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.
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.
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
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.