, you might have the impulse to cry or yell, and sometimes that might supersede your public decorum, but these also may be good times to evaluate your situation and how you could better try to communicate your need.

So how do you take a step back when you need to make sure something is heard?

You may need to take five minutes before speaking to give yourself time to process a more tactful response. You might pretend you are re-explaining the situation to a totally
Older male doctor with laptop talking to middle-age male patientdifferent person. You may also ask the other person to repeat back to you your concern in their own words, so you can make sure they “got it.”

Feeling misunderstood or like no one is listening can heighten your anxiety, stress, and frustration around a situation. Others can contribute to misunderstandings and miscommunications if they are not being active listeners and receptive participants in the conversation, but try to do your part. Try and emote effective communication. If the other party really is not listening, or you can’t overcome personal barriers, you can try to remediate the situation by going to others with your concerns (in the worst case scenario finding a new doctor or changing jobs…. although I’m told you can’t get a new family).

Can you share your tips for how to communicate better in difficult situations?

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MS & Management of Cognitive Symptoms

Have you struggled with memory loss? Is it challenging to concentrate on certain tasks? You’re certainly not alone.  It’s not unusual for individuals with multiple sclerosis to struggle with a variety of cognitive issues.  Although severe cognitive impairment only affects a small percentage of MS patients, 66% of respondents in the MS in America survey noted experiencing cognitive dysfunction.  Additionally, 49% of participants identified cognitive dysfunction as a symptom they experienced frequently (n=3,135).

frequentsymptoms

Among individuals experiencing frequent cognitive symptoms, more than 80% struggled with memory loss, concentration/attention span, information processing, and verbal fluency:

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We recently asked our Facebook community to share their techniques for managing frustrating cognitive symptoms.   Here are some of the top tips:

    • Keep lots of lists that you can take with you, either on paper (post-its, etc) or on your phone
    • Use a calendar (paper or electronic) and update it on a regular schedule to keep track of important dates/events
    • Utilize alarms for reminders – even for simple things that you might forget
    • Avoid procrastination since you’re more likely to forget
    • Keep important things in the same place so you’ll always know where to find them
    • Label storage areas (drawers, boxes, bins, folders) so it’s easier to find things
    • Stay mentally active by learning new things, picking up hobbies, meditating, or completing crossword puzzles
    • Visualize the topic you’re talking about, it may help your mind stay focused
    • Use written communication
    • Be honest and ask for help from others, including your doctors

Don’t forget – recent research has suggested that aerobic exercise and cognitive leisure activities can also help improve memory and protect against cognitive decline.

Do you experience cognitive symptoms? How do you manage them?

The MS in America Study was conducted over the Internet from November 2012 until January 2013. The primary goal of the study was to establish an understanding of the current state and trends of patients affected by Multiple Sclerosis. The survey included over 100 questions on a broad range of topics. A total of 3,437 people started the survey while 2,562 people completed the survey resulting in a high completion rate of 74.5%. To qualify for the survey, participants had to be MS patients over 18 years old and a US resident or US citizen living abroad.

The study was solely developed and funded by Health Union, LLC which does not manufacture, sell nor market any product to diagnose, prevent or treat MS or any other disease.

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An Early Look at the Year in Review

2013The year 2013 has been a substantial one in the world of MS. As each year passes, more and more developments and improvements are made to the ever-changing MS landscape, and it looks like we can add 2013 to that picture. The year saw the approval of a new MS treatment, the initiation of health insurance changes and availability, and increased information pertaining to upcoming trials and experimental medications for treating the disease.
2013 in review

As changes occur within the MS community, the MSAA continues to play a role in providing updated information and educational resources portraying these changes. Through educational webinars, shared-management and informational programs, the MSAA was able to provide support to those in the MS environment in learning of these developments. And as changes continue to unfold in the future, MSAA will continue to increase awareness of these developments within the MS community.

 

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Join MSAA in Spreading Holiday Cheer and Awareness of Multiple Sclerosis

Choose from 18 different cards to match the personality of everyone on your list. By sending a card from MSAA, you are telling others that you take an interest in MSAA’s mission to serve as a leading resource for the entire MS community, improving lives today through vital services and support:

Send a Holiday Card

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Free Halloween E-Cards: A Special Treat from the Multiple Sclerosis Association of America

Boo! It’s October 31st, and MSAA would like to wish the entire MS community a safe and fun-filled Halloween.

Want to send your loved ones a similar wish?Free Cards from MSAA

For your enjoyment, we’ve created four free e-cards to let your friends and family know you’re thinking about them while also helping to spread awareness of multiple sclerosis and MSAA.

 

Click here to send a card.

 

Now Available from the MS Community from MSAA…MSAA Launches Mobile Site

MSAA is also pleased to announce the launch of our new mobile website, allowing users to have on-the-go access to many of the resources currently available on MSAA’s desktop website. The mobile website is another example of how MSAA continues to develop initiatives to improve lives today for the entire MS community.

 

You can find the mobile version of MSAA’s website at www.mymsaa.org on your iPhone, Android phone, or other smartphone.

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The Neuropsychological Evaluation for People with Multiple Sclerosis: Part II

By Dr. Lauren Strober

For many individuals, medical testing, especially testing for cognitive changes, may cause fear or anxiety.

How scary of a process is it?  For some, undergoing cognitive testing when one has already noticed a decline is very intimidating – many fear that noticing a change is not as scary as confirming there is an actual change.  But, like anything, knowledge is best and with MS, knowledge is the best way to tackle a variable, unpredictable disease.  Moreover, more often than not, individuals find that they are doing better than they think and that although there are some weaknesses, they also still have their strengths. Again, knowledge is power.

As far as the process itself, a full neuropsychological evaluation can last anywhere from three to five hours and is typically divided over a few days.  Cognitive testing can be extremely tiring and that is not just specific to MS.  Many patients report needing a nap after!  But, most neuropsychologists are aware of this and will offer breaks and other accommodations to make the experience as painless as possible. After the evaluation is completed, you will receive written and verbal feedback as to how you did and what the recommendations are based on your individual cognitive profile. Such feedback and knowledge of one’s abilities and difficulties can be very empowering and assist individuals with taking the right steps in assuring that they can tackle their MS and its symptoms head on!

If you feel that you can benefit from cognitive testing and/or are noticing changes in your thinking, do reach out to your neurologist or a neuropsychologist in your area today.

*Dr. Lauren Strober is a board-eligible clinical neuropsychologist with over a decade of clinical and research experience in MS.  She is a Research Scientist at the Kessler Foundation and presently holds a National Institutes of Health (NIH) grant examining the factors most associated with employment status in MS.

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The Neuropsychological Evaluation: Allaying Your Fears and Recognizing its Value for the MS Community Part I

By Dr. Lauren Strober

Many individuals with multiple sclerosis (MS) will begin to notice the subtle cognitive changes typically associated with MS.  Individuals may report being more forgetful, unable to multitask as well as they used to, or feeling as if their thinking is slowed down.  Some may say, “I feel as if I am just not functioning on all four cylinders.”  They would be right. In fact, anywhere from 43% to 70% of individuals with MS suffer from some degree of cognitive dysfunction.  Most often, it is slowed thinking or problems with memory that are most noticeable and known to have the greatest effect on day-to-day functioning – this can be anything from preparing a meal for the family, doing everyday tasks, or even successfully doing one’s work.

When cognitive symptoms begin to interfere with such tasks and one’s overall quality of life, it is best to consider speaking to your neurologist about undergoing a neuropsychological evaluation.  A comprehensive neuropsychological evaluation consists of a battery of cognitive tests assessing language, attention, verbal and visual memory, processing speed/working memory, and executive functions (e.g., planning, organization, reasoning) as well as a full psychological evaluation assessing things like mood, anxiety, sleep, and fatigue.  These latter factors are known to also play a large role in cognition and are, fortunately, reversible with effective treatment.  For instance, while slowed thinking is common in MS, consistent poor sleep or depression can also lead to cognitive disturbances during the day and further compound existing cognitive disturbances. Thus, proper identification of one’s current cognitive abilities as well as factors that can affect cognition (such as poor sleep) is the first step in taking appropriate steps in managing any cognitive changes associated with MS.

So, when is a neuropsychological evaluation right for you? Again, if you are noticing changes and feeling that they are beginning to impact your daily functioning and quality of life, you should consider having a neuropsychological evaluation.  This is particularly important if you are employed and/or are a student and can benefit from some recommendations and strategies as to how best maintain your job or schooling, while working to your strengths and minimizing reliance on your weaknesses. Formal documentation of such cognitive difficulties can also assist with obtaining appropriate accommodations at work or school.  Finally, some recommend completing a brief neuropsychological battery such as the Minimal Assessment of Cognitive Functioning in Multiple Sclerosis (MACFIMS) at the onset of one’s illness so that there is a baseline to which patients can better monitor the progression of their illness and cognitive changes associated with such.

If you think neuropsychological testing might be helpful for you, stay tuned for PART II on Wednesday to learn more.

Dr. Lauren Strober is a board-eligible clinical neuropsychologist with over a decade of clinical and research experience in MS.  She is a Research Scientist at the Kessler Foundation and presently holds a National Institutes of Health (NIH) grant examining the factors most associated with employment status in MS.

 

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Making Commitments When You Have Multiple Sclerosis

Before I got diagnosed with MS, I would make plans, mark off the ‘Attending’ box on RSVP’s that I received,and I could also just up and do something if there were plans made abruptly, without a second thought.

That’s not the case anymore; I can tell you that much. And I have a feeling I’m not alone on this…

Now, I’m not saying that since I got diagnosed with MS that I don’t want to attend certain events or go out with friends, etc. I still want to do those things; there are just different circumstances now.

I really hate cancelling plans that have been made or not attending something, (like a wedding) that I had replied I would be attending, but my MS isn’t on a “regular schedule.” I can’t tell people, “Well, on Monday, Thursday & Sunday my MS is not cooperative, so I can only do things on Friday & Saturday.” If only it were that easy, right?

So the reasons I don’t like making commitments to plans are because I don’t know how I’m going to be feeling on that day… or at that particular ‘part’ of the day. I know it seems as if I’m “blowing people off,” but that’s not the case. If I said I wanted to attend something, it means I really did. My MS is just not “allowing” me… Kind of like it’s grounding me, like my mom did to me when I was younger.

So now, when people invite me to do something that evening… or the upcoming weekend, I tell them… “I really want to! But I don’t want to make any promises, so let’s see how I’m feeling when the time comes.” For those people who are close to me, they understand my reasoning for saying this… others don’t, and I have to explain, which can be difficult with people who don’t have MS, or who do not have a lot of knowledge of the illness.

My main message on this blog… “Yes, I want to do things…. But sometimes my MS has other ideas that I can’t control!”

 

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Working for the Multiple Sclerosis Association of America

By Becky Remington  

Greetings from the South Central Region.  Last week, I attended a patient education program in Bentonville Arkansas, and as always, I feel like I have the most wonderful job in the world. One of the perks of my job is meeting amazing, warm, and caring people.   Some of these people have MS, some of them are family members and spouses, and some of them come to the programs with their best friend, who just happens to have MS.  And many times, as was the case this time, complete strangers sit together, start talking, share a meal together, talk some more, and exchange phone numbers or email addresses before the end of the presentation.

Last week’s talk was on Managing Stress and Anxiety.  The speaker, a psychologist from Dallas TX, was excellent, giving a lot of practical advice and tips to those that attended.  I have no doubt some of his stress relieving exercises will find their way in to people’s lives and make a difference in helping to keep some MS symptoms at bay.  But I also know that those who made new friends left with something even more valuable.

Becky Remington is MSAA’s South-Central Regional Director

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