December, 2011

Month: December 2011

28
Dec
2011

A Network of Resources Provide Support for People with MS

Jane’s story this month illustrated just one experience with MS; the unpredictability of the disease causes everyone with MS to experience it in a different way. But many people also struggle with similar challenges. MS attacks the central nervous system of the individual diagnosed, but its impact has a ripple effect on their family, career, life plan, and the community.

This week we share the comprehensive resources available to all people with MS, their families, friends, and providers.

To learn about multiple sclerosis:

The National Multiple Sclerosis Society website has extensive information on MS.
www.nationalmssociety.org
You can also call our Information Resource Center at 800-344-4867.

To learn about local programs:

The Greater New England Chapter serves 19,000 individuals and families affected by multiple sclerosis in Maine, Massachusetts, New Hampshire, and Vermont.
www.msnewengland.org

If you or a loved one is Newly Diagnosed:

You can receive information through our Knowledge is Power Program, a free, at-home educational series written by Dr. Rosalind Kalb, a highly regarded author and psychologist. Receive new topics each week in the convenience of your home.
Knowledge is Power

If you would like to speak to a peer with MS:

The Peer Support Program offers information, emotional support and encouragement via the telephone to individuals living with MS and their families. The program matches trained volunteers with individuals looking for support with their own MS experiences.
Peer Support Program

If you would like to learn about the Greater New England Chapter’s Financial Assistance Program:

We recognize that MS is a costly disease and encourage all individuals who need help to apply. Any person diagnosed with MS, living in Maine, Massachusetts, New Hampshire or Vermont is eligible. The Chapter can provided limited funding in select categories.
Financial Assistance Program

If you feel you need more comprehensive support:

Home LINKS is the Greater New England Chapter’s short-term care management program. The goal of Home LINKS is to promote enhanced quality of life and independence for people living with MS. This program helps by providing information and referral, hands-on assistance, and financial assistance.
Home LINKS

If you are a professional who works with people with MS:

The National MS Society’s Professional Resource Center is the most comprehensive library of MS information in the world, offering information, publications, clinical consultations, and literature search services.
Professional Resource Center

Dawn Russo, Senior Program Manager of the Greater New England Chapter of the National Multiple Sclerosis (MS) Society, guest Blogger

16
Dec
2011

Resources from MS Society Offer Support When Facing Challenges

categories: Multiple Sclerosis

Over the past few weeks, we have learned from Jane’s story that life with MS can be unpredictable and challenging at times. This week we look at Jane, now 25 years since her diagnosis, as she shares the community of support that helped her each step of the way.

Secondary Progressive MS

Twenty years after her diagnosis, Jane’s symptoms were worse and she was recovering less between attacks. She now had Secondary Progressive MS (SPMS), a different course of the disease than she was diagnosed with initially.

Ninety percent of people diagnosed with Relapsing-Remitting MS will develop SPMS within 25 years. SPMS is characterized by less recovery following attacks; persistently worsening functioning during and between attacks; and/or fewer attacks accompanied by progressive disability.

Accessing resources through the MS Society

Though Jane’s employer was supportive, she eventually decided to leave work due to cognitive issues. Unfortunately, her husband was then laid off and they had no income or health insurance. When Jane contacted the local MS Chapter for help, the Information Specialist recommended care management services through the Home LINKS Program to help her access local programs that could provide support.

With input from Jane and her husband, the Care Manager created a “care plan” which identified issues including:
• Financial concerns
• Insurance
• Occupational therapy evaluation
• Wheelchair
• Isolation

The care manager worked with Jane and her husband for several months researching programs, helping with applications, and stabilizing their situation. Jane also applied to the Chapter’s Financial Assistance Program to help pay for vehicle modifications, which increased her independence.

Becoming involved

Once their situation was stabilized, Jane wanted to get more involved with the National MS Society. After such a stressful year, she had fun with her family at the Chapter’s Holiday Party and her daughter was able to meet other teens who have a parent with MS.

Motivated by this feeling of community, Jane reached out to friends and created a team for the MS Walk. Her team now has 20 members and enjoys a great day walking together to fight MS. Jane feels optimistic knowing she is helping to contribute to the almost 325 individual research projects worldwide supported by the Society.

Next week we will introduce the wealth of resources available on our website at www.msnewengland.org . You will also learn more about how you can join us as we move forward toward a world free of MS.

14
Dec
2011

Living with MS; 10 Years Later

categories: Multiple Sclerosis

Last week we met Jane as she was diagnosed with Multiple Sclerosis (MS). Ten years later, Jane has found that many of her choices in life now require more thought, more planning, and more research; but she still has choices.

Use of medications

Jane’s doctor recommended that she start one of the disease-modifying medications. While there is no cure for MS, these drugs help slow the progression of MS and reduce the number of flare-ups. There are currently eight medications available. Though the drug doesn’t make Jane feel better, and she had to get used to the needles, she is committed to her treatment plan.

A wife and a mother

Jane’s other concern was her family. She was worried about pregnancy and caring for a baby due to her struggles with fatigue. She contacted the National MS Society for information and through the Chapter’s Peer Support Program, she connected with a mom who has MS and learned through someone else’s experience.

Jane’s daughter, Mary, was born 5 years ago. Jane experienced a flare-up of her symptoms six months after the birth, which was successfully treated with steroids.

Like many people, Jane and her husband sometimes feel that MS is the uninvited guest in their house. Though unspoken, it is part of every conversation. Jane found support from her peer counselor, who also felt the impact of MS on her marriage. Jane’s husband finds it helpful to speak with a therapist who has experience with chronic illness.

Jane feels impact on her career

It was hard to coordinate the daycare schedule, manage her fatigue, and keep up with the fast pace of her job as an ER nurse. Jane called the Chapter about her situation. The staff person consulted with her, providing information, discussing options, and supporting Jane.

It helped to have someone guide her through terms and programs, like the Family Medical Leave Act (FMLA), disclosure, and her rights as someone with a disability. She felt confident going to her employer to discuss possible accommodations and together they found a solution.

Jane accepted a new position that involved more desk work and no night shifts. She admits it’s less exciting, but she also takes less sick time now and spends more time with her family.

Join us next week as we visit Jane one final time to see another example of life with MS and learn more about the programs and services available from the National MS Society.

07
Dec
2011

Understanding Multiple Sclerosis

categories: Multiple Sclerosis

This month I am pleased to introduce our guest blogger, Dawn Russo, Senior Program Manager of the Greater New England Chapter of the National Multiple Sclerosis (MS) Society. Dawn will provide a better understanding of MS and the vast array of services available.

There are approximately 400,000 people with multiple sclerosis (MS) in the United States and most of us know someone who has been diagnosed. MS is a chronic, often disabling disease that attacks the central nervous system. Symptoms may be mild such as numbness in the limbs, or severe, such as paralysis or loss of vision. The progress, severity, and specific symptoms of MS are unpredictable and vary from one person to another. From the list of possible symptoms to its impact on a family, MS is not a simple disease.

Let’s follow Jane as she is diagnosed with MS

Jane is 32 years old. For the past week, she has experienced double vision. When her neurologist completed a full medical history, Jane remembered several years earlier that her hand had felt numb for a week. Numerous tests were given over a period of several months including an MRI that showed two lesions on her brain; a diagnosis of MS was made.

Jane was overwhelmed by the news and afraid for her future. Would she be able to continue working? Have children? It seemed like she had to learn a new language to understand all the terms she was hearing.

Jane searches for information and support

Jane contacted the Information Resource Center (IRC) at the National MS Society, Greater New England Chapter. She was unsure what to ask but the Information Specialist started at the beginning. Jane was sent basic information about MS and received a weekly packet through the Knowledge is Power Program. She joined a teleconference for people who are newly diagnosed and learned about symptom management and disclosing her MS.

Over the next few years, Jane stayed informed by reading the Chapter newsletter, attending workshops, and calling the Chapter with questions. She joined a support group and the Chapter helped her find a yoga instructor familiar with MS.

Living with MS

Jane continues to have periodic exacerbations or flare-ups, during which time she experiences a worsening of her symptoms. When this happens, Jane takes time off from work and is treated with steroids. But even with these setbacks, Jane has learned she can still work and have children.

Join us next week as we learn how Jane is doing 10 years later and how the National MS Society supports people living with MS to lead full and enriching lives.