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Advanced Care Needs

Find the information and resources you need to manage the challenges of advanced MS.

Rick
Diagnosed in 1991

Addressing Advanced Care Needs

The National MS Society is working to increase access to high quality, comprehensive and
coordinated care for everyone affected by MS, regardless of where they are in their MS journey. Learn how we are "Addressing Advanced Care Needs of People with MS and Their Families."

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Resource

Edward M. Dowd Personal Advocate Program

The Edward M. Dowd Personal Advocate Program aims to increase independent living capabilities and quality of life for people affected by MS whose health and safety are compromised by limited knowledge, understanding, and/or ability to access programs and benefits.

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Publication

Managing Progressive MS

An overview of symptom management, coping strategies when progressive MS makes the road rougher.

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Publication

SSDI Guidebook for People with MS

Developed to assist you in deciding whether applying for disability benefits is right for you and in navigating the complex application process.

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In this article

Although we have treatments to manage the disease course, they are only partially effective, which means that some people’s MS will worsen in spite of everything they and their doctors do to try and prevent it.

Many people ask themselves “Why did this happen? Did I choose the wrong doctor or the wrong medication…did I follow the wrong diet or the wrong exercise program…did I get too stressed out at my job?". But the fact is, MS progresses because that is the natural course of the disease.

While researchers are working and collaborating to identify new and better strategies to stop that progression, people whose MS has become more disabling—and their family members and friends—need information about how to manage the challenges they face.

Although MS is a progressive disease for many people, the rate of progression differs from one person to another. The hallmark of MS is its unpredictability—which means that the doctor can’t predict with any certainty how far or fast a person’s MS is going to progress or what the outcome is likely to be. However, there are some factors that seem to suggest a better or worse prognosis.

  • Several studies have shown that people who have few relapses (also called exacerbations or attacks) in the first several years after diagnosis, long intervals between relapses, complete recovery from relapses, relapses that are sensory in nature (i.e., numbness, tingling, visual loss), and nearly normal neurological examinations after five years tend to do better.

  • People who have early symptoms of tremor, in-coordination, difficulty in walking, or who have frequent attacks with incomplete recoveries, early development of neurological abnormalities, or more lesions on MRI early on, tend to have a more progressive disease course.

Taking these factors into account can help you and your family plan more effectively for the future.

Identifying options

The key message to anyone living with advanced MS is that there is always more that can be done to make the situation better.

  • If your doctor has “nothing more to offer,” it’s time to find another doctor (.pdf) - who will partner with you and other members of the healthcare team to manage your symptoms effectively and maintain your quality of life.
  • The National MS Society (1-800-344-4867) can recommend healthcare professionals with knowledge and competency in MS care, as well as other resources in your area.

Learning to redefine control and independence

Sometimes MS symptoms can progress to the point that they significantly interfere with daily activities. Changes like this can threaten your self-confidence and feelings of self-worth. When this happens, remember that maintaining control and independence in everyday life doesn’t necessarily mean doing everything the same way you did it before.

By allowing yourself to do things differently,

  • you gain access to the world of assistive technology (AT)—an array of energy- and labor-saving tools and devices that allow you to stay active and productive.
  • Rehabilitation professionals can help you navigate the world of AT and suggest ways to modify your environment at home and at work to optimize control and independence.
  • Complex rehabilitation technology (CRT) are medically necessary products — such as individually configured manual and power wheelchairs and seating and positioning systems — that enable people with significant disabilities including progressed MS to have their medical needs addressed and remain independent. Essential components of complex rehab technology include “accessories" such as customized seat cushions, tilt-in-space features, and head and trunk support systems. Some CRT can be covered by insurance.

Dealing with emotional ups and downs

Depression and other mood changes are common in MS, and grief is a normal reaction to the changes and losses that can accompany advanced MS. Building resilience and getting the support you need to deal with these emotional challenges is essential to maintaining your quality of life.

Avoiding complications

People with more advanced MS are at greater risk for certain kinds of complications. Examples include:

  • Osteoporosis - loss of bone density related to reduced mobility and weight-bearing exercise, as well as treatment with corticosteroids
  • Pressure sores -  damage to the skin caused by lack of mobility or long hours in a bed or wheelchair
  • Aspiration pneumonia - a problem caused by swallowing problems that allow food particles in to the lungs
  • Severe bladder or kidney infections - resulting from chronic urinary dysfunction

To reduce your risk of complications, schedule regular check-ups with your MS doctor and report any unusual fevers or changes in your symptoms.

Meeting caregiver challenges

Providing ongoing care and emotional support for someone with advanced MS is not easy—no matter how much one cares about that person. For many, it can begin to feel like a full-time job. Paying attention to your own health and well-being is essential to being able to do it for someone else. Learn more about the resources that are available to help you in your caregiving role.

Planning for the future

As MS progresses, caregivers at home sometime cannot continue to provide the physical help needed.

Family relationships often improve when family members no longer are primary caregivers.  Without the stress on the caregiver to be constantly available and do very physical work, and without the person with MS of having to depend on the family member, they can go back to a more normal family relationship.

People with MS often move to a nursing home when their health declines rapidly and health problems require professional care.

Staff members in nursing homes have the training and experience to safely help people transfer from a wheelchair to the bed, toilet, or shower, and they’re available 24/7.

Thinking about moving to a nursing home can seem scary and stressful. But the time to do it is before you have to move. Research and understand your options. A plan that will give you choices down the road can make it easier to function and cope today.

Relief from isolation is another reason to make the move. Many nursing homes offer physical therapy programs, activities, transportation to continue community-involvement, and more.
Treatment options and resources for people living with advanced MS
Featured Video

Advanced MS - National MS Society

Aaron Miller, MD, describes the available treatment options and resources for people living with advanced MS, and highlights the ongoing research efforts to repair the damaged nervous system.

Publication

Caring for Loved Ones with Advanced MS — A Guide for Families

The purpose of this booklet is to provide information, caregiving tips, and support to families providing significant daily care to a family member with MS.

Download the Guidebook

Download Guidebook
Publication

Adapting: Financial Planning for a Life with MS

A 72-page publication addressing financial organization, planning, insurance options, employment concerns, and benefit issues important to people with MS and their families. Also provides information and strategies to help families plan wisely for the future and meet financial challenges that often accompany life with MS.

Download the Guidebook

Download Guidebook

Advanced Directives

Find out how advanced directives (living will and health care proxy) can help you — whether or not you have MS — maintain control of your healthcare and other decisions.

Learn More

Learn More

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