Tag: multiple sclerosis society

Managing Your MS Support Network

Multiple Sclerosis Awareness Week, March 11-17, 2013

Over the past few weeks we have talked about the impact of invisible symptoms of MS. Symptoms can impact a person’s job, relationships, and ability to manage independently. Some resources to help provide support are listed below.

Medical Team

The medical team for a person with MS should include a variety of professionals. The neurologist is usually the primary healthcare professional and can often be the gateway to other professionals through referrals.

The MS Clinical Care Network: Available through the NMSS website, this resource offers information tailored specifically to different professionals. Clinicians can also sign up for a professional e-newsletter.

Partners in MS Care: Health care professionals recognized as Partners in MS Care demonstrate knowledge and experience in MS care, have a special interest in treating people living with MS and work closely with the National MS Society. To find a Partner in your area visit Partners in MS Care.

Emotional Support

Emotional support or services can be critical to keeping a family afloat. It may be important to have a therapist familiar with MS or chronic illnesses.

The National MS Society maintains a database of professionals with experience and interest in treating people with MS and a network of peer-led support groups. Please call 800-344-4867 to request referrals in your area.

Msconnection.org is a website for people with MS to connect with other people with MS. The site offers one-to-one peer connections, forums and resources.

Caregiver.com and the National Family Caregivers Association both offer a variety of resources to support caregivers.

Your own network

Some people have a hard time accepting help and an even harder time telling people what would truly be helpful. There are programs to help coordinate the efforts of caring friends and family and to guide them toward what would be most useful.

CaringBridge is a free service that connects and updates your network about ongoing health status, treatment, surgeries, progress in therapies and recovery. In return, family and friends give support and coordinate volunteering for tasks.

Lotsa Helping Hands is a free web-based service that allows family and friends to more easily assist with household tasks. It’s an easy-to-use, private group calendar, specifically designed for organizing helpers. It’s also a place to keep your network informed with status updates, photo galleries, message boards, and more.

I hope you found the information about MS posted this month to be informative and interesting. Please feel free to contact the National MS Society at 800-344-4867 with any additional questions.

March 11-17th is MS Awareness Week!!! It is the perfect time to join and help build the MS Movement. Visit msnewengland.org and look for the MS awareness week banner for ideas about how can get involved!

Multiple Sclerosis Caregivers Can Make a Difference

MS-caregiverOver the past three weeks, we have discussed some of the invisible symptoms that are associated with Multiple Sclerosis (MS). Challenges that people with MS may be facing every day, but others aren’t aware of. Awareness of these invisible symptoms is especially critical for caregivers.

We focused on depression and cognition, but other invisible symptoms can have a significant impact on daily activities and quality of life. Symptoms like pain, visual disturbances, fatigue, and bladder dysfunction might go unnoticed by friends and family, and it is extremely important for caregivers to have awareness and knowledge of them.

The simple fact is when invisible symptoms are addressed, it can truly make a difference.


Stepping In

When MS impacts a person’s ability to manage independently, someone may need to step in to help. That someone can be a spouse, partner, an adult child, parent, sibling, or even a close friend.

The key to being a good helper is knowing what the person needs and invisible symptoms can pose a challenge to understanding those needs. Symptoms can even change day to day, creating more confusion about the appropriate types and levels of support.

Two Way Communication Is Vital

Bob’s* wife, Paula, has MS and he has been her primary caregiver for more than 20 years. Paula has used a wheelchair for 15 years and most days Bob feels confident helping her dress and transfer to her chair. But when her MS symptoms flare up, Paula can have new symptoms of pain and double vision.

Bob shared that he never knows what each day will bring, and he relies on Paula to tell him how she is feeling so that he can adjust their routine. Two-way communication is important, as it makes it easier for both Bob and Paula to have a clear understanding of needs and expectations.

Caregivers Taking Care Of Themselves

It is important to remember that the caregiver must take care of their own physical and emotional health too. The risk of caregiver burnout can be very real, but there are steps to help avoid or reduce it.

Seeking emotional support and arranging for additional help can allow the caregiver to focus on their needs and remain a strong support for the person with MS.

The National Family Caregivers Association and   www.Caregiver.com are organizations that focus on supporting the caregiver. The National MS Society also offers information and resources for caregivers. You can view these materials at National MS Society Caregiver Resources Page or call the Society’s information and resource line at 800-344-4867.

Please join us next week as we review some helpful resources for living with MS.

*Names have been changed.

Supporting People with MS Beyond Their Physical Needs

Dawn RussoThis week Dawn Russo, Senior Program Manager of the National Multiple Sclerosis Society, will focus on cognitive changes in MS. Like depression, cognitive changes may be invisible to family and friends. But for the person experiencing them, the impact can be stressful and far-reaching.

Understanding the cognitive impact

Approximately 50% of people with MS will experience some cognitive impairment because of the MS. Impairments can include memory problems, difficulty with attention and concentration, processing information slower, and/or issues with problem solving, and organizing. For most, these issues will be mild to moderate. However, for a small percentage cognitive impairments can become severe and impact daily living.

Individuals can have many reactions to cognitive changes: embarrassment, frustration, depression, and/or anger. They may choose to ignore or minimize them.

Keeping control, but asking for help

I am currently working with Joe, a 55 year old man with MS, who wanted to apply for funding to have a stair lift installed in his house. Always independent, it was hard for Joe to ask for help. Despite offers of help from his friends, Joe insisted he could manage the application on his own.

Several weeks later, Joe had not completed the application and had lost one of the documents. It was difficult for Joe to admit he was struggling with the paperwork he could once do without help. Before offering help, I made sure Joe knew he would still be the decision-maker and have control over this process. Once we agreed how to work together, we were able to complete the application and approve his request without further delay.

Being aware of cognitive changes

woman with MS making decisions
©2010 National MS Society

Some possible signs of cognitive changes include: poor follow through of agreed upon action items; forgetting details of conversations; missing pre-scheduled appointments; etc. The impact can be far reaching, ranging from an inability to balance a checkbook to remembering to take medications to missing a deadline at work.

If unaddressed, cognitive impairments could lead to home safety issues, jeopardize a person’s employability and/or ability to live independently. Some people with MS fear they will be fired if co-workers learn about their cognitive changes, and they leave work prematurely. In other cases, family members may question the person’s ability to manage on their own or want to take away responsibilities.

A role for family and friends

Like other invisible symptoms, it may be easiest to deal with the issue once it’s out in the open. Engaging family and friends and educating them about MS may be the biggest strategy a person can implement.

Trying to support a person without knowing what kind of help they truly need is an uphill battle. In working with Joe, I didn’t know if he was facing challenges with reading the application, filling it out online, coordinating bids from contractors, or paying the balance.

In further conversations,, I learned he was overwhelmed by the process and struggling with organizing the supporting documents that were required to apply for financial assistance. He needed assistance breaking down the application in simpler steps and a plan for addressing each step. Once we created that plan, Joe felt less stress and successfully completed the application.

There are strategies and treatments options that can be explored to help manage these symptoms. Addressing cognitive issues may include rehab services, assistive technology, organizational strategies, and medication. The National MS Society has further information on cognitive resources on our website and in print.

I hope you will join us again next week when we look at the impact of invisible symptoms on caregivers.

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.
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.

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.

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

Resources from MS Society Offer Support When Facing Challenges

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.

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

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.

Living with MS; 10 Years Later

woman riding bicycle with young boy following on scooter

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.

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

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.

Understanding Multiple Sclerosis

Logo of the Multiple Sclerosis Society of Greater New England 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.

Dawn Russo
Dawn Russo

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.