The Multiple Sclerosis Association of America Offers a New Resource to Guide the MS Community in Accessing Vital Information

The Multiple Sclerosis Association of America (MSAA) is pleased to announce the launch of My MS Journey, a new website addition accessed at mymsaa.org/journey. My MS Journey has been designed to guide individuals with multiple sclerosis (MS) to the relevant information that best matches their needs – whether newly diagnosed or coping with the disease for many years.

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MSC Publishes Summary Paper on DMTs

On August 20, 2014, MSAA posted a news item announcing that the Multiple Sclerosis Coalition (MSC) had published a paper detailing the current evidence that supports the FDA-approved disease-modifying therapies (DMTs) for the long-term treatment of multiple sclerosis (MS). Experts from member organizations of the MSC, including the Multiple Sclerosis Association of America (MSAA), collaborated to write this paper expressly for healthcare providers and the health-insurance industry, using a highly detailed and scientific style. The primary goal of developing this paper is to promote early and ongoing access to all of the presently approved DMTs for individuals with MS.

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Cover Story: Care Partners

Most major life changes come with advance notice. Weddings are preceded by engagements. Births follow pregnancies. Graduations come after education. Disability, however, arrives with no notification. While MS sometimes enters a life in stages, the onset is still a surprise.

Becoming a care partner is the same way. An individual suddenly becomes responsible for another with no notice. Even after years of caring for another’s wellbeing, the effort can be daunting, especially without the right direction.

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Part 1: THE ROLE OF THE CARE PARTNER

Since each person in a care partner relationship is unique, needs and responsibilities can vary. Some care partners may be required to handle household responsibilities, such as cleaning, cooking, laundry, errands, grocery shopping, or meal preparation. Others might need to drive children to school and activities, or take their loved one to appointments with hairdressers or medical professionals. Sometimes, care partners must learn to use newer technology – and they might teach these skills to the person with MS. Handling business, legal, or insurance issues can also fall within the duties of a care partner.

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Stress Reduction Resources

Miriam Franco, MSW, PsyD, emphasizes the importance of learning quick and effective means of stress reduction for both the care partner and the individual with MS. “Care partners are known to increase their risk of illness because they neglect their own health, don’t take time to exercise, or don’t take breaks. Stress-reduction techniques can easily be practiced at home, waiting in a doctor’s office, or together at the end of the day.”

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PART 2: Care Partner Health

Phil, who had left hip replacement surgery in 2011, now has problems with his right hip. “Shelley’s health was better the last time I needed surgery and she was able to care for herself. I can’t get the other hip fixed because I can’t go to the hospital and leave Shelley alone.”

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PART 3: Day-To-Day Living

Assistive-care facilities are meant to provide a higher level of care than some individuals with disabilities can receive at home. However, Dr. Weigel says that some of the assistive-care facilities she has seen may not be appropriate for younger people. “In such instances, the level of activity and social interaction isn’t the same as it is for elderly people. This can cause depression and social isolation.” For this reason, she recommends taking the steps needed to allow a loved one to live at home longer.

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Up Front: New Program Initiatives

At MSAA, we are working on several program initiatives to help individuals with MS access timely and vital information. One of these projects, My Health Insurance Guide, is a specific section on our website dedicated to the rules and changes related to the Affordable Care Act (ACA), Medicare, and other insurance options. More details on this web-based initiative can be found in the Program Notes column on page 42 of this issue.

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