Tag: Multiple Sclerosis

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.

The Life Impact of Multiple Sclerosis

Alex BrejchaYears ago, I had the privilege of meeting Alex Brejcha while we worked together to find an accessible home for he and his wife, Tatiana. Alex was prepared to purchase a home and we had funding for modifications, yet the challenges in finding a home that could be modified for accessibility were overwhelming to say the least.

Yet Alex never gave up. In the process, his persistence, positive outlook and sheer determination were a lesson for us all.

This week I am pleased to introduce Alex as our guest blogger to share his personal thoughts about living with M.S.

Diagnosis and Early Symptoms

M.S. is a neurological disorder impacting the ability of nerves to transmit signals from brain to body. The biggest problem is that there are a variety of different ways that this impacts people.

In my case, the initial diagnosis was made in 1980 when tingling in the hands and coordination impairments immediately had a major impact on my life. I was an art student at Temple University in Philadelphia with a gallery interested in my work, but I did not have enough pieces yet for a show.

A combination of symptoms complicated things. I had visual problems which fortunately cleared up, but increasing coordination problems ended my art career hopes, and walking problems diagnosed in 1980 progressed to paraplegia between 1980 and 1985.

The good and bad of research

In retrospect I realize that part of this was my own fault, because another aspect of M.S. is that Affect has a very real Effect. In other words: attitude is a bitch, if you forgive the language.

To clarify: I was very fortunate to work graveyard shift at a major teaching hospital in Philadelphia for 27 years. We had an excellent medical library, and the first thing I did upon my diagnosis was go to the library to research what M.S. was.

This was a big mistake! What I failed to realize was that medical journals concentrate on the worst aspects of a disorder. As I was reading, I made the mistake of believing that what “might” happen “would” happen — and my body happily went along with it!

This is a crucial aspect of Multiple Sclerosis which people need to understand if they are diagnosed. This is a condition with a variety of forms ranging from mild to more progressive types such as I have.

Alex in Plane

Life is what you make it

It is critical to work closely with a neurologist specializing in this condition in order to take advantage of improving treatment paradigms that are being developed. Just because you are diagnosed with this disorder, it does not mean an end to your life.

As I wrote, I worked for 23 years in a wheelchair and drove independently — first in cars with hand controls, and later in a variety of converted vans. One advantage of the diagnosis was that I had a handicapped parking spot right outside the entry to the hospital and I didn’t have to pay for parking in the hospital garage.

To borrow a cliché: life is what you make it!

I never would have had the relationships I have been lucky to have (including a wonderful five year marriage to a woman I still live with), if I had not been diagnosed with M.S. The truth is, before M.S. I was a terminally, overly shy nerd, afraid to approach a woman.

But when everyone is staring at you anyway: what the hell?

To access additional resources on M.S. and learn more about Alex go to his website at Brejcha Personal & disABILITY Resource Site .