How the My MS Manager App Helps Manage MS

Posted on June 24, 2016 by MSAA

In 2014, MSAA partnered with app developers @Point of Care to update the My MS Manager mobile app – making it a much better tool to not only help you manage day-to-day life with MS but to also help facilitate shared decision making between you and your doctor.

More than 7,000 people affected by multiple sclerosis currently use the app to record and track their specific MS disease-related information, such as daily activities, fatigue scale records, medications, and other relevant information. The app organizes this data into useful charts and reports that can easily be shared with your doctor and healthcare team.

Earlier this year, @Point of Care and MSAA surveyed users of the app to see how they were using it and if it was effective in helping manage their MS. This data was presented earlier this month at the 2016 Consortium of Multiple Sclerosis Center (CMSC).

Results from the survey of more than 1,300 active monthly users showed: Capture

77% utilize the app daily or weekly

80% state the app helps them track how well they are doing

78% reported that regular use of the app improved their ability to discus and manage their MS

70% have a sense of improved well-being as a result of using the app

75% reported better management of their fatigue by using the app

73% discuss and share their app records with their doctor to improve MS management

86% reported they are motivated to discuss management of their MS with their doctors as a result of using the app

For more information and to download the My MS Manager app for free, please visit mymsaa.org/mobile.

Highlights from the 2015 Annual Meeting of the CMSC

Posted on July 15, 2015 by MSAA

MSAA has posted a new online article providing highlights from this year’s Consortium of Multiple Sclerosis Centers’ Annual Meeting held in Indianapolis, Indiana in May. MS experts from around the country attended this exciting conference where the latest findings in MS research, treatments, symptom management, and patient care were presented.

Topics highlighted in this article include updates on MS disease-modifying therapies and findings from several cognitive and psychosocial studies. Various lifestyle factors such as diet, nutrition, and exercise are addressed in detail as well. The article also provides information on other topics of interest, such as diversity in multiple sclerosis, caregiver stress, gut microbiome, and more.

Read the full article on highlights from this year’s Consortium of Multiple Sclerosis Centers’ Annual Meeting.

If you missed MSAA’s article summarizing data presented at the American Academy of Neurology’s 2015 Annual Meeting in April, please check it out here.

Pushing the Limit When You Have Multiple Sclerosis

Posted on June 23, 2014 by Samantha Schech

Physical exercise for individuals with multiple sclerosis (MS) has been a hot topic over the last few years. While exercise is always encouraged to promote a healthy lifestyle and to increase physical function, many are still unaware of the types of exercise that can benefit those with MS.

At the Consortium of Multiple Sclerosis Centers (CMSC) conference last month, I attended a number of wonderful programs regarding exercise and MS, affirming the importance of an exercise routine. Many discussions were had regarding the level of physical activity and ways to work and improve the body’s ability.

In a recent article published by the Rocky Mountain MS Center, Dr. Timothy Vollmer discusses the importance of pushing oneself to the point of fatigue once a week during exercise. Similar to how a person might train for a marathon or endurance sport, Dr. Vollmer explains that when exercising using a normal routine, in order to see improvement one needs to push the limit of exertion once a week. By pushing the body’s limit, the body adapts and grows, making the activity less strenuous over time.

In many meetings at CMSC, researchers also discussed the idea of working the body to physical exertion. This is a major change in the minds of those in the MS community. Although the importance of exercise is stressed, research has not yet described the level of exercise that may be effective. I look forward to seeing how the paradigm shifts from “taking it easy” to “pushing beyond your limit” and what the research has to offer the MS community.

It is always recommended to start and continually monitor your fitness routine with a professional such as a physical therapist (PT). The PT can help determine your body’s capabilities and knows what your body’s limits are. A safe and effective fitness routine may help to improve physical function and promote a better quality of life.

MSAA Attends 2014 Consortium of Multiple Sclerosis Centers

Posted on June 2, 2014 by MSAA

Several members of the MSAA team traveled down to Dallas, Texas last week for the 2014 meeting of the Consortium of MS Centers (CMSC). The meeting had approximately 2,000 registered participants (the largest CMSC ever) ranging from doctors, nurses and researchers, to nonprofit organizations like MSAA.

MSAA set up our booth and reached out to attendees to try and ensure that providers are aware of our services and can refer to them as needed.

Some of the partners MSAA works with were also in attendance, including the vendors who work with MSAA on our Cooling program:

The annual CMSC meeting is one of the best opportunities for education, sharing, and collaboration for professionals who serve the MS community. MSAA staff attended a number of helpful classes, lectures, and interactive sessions on everything from research and study updates related to causes and treatments to efforts to improve quality of life and comprehensive MS care.

Stay tuned to MSAA for more information and knowledge learned at the 2014 CMSC.

Consortium of MS Centers Annual Meeting – Day 1 Recap

Posted on May 30, 2013 by MSAA

Greetings from Consortium of Multiple Sclerosis Centers (CMSC) Annual Meeting!

Senior Director of Programs Peter Damiri at the MSAA booth for CMSC 2013

This week (May 29- June 1, 2013) I have the pleasure of attending the 27^th CMSC Annual Meeting. It is easy to get into the mindset that the MS community is small – after all, it is always mentioned that MS is a rare disease. However, the CMSC Annual Meeting is a great example of just how many people care about issues related to the multiple sclerosis (MS) community – from the neurologists and nurses who practice in the MS clinics, to the social workers, patient advocates, and non-profits dedicated to MS. The CMSC meeting is a reminder that many people have dedicated their lives to altering the future of individuals diagnosed with MS, to try and ensure a better future.

Today (May 29), Dr. Robert Herndon provided an introductory speech welcoming everyone to the conference. He gave an overview of MS called “60 Years of Advancement In MS Management.” He explored just how far research has come since 1950 both in terms of the changes in the diagnostic process, “dogma’s” of the time period about MS, and major advances in treatment. It is astounding to think of just how far we have come even though we have a way to go. The dedication of the professionals in the room was apparent, this is an important cause and one that 1,800 attendees at CMSC believe in.

Of the many other programs available today I was also able to attend an educational session called “Pain in Management in MS” with speakers Karyn Seebach, PsyD and Heidi Maloni, PhD, ANP-BC-MSC. Dr. Seebach spoke about psychological approaches in MS pain management, and Dr. Maloni provided an overview of MS pain management and also the controversial cannabis use in MS pain. Many strategies were discussed including looking at the whole person and treating pain as a complex issue which requires a “biopsychosocial” approach (biological, psychological, and social approach). To read more about MS pain management please see our recent issue of The Motivator.

Tomorrow there are a number of other engaging programs, so stay tuned for another CMSC recap later this week!

Another shot of Senior Director of Programs Peter Damiri at the MSAA booth for CMSC 2013

MS News Update – Highlights from CMSC 2012

Posted on July 30, 2012 by John MSAA

Highlights from The Consortium of Multiple Sclerosis Centers’ Annual Meeting

MSAA has posted a new online article giving highlights from this year’s Consortium of Multiple Sclerosis Centers’ Annual Meeting. MS experts from around the country attended this exciting conference, where the latest findings in MS research, treatments, symptom management, and patient care were presented.

Topics highlighted in this article include three new drugs presently under review by the FDA (teriflunomide, dimethyl fumarate, and alemtuzumab), while also giving the results of the Copaxone® study with lower-frequency dosing. The article explains the difficulties in understanding progressive forms of MS, presents the findings through different types of brain imaging, and provides information about a new study. Biomarkers, surrogates, and cognition are addressed in detail as well.

Read the full article on highlights from this year’s Consortium of Multiple Sclerosis Centers’ Annual Meeting.

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